# Mommas with Lyme Disease <3



## Jeanne D'Arc (Apr 7, 2007)

I Decided there were enough people around here
suffering from CFS , Lyme and Fibro to start a tribe.

I am sure many of you have heard that many who
are diagnosed with CFS test positive for Lyme or
Mycoplasma. I have tested positive for the Mycoplasma
and am preparing to get an Igenex test done (for Lyme)

I am not sure how long I have had it, perhaps since
I was a child. I want this group to focus on ways
to get WELL. I'm pretty sure I am beyond the realm of
abx, but that is certainly something that can be discussed.

Currently all I have really tried is Glyconutrients, and
when taken consistently,they keep me somewhat functional
as long as I get enough sleep and stay away from carbs.
However I still suffer from _allot_ of fatigue (main symptom),
pain(fibro pain ), and sleep intolerance. If I don't get
_allot_ of sleep every night I literally fall apart.

From my research it seems that some of the most aggressive
protocols for Lyme aside from abx is Rife, Salt/C, and Glycos.
I imagine all three together would be ideal. I have also heard
certain herbs and ozone can be helpful on top of a nutrient
dense diet.

I have just started the Salt C protocol myself and I think I am
herxing, it has helped alot of people but I am still very early
in the process.

Welcome!







:

Btw...any of you get an increase in fibro pain during ovulation
and menses?


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## fortunecookie (Mar 20, 2007)

Just wanted to say I have/had Lymes.







:


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## Jeanne D'Arc (Apr 7, 2007)

Hi!

How ya doin?

I wonder where all the Lyme/CFS/Fibro mommas are?
I've seen so many posts in regard to these ailments...

I'm glad to see you are well









I'm working on alleviating my chronic condition.


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## PrayinFor12 (Aug 25, 2007)

I'm here!
I got bit my a blood-thirsty Lyme-carrying blankity-blank back in May. Life's been so fun since then!









I'm glad to see someone else is doing that low-carb thing. I'm doing it too now, along with a bunch of funky supplements and an antibiotic. The only thing I actually understand the point of is the antibiotic. But my doc is registered with ILADS, so I figure he _must_ know what he's doing.

What's fibro and what's the Lyme connection?


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## Jeanne D'Arc (Apr 7, 2007)

Quote:


Originally Posted by *PrayinFor12* 
I'm here!
I got bit my a blood-thirsty Lyme-carrying blankity-blank back in May. Life's been so fun since then!









I'm glad to see someone else is doing that low-carb thing. I'm doing it too now, along with a bunch of funky supplements and an antibiotic. The only thing I actually understand the point of is the antibiotic. But my doc is registered with ILADS, so I figure he _must_ know what he's doing.

What's fibro and what's the Lyme connection?


Fibro is closely connected ( basically the same thing as ) chronic
fatigue syndrome. There are a few camps of thought, one is
that the brain is causing the painful symptoms and the fatigue
is depression. One of the others is latent Epstein Barr Virus infection
, candida and other things. There is another camp which claims
most cases of Fibro ( which is the muscle pain tied to CFS ) is
really Lyme. Not that there is also Fibro, CFS and Lyme but that
these "names" are really caused by these pathogens.

Sorry I am a bit tired right now I hope that made sense.

Oh and....btw.


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## PrayinFor12 (Aug 25, 2007)

Hey Jean,
Glad you bumped us.

I've had time to learn more about fibro lately as dh's aunt has it. I'd never heard the theory that it's critter-caused too. If so, it's totally being treated wrong, isn't it?

Since being on this thread last, I've gotten pregnant (due Aug). Even though it's awesome, it adds a whole new health stress / complication.

Have you been pregnant with Lyme or known anyone else that has?


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## Jeanne D'Arc (Apr 7, 2007)

At first i didnt know about the pathogen theory behind Fibro or CFS.
But now that I am familiar with it it makes complete sense.

Many CFS/Fibro sufferers test positive for Epstein barr and Lyme,
many more even test for chronic candidaisis. Other types of
tests show lowered immune function, adrenal damage, joint
problems, and severe hormone distruption.

I do know a few well people who had lyme and treated it with
alternative methods. I also belong to Lymestrategies on yahoo
groups. Again , many people do find relief with abx but you need
to be at a specific stage in the infection. Lyme is not something
that kills most people, most live with it chronically. This however
does not lessen the amount of suffering it causes. Some bodies
do better than others obviously.

I am also not saying that CFS/Fibro IS Lyme in all cases, it could
be a diff pathogen. But i will never again believe that CFS/Fibro happen
for no reason with nothing behind it. Most of the symptoms point
to external cause.


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## angelpie545 (Feb 23, 2005)

Interesting thread. I am having some major health concerns right now that I wonder if may be related to Lyme...I am currently trying to find a doctor who will send my blood to the labs in Florida to test for Lyme since the Western blot test is quite inaccurate from what I've heard.


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## PrayinFor12 (Aug 25, 2007)

Angelpie,
I have Lyme and have had to FIGHT for treatment. Let me get you started.
(I know you may not have Lyme, but you'll need to make certain. If you do and don't get treated, it won't be fun.)

Go to ILADS. This is a group of doctors who specialize in Lyme. Whatever the drive/flight to get to one of these docs, it'll be worth it.

You'll need to get your blood tested from the Igenex labs (in CA?). They're known to be the only labs worth the time (for Lyme). If the tests come back negative, try try again. They very frequently will be negative. Negatives mean nothing with Lyme tests - only positives mean something.

If you're fairly sure you've got Lyme, go ahead and get started on a broad-band antibiotic. This may be where the fight comes in. Remember that precious few doctors even acknowledge that Lyme is common - far fewer will know how to treat you.

You'll need to be on the antibiotic a minimum of 4 months. That's how long it takes for all your blood cells to die off and be replaced. I'm on them for 6 months.

Too, if you do have Lyme, your liver is already under great stress. Make sure you get rid of anything that may stress it further: food coloring, msg, preservatives, the chemicals in tap water, etc.

Keep in mind that the vast majority of info you'll find is from the govt - and they don't acknowledge how wide-spread Lyme is either. Much of the info you find will be innacurate, though it will be sprinkled with truth. Be careful.

And don't let anyone tell you a lack of the bulls-eye-rash means you don't have it. I think it's only about 30% of Lymies who ever get any rash.

I don't mean to sound like an alarmist. It's just that if you DO have Lyme, you DO need help - and quickly. The most accurate source of info will be other Lymies.


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## angelpie545 (Feb 23, 2005)

Thank you, that helps a lot...I also heard something about Bowen's labs from Florida, that they were good as well? As far as finding a Lyme-literate MD, I'm kind of stuck right now as far as cost goes. I can pay for testing out of pocket (I have state insurance and I'm fairly positive they won't cover anything of that nature, because all testing would be out of state), but I'd have to really try to find a way to get out of state...although I DO have some relatives in Florida who might possibly help. I've also been looking at this website for information www.truthaboutlymedisease.com


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## PrayinFor12 (Aug 25, 2007)

Angelpie,

I looked briefly at that site you linked to. It looks unusually good! Glad you found it.

I've never heard of the FL lab. 'Fraid I can't give info on it. I do know of a Lymie who lives in FL and has become a self-taught expert. We've never met, but I had a 30 min. phone conversation with her anyway. She hardly knew who I was but was adamant about trying to help me. Shall I see if I can get you 2 in contact?

Being financially stuck isn't the end of the world - IF you get those antibiotics and stay on them a long time! Only IF! You've really got to find a way.

Too, antibiotics won't kill the Lyme that's in your brain. Lyme crosses the blood-brain barrier, but meds don't. Lyme can "hide" in your brain as it's killed off in the rest of your body, then come out and reek havoc again. I've heard that there are essential oils that can kill it in the brain - I'm on primrose. (Check me on this detail though regarding how to get it out of the brain.)


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## angelpie545 (Feb 23, 2005)

It's definitely worth a shot to get in contact with someone who has the expertise..that would be great!


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## PrayinFor12 (Aug 25, 2007)

Ok, I'll send her an email explaining and asking if she'd mind her email address being on a public place.


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## Jeanne D'Arc (Apr 7, 2007)

I esp agree with this part.

Quote:

No matter what your story, you remember the bite, you don't remember any bite, you are obviously searching for answer to your symptoms. If you have had "normal" test results or test results that don't quite fit your symptoms (the only test result I had that was "off" was my cortisol was high, my Md, thought he had struck gold, but he was very wrong) or if you have been diagnosed with any of the following (this is only a partial list), please consider seeing a LLMD (Lyme Literate MD) to rule in/out Lyme Disease: Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystitis, GERD, Acid Reflux, Fifth Disease, Multiple Sclerosis, scleroderma, Lupus, early ALS, early Alzheimer's Disease, Chron's Disease, Ménières syndrome, Reynaud's Syndrome, Sjogren's Syndrome, Irritable Bowel Syndrome, Colitis, Prostatitis, Psychiatric disorders (bipolar, depression, anxiety, etc.), Encephalitis,Sleep disorders, Thyroid disease and various other illnesses. Any multi-symptom, multi-system issues, Lyme must be considered.


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## angelpie545 (Feb 23, 2005)

Quote:


Originally Posted by *PrayinFor12* 
Ok, I'll send her an email explaining and asking if she'd mind her email address being on a public place.

You can PM me her email address if she would feel more comfortable with that.


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## PrayinFor12 (Aug 25, 2007)

Ok, Ladies. The woman whose email address I was hoping to offer says that's fine. But she doesn't want the email actually in the forum.

Angelpie, I know you need her help. Anyone else? I'll PM it to you.


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## niblet (Jan 12, 2002)

subbing.

I was diagnosed with Lyme in April 2007. I had no idea that I had it. I did know that since the summer of 2006 I was exhausted, irritable, and unable to concentrate.

In March, my knee swelled up to twice its size and I could barely walk. After a visit to the orthopedist - and no improvement after a few weeks, he tested me for a variety of things. He called me personally to tell me that it was lyme.

My GP did 2 blood tests - western blot and another, and put me on antibiotics for 3 weeks. While my knee is better, I am still exhausted, and still irritable. And PMS is wretched, both for me and my family.









Right now I try to drink red clover infusions every few weeks, and take C, calcium/mag/zinc, primrose oil and EFA's (when I remember.)

I am tired of having to write everything down so I can remember! Life is turning into one big post-it note for me!

And man, is it hard to read medical info when your brain is fogged! So while I am slowly trying to amass information, I am very grateful for your knowledge. Thanks for starting this thread.

Oh and what does the <3 mean?


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## PrayinFor12 (Aug 25, 2007)

Niblet, I also have everything written down. I have a very specific daily schedule to follow. It stays minimized at the bottom of my screen.
And <3 is a heart - turn your head to the right.


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## Jeanne D'Arc (Apr 7, 2007)

Does anyone else have sleep intolerance? All my other symptoms (
for the most part ) are pretty manageable. I however , am a SLAVE
to sleep. Sometimes even large amounts of sleep are not enough.
This is a fairly new symptom ( few months ago ).

Wish me luck, I will be seeing an ILADS (international lyme association)
doctor. He is almost an hour away but i will count my blessings that
he is at least that close.

I am torn on the antibiotic issue...since if i get a positive I will
have had it several years.I firmly trust *certain* alternative
treatments for this however the people i know who have healed
have done so over a great deal of time.

No wonder they call them Lyme Warriors.


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## User101 (Mar 3, 2002)

Moving to health and healing since this thread seems to be focusing on the care and treatment of lime disease:

Quote:

Though Finding Your Tribe was originally opened to help parents find each other based on their location we have welcomed tribe threads for parents of a like-minded path to meet and chit chat with one another. However, such threads should not take a focus of discussion for a topic that is hosted in an existing forum at MDC.

A natural course of chit chat discussion might carry you into discussing your daily lives and sharing events and struggles. But focused discussion of a parenting topic, a breastfeeding issue or problem, an activist or political issue, a religious concern or belief, just to name a few, should go to the appropriate forum for discussion with the larger MDC community. If you have any question in this regard feel free to check with the moderators before posting. Should you post or thread not be appropriate for FYT on this basis it may be moved to the appropriate forum.
FYT Guidelines


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## PrayinFor12 (Aug 25, 2007)

Jeanne,
I don't have the sleep issue. I have noticed that extra sleep makes the relapses easier.

If you're seeing an ILADS doc, that'll likely be really helpful! I'm glad you're able to go. Mine (closest one) is 4 hours away.

As to the antibiotic, I've never heard of anyone healing without it. I'm not an expert, but I have talked to tons of Lymies. I'd be very cautious about avoiding the anti. It is powerful, but I think that's the point - Lyme is awful powerful too.
Let us know how things go at the doc.


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## 2crazykids (Jun 19, 2005)

Lymie here too!

I've been dx with it twice, my dh twice, and my dd has it right now. I found the nasty bloodsucker right on her neck vein!

Arrrgh! This disease makes me soooo freaking angry.

I am on antibiotics right now in the middle of my course. I may decide to go a month longer if my symptoms don't go away as much as I like. My doc is very supportive of me calling the shots.

I must say this last period I had was so much easier being on anitbiotics, I hardly had any PMS where I wanted to kill people! Anyone know why Lyme is connected with the bad PMS symtoms?

With the rate of lyme around here I may just stay on antibiotics for a while!

My aunt and cousin had undiagnosed lyme for a year or more and are still battling the pain. They've both been on many different types of antibiotics and still not seeing the pain dissipate. They do also see a specialist in CT.


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## Jeanne D'Arc (Apr 7, 2007)

Quote:


Originally Posted by *PrayinFor12* 
Jeanne,
I don't have the sleep issue. I have noticed that extra sleep makes the relapses easier.

If you're seeing an ILADS doc, that'll likely be really helpful! I'm glad you're able to go. Mine (closest one) is 4 hours away.

As to the antibiotic, I've never heard of anyone healing without it. I'm not an expert, but I have talked to tons of Lymies. I'd be very cautious about avoiding the anti. It is powerful, but I think that's the point - Lyme is awful powerful too.
Let us know how things go at the doc.


Some people have done it with diet, antibiotic herbs ( yes i know
still antibiotics), Salt tonic/Rife Therapy. One comes to mind
Dr. Ron who was able to heal himself w/o abx. But it takes allot
of perserverance you and you need to be diligent and have
all the right tools.

I hang out at Lyme Strategies on yahoo. But i fully respect those
going the abx route, i really do, its a nasty disease.


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## doulajewla (Mar 1, 2005)

Quote:


Originally Posted by *niblet* 
subbing.

I was diagnosed with Lyme in April 2007. I had no idea that I had it. I did know that since the summer of 2006 I was exhausted, irritable, and unable to concentrate.

In March, my knee swelled up to twice its size and I could barely walk. After a visit to the orthopedist - and no improvement after a few weeks, he tested me for a variety of things. He called me personally to tell me that it was lyme.

My GP did 2 blood tests - western blot and another, and put me on antibiotics for 3 weeks. While my knee is better, I am still exhausted, and still irritable. And PMS is wretched, both for me and my family.









Right now I try to drink red clover infusions every few weeks, and take C, calcium/mag/zinc, primrose oil and EFA's (when I remember.)

I am tired of having to write everything down so I can remember! Life is turning into one big post-it note for me!

And man, is it hard to read medical info when your brain is fogged! So while I am slowly trying to amass information, I am very grateful for your knowledge. Thanks for starting this thread.

Oh and what does the <3 mean?


I only read so far on the first page when I saw myself....

I know not much abotu Lyme. For two







years now I have been suffering with a multitude of symptoms and no help. I have been frustrated and crying and a wild banshee woman for 2 years. Oh yeah and in pain too.

2 years ago I gave birth at home to a healthy baby girl. One week after this is when I found the tick in my thigh. I screamed and told dh to get it out because I couldnt even look at the thing. i went right to the dr and she didnt even want to see it she said she would bet I have nothing to worry about. I insisted on showing her anyway and she said nope, no bullseye ring, no lyme. I went away thinking ok I am definitely fine.

a few weeks later I was limping, but not bad, just figured ok I have four kids and i am extremely busy. I was always tired. Always. But i forced myself to do things because I had to. I am a person who does not rest.

these have been what I have been battling for 2 years straight, not even sure if they are lyme related:

hyperthyroidism(which has corrected itself on its own, no thanks to beta blockers which caused an asthma attack...went to many different homeopaths, drs etc to find a cure for this too.)

palpitations, severe at times to where I was crying and convinced I was dying. All tests showed them come up, but that they were benign.

pain. Entire body pain, and when i dont have that, I have extreme hip pain to the point where I got an xray not long ago because i thought i hurt it ( i am a dancer). No one could find out whats wrong with my hip, they said maybe arthritis and get PT.

weird fever feelings with pain. When i got this at first, I said oh great i have a new baby and im getting the flu. Started on echinacea and vit c. My flu like symptoms lasted 24 hours and I was fine. This has been happening at least once a month. Sometimes weekly.

Leg and foot pain, sometimes hand pain. These pains are not debilitating, but are very bothersome. and they make me extremely tired. By the time night rolls around, i want to get into bed and have someone massage my entire body. i feel ike i need a massage hourly. i did get a massage not too long ago and it felt good for the time, but when i got up to go, I was still limping with hip pain. the hip pain comes and goes---comes on especially while sitting for long periods of time, when i get up I almost fall but then as i walk it out it gets a little better. still not 100% but at least i can walk.I feel every night like i have gone 10 rounds with someone and they won. seriously...and you know what I feel like a hypochondriac.

Painful periods and RAGING pms. RAGING. I cant even begin to describe how this has worsened in the last few months. I am a raving lunatic lately and so frustrated because i couldnt pin point exactly what was wrong with me. Does lyme make you nuts, because i certainly am at times. I am taking fish oil only because I read that may help with my moods, and it does on and off. Some days it doesnt matter, but it did take a great edge off.
'
Muscle twitching. Right now, the last 2 days, my eye has been twitching so badly that it is forced closed. Then my eyes tear and its so annoying. Its only one eye, but not cool when driving.Other muscles that are twitchy are legs and arm.But not that bothersome at all. just annoying lol.

Depression. On and off. I had PPD after my baby was born and i never ever had it with my other kids. not sure if this is related to lyme--i have no clue about lyme really. im on here trying desperately to get help before my dr appt today. I was diagnosed yesterday my labs came back positive.

Memory loss---oh gods this is horrible. I thought it was just because i was getting older, doing too much and have lots of kids. i cant remember crap. some days are better than others. in my dance routine, I am having difficulty some days on remembering what comes next. i was never like this. songs I know the words to---suddenly i am at a loss. I cant even remember where I put the baby wipes 4 seconds ago and it frustrates the hell out of me. I will sit and cry and cry and have a total fit because i cant find where I JUST LAYED THEM! then i will find them in an odd spot and not remember putting it there, or question, why do I put things in places like this that are not my normal places?

Meltdowns. for 2years my meltdowns have gotten really bad. I will just fly off the handle for no reason. PMS is a horrible horrible time lately. Its just getting worse.

Strep. I have gotten strep 4 times in the last two years. I have NEVER ever had strep in my entire life until when my baby was 3 months old. and it was brutal. Last time i had strep was april of this year. I can feel im due to get it again. I just know when somethings brewing. and somethings been brewing for 2 years and ive been out of my mind trying to figure it all out. Thankfully someone here on mothering mentioned a few months ago i could have lyme..otherwise i would not have thought to test.

when i first got bit i didnt have many symptoms. slowly its been increasing over the 2 years. Over the last few months I have developed the hip pain..the body pain and weird fever feeling (never actually getting a fever--though sometimes I did) i had since 2 weeks after getting bitten. The last time i had the flu symptoms was 2 weeks ago. I laid in bed after dance (seems that after dance is when I get sick for some reason) and felt my heart pounding and a fever felt like it was coming on and my entire body felt like i had been severely beaten with a meat mallet. I said oh well im getting the flu or a bad virus...i told dh get the tea ready lol. But by morning, i was fine (aside from the normal pain that has become my normal life.) and just said ok it wasnt getting sick, just one of those weird fever pain thigns. Dh said i felt a bit warm that night too so maybe i did have a fever.

the dr i am going to is not my normal PCP. i dont even know this guy but ill go see what he says because i need to figure out what my options are. But i came here first to see what my real options are. Left untreated can it really get bad? i dont want antibiotics. I dont. I hate taking pills at all, i have anxiety and get really sick with worry. I dont want to be allergic to something either. I really hate this.

I am still nursing my 2 year old...should I test her for lyme? should i test my entire family? my dd was bitten years ago by a tick...i will test her. my tick was different though dont know if it matters, but mine was tiny tiny and had not blown up...dd's was huge and had blown up. i had brought her to dr back then and they told me same thing that no bullseye no lyme. Bull







is what i say. i dont trust doctors in the last 2 years anyway since i have become empowered in taking my health into my own hands. But now I am just at a loss. That dr who told me the no bullseye crap we left when my baby was 1 month old. I just didnt like her and she was trying to force me to vax when i didnt want to.

where do i go from here? i visited that website someone had posted in the first set of threads. My hands and wrist are hurting from typing so much(i am a writer and have been typing since i was 6 and never had this pain till recently) so i am going to go...but i need to be armed with knowledge. I need to. Just seems like every month or every couple of weeks some new symptom comes up. I felt like a freak in my body not knowing what was going on with my body. I knew that something has been wrong and have yelled at doctors when they said well we can do this and that but basically you are healthy. yeah im healthy BUT SOMETHING IS WRONG!

i am glad i found out that I have Lyme. now I may know why i have been so crazy...i sure hope this is an effect of lyme...otherwise I really am going nuts. Oh one more symptom I just remembered...for over a year and a half, its been increasingly hard to button buttons and snap snaps on the baby's outfits. I cant even open pickle jars and my fingers sometimes just wont do what i need. ugh.

Again i am glad i found out. Now i have something to say ok this is real, this is not anxiety, this is real, its concrete. Something is wrong and I am going to continue to fight. I dont ever rest or slow down unless its bad...sometimes it is pretty bad, the pain but i keep going because i have to and love to dance. the only time its knocked me down was when i had strep. I didnt even know where i was or care. Alli i know is i was literally knocked down onto the couch and stayed there. I wont ever stop moving.


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## PrayinFor12 (Aug 25, 2007)

Doulajewla, you said you don't know much about Lyme. I'll throw in some details...

Quote:


Originally Posted by *doulajewla* 
I insisted on showing her anyway and she said nope, no bullseye ring, no lyme.

Almost every doc would say this. Very few docs know anything about Lyme. I hear only 30% of people with Lyme ever get the rash. I never even found a bite.

My flu like symptoms lasted 24 hours and I was fine. This has been happening at least once a month. Sometimes weekly.

"Once a month" - Lyme relapses about monthly. For me it's been every 6 weeks. It causes pain both when it's alive and when it dies - it only eases after it's been dead or dormant a while.

Because of the going dormant/relapsing thing, there's only one day a cycle when the Lyme can be killed (antibiotic).

Does lyme make you nuts, because i certainly am at times.

Yes. Definitely. That's also the memory loss you mentioned.

Strep.

Are you sure it's strep? Could it be a relapse? Keep detailed and dated notes so you can find patterns.

If it is strep, remember that your whole body is under attack. Your immune system is freaking with all the toxins the Lyme is producing. So that lets you get sick mighty easy.

Dh said i felt a bit warm that night too so maybe i did have a fever.

Lyme can cause a fever - doesn't always.

Left untreated can it really get bad? i dont want antibiotics. I dont.

Yeah, it can kill. More often, you end up maimed. Seriously. Take the darn antibiotic. It's WAY better than your other options.

It takes 4 months for all the blood cells in your body to be replaced (Lyme lives in the blood.) Because of that, you'll need a broad-band antibiotic for _atleast_ 4 months. Beg plead and demand till you find someone to write the prescription. Remember that most docs know squat about Lyme. It'll be up to you to find the treatment you need.

I am still nursing my 2 year old...should I test her for lyme?

Yup - mainly because she's young and can't tell you her symptoms. Watch the rest of the fam for symptoms. Remember that if her test comes back negative, it doesn't mean a thing. Only positive tests mean something.

my tick was different though dont know if it matters, but mine was tiny tiny and had not blown up...dd's was huge and had blown up.

No diff - yours was a nymph. So was mine.

i dont trust doctors in the last 2 years anyway since i have become empowered in taking my health into my own hands.

Awesome! You're gonna need that!

where do i go from here?

ILADS - those are the docs that have a clue. But you'll still need to learn, study, research, and question.

now I may know why i have been so crazy...i sure hope this is an effect of lyme...

EVERYTHING you listed is a Lyme symptom. Really.


You said your doc appt is today (Thurs)? Write on here again. I'll keep an eye on the thread so I can answer you. I'm sure other Lymies will too. You'll find that your absolute best source of help is other Lymies.

Just knowing what's on this thread, you're likely to know more than your doc. Be confident. Stand up for yourself. You really can get better!


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## doulajewla (Mar 1, 2005)

Thank you so much, that post has helped me really feel validated in my feelings that I have been having. knowing that others have experienced this makes me feel better. I called this woman I knew 2 years ago, she let me rent her aqua doula and i remembered she had Lyme. she did the antibiotics too and some probiotics along with it and some other things like homeopathy. I trust her judgement too and if shes saying take the antibiotics, (and shes ultra crunchy...that why I went to her)then I should consider it. I didnt know Lyme could kill.

Sometimes it seems that my symptoms are not that bad, so I keep thinking do I really NEED to do something about it? I know I do--because just in the last few months, i have been deteriorating fast. my hips are getting worse and those body aches are all the time. And my moods---i wont even get into that. Of course memory too. i just hope I can remember cat food today!

I did have strep those times---i tested positive for strep each time. And man did it hurt! i dont know if it was worse because i have lyme or what, but i was suffering so badly with the strep. it was sooo incredibly hard.

I will post back later. I do know the dr wants me on a strict antibiotic therapy for a while. Just dont have details yet, but i will later


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *doulajewla* 
Thank you so much

You're welcome! Other Lymies jumped forward to help me too.

she did the antibiotics too and some probiotics along with it and some other things like homeopathy.

Me too - I'm on like 15 dumb supplements a day. But it's helping.

Sometimes it seems that my symptoms are not that bad, so I keep thinking do I really NEED to do something about it?

Those times are likely the times between relapses.

Of course memory too. i just hope I can remember cat food today!

The memory thing is a sign that the Lyme is in your brain. Lyme can stay dormant in the brain while the antibiotics kill it off in the rest of your body. You'll need to take something that can cross the blood-brain barrier along with the antibiotic. (And good luck to kitty.







)

I will post back later. I do know the dr wants me on a strict antibiotic therapy for a while. Just dont have details yet, but i will later









Look forward to hearing back from you. I'll help as much as I possibly can. I doubt I'd be alive now if it weren't for others jumping in to help me. I realize that sounds melodramatic - really not though. Good luck today.


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## flutemandolin (Nov 20, 2001)

subbing

I have a lot to write when I have more time, what I want to say now is this:

How is it possible that there is a quick, accurate Lyme test for dogs, and a vet will not hesitate to prescribe antibiotics for a whole month if the test is positive, yet we HUMANS who are suffering can't get a diagnosis or treatment?


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## PrayinFor12 (Aug 25, 2007)

Flutemandolin,
There is? Really? Are you sure it IS accurate or do they just _say_ that. I mean, they _say_ that about the human tests too.
If that info is right, I totally don't get it!


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## PrayinFor12 (Aug 25, 2007)

*The Politics of Lyme*

http://healthhacker.org/satoroams/?p=675

http://query.nytimes.com/gst/fullpag...55C0A961958260

http://www.anapsid.org/lyme/

*Where to Get Help*

http://www.ilads.org/

http://www.aldf.com/lyme.shtml
(This last link has good info, though the recommended length of antibiotic treatment is way too short.)


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## KermitMissesJim (Feb 12, 2004)

I was diagnosed with Lyme in November 1995. I did the three week course of antibiotics. I have not been the same person since the symptoms first appeared.

Never had a rash, never found a bite, not sure when and where I got it (upstate NY). But the test (whatever it was in '95) was positive and the abx took care of the immediate symptoms.

I now have IBS, which I manage quite well with diet/herbs (and I think that's the ONLY way to go with IBS, honestly). I think they're related.

I've suffered no fertility issues at all, and I'm grateful for that. Pregnant with IBS is an interesting lifestyle...

My doctor told me in 1996 to always call myself immune deficient/compromised/suppressed, that the Lyme made me so.

I do have muscle pain, sleep problems, exhaustion, low energy. Those are my main complaints.

Nice to find this thread. I'm grateful the diagnosis went smoothly -- it sounds like docs have gone backwards in the decade since then.


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## PrayinFor12 (Aug 25, 2007)

Kermit,
Makes me wonder if the antibiotic didn't finish off the Lyme - ?

What is IBS?

And what's this about infertility? I am currently pregnant. I lost my last baby - had Lyme then too. Do I need to know something?


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## doulajewla (Mar 1, 2005)

I am just so disappointed, but knew I would be. Why did i go to that doctor lol?

he didnt even ask my symptoms. (hes not my normal pcp, MY doc is not available till january and she knows my symptoms for the last 2 years) he didnt even ask do i have any neuro symptoms. nothing. handed me an rx and said 3 weeks should do it. i couldnt remember all my questions and i couldnt argue becuase i forgot everything thankfully dh was there and spoke up for me. when he started spouting about different lyme things, the dr said "you know what, why dont you go to infections disease control, they can help you better." dh wanted an antibiotic that crosses the blood/brain barrier, and mentioned cephalosporins...dr was like no. He said you have some minor discomfort so we dont need to go that route.

i left angry. I need to find a dr who knows what they are doing. What was the website again? I looked on it but could not find a dr, there were no listings. i am also trying to do this all very fast I have ten million things to do today. I am not on treatment yet- i want to know more.

The west something test(i dont have it in front of me) came back positive only on IgG, not IgGM. he said that i probably didnt get lyme until a few weeks ago i said no i was bitten 2 years ago. he said its not from that tick bite because only the preliminary tests came back positive, not secondary. WHAT DOES THIS MEAN?

I know for a fact when I was bitten. I always always check my body and my kids when we are outside for ticks. i know my body and know what is on it even a tiny pimple. I found this tick when I first woke up and knew something was not right.

What should I do? Im kind of panicking a little because I havent started antibiotics. I feel that i do have neuro symptoms, i am really out of it alot.

Im just tired and in pain today.

And i forgot the cat food.


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## jamie79 (Mar 18, 2006)

Well, I just saw this thread today. I have lyme. It took my about 8 months of feeling horrible and several doctors telling me it was all in my head and FINALLY finding my wonderful naturpath (3 hours away - 1 way) that I found someone who would do a lyme test on my. She thinks I have probably had it for 1-2 years.

She told me after my diagnosis that I had a choice of taking antibiotics from a MD or sticking with her and going to natural route of supplements and herbs. I chose to stick with her. The only "antibiotic" I take, which is really an herb or a natural antibiotic, is Cats Claw. Other than that, I take loads of supplements, most are from company called Xymogen. The other thing, and probably most important, is strict diet. I mean, very strict. Absolutely no gluten, no dairy, no soy, no eggs. The dairy and eggs are my own food intolerances, the other 2 (gluten and soy) are very difficult to digest and make it hard for the body to heal when it has to deal with those foods. Also, NO SUGAR!!! This is vital. Sugar feeds the lyme in a way. It loves it. I know if I have any sugar, aside from truly raw honey, I will feel like crap for the next week at least. Rest is important, too. Lyme is weird, though. It makes me tired during the day, but at night I am wired. My ND gave me 2 supplements to help with that and they do help. I have been following the raw/paleo/no grains diet. There is a thread in the Traditional Foods forum. I cannot stress enough how important diet is. I am no expert, just have a lot of experience with this.

I also highly recommend that if you have lyme or suspect you have lyme, buy the book http://www.amazon.com/Healing-Lyme-P...8176717&sr=8-1 and read it, cover to cover. Also, here is a link from Dr. Ron Schmid, who healed himself of lyme. I almost went to him, because he does phone consults and would have doctored me over the phone and internet, and he got rave reviews from people, but I found my doc closer to me here. Here is a link to his story, about halfway down the page...http://www.westonaprice.org/moderndi...icdisease.html


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *doulajewla* 
I need to find a dr who knows what they are doing. What was the website again? I looked on it but could not find a dr, there were no listings.

ILADS. There aren't actually listings up. There's a place on the site where you put in your address and they give you a page with the names and contact info of the closest ILADS doctors.

The west something test(i dont have it in front of me) came back positive only on IgG, not IgGM. he said that i probably didnt get lyme until a few weeks ago i said no i was bitten 2 years ago. he said its not from that tick bite because only the preliminary tests came back positive, not secondary. WHAT DOES THIS MEAN?

This means that the doc is clueless. Seriously. A NEGATIVE LYME TEST MEANS NOTHING. Only the positive ones count. There are MANY false negatives. I've never heard of a false positive.

Oh, Western Blot. The Igenex labs are the best ones.

What should I do? Im kind of panicking a little because I havent started antibiotics. I feel that i do have neuro symptoms, i am really out of it alot.

Go ahead and take the 3 weeks of antibiotic he gave you - atleast until you get a different prescription that's long-term. Do what you can.

Make sure that your dh learns as much as you and can stand up and get demanding for you. I also had brain problems and often couldn't even talk to the doc myself.

Do find a doc who'll give you those antibiotics. Try alternative medicine - anyone who can write a prescription. And do see an ILADS doc.


Good luck!


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *jamie79* 
(gluten and soy) are very difficult to digest and make it hard for the body to heal when it has to deal with those foods. Also, NO SUGAR!!! This is vital. Sugar feeds the lyme in a way. It loves it. I know if I have any sugar, aside from truly raw honey, I will feel like crap for the next week at least.

So _that's_ why I can't have sugar?! Argh! I can not _believe_ I've been cheating on that one. I thought it was just because the Lyme had attacked my adrenal glands and they aren't working right.

What's the deal with soy?

And I'll check out the websites.


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## KermitMissesJim (Feb 12, 2004)

Quote:


Originally Posted by *PrayinFor12* 
Kermit,
Makes me wonder if the antibiotic didn't finish off the Lyme - ?

What is IBS?

And what's this about infertility? I am currently pregnant. I lost my last baby - had Lyme then too. Do I need to know something?

IBS is irritable bowel syndrome. It's basically a digestive disorder. If you want to learn more about it, www.helpforibs.com is the best site out there.

I thought I heard or read somewhere (a couple of years ago) that Lyme could mess with your fertility. Don't quote me, though! I really don't know for sure. I am pretty sure I read it, though, because I was looking around to see why I still felt so tired and I dismissed lasting Lyme effects because I have no fertility problems whatsoever.


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## 2crazykids (Jun 19, 2005)

this thread is making me sad...

But it's good. We are all talking about it and learning more and more. I've learned so much from this thread already.

I'm so worried for my dd. I hope she'll be ok and I caught it soon enough.

This doc was just recommended to me:

Steven Phillips, M.D.. He's at 944 Danbury Road, Wilton, CT 06897. His telephone number is 203-544-0005.

I'm told he's quite an expert with Lyme and he won't stop treatment until you are better and symptoms are gone.

I need to get to him. Either that or stay on antibiotics for a while.

Can't let go of the sugar. So hard.


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *KermitMissesJim* 
I thought I heard or read somewhere (a couple of years ago) that Lyme could mess with your fertility. I dismissed lasting Lyme effects because I have no fertility problems whatsoever.

Maybe this has to do with how Lyme attacks every last thing you own. I do know that Lyme got to my hormones - it caused me to make milk. Too, I seem to have different parts affected at diff times. Maybe you just got lucky regarding fertility - maybe it affected your hormones at all the "right" times so it didn't hurt anything?

Quote:


Originally Posted by *2crazykids* 
I'm so worried for my dd. I hope she'll be ok and I caught it soon enough.

How old is your dd?
Ya know, Lyme will be easier for her to deal with since she's not the one having to do the research. Doesn't make it easier on _you_, but I thought it might be comforting to point out how much nicer this is for her. I mean, if you have to get Lyme... I dunno.


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## Metasequoia (Jun 7, 2005)

Quote:


Originally Posted by *Jeanne D'Arc*
I have tested positive for the Mycoplasma and am preparing to get an Igenex test done (for Lyme)

IGeneX is the only way to go! IgG/IgM Western Blot - you might want to test for the 3 common co-infections too, depending on where you live - Babesia, Erlichiosis & Bartonella.

Quote:


Originally Posted by *Jeanne D'Arc*
I have just started the Salt C protocol myself and I think I am herxing, it has helped alot of people but I am still very early in the process.

I've heard great things about the salt/c protocol.

Quote:


Originally Posted by *Jeanne D'Arc*
Fibro is closely connected (basically the same thing as) chronic fatigue syndrome. There are a few camps of thought, one is that the brain is causing the painful symptoms and the fatigue is depression. One of the others is latent Epstein Barr Virus infection, candida and other things. There is another camp which claims most cases of Fibro (which is the muscle pain tied to CFS) is really Lyme. Not that there is also Fibro, CFS and Lyme but that these "names" are really caused by these pathogens.

One other camp: Adrenal Fatigue. I go to Clymer Healing Center (I started THE Adrenal Fatigue Thread in H&H) & I see a naturopath who trained under Dr. Poesnecker who was the director at Clymer for 40 years before passing away a few years ago. Dr. Poesnecker wrote a book called Chronic Fatigue Unmasked, 2000. At Clymer, the majority of the patients are CFS/Fibro patients. Dr. Poesnecker's research led him to believe that CFS & Fibro is a double-sided coin caused by Adrenal Fatigue.

Of course, most Lyme patients will suffer from adrenal fatigue as the adrenals suffer whenever there is chronic stress as there is in Lyme.

I never had a tick, never had a rash (but yes, only 30% of Lyme patients develop a rash - and this percentage only represents the cases that are reported!) but have been achey ever since Ds was about 6 weeks old, back in May of '06.

I tested a few times, through Quest, then IGeneX & then through MDL. All were useless except the IGeneX test. I had a few bands that were positive, but they weren't Lyme specific. I'll list the meaning of all of the bands after I respond to everyone's posts.

I haven't had any fevers & nothing is cyclical. I haven't gotten my first PP AF yet, so I don't know if I'll have any flares when I get AF.

I am not fatigued, but if I was, it could easily be blamed on my adrenal fatigue. I did an ASI (Adrenal Stress Index) through Diagnos-Techs & I have pretty severe adrenal fatigue (I'm in phase 7, as low as it gets) & have very little cortisol at all times of the day as well as almost no DHEA. My sex hormones, progesterone, estrogen & testosterone are all also very low. I'm bfing Ds *a lot* - the kid barely eats any food at 21 months & nurses 5-10 times during the night. I tandem nursed Dd2 for 3 months in the beginning but weaned her at 3.5 years because I feared that I had Lyme.

The thyroid is almost always affected in adrenal fatigue, even if it doesn't show up, so if someone has Lyme, they probably have adrenal fatigue which means that their thyroid would be affected as well.

My naturopath said that even his Lyme patients don't heal until they treat their adrenals, which I'm sure can work both ways.

Quote:


Originally Posted by *PrayinFor12*
Too, antibiotics won't kill the Lyme that's in your brain. Lyme crosses the blood-brain barrier, but meds don't. Lyme can "hide" in your brain as it's killed off in the rest of your body, then come out and reek havoc again. I've heard that there are essential oils that can kill it in the brain - I'm on primrose. (Check me on this detail though regarding how to get it out of the brain.)

I'm interested in this info about the essential oils that can kill it - and if it works in the brain, why not the blood?

Quote:


Originally Posted by *Jeanne D'Arc*
One comes to mind Dr. Ron who was able to heal himself w/o abx.


Quote:


Originally Posted by *jamie79*
Also, here is a link from Dr. Ron Schmid, who healed himself of lyme. I almost went to him, because he does phone consults and would have doctored me over the phone and internet, and he got rave reviews from people, but I found my doc closer to me here. Here is a link to his story, about halfway down the page...http://www.westonaprice.org/moderndi...icdisease.html

I spoke with Dr. Ron on the phone about Lyme, and from his article that mentions his battle with Lyme, I get the feeling that if he slips up at all on his VERY strict diet, he relapses:

Quote:


Originally Posted by *Dr. Ron*
And the kicker is that even small amounts of poorly chosen or even less-than-optimal foods appear to slow down or derail the healing process. An example: early in dealing with my Lyme disease, I adopted an all raw-foods approach for a time, including raw meat and fish and raw milk. I also included unprocessed, unheated honey. Over the course of a few months, it became clear to me that honey was one factor in my diet that was clearly responsible for the continued low-level symptoms of Lyme I experienced. Honey was something I simply could not eat if I wanted full recovery. Similarly, there was no place for any but the smallest amount of fruit in my diet if I wanted a complete recovery. This need to eliminate nearly everything sweet in order to get well has been the case for many of my patients, patients with a wide variety of medical problems.

I remember him saying something about eating a walnut that hadn't been soaked & having set backs. I soak my nuts, seeds & the very infrequent grains that we eat, but his diet seems unattainable to me at this point in my life with 3 small children & a very small child support check.

Quote:


Originally Posted by *doulajewla*
The west something test(i dont have it in front of me) came back positive only on IgG, not IgGM. he said that i probably didnt get lyme until a few weeks ago i said no i was bitten 2 years ago. he said its not from that tick bite because only the preliminary tests came back positive, not secondary. WHAT DOES THIS MEAN?

This was actually my first thought as I read your initial post. Ther eare two possibilities here, either you were infected right after your Dc was born & were re-infected recently (happens all the time) or maybe you were actually infected more recently. Sometimes our bodies can handle the Lyme fairly well with minor or no symptoms & maybe the second infection was just too much for your immune system.

Quote:


Originally Posted by *2crazykids*
This doc was just recommended to me:

******. He's at ***** Road, Wilton, CT 06897. His telephone number is ******.

Most Lyme docs (LLMDs) prefer not to have their names posted anywhere , nor do they like to be known as LLMDs to the general public as many LLMDs are under fire by our government for "overtreating" a disease that only requires 3 weeks of antibiotic therapy.







: (Not irked at you, at our government, lol.)

If you're traveling to Ct, I can PM you a name of a doc who is world famous for treating children for Lyme. Once you start reading on Lyme sites, you'll hear mention of his name (aka Dr. J.) quite often.

Okay, some more info for ya! The best literature I have read regarding Lyme & coinfections is Dr. Burrascano's Treatment Guidelines. It's 33 pages of some of THE best info out there. Dr. Burrascano is very well known in the Lyme community & is also big, big bucks. He's in New York.
I suggest that anyone dealing with Lyme print out all 33 pages, read it all, twice, and take it with you to your doctor's appointment. When you're done, do everyone else a favor & leave a copy with your doctor.

If you're looking for a Lyme literate medical doctor (LLMD), go to Lymenet.org & go to the section titled, "Finding an LLMD" & post your whereabouts & someone will PM you with some names. Just DON'T read the forums! Trust me, you'll never sleep again.

I'll post the meaning of the bands in the next post, I think I've used up all of my space in this one.


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## Metasequoia (Jun 7, 2005)

When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have Lyme borreliosis and the testing is stopped right there.

Screening tests that are positive are often followed by a test called the Western blot. The blot is a "confirmatory" test, as opposed to a screening test. (Blots are performed for other infection -- it is a type of test, not a test uniquely for the Lyme bacteria.)

Western blots are accomplished by breaking the Borrelia burgdorferi into pieces, and those parts of the Lyme bacteria are then embedded in a gel. Electricity is used to push antibodies made by the immune system through the gel. Antibodies that are made to attach to certain parts of the Lyme bacteria will bind to those exact parts that are embedded in the gel. When the antibodies bind to the parts of the bacteria, a black band is formed, which is then interpreted as +/-, +, ++ or +++ depending upon the intensity or darkness of the band.

Each part of the Lyme bacteria weighs a certain amount. For example, the tail of the Lyme bacteria weighs 41 kilodaltons (kDa). Think of kilodaltons like pounds, ounces or kilograms. The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons. *The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
*
It's important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive. I presented research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy.

For this reason I believe the screening tests are practically worthless, and is why I use the Western blot to "screen" for borreliosis, even though it is a "confirmatory" test. Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients false positive blot results occurred in only three percent of them, based upon research I presented at the 2000 International Lyme Borreliosis conference.

Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the Lyme bacteria, then there was a 97 percent chance they would feel better with antibiotics. Consequently, I tell my patients not to worry if the laboratory interpretation is "negative" or "equivocal," if they have antibodies that are significantly associated with Borrelia burgdorferi.

One thing doctors are taught in medical schools is to treat the patient, not the test result. *If someone has chronic pain, fatigue, cognitive problems, blurry vision and/or neurological problems, and also has a significant antibody on a borreliosis Western blot, that antibody should not be ignored in my opinion, even if the 'official' interpretation is negative or equivocal.* Remember, antibodies are very specific to what they bind, and borreliosis may cause virtually any symptom and any disease.

Disease surveillance is close observation of a group of patients with the same disease, and it is one of the jobs of the Centers for Disease Control (CDC). Criteria used for disease surveillance is often different than criteria used to diagnose and treat patients. In my opinion, surveillance criteria should not be used in day-to-day clinical medical practice. Unfortunately, many patients are told they do not have borreliosis because they do not meet CDC's surveillance criteria. Surveillance criteria exclude some of the classic hallmark antibodies, such as the 31 kDa band (outer surface protein A or ospA) and the 34 kDa band (outer surface protein B or ospB). In fact, the 31 kDa band is so tightly associated with Lyme borreliosis that a vaccine was made from that outer surface protein. In other words, I believe that criteria that exclude the ospA (31 kDa) band should not be used to tell a patient they do not have Lyme borreliosis. Common sense should tell anyone that prevalent antibodies like the 31 dKa and 34 dKa should be included in the criteria, not excluded. (Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics.)

*Same day head-to-head comparisons of borreliosis Western blot results revealed that reference laboratories do a better job of finding antibodies against Borrelia burgdorferi than regular laboratories. This raised the obvious concern that the reference labs might be overdiagnosing patients with borreliosis. That is one of the reasons why I researched those 700 patients. However, the false positive rate was just three percent. In my opinion, reference laboratories do not over-diagnose borreliosis.
*
False negative test results, on the other hand, are a much bigger problem, in my experience. Negative Western blots convert to positive in 18 to 24 percent of cases, if four weeks of antibiotics are given, and then the patients go off antibiotics for 10 to 14 days before the repeat Western blots are done. In other words, a false negative Western blot converts to positive in about one out of five borreliosis patients. This is a much greater problem than a false positive rate of only three percent.

Coinfection testing may depend upon where you live on planet earth. I talked to one medical doctor from New England that was concerned about getting too many positive test results for bartonellosis (cat scratch disease). This physician was concerned about false positives. Yet I have not had a single positive yet.

Research by Greg McDonald, Ph.D. has shown that there is a different borrelia in the Midwestern U.S.A. When Dr. McDonald used a PCR primer that would amplify any strain of borrelia, he obtained positives from biopsies of bulls-eye rashes caused by tick bites in patients from Missouri and nearby states. However, if Dr. McDonald narrowed the PCR primers to amplify only Borrelia burgdorferi, Borrelia lonestari or Borrelia andersoni, the results were negative. In other words, the Midwest has a different borrelia. It has been referred to as Borrelia "confusiosis," but one of these years when it is finally characterized fully, this Midwestern borrelia will probably be known as Borrelia mastersi, in honor of Edwin Jordan Masters, M.D. and his extensive research.

Pathologists who use a microscope to examine bulls-eye rash biopsy specimens from Midwestern patients observe significant and consistent differences when compared to biopsies from New England patients. The diseases and their rashes are similar, but there are definite differences. This is why borreliosis or Master's disease is a better term than Lyme disease.

Another feature of Midwestern borreliosis is the inability to grow Borrelia burgdorferi from patients with Lyme borreliosis. In New England about five percent of cultures grow Borrelia burgdorferi from borreliosis patients. There are other borrelia* that cannot be grown in culture media. The bacteria that causes syphilis has never been grown in culture media, even though this infection has been known and studied for several generations. It should not be surprising that the Midwestern borrelia cannot be grown in culture media yet. When it is, knowledge of this infection will increase tremendously.

James Oliver, PhD, who is a very highly respected entomologist, has successfully cultured Borrelia burgdorferi from over 60 ticks collected in Missouri. Why human cultures are negative and tick cultures are positive remains a mystery. Still, there is no question but that there is a Midwestern borreliosis.

The same is true for co-infections. The babesia in Missouri is called MO-1. It is a different babesia. There are different ehrlichia. It would appear there is a different bartonella. When you have different strains of germs, the test results may be falsely negative.

To protect patients' pocketbooks, I rarely test for tick-borne coinfections. If the tests were reliable I would be more inclined to order more. In general, when potential coinfections are targeted with antibiotics, most patients get better.

*At least three possibilities exist to explain patients feeling better with antibiotics. It could be that an antibiotic that targets a potential coinfection such as babesiosis may actually be killing the Lyme bacteria as well. Or it may be that a negative test for a coinfection was falsely negative. And finally, there may be some unknown germ that the patient has that responds to the antibiotic. I tell my patients that regardless of why the antibiotics help most borreliosis patients, the benefits of antibiotics outweigh the risks. My greatest concern is untreated borreliosis, not the potential side effects of antibiotics that target tick-borne infections.
*
Specimens for borreliosis Western blot testing should always be express-mailed to the laboratory. Antibodies against the Lyme bacteria can clump or bind together and give a false negative test result. Express-mailing specimens lessens the time in which this could happen, which in turn increases test accuracy. If your specimen sits around for several days (or if a screening test is ordered instead of a Western blot, or if a regular lab is used instead of a reference lab) then you might be given a false negative test result, which in turn could result in a false sense of security. Testing in my office consists of a Western blot that is express-mailed to a borreliosis reference laboratory.

Written by Dr C of Missouri


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## Metasequoia (Jun 7, 2005)

On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C. The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

23-25: Outer surface protein C (osp C).

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).

37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

58: Heat shock protein.

66: Heat shock protein. This is the second most common borrelia antibody.

73: Heat shock protein.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi. In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).


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## doulajewla (Mar 1, 2005)

"The thyroid is almost always affected in adrenal fatigue, even if it doesn't show up, so if someone has Lyme, they probably have adrenal fatigue which means that their thyroid would be affected as well."

I had a hyperthyroid a few months after dd was born. I developed symptoms (achiness, fevers, strep infections, mastitis, bone pain, muscle pain and weakness, fatigue) about 2 weeks after the tick bite. I am wondering now if the hyperthyroid was because of the lyme. Hyperthyroid has subsided for almost a year now, my levels have been "normal" and last i tested 6 months ago I was still fine. could have also been postpartum hyperthyroidism too i suppose.

My symptoms began within weeks after being bitten by the tick. I didnt put two and two together--just assumed i had alot of kids and just had a baby and was just tired. I had the unusual fevers, constant body aches and pains, strep infections, mastitis, mood swings that were really not like me, etc. I had lots of symptoms. Fast forward to this past june--i thought i fractured my hip it hurts that bad. I even had an xray to be sure. no one could figure out why it hurts me so much. So maybe the levels went up in June? i dont know how that works. but thats when the bone pain began. I had the aches all the time up till that point, but when the bone started hurting i thought i did something and didnt remember what i did to it. and ever since then ive been going downhill. Mentally i am just not right--i almost put myself in the hospital a few weeks ago. Really bad. thats a new thing since september. palpitations began again a few weeks ago, but not as bad as a year ago. Last year it was horrible but then subsided.

I just think ive had the symptoms since a few weeks after dd was born. I dont know what that means, or why half the lyme test is negative. I guess it could be a false negative.


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## jamie79 (Mar 18, 2006)

Metasequoia~
You have lots of knowledge here, don't ya







??

I feel like I have researched myself to the point of annhilation. I just wore myself out, trying to figure out what it was that was making me feel so incredibly bad. When I first saw lyme and then, later actually considered it, it seemed to good to be true. I thought there was no way that a 'simple' thing like lyme was causing all of my probs. Then, I researched lyme and was shocked at how this thing works. Lyme is anything but simple and anything but easy to treat.

For myself, I felt that since I have chronic lyme, I didn't want to chance it with abx. Yes it could work, but so could the cat's claw. The cat's claw had a lesser chance of damaging my already bad leaky gut and I didn't want to be on IV abx, either. I guess I just figure, that for me, going w/o abx, and using the herbs and supps and following a strict diet, that I will get better. I mean, the human body is always in a state of repair, right? I do think it is very hard to follow such a strict diet. I do feel like this is how people should eat, anyways (see the work of Aajonus Vonderplanitz ). It is hard, though. Lots of work, and it isn't like I am tired already, right? I guess, I am just trying to say that even though LLMDs are a wonderful group of people, I think there are other ways of treating lyme outside of abx.

I hope I didn't come across as snarky, I am waaay tired.

Jamie

I was tested for loads of things at the same time as being tested for lyme and my results showed mild adrenal fatigue and hypothyroid issues.


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## doulajewla (Mar 1, 2005)

i dont want abx either.

But I am sooo incredibly limited in what i know, and like you, i am way too tired to deal with this. ive exhausted myself for 20 hours trying to find info. And i have, really great info--but my mind is like a sieve. why did i bother reading everything, i retain maybe 10% of what i read lately.

what is a leaky gut?

I put a call into a great naturopath who helped a friend of mine with lyme. So hopefully she will give me some answers and I will better be able to make decisions. I do know i will be taking homeopathic remedies for this along with supplements-just not sure what supplements as of yet. Hopefully the primrose will help, as someone mentioned before. Is that EPO? I know i have neuro stuff going on, i have tremors for 1 1/2 years in my hands and various parts of my body twitch way more than ever. you know the normal leg muscle spasms...well i get them too frequently and now they have moved into my eye. talk about annoying!But i want something that will cross that barrier.

I am too tired and in way too much pain tonight. usually the nights are bad., the past few months ive had insomnia because of the leg pain. ugh.

I hope my naturopath knows about cats claw. I want to know more about it. I want to know more about everything, but i just dont know if i can handle being so obessed about this and taking care of myself. I just dont have the energy between taking care of my 4 unschooled kids and work and what i need to get done before monday night. im just so tired. off to bed


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## jamie79 (Mar 18, 2006)

Here is a link aboutleaky gut

Neuro symptoms were the scariest thing for me. I was convinced I had Lou Gherigs disease. The muscle twitches, the muscle weakness, etc. It was/still can be awful. I am still healing. It helped tremendously that my ND has/had lyme and is living well with it. She was in a wheelchair at 22 years old and now has a family and is a ND! I just love her. If you want to PM me, feel free! I think EPO is evening primrose oil.

Jamie

Quote:


Originally Posted by *doulajewla* 
i dont want abx either.

But I am sooo incredibly limited in what i know, and like you, i am way too tired to deal with this. ive exhausted myself for 20 hours trying to find info. And i have, really great info--but my mind is like a sieve. why did i bother reading everything, i retain maybe 10% of what i read lately.

what is a leaky gut?

I put a call into a great naturopath who helped a friend of mine with lyme. So hopefully she will give me some answers and I will better be able to make decisions. I do know i will be taking homeopathic remedies for this along with supplements-just not sure what supplements as of yet. Hopefully the primrose will help, as someone mentioned before. Is that EPO? I know i have neuro stuff going on, i have tremors for 1 1/2 years in my hands and various parts of my body twitch way more than ever. you know the normal leg muscle spasms...well i get them too frequently and now they have moved into my eye. talk about annoying!But i want something that will cross that barrier.

I am too tired and in way too much pain tonight. usually the nights are bad., the past few months ive had insomnia because of the leg pain. ugh.

I hope my naturopath knows about cats claw. I want to know more about it. I want to know more about everything, but i just dont know if i can handle being so obessed about this and taking care of myself. I just dont have the energy between taking care of my 4 unschooled kids and work and what i need to get done before monday night. im just so tired. off to bed


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## doulajewla (Mar 1, 2005)

I never realized how hard this journey would be. I cannot find a doctor near me. The closest one on the website is 3 hours away. i am way too tired to do long trips unless someone drives for me. Dh has to work, he is away 2 days a week in manhattan and I am in VT. I am still trying to find one closer to me. Its a shame all doctors arent taught in medical school how to properly treat lyme. The infectious disease people (who my jerk doctor referred me to) said they cant get me in until mid january. I dont want to wait for antibiotics until then. Now that I have found the cause of my pain I want to get rid of it. How long does this take...how long from the start of abx until I get some relief from leg, foot and hip pain? i still keep up the house and do things with the kids, but i am irritable and cranky and tired and feel so run down every single damn day. some days are better than others with little pain. today its a 7 on a scale of 1-10. Not so bad i guess, but it just makes me so tired. Off to take a hot shower, i so need it.


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## flutemandolin (Nov 20, 2001)

Quote:


Originally Posted by *PrayinFor12* 
Flutemandolin,
There is? Really? Are you sure it IS accurate or do they just _say_ that. I mean, they _say_ that about the human tests too.
If that info is right, I totally don't get it!

When I took my dog in to get neutered a couple weeks ago, they asked if I wanted to have him tested for Lyme and a few other things. Since he's an outdoor dog (Siberian husky), and we live in a high risk area for Lyme disease, I said okay. The next day when I picked him up they had the results, and guess what, he tested positive for Lyme and one other tick borne disease.







He got a month's course of Doxycycline. I'm not sure what kind of test they use, but they must be able to do it right there at the vet's office.

I said I'd tell the rest of my story, so here it is. We (me, dh, ds10, dd8, and ds6) live in a rural wooded area in Minnesota. We have all tested positive for Lyme disease over the last four years; dd and ds6 were the only ones that had the rash. Or I should say rashes; they both broke out in multiple bullseye rashes all over their bodies. (Here's a photo) We found out ds10 had it when he was having pain in one knee; the doctor drained a lot of fluid from it and had him tested for Lyme, and it turned out positive. All the kids seem to not have any symptoms since they were treated with antibiotics...so far.

I suspect I may have had Lyme for eight years or more. I do remember several times in 1999-2000 (also high stress years for me) when for a couple days I would have flu like symptoms and spike high fevers; this was not during flu season. in 2004 (another high stress year) I started having joint pains and fatigue; I tested positive and did 21 days of Doxycycline. I can't even remember if I felt better after that, but since then I have had on and off bouts with pain and fatigue. I have gained over 40 pounds while eating a better diet than ever (I avoid sugar and processed foods as much as possible, eat organic, pasture-fed meat and eggs and organic vegetables, etc.) I think my thyroid has been affected; last year I had a TSH of 3.75 which is high by the new standards, but the doctor said the other thyroid numbers were "normal". One of my eyelids twitches a lot, and I have lots of floating spots in both eyes. I have a few other symptoms, like brain fog and irritability. I've done tons of research on the Internet, and everything I have has been associated with Lyme.

My dh hasn't been feeling right either; lots of sharp, migrating joint pains, and general fatigue. To top it off, he had a stroke a month ago. At age 52. I don't know if Lyme had anything to do with it, but I have heard Lyme can cause stroke like symptoms. Thankfully it wasn't a major stroke, but his right side and his speech are affected, and he's improving with physical and speech therapy.

Of course the doctors around here don't believe in chronic Lyme, although they are pretty good about suspecting and testing for acute cases. Even if they did acknowledge chronic Lyme, I don't know if I'd want to do long term antibiotics. I have heard about the Salt C protocol, and was even trying it for a while, but for some reason or other I stopped. Dh and I are taking cats claw now; we've been on it for about a month and he claims he's feeling better. I think I may have been having a Herxheimer reaction this week; one morning my muscles were achy everywhere.

Thanks all for the good info on this thread!


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## PrayinFor12 (Aug 25, 2007)

Oh my WORD we're chatty this morning! Good!

Girls, I need specific help here. I am currently 7 weeks pregnant and have chronic Lyme. I've just printed 5 pages from Burrascano and PubMed. But I need more!

Please link me to _anything_ you've found about pregnancy with Lyme! And hook me up with any real people you know who've had Lyme and gotten pregnant.


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## doulajewla (Mar 1, 2005)

What is the Salt C protocol?

What are my other alternatives, in a nutshell? I cannot keep going through threads to find this i get brain fog and overwhelmed, then i shut the whole computer down and say forget it. What supplements should I be taking? I already know EPO. I am taking a fish oil, dont know if that helps, but it does help take the edge off my moods.

My eyelid started twitching bad 4 days ago. I just thought it was a freak thing and never worried about it. Then 2 days after it started, I found out i was lyme positive. It twitches alot so bad to the point that I cant see when I drive. My eyelid is forced down and flutters. Then both my eyes tear. Last night we were laughing because i look so funny when it happens and then my cheek twitched on the other side. i was like ok ok. all morning its been twitching on and off, and right now my other eye, right below it is twitching. ive had muscle twitches before like in my legs or arms, but not that often. ive had eye twitching when I was younger and under stress, so thats what i thought this was. Maybe it still is, idk. I just know it started 4 days ago and not stopped yet! its crazy.


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## PrayinFor12 (Aug 25, 2007)

doulajewla,

I know you're confused and overwhelmed right now. I've been there.

Now is the time to just get on an antibiotic. That will start helping and you can work from there.

When I got that bad, I JUST got on the antibiotic. That was the first step. I'm convinced it saved my life.

Start there.


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## doulajewla (Mar 1, 2005)

I have the doxycycline. I wanted one that will help my brain though. I guess I will start there though I am terrified of taking it. I have issues with taking pills, BIG issues.I fear that I will have a severe allergic reaction. I am so scared more of the abx than lyme itself.


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## Amydoula (Jun 20, 2004)

Quote:


Originally Posted by *doulajewla* 
I have the doxycycline. I wanted one that will help my brain though. I guess I will start there though I am terrified of taking it. I have issues with taking pills, BIG issues.I fear that I will have a severe allergic reaction. I am so scared more of the abx than lyme itself.

Dr. Hale's book says to only take doxycycline for up to 3 weeks for BF b/c it can cause problems in the child's teeth if taken longer, so I'd take it for the short term and then get something else you can be on long term. You will feel some relief quickly once you start taking the pills or so say DH's relatives that have had the lyme. Just do a search on Hale's forum for the drug: http://neonatal.ama.ttuhsc.edu/cgi-b...cus/discus.cgi You'll get his replies.


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## Jeanne D'Arc (Apr 7, 2007)

Ask and it shall be given









sorry i feel like total crap today as i have a nasty cold
so bear with me. On a day I am feeling better I will go into
greater depth about the diet , detox and destroy factors.
Until then i hope this will do.

Part of healing Lyme is:

Diet
Detox
Destroy

the three D's

Diet: Little to NO sugar, Low on carbs, No junk food, preservatives
etc. ( i know NO fun huh?







) Find out what your food allergies
are and avoid those for the time being. If you cant afford Allergy
testing, try an elimination diet ( removing popular allergy foods
from your diet ) . But no matter what keep the sugar and
junk food away!

Do eat things like, rich soup broths and soups, raw protiens,
rich colorful vegetables ( but try to stay from too much starch).
Cod liver oil or fish oil for hormones and fatty acids. Verse
yourself in what the body needs. www.westonaprice.org is
a great place to start the information is free.

Detox: Lyme and coinfections inject horrible toxins into you
when they die or feel threatened, dead bugs and toxins
build up in your lymph system, you cannot kill w/o detoxing
it will be torturous. Things you can do are things like Coffee enemas,
taking french clay ( yes drinking it ), Clorella pills, Epsom Salt
baths, sauna...etc. Herbal detoxes that detox the organs are
good too, everything needs to be cleaned out .

Detroy: You obviously need to kill the little bastards right? right.
Aside from antibiotics, there are other methods that others I know
have used...there is Rife,Salt/C,MMS,Ozone, and herbs.
Rife is an electro magnetic device that sends electric current
into your body, but it is not the strength that would do damage
to you but targets the specific pathogen you want to destroy,
everything that lives has a frequency that will kill it, that is
the way rife works. Not all Rife machines are made equally and
they are very cost prohibitive, the doug coil i have purchased
is worth 2 grand.

Salt/C, salt c tonic, is a protocol which raises the salt concentrations
in the blood to basically "burn" the bugs out. Salt kills many pathogens
including bacteria, parasites, protazoa ...

MMS I am just learning about, aparently it is a chlorite oxygen combo
that kills pathogens, i am hearing people rave about it literally on
the groups i frequent, but have more to learn.

Ozone, is oxygenated water...the machines are expensive but
it is possible to buy powdered activator. I know this is all so
confusing....








Ozone is lethal to pathogens esp single celled organisms, ozone
helps the body to detox, kill and repair, you can not OD on it,
it will not harm you.

I highly recommend those of you looking for adjunctive protocols
OR a different way to try and kill the lyme visit these groups.
Everything i have mentioned and more is discussed and
there are people there who have healed and improved themselves
using these therapies.

http://health.groups.yahoo.com/group/lymestrategies/

http://health.groups.yahoo.com/group/Lyme-and-rife/

this website explains in full the Salt/C theory..

Lyme Photos

Books:

Nutrition and Physical Degeneration

Top ten Lyme Disease Treatments


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## doulajewla (Mar 1, 2005)

wow thanks









I am only on the doxy for 3 weeks because that is all the dr gave me. He said in 3 weeks i might be fine so I dont need anything else. I disagree...this is why i dont want to go to him I am trying hard to find someone else. My mom and sister are so worried and i just keep telling them to knock it off--they are searching for doctors and calling places 4 hours away. Its so annoying lol. they are just trying to help. I know i need help soon but really....i just want to forget i have it. though every eye twitch and hip pain reminds me.....


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## doulajewla (Mar 1, 2005)

Having trouble taking the antibiotic. I am so afraid. I shouldnt let fear have a say in this. I am trying to see the healing properties of this and imagining it stamping out those spirochetes. Before I went to bed last night I asked myself to dream about the abx. I didnt remember my dream right away and then it came to me a little while ago. The only dream I remember is being on a porch and having this overwhelming urge to throw up. That I can deal with. I can deal with stomach issues, I do all the time anyway. I just couldnt deal with an allergic reaction.

Off to stare at the pills some more before i get the courage to take it.


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## PrayinFor12 (Aug 25, 2007)

doulajewla,
Just make sure you'll have someone with you for the first 48 hours after the first pill. Tell them why you want them close and make sure they know what to look for as far as the allergies go.
Gotta give it a shot girl. This is super likely to be a good thing.


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## doulajewla (Mar 1, 2005)

Thanks for the comforting words! I have to work tonight, just 3 hours of doula work...and I am just afraid of having a reaction at work. They are in the middle of nowhere too lol. I am just so nervous...i thought about it in the shower too just now. I felt the pills and dont feel anything bad. Just the thought of taking them makes my stomach hurt lol. I am trying. I want the cephalosporin--i know I am ok with those as I took them as a teenager.


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## doulajewla (Mar 1, 2005)

I hate posting so much--but this fear is very real.

I called the dr on call and lo and behold it was my regular dr. She had no idea i had lyme. I asked her for a cephalosporin (which i feel more comfortable taking because ive had it before) and she was more than happy to fill it. I took it about an hour ago with no side effects yet. Would i have them by now? I am so weird lol...but I cant help these fears. I am hoping for no side effects. Will take my probiotic in a while, already did EPO.


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## Jeanne D'Arc (Apr 7, 2007)

I totally understand, i totally have prescription phobia,
i think you would know by now but give it a few days,
are you familiar with the side effects and reactions of
that particular pill?


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## doulajewla (Mar 1, 2005)

i am just really tired but its ok. no side effects yet and i think it will stay that way. i was pain free on my hip for about 2 hours before so that was great! i braced for pain getting out of my chair and all i felt was emptiness..no big huge pain. On a scale from 1-10 I would say 1 and then later a 2. It was an 8 last night. Right now i just feel very warm and tired, my left leg hurts a bit and the toes do too but thats normal for me lol. Its always usually the left side that hurts(leg, hip, toes etc) and coincidentally i got bit on my left thigh. But i feel ok for now. The side effects of the abx was tiredness and dizziness..im just really really tired, but again it could be the lyme making me tired.


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## Jeanne D'Arc (Apr 7, 2007)

Hopefully its just the lyme dearie, I hope you start to feel
better and that it is effective for you infection.

Me, my cold is starting to let up...but i still feel awful, i dont
get sick that often. I cant staaaaand it.

what is it about fibro that makes the common cold
feel like the black plague??







:


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## doulajewla (Mar 1, 2005)

my mom has fibro, diagnosed a few years ago. I wonder if she has lyme also because 10 years ago she was bit by a tick, and I dont think she was ever tested. Maybe there is a connection?

I am sorry you are feeling badly. I hope you feel better soon!


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## 2busy2clean (Feb 3, 2005)

I'm about to celebrate my one year of lyme disease!

Since I don't like pharmaceuticals - don't like the short term or long term risks associated with them (and lets not go into environmental hazards of abx in the septic system!) I ended up trying the vit c/salt thingy and herbs. The vit c/salt did 'burn' a lot of bugs out (and gave me itchy skin to boot!) but I don't think that it slowed down the lyme disease progress at all. The herbs have been wonderful!! I am so glad that I have had lyme disease just because the herbs have been soo beneficial to my life. The main ones that I use are Japanese Knotweed (resveratrol from source naturals) and Astralagus. I used the Cat's claw for 6 to 7 months but didn't feel like it was doing anything at all, so I discontinued that. At one point I did investigate the Cat's Claw on 'steroids' that some lyme sufferers swear by, but I didn't like the possible muscle damage that it could cause (which I think is similar to the muscle damage which is possible with Doxycyline) so I never tried it. (am I way to cautious or what?)

About 2 months ago, I thought I was done with the nasty lyme organisms, so I slacked back on my dosage and drat it, the few remaining bugs came back. Sigh. So I know that it is in my left eye, and can affect my neck muscles occasionally. In the New Year I'll get tough again and beat this bug back into submission and hopefully annihilate it.

But, for those with it, I do recommend Stephen Buhner's book, Healing Lyme. I think that anyone with the disease, even using abx, would benefit from using one or two of his recommended herbs. Astralagus is now my favorite herb because it has my little brain working the best it has ever worked in my entire (almost) 40 years. (little note, astralagus is only good on early lyme disease - it will make lyme disease worse if you are in the late stages of the disease - read the book to understand.) And I don't know which herb is doing this, or if it is the combination, but my need to sleep has dropped. I've always been a 10 hours of sleep type gal, but now, I do great with 8 hours. So those herbs are fixing more than just a little bacterial infection.

oops, sorry to read like an herbal commercial.









Oh, and for me, caffeine caused major leg issues.
And detoxing is very important.

Jeanne - good to see you, in the past week when I've been playing here again, I haven't seen you at all! How's the bananas?


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## KermitMissesJim (Feb 12, 2004)

Wow. That described Lyme diet is almost completely incompatible with the IBS diet (Irritable Bowel Syndrome). I would have to choose between near-constant gastrocolic reflux, constipation and pain or letting Lyme continue to affect me if diet were my only option for healing myself.

However, my Lyme symptoms are NOWHERE NEAR as bad as anyone else's on this thread. I was on the doxy 12 years ago, maybe I lucked out and we hit the correct window for zapping it.


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## doulajewla (Mar 1, 2005)

KermitMissesJim, do you still have symptoms now or have you been fine for that long? How long did you have lyme before you found out, do you think? I am just trying to see what everyone says maybe...get a rough idea, though I know everyone is different. I have had lyme over 2 years now, i know when i got bit. havent been treated at all till yesterday. I know the sooner you treat it the better. Should it take me longer on abx (along with homeopathic, probiotics and EPO and good nutrition) because I have had it so long? Just wondering.


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## KermitMissesJim (Feb 12, 2004)

I was diagnosed in the late fall of 1995 after presenting with symptoms but no bulls-eye rash. Whatever test they were running 12 years ago came up positive. They assumed they caught it early as my symptoms were a crushing fatigue and joint pain but very little else. I did three weeks of oral doxy, had a follow up where the treatment was declared successful, and went home for the whole Christmas break to get some extra rest (mom and doctor thought it would be good for me, as I needed to graduate in the spring).

Fatigue-wise, I've never been the same again. BUT, I did have a nervous breakdown and suffer depression in 1997 (was working 80-hour weeks in high-pressure job), was in a very damaging car accident in 10/97, then got married in 1999, had ds in 2000, and have been a SAHM ever since. The fatigue could be related to my life in the last 12 years, and some of it is definitely caused by my IBS. It was about 18 months ago that I started looking around for causes for my symptoms (tingling hands, fatigue, serious gut problems) and some lyme articles came up in my search. However, since treating my IBS (diet and herbs), I am feeling better than I have in a long time, once you subtract the usual pregnancy fatigue.

So I don't really know. I could still have lyme, it could have been cured. It may never have been lyme at all.


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## Jeanne D'Arc (Apr 7, 2007)

Quote:

Since I don't like pharmaceuticals - don't like the short term or long term risks associated with them (and lets not go into environmental hazards of abx in the septic system!) I ended up trying the vit c/salt thingy and herbs. The vit c/salt did 'burn' a lot of bugs out (and gave me itchy skin to boot!) but I don't think that it slowed down the lyme disease progress at all

By progression, do you mean actual amount of bugs in your system
or them moving to different parts of the body? Yes it does ITCH!

Salt/C protocol is absolutely grueling, because it causes the bugs
to die quite violently and release allot of toxins into you. Some have
even reported seeing things come out of their skin trying to escape
the salinity of th body. I know several who have met much success
utilizing it with other protocols but it has taken at least a year or two.
Myself I'd rather just use all of them, i havent looked into the
herbs but so far, my protocol will look like this.

Traditional diet
Avoid allergy causing foods, sugar, and most carbs
MMS
Salt/C
Ambrotose/Immunostart
Dr. Rons glandulars,and vitamin
Rife therapy
Ozone therapy
DETOX with Epsom salt baths, clay, clorella (possibly enemas)

and possibly herbs, but i would want them to be high quality ...
i wouldnt be doing Astragaalus though because ive definitely
had it for years.


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## mysticmomma (Feb 8, 2005)

:


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## 2busy2clean (Feb 3, 2005)

Quote:


Originally Posted by *Jeanne D'Arc* 
By progression, do you mean actual amount of bugs in your system
or them moving to different parts of the body? Yes it does ITCH!

I did have a white 'thread' come out of my side about 30 hours into my high dosage of vit c/salt. and then there were many little bumps on/under my skin that itched - I assumed they were dead bugs. Herxes were pretty regular on the c-salt combo, which was fairly interesting and sometimes embarassing.

However, I felt the lyme continued its on-slaught, because when I began the lyme early in the second month of contamination (or late in the first month) my only symptoms were aching knee joints, the hideous itchy rash and being tired. After doing the c/salt for 3 weeks, I began to have mental issues - how odd to be two blocks from home, but turning the wrong way - and those heart palpations which scared me into moving on to the herbs.

A great herb for chelating heavy metals is cilantro, which is easy to grow at home (high quality organic), and is yummy too.







However, if you do have a heavy metal problem, you will know it, cuz the headache is rather painful.

Dr. Schulze has a great detox tea, which I believe helped me. I think that his webpage is herbdoc.com.

A couple other things that has helped is, Vit B for mental stability, Magnesium for muscle cramps and, when I did the c/salt I mixed it with psyllium husk which gave me an excellent colon cleanse. (i was just trying to protect my tummy...) A decent Vitamin/mineral product I used was All One, which my dh and I had been taking before my intoduction to lyme. I'm sure that product helped, but I've stopped taking it because I'm doing fine without it.

As a curious person, I'm interested in the Rife machine, but lack the $ and need for it.

Do check into Japanese Knotweed/Source Naturalsbrand, Resveratrol. The herb does many good things, and is one of the safest herbs out there. If you are interested in more information on it, message me.


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## Jeanne D'Arc (Apr 7, 2007)

Thank you very much, i will add those herbs to my list. : )

They aren't stimulants are they?


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## Rachel J. (Oct 30, 2005)

My ND found and is treating me for spiroketes but I'm not sure if that qualifies me as having Lyme. I definitely have some of the symptoms (for about 1 year now) and all of my attempts to improve my situation have done little. My dh said that the more I've tried and the healthier I've started eating and supplementing, the sicker I've become. Anyway, just wanted to introduce myself and let you all know that I appreciate all the info.


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## doulajewla (Mar 1, 2005)

If I only do 3 weeks of abx, and still am in pain, do I still need to see a dr and have more? Im getting to the point of not caring. I cant find a lyme specialist dr who is taking new patients. Ive been on abx a week and i find at times im getting worse. I am also still doing EPO and probiotics. I see the homeopath next week. I plan on an epsom salt bath too, cant hurt. If i never get another abx will i get rid of this? Ive had it 2 years without treatment until a week ago. its actually been over two years. Im sorry, im just really shaky and irritable today. Doesnt help that every dr i call either gives me an attitude about my insurance or says they arent accepting new patients.

Trying to find the peace within.....making friends with my spirochetes.


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## Jeanne D'Arc (Apr 7, 2007)

I know many who are getting better and living normally
again. But most of them are going alternative route.

Have you checked ILADS? Thats how i found my llmd.
I havent even yet seen him though yet. Hopefully
soon.

Again the people i know who have done well with abx,
have needed to take them longer than the "usual"
prescribed time frame. I am not an abx expert though,
and you are probably herxing from the abx.

If you are interested in adjuncts ( other therapies)
I highly recommend you check out some of the groups
i posted in my pp. Good luck I hope you find what you
are looking for.


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## doulajewla (Mar 1, 2005)

ty









I have looked on LLMD and they are either too far away or not accepting new patients. Im still searching other states on there though.

I just dont know if I should bother with anything if this isnt going to go away ever. ive had it 2 years already, not treated. Back to my research


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## 2busy2clean (Feb 3, 2005)

Quote:


Originally Posted by *Jeanne D'Arc* 
Thank you very much, i will add those herbs to my list. : )

They aren't stimulants are they?

In what way? lol I'd be shocked if Resveratrol kept you awake or made you hyper. It does have a drug interaction with blood thinning agents and for other reasons should not be used in pregnancy. (but don't they all say that?) There are possible side-effects but they are minor, dry mouth, nausea, vomiting, diarhhea.

Here is a good link: http://www.acuherbology.com/newsItem...&returnTo=news check out herb #3


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## 2busy2clean (Feb 3, 2005)

Quote:


Originally Posted by *doulajewla* 
I just dont know if I should bother with anything if this isnt going to go away ever. ive had it 2 years already, not treated. Back to my research









don't know what to say, except:


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## chancemakes5 (Dec 20, 2005)

I posted in the adrenal fatigue thread because my naturopath told me adrenal fatigue was most likely my issue, today I here that Lymes is also right at the top of the list.
My symptoms are so severe. Some days I just hope to make it through the day and get some loving time in for my kiddos.
The symptoms that are getting me are facial numbess, plus numbness and tingling, sometimes pain in my arms and legs/feet.
I also get very shaky and feel that my insides are trembling. This especailly happens when I eat bananas, I just figured this out.
I have such a long list of symptoms and now I have terrible food issues. I had the ELISA panel done and found a handful of foods I can no longer eat.
I did eliminate gluten, dairy and eggs and much of the bone pain feelings I had have gone.
When I stand up I get dizzy and feel like I'll pass out. I can't sleep at night, I wake up and feel sick, like shaky and passing out also, does that seem possible, I'm sleeping, lol.
My brain is so foggy I can't seem to remember the smallest things and I say the wrong words.
My kids and husband at first thought this funny, then they became concerned.
I know I'm thinking the right word, but another off the wall word comes out of my mouth.

I've been ill since an accident in March of 2006.
A Dr recently told me that I had EBV at one point, but whenever my symptoms are really severe I get tested and NO EBV. MY whole family tested positive for EBV at one point as I'm sure would everyone I know.
So now I'm having tests done for adrenal fatigue, thyroid, and Lymes.
My doctor did suggest labs that I have seen mentioned here, so I feel confident.

I have five little ones. One boy in remission from Leukemia and one with anaphylactic allergy to nuts, so it is already difficult to shop for food.
I just want to be a normal mama again, or rather who I was before since there really is no normal, lol.
I'm tired, I have no energy, my husband misses me







and my kids need a mom.
I'm so glad to have found this site again.
I feel like I'm getting better and then I'm knocked down again. It's a vicious cycle.

I do take samento, n acetyl cysteine, dgl,circulation factors(poor circulation and reynauds)EPA/DHA, and a few others.
I eat all natural whole foods plus meat, which is new to me when I married.I was sort of a vegan with dairy and eggs.I avoid sugar with only the occasional apple. All processed foods or most anyway give me terrible reactions. I'm being tested for celiac as well.
There is so much more, but I think you get it, lol.
May I ask how you make this easier to read and not look like a book, he he.


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## Jeanne D'Arc (Apr 7, 2007)

Quote:

I just dont know if I should bother with anything if this isnt going to go away ever. ive had it 2 years already, not treated. Back to my research
Well very few people on that group have treated it right away, most
have had it for as long or way longer than you have, and many
are doing really good. I have also heard some people getting
better with abx after having it a long time but they had to be
on them a long while.


----------



## doulajewla (Mar 1, 2005)

Back when i listed my symptoms and said i had strep 4 times in the last year and a half...and someone asked if it was strep or relapse...i have something interesting to note that I just remembered.

Could it totally not have been strep? I think i had to be though because i did test positive for strep. BUT...i knew i was getting strep when A.) id get sore throat that wasnt "normal" and B.) i would feel "wiggling" on my lip. id feel these things wiggling and burning on one corner of my lip. Then later as it progressed, id feel wiggling and burning in my throat. it felt like tiny worms, tiny worms with hot sauce LOL!. every time i got strep i felt that. ONLY one time when I got strep (back in april of this year, the last time i got strep) did it mangle my lips so bad that i have nerve damage on one side of my lip. I am numb on that side and from time to time it bothers me. What happened was that the strep attacked, and i formed blisters on my lips. One blister was horrible...went very deep into the lip. Didnt heal for 2 months. Could that have been the lymes? Going out on a limb here, but does strep wiggle? lol. just thought of it and thought id post.


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## Metasequoia (Jun 7, 2005)

Quote:


Originally Posted by *chancemakes5* 
I posted in the adrenal fatigue thread because my naturopath told me adrenal fatigue was most likely my issue, today I here that Lymes is also right at the top of the list.​
​
​
As I read your post in the AF thread, Lyme crossed my mind, but honestly, AF really came to mind.

Quote:


Originally Posted by *chancemakes5*
I also get very shaky and feel that my insides are trembling. *This especailly happens when I eat bananas, I just figured this out.*

This really struck me! Have you read the whole adrenal thread? Bananas are very high in potassium - potassium competes with sodium in our bodies - people with adrenal fatigue are very low in sodium & have a very hard time staying hydrated because of the sodium/potassium imbalance.

Let me go look up exactly what I wrote on the adrenal thread....

Quoting myself:

Quote:


Originally Posted by *Me*
Dehydration is a biggie for AF patients. We have a problem with the sodium/potassium ratio (why we shouldn't eat potassium rich foods & need lots of salt.) I know when I first wake up in the morning, all I want to do is chug down 2 pints of water, but I have to wait until I get a good amount of salt in my system.
When I first wake in the morning, I cook eggs & salt them very heavily - after I eat them, then I can drink water, but plain water on an empty stomach is a no-no. We need *a lot* of salt. You'd be surprised how many people suffer unknowingly from some degree of adrenal fatigue - especially us sleep deprived mamas.

And here's my post about licorice's role regarding the sodium/potassium imbalance in adrenal fatigue in post #34:

Quote:


Originally Posted by *Me*
The licorice extract inhibits 11 beta hydroxysteroid dehydrogenase (11-BHOD) in the kidneys. 11-BHOD is the enzyme that inactivates cortisol. People with adrenal insufficiency do not retain enough sodium, and have an excess of potassium. The ratio between our body's sodium & potassium is like a seesaw. If one goes up, the other is down. Blocking 11-BHOD in the kidneys allows cortisol access to the mineralocorticoid receptors triggering an increased retention of sodium and a lowering of potassium. This action brings a person with Chronic Fatigue Syndrome into sodium/potassium balance, therefore, supplementing these individuals with otassium is not needed nor recommended.
The increased sodium causes the body to conserve water, which quickly increases your overall blood volume. Increased blood volume indirecty increases blood pressure by increasing the efficiency of the heart.


Quote:


Originally Posted by *Jeanne D'Arc* 
Well very few people on that group have treated it right away, most
have had it for as long or way longer than you have, and many
are doing really good. I have also heard some people getting
better with abx after having it a long time but they had to be
on them a long while.

I think 4 months is the minimum, but really, only *your* individual response to treatment is the deciding factor in when to cease treatment. Keeping a *daily* log of your symptoms is key (whether treating it with abx or holistically) because you'll be able to track the cyclical nature (flares) which should cease when you've healed.​


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## doulajewla (Mar 1, 2005)

I got in touch with our local ND and she told me that cephalosporin was "interesting" and to stop nursing the 2 year old, shes had a good start and circumstances are now less than ideal. The last time someone told me to quit BF cold turkey I did and my dd suffered horribly. I think I just had some kind of flashback lol because I got scared id have to quit when we werent ready. She also told me that there is no proof of lyme being transferred via breastmilk. I dont know and my head is spinning, its hard to concentrate, so I have almost no clue what im doing.

Should I quit BF? I dont want to. Id rather quit the abx. Maybe this ND doesnt understand BF. I have never been able with my other 3 to extended BF. My first baby decided at 6 months he didnt want it. Then my dd and I quit too early because a dr told us to. (I was so stupid!) then my 16 month old dd decided to quit as Id chase her around the house asking if she wanted more milk lol. She was done so i had to accept it and did actually---we were both ready I suppose, so that was ok. But now, yes sometimes having her nurse too much is annoying that i will admit. I could do with nighttime and morning nursing and all day without. But to make her quit when shes not ready...ugh. Already when I tell her I cant nurse her right when she wants me to because im sore or whatever, dont feel good etc, she has a complete fit. Is cephalosporin that dangerous that I should not have been nursing her this long? I am in a fog this morning and cant breathe...my day is not starting off well.


----------



## Metasequoia (Jun 7, 2005)

Quote:


Originally Posted by *doulajewla* 
I got in touch with our local ND and she told me that cephalosporin was "interesting" and to stop nursing the 2 year old, shes had a good start and circumstances are now less than ideal. The last time someone told me to quit BF cold turkey I did and my dd suffered horribly. I think I just had some kind of flashback lol because I got scared id have to quit when we werent ready. She also told me that there is no proof of lyme being transferred via breastmilk. I dont know and my head is spinning, its hard to concentrate, so I have almost no clue what im doing.

Should I quit BF? I dont want to. Id rather quit the abx. Maybe this ND doesnt understand BF. I have never been able with my other 3 to extended BF. My first baby decided at 6 months he didnt want it. Then my dd and I quit too early because a dr told us to. (I was so stupid!) then my 16 month old dd decided to quit as Id chase her around the house asking if she wanted more milk lol. She was done so i had to accept it and did actually---we were both ready I suppose, so that was ok. But now, yes sometimes having her nurse too much is annoying that i will admit. I could do with nighttime and morning nursing and all day without. But to make her quit when shes not ready...ugh. Already when I tell her I cant nurse her right when she wants me to because im sore or whatever, dont feel good etc, she has a complete fit. Is cephalosporin that dangerous that I should not have been nursing her this long? I am in a fog this morning and cant breathe...my day is not starting off well.

This is why I weaned Dd2 when she was 3.5 years old. I was tandem nursing Ds who was 8 weeks & Dd2 who was 3.5 yrs. I had Lyme symptoms & was actually clinically dx'd & had suspicious results from IGeneX, but not a positive.

I believe that it can be passed via breastmilk, the Lyme bacteria *HAS* been cultured in breastmilk & the top pediatric Lyme specialist in the world (Dr. J. in CT) claims to have witnessed it.

So, with the information that I had then, back in June of 2006, I weaned Dd2 on June 7, 2006. I wasn't ready. It was difficult because I literally couldn't sit down for 3 weeks. Anywhere.

I couldn't wean Ds because he was 8 weeks old. What if he already had it? He would need the best immune system I could give him which means breastmilk! Or, what if I weaned him & then he got bitten? Again, he'd need a strong immune system!

Many people also question the safety of raw milk. We drink it all of the time. SOme believe it can be passed through raw cow's milk while others believe that the cow would make antibodies that would protect us (which is what I choose to believe, maybe not very wisely.)

I have read of people, doctors, who have injected the lactating cow's udder with the Lyme bacteria & then milked the cow for her colostrum & have been healed from Lyme. It makes perfect sense, doesn't it? So why wouldn't it work for us?

It's really a personal decision. I go back & forth on the issue, thinking that Motehr Nature wouldnt allow this flaw in her system - but we've messed with Her system for so many years now that it's flawed in & of itself.

I wonder how vaxing comes into play here - my son wasn't vaxed at all, therefore his immune system is completely intact, that has to have an affect on what gets through, yk?


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## doulajewla (Mar 1, 2005)

Have you tested your ds for lyme? Just curious if he did end up getting it. I have not yet tested dd3 because i cant get a doctor to do it, but the ND said she will. I will see her next week.


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## PrayinFor12 (Aug 25, 2007)

I'm so glad you girls are talking about this.

In 7 months, I'll give birth. I am currently having relapses. Been on antibiotics for 4 months - 2 to go.

I want so badly to breastfeed! But the info is SO sketchy either way.


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## delightful2boys (Jun 4, 2005)

Quote:


Originally Posted by *PrayinFor12* 
Ok, Ladies. The woman whose email address I was hoping to offer says that's fine. But she doesn't want the email actually in the forum.

Angelpie, I know you need her help. Anyone else? I'll PM it to you.

I could use her help. You can pm me with her email address . DS8 has lyme and is on abx and I think I may have it. I have an appt in feb.

Thanks


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## jamie79 (Mar 18, 2006)

In regards to stopping BFing, I had to stop when I started taking the cats claw. My daughter was 2 years 4 months. I was more upset than she was, but she was not without repercussions. I looked at it like this: I knew that I had to get well if I was going to be an effective mother. As much as I wanted to continue to BF, there was no way that in order for me to get well, I could continue BFing because it is taxing on a body, especially a body that is trying to fight bacteria off and get well. So, I, in effect, put on my game face and have concentrated all my efforts on getting well so that I can be a better mommy, even though I am not BFing, which alone does not make me a good mother. I completely understand the emotions involved in wanting to child led wean, but this was just the hand I was dealt and I could not dwell on it.

There are lots of other ways to build your baby's (and yours) immune systems. I cannot stress enough the importance of diet. I am starting to actually live and want to live again. I was honestly trying to think of who was going to care for my children in the event of my death. I was so low, emotionally and physically.

Lyme is a horrible, horrible thing to have to fight off. But, you can fight it off. There is hope, you just have to determine that this bug is not going to get the better of you (not easy







) and start taking steps to heal.

I am not trying to sound preachy at all. I just want anyone who is feeling like there is no way to get better, know that you can.

HTH,
Jamie


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## doulajewla (Mar 1, 2005)

Even if you cannot breastfeed I dont think you should think of yourself any less of a mom.

Its just so hard. She either has it or doesnt from me breastfeeding for 2 years without knowing I was infected. I dont want to stop yet. She will be my last baby since the development of lyme and I dont want to give up yet.


----------



## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *doulajewla* 
Even if you cannot breastfeed I dont think you should think of yourself any less of a mom.

Its just so hard. She either has it or doesnt from me breastfeeding for 2 years without knowing I was infected. I dont want to stop yet. She will be my last baby since the development of lyme and I dont want to give up yet.

I understand. You are right. I am not any less of a mom, but it sure did feel that way at the time. I breastfed for at least 8 months with lyme (unknowingly) and if I had gone on abx, I would have continued to BF. However, with the cats claw, my ND suggested (strongly







) that I stop BFing. I sure do miss the closeness, though.

Jamie


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## doulajewla (Mar 1, 2005)

I get mad at myself also--for weaning dd2 when she was only 8 months old. A dr told me to--cold turkey and let the baby cry. I cried too with ice packs on my chest. It was terrible and horrible. I did feel like a bad mom----but i realized Im not really. It was what I was destined to do and my dd was destined to have that happen for a reason. everything we go through, horrendous and nice, are supposed to happen for a reason. We may not always know that reason though and to feel pain we always question why us? Painful and unpleasant things like this happen to all of us and we should not be shamed for it, there is always a reason.


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## Jeanne D'Arc (Apr 7, 2007)

Quote:

Could it totally not have been strep? I think i had to be though because i did test positive for strep. BUT...i knew i was getting strep when A.) id get sore throat that wasnt "normal" and B.) i would feel "wiggling" on my lip. id feel these things wiggling and burning on one corner of my lip. Then later as it progressed, id feel wiggling and burning in my throat. it felt like tiny worms, tiny worms with hot sauce LOL!. every time i got strep i felt that. ONLY one time when I got strep (back in april of this year, the last time i got strep) did it mangle my lips so bad that i have nerve damage on one side of my lip. I am numb on that side and from time to time it bothers me. What happened was that the strep attacked, and i formed blisters on my lips. One blister was horrible...went very deep into the lip. Didnt heal for 2 months. Could that have been the lymes? Going out on a limb here, but does strep wiggle? lol. just thought of it and thought id post.

Yes it could be. I have read that in the presence of magnesium or
viral illness bring lyme out of cyst (dormant) form. Which
is basically what you want.


----------



## doulajewla (Mar 1, 2005)

So strep could have brought the wigglies out? I thought it was always so gross i wanted to burn the back of my throat just to get the wiggling/burning to stop.


----------



## Rachel J. (Oct 30, 2005)

When I was tested by my ND he also checked my ds (who's been bfing for 16 months, I think my symptoms started around ds's birth). The ND didn't find any spiroketes in ds. I still have to consider when to wean because I have high levels of mercury and cadmium that obviously I can't deal with until he's done nursing. The info I got from my ND's office re: Lyme disease did mention that it can be passed through breastmilk.


----------



## doulajewla (Mar 1, 2005)

I thought so!

Um, has anyone heard of using this against lyme? Its MMS/chlorine dioxide. it makes me nervous. But everyone is raving about it---still doesnt mean i will use it because it could be worse than the lyme IMO...dh doesnt trust it, its been known as a mild disinfectant. Has anyone heard of this? i am just being bombarded by "buy this now and feel better" crap. I need to weed it all out....


----------



## Jeanne D'Arc (Apr 7, 2007)

Yes , i think i mentioned it in one of my pp. Allot of people
on Lymestrategies, and lyme-rife are using it with great
success, course they are also doing rife or salt/ with it,
herbs, ozone and detoxing.

Everyone choses which way they want to go with it.
i have considered mms as well, luckily you dont drink
it, you only put a few drops of it a day in some liquid.

I am not an expert on it so you may want to ask someone
who is taking it/familiar with it to talk to you.


----------



## flutemandolin (Nov 20, 2001)

I have been taking cats claw (Samento) for a month, gradually increasing the dose to 8 drops a day. In the beginning I felt nothing, but this last week has been hell. Achy all over, very moody (especially on Christmas eve







) and I have way more eye floaters than normal.

My theory is that this means the bugs are dying off and temporarily overwhelming my system. I wouldn't feel this bad if there were nothing there, right?


----------



## chancemakes5 (Dec 20, 2005)

I don't know yet for sure what I have, perhaps just adrenal fatigue and not lymes, but I have been taking samento for 8 months.
When I began my symptoms were so terrible I could hardly get out of bed. Recently I thought I was almost completely cured, so I went off all supplements. Then I got sick all over again, all my symptoms came back within three weeks, I started taking everything again. I hadn't gotten the body bone aches back yet thank goodness, so they might just be gluten related.
Anyway I do think the samento works. When I first took it things got much worse, then eventually I was feeling great.
The last couple of days almost feels like my body is happy to have the samento.

I'm glad floaters weren't all in my imagination.

Hugs to you.


----------



## doulajewla (Mar 1, 2005)

A friend of mine said that if I test positive for lyme, I probably dont have it. is this true? All the dr's i talked to and everyone with lyme said a positive is a positive for lyme. Is that correct? Or am I crazy in having a million symptoms and no lyme? I want to figure out what is wrong with me! i thougth finally i am being diagnosed with SOMETHIGN...then i hear just because its positive means nothing.


----------



## Metasequoia (Jun 7, 2005)

Quote:


Originally Posted by *doulajewla* 
A friend of mine said that if I test positive for lyme, I probably dont have it. is this true? All the dr's i talked to and everyone with lyme said a positive is a positive for lyme. Is that correct? Or am I crazy in having a million symptoms and no lyme? I want to figure out what is wrong with me! i thougth finally i am being diagnosed with SOMETHIGN...then i hear just because its positive means nothing.

I don't believe that - some of the bands are species-specific for the Lyme bacteria, no other organism can cause those bands to show up positive.


----------



## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *doulajewla* 
A friend of mine said that if I test positive for lyme, I probably dont have it. is this true? All the dr's i talked to and everyone with lyme said a positive is a positive for lyme. Is that correct? Or am I crazy in having a million symptoms and no lyme? I want to figure out what is wrong with me! i thougth finally i am being diagnosed with SOMETHIGN...then i hear just because its positive means nothing.

A positive is a positive. A _negative_ means nothing.

Everyone,
I keep hearing great stuff on Cat's Claw. I'm pregnant. What do I need to know?


----------



## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *PrayinFor12* 
A positive is a positive. A _negative_ means nothing.

Everyone,
I keep hearing great stuff on Cat's Claw. I'm pregnant. What do I need to know?

I was told to avoid cat's claw during pregnancy and BFing, which was why I quit BFing when I started taking it.


----------



## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *flutemandolin* 
I have been taking cats claw (Samento) for a month, gradually increasing the dose to 8 drops a day. In the beginning I felt nothing, but this last week has been hell. Achy all over, very moody (especially on Christmas eve







) and I have way more eye floaters than normal.

My theory is that this means the bugs are dying off and temporarily overwhelming my system. I wouldn't feel this bad if there were nothing there, right?

ITA, that was how I felt when I started the cats claw (after a couple weeks). It seems that each flare up (that lasts several weeks), gets less and less each time. Well, it has for the past 2 times it has happened anyways.


----------



## doulajewla (Mar 1, 2005)

: I too am interested in cats claw (but not pg lol)


----------



## PrayinFor12 (Aug 25, 2007)

Fellow Lymies,

I'm in severe pain and need your help. Went to the ER and they couldn't figure it out.

One month ago, I got a 20 minute foot spasm. My toes were disjointed. NOT the normal muscle cramp.
Since then, my foot has not relaxed - always sore to painful. It's moved into about 10 other muscles too.
And now I'm extremely sensitive to cold. Near-violent shivering.

Dh and I just realized it might be Lyme-related. Please rack your brains and try to help. I've never known pain this bad.


----------



## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *PrayinFor12* 
Fellow Lymies,

I'm in severe pain and need your help. Went to the ER and they couldn't figure it out.

One month ago, I got a 20 minute foot spasm. My toes were disjointed. NOT the normal muscle cramp.
Since then, my foot has not relaxed - always sore to painful. It's moved into about 10 other muscles too.
And now I'm extremely sensitive to cold. Near-violent shivering.

Dh and I just realized it might be Lyme-related. Please rack your brains and try to help. I've never known pain this bad.

I would definitely say this is Lyme related. Have you heard or discovered anything yet?

Jamie


----------



## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *jamie79* 
I would definitely say this is Lyme related. Have you heard or discovered anything yet?

Jamie

Lyme Doc thought is was a vitamin E deficiency - bull c**p.

There's a genetic disease called myotonia that looks like the most plausible explanation so far. But when I brought it up to the doc, he said it was probably the same thing but caused by Lyme. (Myotonia basically means the cell walls don't work right.)

Thing is, if it's Lyme-induced only, the muscle relaxers he gave me will help. BUT if it's really the genetic one, and I take the muscle relaxers, my lungs could stop. Uh, hello? So I don't dare take that risk!

We're going to go to a neurologist for genetic testing. Meanwhile, I have friends who are praying their heads off and that is cutting through the pain noticeably. Gag.


----------



## 2busy2clean (Feb 3, 2005)

Magnesium is good for relaxing muscles, without massive side-effects.

Somewhere here (mothering boards) I think, I read that magnesuim deficiency is common with long term diseases - which is what lyme is. When my leg cramps were bad I increased my magnesium, which got rid of the cramps. The past month or so, there have been a couple of times the arch of my left foot has cramped up, so I do know there are some little bugs left, but they haven't hurt me enough to get out of bed to get the magnesium capsules in the bathroom.

I think with lyme disease, as with most health issues, it is wise to look at possible nutritional deficiencies before you resort to pharmaceuticals.


----------



## PrayinFor12 (Aug 25, 2007)

I'm on massive amounts of magnesium. I also got a blood draw for it yesterday and will have results in a week. I would LOVE to find out that's all it is.


----------



## FrannieP (Sep 11, 2007)

Hi,
I haven't read through this entire thread, so pls forgive me if this is already mentioned, but I just came across this this morning and wanted to post it on the chance it would be useful to anyone here:
Mold & Lyme Toxins


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## flutemandolin (Nov 20, 2001)

FrannieP- That looks interesting. Thanks for posting it!

I have a question about magnesium. I think someone here, or maybe it was on the thyroid thread, mentioned that you should not take combined calcium/magnesium supplements because the body will not absorb both at the same time and calcium usually wins out. Does anyone know more about this? And are there any recommendations for a good magnesium supplement?


----------



## doulajewla (Mar 1, 2005)

I did hear magnesium is a must have for us lymies. I am not on it yet, but my multivit has it in it---so i wasnt sure if I shoudl take additional. same at the vit C--that is essential during herxing, ive learned, but i havent taken additional C because theres some in my multi. so confusing.

So I havent posted in a while but I was feeling good physically for 2-3 days this week. I noticed since sunday ive been getting hives...on and off one on my arm for no apparent reason, one in my mouth that hasnt gone away--well this morning i woke up and it was gone BUT i had forgotten to take my abx, which i only have 2 days left on---and i got scared thinking i was having an allergic reaction to abx. I have been on it almost 3 weeks now and the hives just started almost a week ago. so i called my dr and asked if i could just stop the abx and no one has gotten back to me, but i have already stopped it, havent taken it in over 24 hours. I have some mild pain back ,but nothing major, feel a bit feverish and tired but other than that im fine. i did get the hive back in my mouth so maybe its not the abx. I dont really care anymore, I am doing homeopathy which I attribute to making me feel better for those days anyway. we will see how that works, but I dont want abx. Im done. I am far too nervous to keep putting that into my body. I want to just let it go and forget i even have this...im just frustrated i guess...theres no llmds who are accepting new patients, not even 4 hours away. So its just meant to be, ill live with the pain. Today the palpitations came back after 2 weeks of not having them. At least they arent harmful, is what ive been told.


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *doulajewla* 
I did hear magnesium is a must have for us lymies. I am not on it yet, but my multivit has it in it---so i wasnt sure if I shoudl take additional. same at the vit C--that is essential during herxing, ive learned, but i havent taken additional C because theres some in my multi. so confusing... Today the palpitations came back after 2 weeks of not having them. At least they arent harmful, is what ive been told.

For what it's worth, the Lyme gave me palpitations too. My magnesium was increased dramatically and it all but cured them in 2 weeks. I'm on a lot more than the recommended daily dose. But it works.

As for the C, I'm on 17 times the recommended daily dose. That's fine with C - it won't be stored up in your body.

Your multivitamin has rather small amounts of these 2 items.


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## editmom (Dec 6, 2006)

Iv'e got it. Getting better. Herbs after months of antibiotics. Also yeast was very bad. Brain fog bad. I a tired and upset tonight so catch you all later.


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## doulajewla (Mar 1, 2005)

I am sorry you have lyme







I have been on 3 weeks of abx and am done tomorrow. After that I guess its just continuing with homeopathy, EPO, fish oil, multivit, Vit C (Ill take more of that, I didnt realize it was safe to do that, but duh I knew it but forgot lol!) mag, probiotics and herbs. I emailed the woman from a website someone posted on mothering somewhere, dont remember if its this forum, but the woman hasnt gotten back to me yet--she is an herbalist in NH. Finding an LLMD is tough. They are all not taking new patients. I dont know if I should bother going the hard core abx route or not. I just dont know what is right or better---or healthy. Some say 4 months of IV abx...ick. I dont know.

Does anyone get shaky? I was shaky about a year ago for a long time--thought it was the hyperthyroid, but the thyroid is fine now...and im shaky again for 2 days. Also, sometimes, for the past 2 years, I have had trouble swallowing. I am breathing fine and I can swallow--but it goes down really slow and its painful sometimes to swallow...i can feel it making its way down soooooo slowly. And yesterday i wasnt eating but just sitting and writing and i felt like there was a lump in my throat, it was really scary but Ive had this before also. Is this lyme related? I dont know what it is, but ive had it for a long time now, probably as long as ive had lyme, over 2 years now.


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *doulajewla* 

Does anyone get shaky?

I do know a Lymie who was untreated for multiple years. Her hand and arm completely ceased to function and hung loose at her side for years. After many months of antibiotics, she started to regain function and can know use her arm again. Just thought it seemed suspicious with what you're saying. (Don't know about the lump in the throat.)


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## doulajewla (Mar 1, 2005)

I was untreated until 3 weeks ago, and I got bit well over 2 years ago. I am still shaky and been on abx for 3 weeks. Lyme is in me pretty good, though I think I am better off than some. My symptoms have been getting better--almost 2 days after I took a homeopathic remedy. After dance though I still feel feverish and my legs really hurt and so does my hip, but thats to be expected with exercize.


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## doulajewla (Mar 1, 2005)

Im going to post again lol...even if no one wants to hear from me--but I just want to do some more asking. I am on another great group for lyme in my state, but i also want feedback from you wise mammas as well.

i got super frustrated today. I am just like forget this crap I cant do this anymore, I dont have lyme, Im just crazy and its all in my head. I tried to make an appt with the infectious disease people becasue they called me a while back and said i needed an appt but i forgot to call them back. So finally I called and they said that they spoke with my dr because they didnt think i needed to be treated for lyme anymore--i had 3 weeks of abx and i should be fine. So i got mad and called my dr and she told me (personally she called me back, that was nice) that after 3 weeks of antibiotics you usually are ok and kill the lyme so if I am having more pain its post lyme. She wants me to take a week of naproxin sodium(which I DO NOT WANT TO DO) and that should be fine for pain because its not lyme anymore, its after the lyme. what is post lyme? Is there such a thing? I still felt crappy on the abx but did have 2 pain free days which were nice, I attribute that to homeopathy. Everyday is different. My hips still bother me ALOT (pain scale a 9 out of 10) when i get up from sitting, but then with walking its ok, and my foot is killing me everytime i walk, but i can deal with it. Some days are better. Some days I have such a foggy feeling in my head that I dont feel Im real--i feel like i did when i had PTSD. but i dont have PTSD right now. It goes away in a few hours or maybe the next day, but its that brain fog. My dr also said that my symptoms that are weird that ive just experienced in the last 2 years may not be from the lyme. Am I a hypochondriac? My moods are stable some of the time--i dont yell and scream at my kids in the last few weeks, but i get intense rage still at small things with other people, i.e., doctors. If these symptoms arent from lyme, then there is really something mental with me, like i thought for the last 2 years. I have never been so sick in my entire life until 2 years ago. I have had strep and mastitis and pain and palpitations---and its not lyme related? then what is wrong with me??????

I just want to know what post lyme is. Maybe i dont have lyme anymore?


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## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *doulajewla* 
Im going to post again lol...even if no one wants to hear from me--but I just want to do some more asking. I am on another great group for lyme in my state, but i also want feedback from you wise mammas as well.

i got super frustrated today. I am just like forget this crap I cant do this anymore, I dont have lyme, Im just crazy and its all in my head. I tried to make an appt with the infectious disease people becasue they called me a while back and said i needed an appt but i forgot to call them back. So finally I called and they said that they spoke with my dr because they didnt think i needed to be treated for lyme anymore--i had 3 weeks of abx and i should be fine. So i got mad and called my dr and she told me (personally she called me back, that was nice) that after 3 weeks of antibiotics you usually are ok and kill the lyme so if I am having more pain its post lyme. She wants me to take a week of naproxin sodium(which I DO NOT WANT TO DO) and that should be fine for pain because its not lyme anymore, its after the lyme. what is post lyme? Is there such a thing? I still felt crappy on the abx but did have 2 pain free days which were nice, I attribute that to homeopathy. Everyday is different. My hips still bother me ALOT (pain scale a 9 out of 10) when i get up from sitting, but then with walking its ok, and my foot is killing me everytime i walk, but i can deal with it. Some days are better. Some days I have such a foggy feeling in my head that I dont feel Im real--i feel like i did when i had PTSD. but i dont have PTSD right now. It goes away in a few hours or maybe the next day, but its that brain fog. My dr also said that my symptoms that are weird that ive just experienced in the last 2 years may not be from the lyme. Am I a hypochondriac? My moods are stable some of the time--i dont yell and scream at my kids in the last few weeks, but i get intense rage still at small things with other people, i.e., doctors. If these symptoms arent from lyme, then there is really something mental with me, like i thought for the last 2 years. I have never been so sick in my entire life until 2 years ago. I have had strep and mastitis and pain and palpitations---and its not lyme related? then what is wrong with me??????

I just want to know what post lyme is. Maybe i dont have lyme anymore?









DoulaJewela...you are not a hypochondriac. I believe you have lyme. You were bitten and tested positive, right? Then, given all your symptoms, I would say you still have it. If I were you, I would get with a good Naturopathic Doctor and try to get these issues worked out for yourself and your family. I don't believe what that doctor told you about your "wierd" symptoms not being lyme. LYME=WEIRD! Lyme does terrible things to the human body. The thing that a Naturopathic Doctor will do is help your body's immune system get strong again, so that you can get rid of this lyme. I hope that you are able to find peace in this hard situation.

Jamie


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## doulajewla (Mar 1, 2005)

Thank you







I did test positive on both ELISA and western blot. Ive had weird symptoms for 2 years that i didnt have before. I still do. I cant afford an ND...i wont be able to afford the visits, as i already have co pays for my counseling and my sons counseling and co pays for the bloodwork my kids are having done to see if they have lyme...so I have to find an LLMD. Im still searching







I am kind of giving up--but if an LLMD falls in my lap i wont complain...er, well um...that sounded bad LOL!


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## Jeanne D'Arc (Apr 7, 2007)

Lyme disease is something so misunderstood, so widespread
and behind so many other ailments.Finally someone is brave
enough to make a documentary about this politically volatile
infection. It is so sad there is so much debate surrounding
this, patients silenced, doctor licenses revoked over something
so debilitating yet heretical.

We know all too well the struggles we face everyday, finding
a proper diagnosis and effective treatment. The full length
film isnt out yet for viewing but, hopefully soon!

Under our Skin (trailer)

Webpage ( with more info on Lyme )


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## doulajewla (Mar 1, 2005)

I am going to see an infectious disease dr in MA today. Its the only dr I could find who will treat lyme, and treat it more than 3 weeks of abx. I still dont know what I want to do....but at least i can talk to this dr and see what she says. See how good she is. I dont know anything about her except someone mentioned her on lymenet.org. This is the only dr I can get in to see, everyone else is not accepting new patients. I am scared if she suggests a PICC line. I am really really scared of that. I will update when I get back


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## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *doulajewla* 
I am going to see an infectious disease dr in MA today. Its the only dr I could find who will treat lyme, and treat it more than 3 weeks of abx. I still dont know what I want to do....but at least i can talk to this dr and see what she says. See how good she is. I dont know anything about her except someone mentioned her on lymenet.org. This is the only dr I can get in to see, everyone else is not accepting new patients. I am scared if she suggests a PICC line. I am really really scared of that. I will update when I get back









I hope everything goes well for you. I will be







: for you!!


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## doulajewla (Mar 1, 2005)

It was a great visit!!! I didnt know, but not only is she a doctor, but a holistic healer as well. Very cool.

I got all of the necessary bloodwork done---something I didnt know I needed. I had about 7 vials of blood drawn and they are testing for everything---24 different tests including co infection tests. Awesome.

I am going to take 3 months of doxycycline....she said if I feel better after a month and theres 100% improvement I could stop the abx. But there has to be a miraculous recovery. I am VERY nervous about taking the antibiotic. VERY VERY nervous. I am so afraid i will have an anaphylactic response....I never have before, but i am so scared I will. my stomach is a big ball of knots right now thinking about it.

We discussed nutrition and light exercize. I dont want to quit dance---but she said that since everytime I dance I am in severe pain and have fevers after means that my body is telling me its too much. But i think ill seriously be depressed if i quit.

She educated me on the proteins that are attached to lyme and why the CDC wants to make sure that the lyme titers are accurate before letting people being diagnosed with it---but they dont realize that those tests are really inaccurate. I cant remember everything she said---but she drew pictures for me and wrote it all down. She said that some proteins for say an autoimmune disorder can mimic the lyme ones and it can get confusing. So she does a huge test, testing for 24 different things....including liver enzymes and other stuff like that.

She said with my symptoms and positive ELISA and Western Blot I do have lyme---but we also need more information--is there more going on? She treats the symptoms and treats the patient as an individual, and doesnt say ok this is what we do for everyone. she tailors treatment to each person. I asked her about the hives I keep getting for no apparent reason and it seems like im allergic to things ive never been before---and she said either its a die off reaction or my body is reacting to the lyme like it is allergic to it. During the cephalosporin i was on, I had hives in my mouth during week 3. She said it could have been die off--BUT i was also on a womens multivitamin that had herbs in it i could have been allergic to, so we dont know.

She also talked about things like free radicals in the body, how they get there, what they are, how it ties all into lyme and other diseases too. Very informative.

So thats pretty much all I can remember without digging out my paper. I am happy with this doctor and satisfied with everything that went on yesterday


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## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *doulajewla* 
It was a great visit!!! I didnt know, but not only is she a doctor, but a holistic healer as well. Very cool.

I got all of the necessary bloodwork done---something I didnt know I needed. I had about 7 vials of blood drawn and they are testing for everything---24 different tests including co infection tests. Awesome.

I am going to take 3 months of doxycycline....she said if I feel better after a month and theres 100% improvement I could stop the abx. But there has to be a miraculous recovery. I am VERY nervous about taking the antibiotic. VERY VERY nervous. I am so afraid i will have an anaphylactic response....I never have before, but i am so scared I will. my stomach is a big ball of knots right now thinking about it.

We discussed nutrition and light exercize. I dont want to quit dance---but she said that since everytime I dance I am in severe pain and have fevers after means that my body is telling me its too much. But i think ill seriously be depressed if i quit.

She educated me on the proteins that are attached to lyme and why the CDC wants to make sure that the lyme titers are accurate before letting people being diagnosed with it---but they dont realize that those tests are really inaccurate. I cant remember everything she said---but she drew pictures for me and wrote it all down. She said that some proteins for say an autoimmune disorder can mimic the lyme ones and it can get confusing. So she does a huge test, testing for 24 different things....including liver enzymes and other stuff like that.

She said with my symptoms and positive ELISA and Western Blot I do have lyme---but we also need more information--is there more going on? She treats the symptoms and treats the patient as an individual, and doesnt say ok this is what we do for everyone. she tailors treatment to each person. I asked her about the hives I keep getting for no apparent reason and it seems like im allergic to things ive never been before---and she said either its a die off reaction or my body is reacting to the lyme like it is allergic to it. During the cephalosporin i was on, I had hives in my mouth during week 3. She said it could have been die off--BUT i was also on a womens multivitamin that had herbs in it i could have been allergic to, so we dont know.

She also talked about things like free radicals in the body, how they get there, what they are, how it ties all into lyme and other diseases too. Very informative.

So thats pretty much all I can remember without digging out my paper. I am happy with this doctor and satisfied with everything that went on yesterday









Oh Doulajewla, I am so happy for you! That is wonderful.























Now you can really focus on healing. What a blessing to have found a doctor that focuses on the individual first as opposed to the condition first.

Jamie


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## Jeanne D'Arc (Apr 7, 2007)

Congrats!

My husband called the LLMD in my area, i dont know if i'll do the antibiotics
though...

It's a personal choice.

Good luck to you! So happy you are finding answers finally to this
riddle of illness.


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## Jeanne D'Arc (Apr 7, 2007)

Changed name of the group, for a more fitting title.


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## PrayinFor12 (Aug 25, 2007)

Quick overview: Contracted Lyme 8 months ago. Started antibiotics after 3ish months. Still on 'em. Just had 2nd miscarriage in those 8 months. Currently having relapse. AND IT'S BAD.

Anyone know anything about post-pregnancy Lyme?

Anyone else, because of Lyme, get muscle pain, or joint pain, or nerve pain ALL over your body? I've got all 3 right now and am freaked out.

I need to know if this is Lyme-related.


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## newcastlemama (Jun 7, 2005)

Quote:


Originally Posted by *PrayinFor12* 
Quick overview: Contracted Lyme 8 months ago. Started antibiotics after 3ish months. Still on 'em. Just had 2nd miscarriage in those 8 months. Currently having relapse. AND IT'S BAD.

Anyone know anything about post-pregnancy Lyme?

Anyone else, because of Lyme, get muscle pain, or joint pain, or nerve pain ALL over your body? I've got all 3 right now and am freaked out.

I need to know if this is Lyme-related.

I will do a little intro first--

I had/have Lyme (I have not been retested but I do not experience symptoms at this point). I was treated with abx from about Sept2006-March 2007 when I quit because I personaly felt like it was doing more damage than good for me. I started getting much better after that and just worked on natural ways to boost my immune system (diet, relaxation, nutritional supplements..) and it seems to have worked.

I have pretty much attributed all the health problems (sudden onset of cavities, PPD/PPP, anxiety, abnormal cervical cells, miscarriage, Lyme) I had experinced over a 5 year peroid to an inadequate nutrient intake and too much stress--it just shot down my immune system. My dr thought I had Lyme for years before I ever felt it...I honestly think if I kept my immune system in optimal shape I never would have experinced any symptoms. (I know many people will choose long term abx for Lyme and have differnet ideas on disease---I do not judge that. I am just sharing what I have experienced and learned in my health struggles







)

Prayinfor 12--
I did have full body pain when I had Lyme symptoms--I felt like I had been hit by a car or like I had a severe flu with body and joint aching. About post pregnancy lyme--I think that a miscarriage is probably very stressful on the body/emotions and that your body is reacting in pain. I had a miscarriage about 6 mos before I was diagnosed with Lyme and I am so sorry for your losses







s

Jen


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## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *newcastlemama* 









I will do a little intro first--

I had/have Lyme (I have not been retested but I do not experience symptoms at this point). I was treated with abx from about Sept2006-March 2007 when I quit because I personaly felt like it was doing more damage than good for me. I started getting much better after that and just worked on natural ways to boost my immune system (diet, relaxation, nutritional supplements..) and it seems to have worked.

I have pretty much attributed all the health problems (sudden onset of cavities, PPD/PPP, anxiety, abnormal cervical cells, miscarriage, Lyme) I had experinced over a 5 year peroid to an inadequate nutrient intake and too much stress--it just shot down my immune system. My dr thought I had Lyme for years before I ever felt it...I honestly think if I kept my immune system in optimal shape I never would have experinced any symptoms. (I know many people will choose long term abx for Lyme and have differnet ideas on disease---I do not judge that. I am just sharing what I have experienced and learned in my health struggles







)

Prayinfor 12--
I did have full body pain when I had Lyme symptoms--I felt like I had been hit by a car or like I had a severe flu with body and joint aching. About post pregnancy lyme--I think that a miscarriage is probably very stressful on the body/emotions and that your body is reacting in pain. I had a miscarriage about 6 mos before I was diagnosed with Lyme and I am so sorry for your losses







s

Jen


Everything she said^^^Yeah that^^^I never took abx, however went into treatment using herbs and supplements and relaxation (yoga) and building a super nutrient dense diet, which, IMO is the KEY to all of the above. However, I would never take away from the importance of the yoga and herbs and supplements. The diet has REALLY, REALLY, REALLY made the biggest difference in my relief of symptoms. I had the terrible feelings you describe. I still occassionally have flares, but each time is getting further and further apart and also is not as severe. However, I did feel as though I had been hit by a car. I had left side of my body weakness. Almost like someone was sitting on the left side of my body. I had the terrible neck, shoulder, base of head pain (this comes back with the flares, though not as severe each time), also the tingling literally everywhere in my body.

I could go on, but I am sure you know exactly what I mean. I am so sorry for your miscarriage. This terrible illness is just that, terrible. I pray that you will be able to heal, soon. Blessings!


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## Jeanne D'Arc (Apr 7, 2007)

What are some nutrient dense ideas for someone who is on an extremely limited budget and cannot have ANY (and i mean ANY) Carbs or Sugar.

Basically all meats and fat for me. :S


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## jamie79 (Mar 18, 2006)

I eat lots of raw fats such as raw egg smoothies. Can you have bananas? I put about 1/2 of 1 banana plus juiced veggies plus butter and coconut oil. You could always sweeten with stevia. The jist of it for me is very lightly cooked red meat or raw fish. Also raw fruits and veggies. LOTS of raw fats. I keep repeating myself, but this has saved me. Can you do raw milk? I would say, on a budget, lots of eggs, meats, veggies. I would try brewing kefir or kombucha. I believe bone broths are wonderful, too.

I don't eat any grains at all. Well, sometimes I have a slip up, but that is VERY rare.

You should check out the grain free thread over in traditional foods. That is where I have gotten tons of info.


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## Jeanne D'Arc (Apr 7, 2007)

Sadly I cannot drink raw milk, I cannot have bananas, and stevia
gives me a headache.

I have an organism in my body that feeds quite violently on dairy,
ferments, carbs and sugars. As you can see that leaves me with
little choices.

I am quite sad i cannot drink the raw milk, as i know it has
potent healing properties. I do mourn that something that
could help heal me is something i cant even have.


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *newcastlemama* 
I started getting much better after that and just worked on natural ways to boost my immune system (diet, relaxation, nutritional supplements..) and it seems to have worked.

Prayinfor 12--
I did have full body pain when I had Lyme symptoms--I felt like I had been hit by a car or like I had a severe flu with body and joint aching. About post pregnancy lyme--I think that a miscarriage is probably very stressful on the body/emotions and that your body is reacting in pain. I had a miscarriage about 6 mos before I was diagnosed with Lyme and I am so sorry for your losses







s

Jen

Jen, this post is packed with info relevant to me.

Please name some basics of immune system boosting - things I can start pronto. What is the highest priority?

The theory about stress adding to the pain - logical. Extreme stress would lower my immune system, therefore making this relapse worse than normal. Am I right? I'm not sure!

And don't you think it odd we both conceived and miscarried while having Lyme?

Quote:


Originally Posted by *jamie79* 
I never took abx, however went into treatment using herbs and supplements and relaxation (yoga) and building a super nutrient dense diet, which, IMO is the KEY to all of the above.

Would you also offer your advice on what's most vital to do NOW? What could I take action on this week?

Quote:


Originally Posted by *jamie79* 
I had left side of my body weakness. Almost like someone was sitting on the left side of my body. I had the terrible neck, shoulder, base of head pain (this comes back with the flares, though not as severe each time), also the tingling literally everywhere in my body.

I am so sorry for your miscarriage. Blessings!

One side of the body was worse than the other? Thanks for the info! I was just pointing out to dh yesterday that I have worse pain on the right side. Kinda freaked me out. But if your weakness was worse on one side, maybe that's "normal?"

And thanks.

Quote:


Originally Posted by *jamie79* 
Can you do raw milk?

Can you fill us in on the reason to drink raw milk? I'd sure rather go for that than raw meat! People talk about raw milk like it's a miracle. Info please?

*Everyone*,
Jamie mentioned "tingling everywhere in my body." There are 2 things I have that I haven't been able to find officially listed as Lyme symptoms. I've been very worried that I have some other neurological problem on top of the Lyme.

If any of you have tingling/burning/stinging skin, please tell me.

If any of you have involuntary muscle movements, specifically tightening, vibrating, quivering, or feeling like you got a mild shock, please tell me.

_Thanks, Girls!_


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## newcastlemama (Jun 7, 2005)

Quote:


Originally Posted by *PrayinFor12* 
Jen, this post is packed with info relevant to me.

Please name some basics of immune system boosting - things I can start pronto. What is the highest priority?

And don't you think it odd we both conceived and miscarried while having Lyme?


For immune system boosting- I am not sure of your specific situation, but here is what works for me. I am just going to blabble on whatever pops in my head that I remember, so watch out!

1. This is what I wished I would have started with--Lots of fat soluables---especially getting in vitamin A (from food sources only)--High vitamin Cod liver oil (1T or more a day), pastured liver, egg yolks, pastured dairy products. _I must say that high vitamin cod liver oil and liver helped me immensely. I seriously wish I would have started eating lots of them and sooner._ Primitive people got in about 50,000iu of A day (and I think about 5,000 of vitamin D) so that is what I aim for. Vitamin D also helps with the immune system and has been shown to reduce pain in people with CFS.

2. Lots of fermented foods (especially because of the abx)--kefir, kombucha, saurkraut, homemade yogurt..(Cooking info is in _Nourishing Traditions_ by Sally Fallon) There is a lot of info out there about the gut being very important as far as the immmune sytem goes. (That is a main reason why I quit abx because I felt they were impairing my immune system andd that is not what I needed)

3. Are you zinc defiencient? It is very important for the immune system. Do you have white spots on your nails? I can tell you how to take a home zinc test of interested.

4. Coconut products may help too--I have read about them being anti-bacterial/fungal ect. Google more info about it and then add coconut milk/oil to your diet if it suits you. I ate a lot over the past year and I think it probably helped.

I do a traditional foods diet (based on the research of Weston Price). Vitamin/mineral and other supplements complemented that. I don't think they really would have worked out the the context of my diet though. More info www.westonaprice.org and the "Traditional Foods" section on motheringdotcommune.

Balancing my adrenals helped also. You can get a saliva test to see if yours are worn. I think it was $150 and very worth it, IMO. You could also see of you have any food intolerances and could be making you feel worse than you have to (gluten, dairy, ect). Cutting out gluten, dairy, tomatoes, and eggs helped my pain so much. I am hoping that as my gut heals further that I will be able to reintoduce these foods. Get in the sun as much as you can. Try and have close relationiships and don't isolate yourself--which is so easy to do when you are in chronic pain.

About my miscarriage--I did have a healthy baby and pregnancy in 2004 and I may have had Lyme back then. I really think that the reason I miscarried was because I was so depleated. Plus I was on anti-depressants so who knows if that played a factor too. I may still have Lyme disease and I am due tomorrow with a seemingly healthy baby so I don't think Lyme affected my fertility really.

I just want to tell you all there is hope. Healing does take time and it feels like an eternity when you are in the middle of it all. I felt my worst about 1.5 years ago but now I am "normal" again. Sometimes I just can't beleive it. I pray that you all find healing and hope.

Jen


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## kcs (Jul 7, 2007)

Hi gals, can I join your group? I have had lyme for probably 15-20 years, was just diagnosed about 7 months ago though, and will be starting abx treatment in a little over a month. I will have to wean my baby early to start the treatment, which is why such a long lag between diagnosis and treatment - we decided on 1 year as the cutoff, I just couldn't bring myself to wean him earlier than that, and as my doctor says, I have had this so long, that a few more months won't make a difference in the prognosis. We stressed over whether or not to discontinue when I was diagnosed, but decided that if he was going to get it from me (the jury is still out on whether or not it can be transmitted through breastmilk), then likely he had been exposed in utero (transmission in utero has been documented), and would need all the antibodies and other good stuff in the breastmilk even more. Anyhow, that is where things stand now - I hate the thought of having to take abx for likely a very long time (I am very anti-meds), but I hate the lyme even more, and I know how much damage it does, especially when undiagnosed for this long. I need to beat this thing, and from my research I feel like abx are my best shot at it. I do however want to combine the abx with natural therapies, will be taking lots of probiotics, and we are thinking of getting an infrared sauna - does anyone have any experience with these? Anyhow, I look forward to getting to know all of you, so sorry that you all have this damned lyme also though








-karen


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## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *kcs* 
Hi gals, can I join your group? I have had lyme for probably 15-20 years, was just diagnosed about 7 months ago though, and will be starting abx treatment in a little over a month. I will have to wean my baby early to start the treatment, which is why such a long lag between diagnosis and treatment - we decided on 1 year as the cutoff, I just couldn't bring myself to wean him earlier than that, and as my doctor says, I have had this so long, that a few more months won't make a difference in the prognosis. We stressed over whether or not to discontinue when I was diagnosed, but decided that if he was going to get it from me (the jury is still out on whether or not it can be transmitted through breastmilk), then likely he had been exposed in utero (transmission in utero has been documented), and would need all the antibodies and other good stuff in the breastmilk even more. Anyhow, that is where things stand now - I hate the thought of having to take abx for likely a very long time (I am very anti-meds), but I hate the lyme even more, and I know how much damage it does, especially when undiagnosed for this long. I need to beat this thing, and from my research I feel like abx are my best shot at it. I do however want to combine the abx with natural therapies, will be taking lots of probiotics, and we are thinking of getting an infrared sauna - does anyone have any experience with these? Anyhow, I look forward to getting to know all of you, so sorry that you all have this damned lyme also though








-karen

Welcome, or should I say UN-Welcome to this unfortunate group...it is not a fun bunch to be a part of, however, there is always hope, right?

My Naturopath uses the infrared sauna for her Lyme. It has been in remission/gone for a while, but she still uses it and raves about it. They can be pricey, though, no?

Well, I hope you learn a lot from these message boards and are able to heal quickly


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## kcs (Jul 7, 2007)

Yea, they are pricey unfortunately, but my DH was open to the idea of getting one, so hopefully we can scrape up the cash soon.

Since I have had so much time between diagnosis and treatment, I have been able to read up on lyme a lot - so much information out there though, it is kindof overwhelming. I'm a member of two California lyme yahoo groups also, which have been very helpful. I really think this is much more widespread than anyone realizes, so scary!
-karen


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## PrayinFor12 (Aug 25, 2007)

Jen,

THANK YOU for the advice/info.
I'm going to look into cod liver oil and pregnancy (not that I'm trying, but I'm forever careful). We bought strawberry kefir at Trader Joe's and dh left it out overnight. Sooo...still trying on that one. No - no white spots on any nails - I assume my zinc must be ok then?

Do you know an easy way to eat coconut milk/oil? I've never even eaten either one. And do you know how to eat liver without knowing you're eating liver? And now that I think about it, why liver?

Thanks!

I assume you've had your baby by now. I hope you're having a blast with him/her.


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *kcs* 
Hi gals, can I join your group? I have had lyme for probably 15-20 years, was just diagnosed about 7 months ago though, and will be starting abx treatment in a little over a month. I will have to wean my baby early to start the treatment, which is why such a long lag between diagnosis and treatment - we decided on 1 year as the cutoff, I just couldn't bring myself to wean him earlier than that, and as my doctor says, I have had this so long, that a few more months won't make a difference in the prognosis. We stressed over whether or not to discontinue when I was diagnosed, but decided that if he was going to get it from me (the jury is still out on whether or not it can be transmitted through breastmilk), then likely he had been exposed in utero (transmission in utero has been documented), and would need all the antibodies and other good stuff in the breastmilk even more. Anyhow, that is where things stand now - I hate the thought of having to take abx for likely a very long time (I am very anti-meds), but I hate the lyme even more, and I know how much damage it does, especially when undiagnosed for this long. I need to beat this thing, and from my research I feel like abx are my best shot at it. I do however want to combine the abx with natural therapies, will be taking lots of probiotics, and we are thinking of getting an infrared sauna - does anyone have any experience with these? Anyhow, I look forward to getting to know all of you, so sorry that you all have this damned lyme also though








-karen

Karen,
"Un-welcome" from me too.
It must've been hard to make the breastfeeding decision - but your logic seems good to me!
I sincerely hope the abx kick the Lyme's butt.

Random thinking here: I also take abx and probiotics. But doesn't the abx kill the probiotics? If so, wouldn't that keep the abx from having as much power against the Lyme? Does this thinking make sense?


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## kcs (Jul 7, 2007)

I have been wondering the same thing - some of the people in my lyme group separate the probiotics and the antibiotics by two hours, that is one of the questions I want to ask my doctor when I see her next. I am also wondering if taking kefir would be better than store-bought probiotics or not.
-karen


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *kcs* 
I have been wondering the same thing - some of the people in my lyme group separate the probiotics and the antibiotics by two hours, that is one of the questions I want to ask my doctor when I see her next. I am also wondering if taking kefir would be better than store-bought probiotics or not.
-karen

Interesting! Dh figured out for me that I was getting nightmare tummy aches when I took abx and probiotics at the same time. Mr. Brilliant figured they might be reacting together. Sure enough - I started spacing them and the tummy aches went away. Just fwiw.


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## Lymeade Lady (Jan 22, 2008)

Hello! Let me introduce myself and join the group none us wants to be in.









I discovered a large bite on my back summer of 03. Thought it went away (who looks at their back), but it really just faded and grew til it went from one side of my back all the way around to the side of my br**st. It hurt and I couldn't sleep except on one side (but I would accidentally roll.) But it was so faint the doctor couldn't really see it and I couldn't point without a mirror. But he gave me the lyme test and 3 weeks of antibiotic in the meantime. I got a positive result. About 5 weeks later I got my first real bladder infection and 6 weeks later had a follow up were I was told I was clear. By the way, this was all in Germany with a doctor who told me "inspirate" instead of inhale (He was proud of his English, but I don't think he listened well even when I spoke German!)

By then, I was inpatient for another baby, but waited a bit to give my body some rest. And then was shocked when I couldn't get pregnant for after 6 months. I had to just give up, but I started feeling more energetic about that time and did end up pregnant. I crashed. Bronchitis that would come and go for about 6 weeks. I was on the couch. I never ran a fever, so it was the 3rd time before I got an antibiotic, which in hind site, just put the lyme in remission. Well, I'll shorten the rest to say, much fatigue, about 4 weeks of light labor, 3 breast infections and horrid cracking later, I realized I wasn't recovered from child birth b/c pregnancy wasn't the problem--I still had LD.

So, I went the naturopath way. I breastfeed for 11 months and then started weaning (I think it took me about a month.) My dd tested (with Electrodermal screening) to have Lyme, but a sample of my breastmilk did not. After the year mark, I felt I needed to be able to detox. After a while I got frustrated with my ND and was feeling pretty well, so I just didn't go back. I tried to back off Cumanda (and herbal antibiotic), but noticed clean Lyme symptoms, so I went back on.

I found a new lady and am trying a different natural approach. I'm going to her less as I'm apparently doing much better. Unfortunately, I'm still having a lot of fatigue, which it seems is likely an adrenal issue. I'm going to have her test that next visit.

I do the traditional diet. I really need to get more fermented in my diet, but I do all soaked grains, raw milk (but no source of other raw dairy products), and pretty much organic food. Honey and Maple syrup are our sweetners.

One great Lyme thing I've found is the Zapper. It's basically the same thing as a Rife machine as far as I can tell. It's like $200, so not a huge investment. I felt the effects dramatically and within minutes the first time I used it (I was in bad shape that day, so I went from barely able to turn my head to my shoulders feeling lose.) I wish I'd gotten it sooner. I've only had it for a few months, but it's really helping.

I am trying the MMS right now. My uncle bought some for me, so I thought I'd give it a whirl. (I'm not even close to my uncle--it's honestly really touched me that he cared.) You work your way up to 15 drops. I am up to 7. I have felt a bit nauseous and had to back off a bit a couple times, so I know their is a kill off happening. The Zapper was already helping so much, it's hard to tell how much the MMS is doing. But the testimonies I heard were convincing enough to try it.

Another thing I like to do is fast. I don't know how good of an idea it is, but I've gotten wonderful results from doing the Master Cleanse (you can look it up on my blog). That's when I've felt the best--or I should say afterwords. It didn't hurt that it also helped me lose my pregnancy weight, which didn't budge for like 2 years. I really wasn't caring about the weight, but it made me feel so much better.

Speaking of pregnancy (someone on here asked something) I do know I had a VERY difficult time recovering from childbirth. I still had something unhealed at 6 weeks in my uterus and it caused some mild pain and showed on and ultrasound. I had trouble getting my gut to go back in (until I learned did T-Tapp exercises(that's on my blog too.) I still have awful saggy belly skin with stretch marks 3 years later. My body just wouldn't heal very fast. I wasn't back on my feet for quite some time either. It seems to just be a Lyme thing. It wasn't like that with my 1st child.

Anyway, that's my story. I'm planning on getting rid of this curse though. And I won't be so foolish to push my self without regard to my health or diet again. And my children WILL grow up knowing how to protect their health.

I should go and try to sleep, but sleep is not something that comes easily yet. I'd love that to go away soon. Well, good night all.:yawning:


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## PrayinFor12 (Aug 25, 2007)

Lymeade,
Awesome name and siggy.

Help us out here. What are "Zapper" and "MMS?"

Welcome to the group.

Waaaaait a minute. You said something about your neck and shoulders being immobile and then they got loose. Do you also have problems with muscles getting tight/contracting involuntarily? I can't find a single other Lymie that also claims this problem but my feet haven't "let go" since early Dec.

Holly


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## Lymeade Lady (Jan 22, 2008)

Quote:


Originally Posted by *PrayinFor12* 
Lymeade,
Awesome name and siggy.

Help us out here. What are "Zapper" and "MMS?"

Welcome to the group.

Waaaaait a minute. You said something about your neck and shoulders being immobile and then they got loose. Do you also have problems with muscles getting tight/contracting involuntarily? I can't find a single other Lymie that also claims this problem but my feet haven't "let go" since early Dec.

Holly

I think someone else on here mentioned MMS--the "Miracle Mineral Solution".

A Zapper is similar to a Rife machine, I think. It is a little box with gel pads that stick on your skin. It sends low level electricity at specific frequency through the body. The frequencies I use are specific for Lyme disease and Chronic Fatigue. Search Hulda Clark--she's the researcher behind them.

I get very tight in the shoulder region and when it's bad it goes up into my neck. Sugar is "best" way for me to get in trouble this way. Killing off the Lyme with the zapper loosens it up. It's not exactly involuntary, but it can get very tight. My "doctor" says that the traps getting very tight is typical LD.

Last night I watched a trailer for a movie about Lyme from this thread (I think) and liked it so much I linked to it from my blog. (Thanks someone!) It shows some people with their hands balled up (looks out of control), so you might be interested in watching it. It sounds similiar.

I read once there are 350 symptoms of Lyme. Enough me to just say--that's probably Lyme to just about anything.







What ever the bacteria attack, they damage, so it can affect the nerves, muscles, or whatever.

I did use to get a lot of pains in my feet. But one of the treatments I did along the way fixed that problem--but I couldn't tell you what. I've been using sets of herbal/frequency medicines and you take one set for a month and it works on one problem area like digestion, or circulation or nerves. And so some of my symptoms have gotten wiped out by those sets. It's very cool. But you have to do testing, b/c it's very specific to what's going on in your body. I'm a big believer in this natural stuff now.


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## jamie79 (Mar 18, 2006)

Quote:


Originally Posted by *Lymeade Lady* 
I think someone else on here mentioned MMS--the "Miracle Mineral Solution".

A Zapper is similar to a Rife machine, I think. It is a little box with gel pads that stick on your skin. It sends low level electricity at specific frequency through the body. The frequencies I use are specific for Lyme disease and Chronic Fatigue. Search Hulda Clark--she's the researcher behind them.

I get very tight in the shoulder region and when it's bad it goes up into my neck. Sugar is "best" way for me to get in trouble this way. Killing off the Lyme with the zapper loosens it up. It's not exactly involuntary, but it can get very tight. My "doctor" says that the traps getting very tight is typical LD.

Last night I watched a trailer for a movie about Lyme from this thread (I think) and liked it so much I linked to it from my blog. (Thanks someone!) It shows some people with their hands balled up (looks out of control), so you might be interested in watching it. It sounds similiar.

I read once there are 350 symptoms of Lyme. Enough me to just say--that's probably Lyme to just about anything.







What ever the bacteria attack, they damage, so it can affect the nerves, muscles, or whatever.

I did use to get a lot of pains in my feet. But one of the treatments I did along the way fixed that problem--but I couldn't tell you what. I've been using sets of herbal/frequency medicines and you take one set for a month and it works on one problem area like digestion, or circulation or nerves. And so some of my symptoms have gotten wiped out by those sets. It's very cool. But you have to do testing, b/c it's very specific to what's going on in your body. I'm a big believer in this natural stuff now.










ITA about the tightness in the shoulder/neck region. I get such HORRID pain there. It hurts to just hold up my head. I have a rub I use occasionally called Tiger Balm arthritis rub that works wonders for that. It burns like Icy Hot at first but after a bit, when the burn wears off, the pain is generally gone. Sugar is a big culprit in a lot of lyme symptoms. From what I understand, sugar 'feeds' the lyme. I notice HUGE increase n symptoms if I ingest anything besides raw honey or maple syrup. Any kind of sugar, even organic is enough to send me into a funk.


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## doulajewla (Mar 1, 2005)

I had the breast infections, 5 in the last 2 years of having lyme (though I did not know it at the time that i had lyme). I had one bad UTI--a few months ago, and I never had one before so i was really confused with the amount of pain! I am glad no lyme proteins were found in the breastmilk---i wonder about my breastmilk. I am still BF and shes almost 27 months...ive had lyme since 2 weeks after she was born(thats when I was bitten) so I wondered if she had it. She was tested but my dr's office is not calling me back when i leave messages. Its been about 5 weeks since she was tested.

I am not planning on getting pg...but i am wondering---during the pg, (for newcastlemama ) did you have lyme symptoms, pain etc? Was it worse, the same or better? I have heel and bilateral hip pain that is really painful so I dont think another baby is ever in our future. I was done anyway---but dh wants another. I am also afraid of giving lyme to a child...though I know it doesnt always happen.

Just to update--I am on abx (forgive me if ive updated already i forget) for 3 months right now and found an LLMD 2 hours from where i live about 3 weeks ago. She tested me for EVERYTHING including co infections and cbc and liver--all that. i think it was about 25 different tests she ordered. So on my bday I will find out how the tests came back. There were some other lyme tests too. I chose the abx for now in conjunction with homeopathic for now. I may go totally homeopathic and herbal if the abx doesnt work. Right now im doing both. Milk thistle for liver cleansing and my homeopath sent some new remedies for me to try. I liked the LLMD i found--she is into alternative healing methods as well, and keeps a good eye on diet. Since my diet is already for the most part ok, we didnt have to do too much adjusting. I am still feeling crappy and have pain--and at one point i was getting hives and the pain was really very bad, but that may have been die off. Now i am just in pain a little.

Hope everyone else is progressing


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## PrayinFor12 (Aug 25, 2007)

Quick question:

Anyone know if I can take synthetic antibiotics and Cat's Claw at the same time? I have both in my house and ready to take (already on the syn).

Lemme know if you know anything!
Holly


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## newcastlemama (Jun 7, 2005)

Quote:


Originally Posted by *doulajewla* 
I
I am not planning on getting pg...but i am wondering---during the pg, (for newcastlemama ) did you have lyme symptoms, pain etc? Was it worse, the same or better? I have heel and bilateral hip pain that is really painful so I dont think another baby is ever in our future. I was done anyway---but dh wants another. I am also afraid of giving lyme to a child...though I know it doesnt always happen.


I felt good and had a very healthy pregnancy and baby (Did not have a cold or anything!). I have barely had pain anway in probably almost a year (I quit abx in 3/2007 and just kept feeling better from there). On the rare occasion that my hands hurt a little I can usually trace it back to accidental dairy or gluten ingestion.

I researched pregnancy and lyme disease on PubMed and felt that I was fine to get pregnant. I think it is important to read the studies because there is a lot of scary info in the internet about Lyme and pregnancy that I could not find supported by the studies that I read.

Jen


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## newcastlemama (Jun 7, 2005)

Quote:


Originally Posted by *PrayinFor12* 
Jen,

THANK YOU for the advice/info.
I'm going to look into cod liver oil and pregnancy (not that I'm trying, but I'm forever careful). We bought strawberry kefir at Trader Joe's and dh left it out overnight. Sooo...still trying on that one. No - no white spots on any nails - I assume my zinc must be ok then?

Do you know an easy way to eat coconut milk/oil? I've never even eaten either one. And do you know how to eat liver without knowing you're eating liver? And now that I think about it, why liver?

Thanks!

I assume you've had your baby by now. I hope you're having a blast with him/her.

Liver--I eat the chicken liver pate in Nourishing Traditions. I grind beef liver 2-4oz to every pound of ground beef in meatloaf and burgers. My family does not een know they are eating it







Liver is very nutrient dense in everything you need for lyme--lots of B vitamins to provide energy and vitamin A for the immune system. http://www.westonaprice.org/foodfeatures/liver.html

Coconut-I use the milk to make smoothies.(I use coconut milk in place of milk because I can't do dairy) You can use the oil in cooking and add a few TBsp to smoothies as well. Pretty much just use it to replace butter in anything.

Jen


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## PrayinFor12 (Aug 25, 2007)

Jen,
Grinding liver into "normal" meat - clever and sneaky!
Coconut milk is the stuff in the can right?

Doulajewla,
Fwiw, my pregnancy with Judah seems to be what triggered my foot pain / muscle spasms. Could've been coincidence, but it seems odd. They started (and hard too!) 3-4 weeks after I conceived. Noticeably started tapering off about 4 weeks after labor.


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## doulajewla (Mar 1, 2005)

I thought it was ok to get pg but wasnt sure what other moms had done/felt/thought. I am NOT planning on it--I have way too much going on and another little one would be a blessing, but I just cannot do it. Dd and ds and dh are all bugging me though but we have alot on our plate with ds right now.

What vitamins are good? PM me if you cant write the brand. i have not had a multi and really think it might help. i do eat well most of the time--but I really dont think i get everything i need. I try to drink my teas and take my oils and i will be starting some chinese herbal medicine soon hopefully but I really want to take something just to ensure I can be the healthiest I can be to heal.

The supplement my dr said i could take has alot of good things--and i want to find similar. Hers was so expensive though it was $40 a month. I need something cheaper if possible.

Mostly i need this:

Vit C (As calcium, potassium, magnesium and zinc) 650 mg
Vit A (Beta carotene) 7,500IU
Vit B12 100 ug
Vit D 300IU

theres more--but i wont bore anyone with the details. theres green tea extract (decaf) pomegranite, etc. and some other things like co enzyme Q10. any ideas? thanks!!


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *doulajewla* 
Mostly i need this:

Vit C (As calcium, potassium, magnesium and zinc) 650 mg
Vit A (Beta carotene) 7,500IU
Vit B12 100 ug
Vit D 300IU

I actually take all of these things seperately. Everything but the D. D is included in my calcium pill if I remember right.

I'll tell you the itty bit I know: You actually need B Complex, rather than just B12. I _think_ when you can find gel capsules or the capsules with powder in them, those get absorbed better than pills that resemble pebbles.

Maybe you could try Whole Foods?
You could also try the following on-line (I do order a lot of pills):
bodybio.com
spectrumsupplements.com
priorityonevitamins.com
biocodexusa.com
I buy pills from all of these companies, online or not.

What are your biggest Lyme symptoms? That could impact how much you take of what. If you're having muscle or nerve problems, I could tell you which supplements to bump up.


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## Lymeade Lady (Jan 22, 2008)

I'd probably take them separate if I were you. A lot of multi's are too difficult for the body to assimilate (some even come back out of you whole!).

If you want natural versions--you can get a lot of Vit A in Spirulina (I take in tablet, but it comes as a green powder to mix in drinks too, but I don't like the taste.) And the best source of Vit D is sitting in the sun for at least 15 min. a day. Second best is a good quality fish oil, like Nordic Naturals brand. Very cheap supplement for the benefit it gives you.


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## doulajewla (Mar 1, 2005)

cool great! i will take them separately then, i didnt think about how it would be broken down actually. i drink this wonderful juice with spirulina in it---its a green drink its organic and has no sugars except fruit sugars...but very little. Mostly its blue green algae, spirulina, a wide assortment of greens and some other really greatt stuff i cant think of right off the top of my head. i wonder if i keep drinking this will it fill up my vit requirements? i totally forgot who its made by too...something farms. i drink it all the time lol i just cnat remember anything. dont hold it against me, lots of people do though. I do try to sit in the sun too--the other day we all did and i felt so good.


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## kcs (Jul 7, 2007)

Hey gals, I wanted to post some very important information that affects all of us - we all need to start faxing representatives and quick, the lyme bills in congress are stuck in subcomittee and due to expire shortly unless they are released for a vote in the next couple of weeks. Here are the details, please consider taking a small amount of time to either make some calls or faxes:

There are currently two identical pieces of legislation in the Senate and House of representatives that would dramatically expand Lyme Disease research and education, the "Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007". We desperately need these bills to become law, and right now they are stalled in congressional subcommittees. If the committee chairmen do not release the measures for a vote in the next few weeks, the Lyme bills will die in committee. We would then have to wait until next year to start the process all over again.

"The Lyme and Tick-borne Disease Prevention, Education and Research Act of 2007", S 1708 and HR 741, would authorize $100 million over a five year period. It would be used to improve tests to diagnose Lyme disease, enhance the public health surveillance systems, improve public education to prevent new cases of Lyme disease, and for clinical outcomes research. It would also create an advisory committee on Lyme and other tick-borne diseases. For the full text of the bill, including congressional co-sponsors, go to http://thomas.loc.gov/cgi-bin/bdquery/z?d110:h.r.00741: for the House bill, and http://thomas.loc.gov/cgi-bin/bdquery/z?d110:SN01708: for the Senate bill.

We need more support to push HR 741 out of the Energy and Commerce
Subcommittee on Health and bring it to the floor for a vote. S 1708 is stuck in the HELP Committee and is expected to move when the House bill leads the way, so it is of the most urgency to contact members of the House subcommittee to get HR 741 moving.

Please use the fax numbers below and send this letter, or a
similar one, off to as many of the subcommittee members as possible. Even
if you are not in their districts, these are the people we need to convince.
Start with any reps from your state and send a few every day, even to those not in your state - faxed letters count the most (FAX rather than mail is better). Calls are next in importance, and emails just get counted and not read (upside, it doesn't matter much what you say!) Our representatives need to understand that many people are suffering from tickborne diseases and these bills will help us and the nation. There have been cases of lyme disease reported in every state now, and the CDC admits that only 10% of cases are reported, other studies show that the percentage is even lower than that.

If you want to prioritize, contact Waxman first, he is the most powerful.
Then we need Republicans, so contact Mary Bono and George Radanovich.
For more information, history, form letters, etc, go to
http://www.lymediseaseassociation.org/HR741/HR741.html

This bill will not pass without a massive effort and soon - massive
means small effort by MANY people, rather than GREAT effort by a few.
This is one time that NUMBERS MATTER. I hope sending a letter will count
as a "small effort." Please help, and consider forwarding this info on to anyone you know that might be willing to help us out as well. Thanks!!
-karen

**********
SAMPLE LETTER

Dear Congressman or Congresswoman __________:

I am writing to ask you to support HR 741, the Lyme and Tick-borne
Disease Prevention, Education, and Research Act of 2007. It is a
companion bill to S 1708.

HR 741 recognizes Lyme disease as a serious and debilitating illness,
often misdiagnosed and under-reported. The CDC admits that only 10
percent of cases are reported. A Georgia study found that only one case
in FORTY is reported. In 2005, the CDC reported 23,305 cases. This means
that at least 233,050 cases occurred and possibly up to 40 times
that many. That does not count thousands of cases never reported at all - cases misdiagnosed as MS, ALS, juvenile rheumatoid arthritis, chronic fatigue, fibromyalgia, and many others, and cases undiagnosed because of the insensitivity of the tests (which miss almost half the cases). Tickborne diseases are costing this country billions a year but much of the epidemic is hidden because of misdiagnosis.

HR 741 establishes a Tick-Borne Diseases Advisory Committee and calls
for improvements in three broad categories - diagnostic tests,
surveillance; prevention - and for clinical outcomes research. The bill
authorizes an additional $100 million over five years to accomplish
these activities.

Please ask Chairman Pallone for a hearing on HR 741. Lyme disease is a
nationwide health problem that needs and deserves serious efforts to
contain it and prevent it. Over 90 Lyme disease patient groups support
this bill and its companion bill, S 1708. We need you to help get these bills passed into law.

Sincerely yours,

***********

This is the House Energy and Commerce Subcommittee on Health . First # is phone, second is FAX. Call and speak to the health aide or even better, fax a letter. If you
have a lyme story, a friend or family member or coworker with lyme, you can tell it (briefly, and with emphasis on co$t$, which always impresses legislators.
First # is phone, second is FAX. Call and speak to the health aide or even better, fax a letter.

Frank Pallone, Jr. (D-NJ) [Chairman] 202-225-4671 202-225-9665
Henry A. Waxman (D-CA) 202-225-3976 202-225-4099
Edolphus Towns (D-NY) 202-225-5936 202-225-1018
Bart Gordon (D-TN) 202-225-4231 202-225-6887
Anna G. Eshoo (D-CA) 202-225-8104 202-225-8890
Gene Green (D-TX) 202-225-1688 202-225-9903
Diana DeGette (D-CO) 202-225-4431 202-225-5657
Lois Capps (D-CA) 202-225-3601 202-225-5632
Thomas H. Allen (D-ME) 202-225-6116 202-225-5590
Tammy Baldwin (D-WI) 202-225-2906 202-225-6942
Eliot L. Engel (D-NY) 202-225-2464 202-225-5513
Janice Schakowsky (D-IL) 202-225-2111 202-226-6890
Hilda A. Solis (D-CA) 202-225-5464 202-225-5467
Michael A. Ross (D-AR) 202-225-3772 202-225-1314
Darlene Hooley (D-OR) 202-225-5711 202-225-5699
Anthony Weiner (D-NY) 202-225-6616 202-226-7253
James D. Matheson (D-UT) 202-225-3011 202-225-5638

Minority Members (Republicans)

Nathan Deal (R-GA) [Rankiing Member] 202-225-5211 202-225-8272
Ralph M. Hall (R-TX) 202-225-6673 202-225-3332
Barbara Cubin (R-WY) 202-225-2311 202-225-3057
Heather A. Wilson (R-NM) 202-225-6316 202-225-4975
John B. Shadegg (R-AZ) 202-225-3361 202-225-3462
Stephen E. Buyer (R-IN) 202-225-5037 202-225-2267
Joseph R. Pitts (R-PA) 202-225-2411 202-225-2013
Mike Ferguson (R-NJ) 202-225-5361 202-225-9460
Mike Rogers (R-MI) 202-225-4872 202-225-5820
Sue Myrick (R-NC) 202-225-1976 202-225-3389
John Sullivan (R-OK) 202-225-2211 202-225-9187
Tim Murphy (R-PA) 202-225-2301 202-225-1844
Michael Burgess (R-TX) 202-225-7772 202-225-2919
Marsha Blackburn (R-TN) 202-225-2811 202-225-3004


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## kcs (Jul 7, 2007)

And I sent out an e-mail to people in my address book, as well as my mom's group and another group I belong to - some people are willing to help send faxes even if they are not personally affected, so ask as many people as you can to help us out here, we need this bill to pass this year!
-karen


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## littlewillow (Jan 28, 2008)

Hello,
I'm not sure if I've ever posted on this thread, but I have on the adrenal fatigue one.

I am at an all time low. Over the last two years I had been told I had a bacterial infection, but no one could identify it. I've gotten sicker and sicker.
I was told it was probably epstein barr, sent to a naturopath, I was treated for Lyme with cats claw(samento) and other supplements and I seemed to get better over a year except I had shortness of breath and weakness in my arms.
Well I figured I was not in the right place with the docs so I took myself off all supplements since I didn't have lyme.
I got sicker every day.
Today I can barely move my right hand sometimes.
My right side is more affected, but it is both sides. I have facial numbness that comes and goes and drives me nuts. I also have a tightness of throat and feeling of a lump sometimes. I can't eat things like lettuce or I will choke.
I now have horrible twitches in my face and lips. It feels like there are tight ropes around my shoulders and my arms and hands are numb yet hurt at the same time. I can't sleep at all. The last few days I developed this awful stiffness of my neck, jaw and head. I feel like it must feel to have arthritis.

I am so scared.
It was suggested to me I might have Lyme disease and it does fit. I've also had issues with my adrenals.

My old doc said he tested me for Lyme and it was neg, but my hubby and I are getting the igenex tests done and also going to go to the portland research center/school, I can't recall the name.

May I ask which tests I need to order from igenex and what the cost usually is.
I was quoted $390 for just the lyme not including any of the co-infections.This was at the naturopath's office to send it to igenex.

My breathing is what is really frightening. It's as if there is an elephant sitting on my chest. I have 5 sweet children and I can't play with them.

I'm also sick and tired of going to the ER and being told I must have anxiety or maybe I need to get out more. These people make me want to pull my hair out. Each time I try a new doctor it is the same story. I live in rural Idaho and I think there must be few cases of lyme reported. I did read about a few in Boise which is nearby(45 mins)

I'm so thankful to find a group of women supporting one another.

Here is what I was doing, but wasn't quite taking care of the issues
Samento
nacetyl
co Q 10 fish oil
circulations factors
dgl
licorice root
multi
ester c
no sugar or fruit
no gluten dairy or processed msg etc....
I only eat all natural whole organic foods.
I've lost 20 pounds.
ALso have been seeing a wellness chiropractor who does cold laser and muscle testing as well as nutrition

I would love any advice or words of wisdom.
We can't have any nuts or coconut milk


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## PrayinFor12 (Aug 25, 2007)

Quote:


Originally Posted by *littlewillow* 
Today I can barely move my right hand sometimes.
it is both sides. I have facial numbness that comes and goes and drives me nuts. I also have a tightness of throat and feeling of a lump sometimes.
I now have horrible twitches in my face and lips. It feels like there are tight ropes around my shoulders and my arms and hands are numb yet hurt at the same time. I can't sleep at all. The last few days I developed this awful stiffness of my neck, jaw and head. I feel like it must feel to have arthritis.
I am so scared.
I've also had issues with my adrenals.
My old doc said he tested me for Lyme and it was neg
My breathing is what is really frightening.
I'm also sick and tired of going to the ER and being told I must have anxiety or maybe I need to get out more. These people make me want to pull my hair out.
I've lost 20 pounds.

I specifically whittled down your post to the symptoms I _also_ have. I want you to see you have a LOT in common with someone else (though body parts are diff). Fwiw, I have actually tested positive for Lyme.

The Igenex tests you need: IgM Western Blot, IgG Western Blot, B. Microti Antibody G/M (this is Babesiosis), HME Panel (monocytic) (this is Ehrlichiosis), HGE Panel (granulocytic) (this is also Erhlichiosis), B. Henselae Antibody G/M (this is Bartonella).

These are the tests done on me. It's Lyme and 3 co-infections.

Remember that even if an Igenex test comes back negative, it only means the test came back negative. That's all it means.

I'm sorry. Don't know about prices. Dh took care of all that and I know insurance atleast helped.

Personal suggestion: Something that has _really_ helped me is to keep a running list of symptoms with dates. Just stick paper and pen together and stash them somewhere handy. Never go more than 48 hours without jotting something down. This lets you see where relapses are and lets you objectively see how you're getting better or worse. It also gives you a great way of knowing what to accurately tell your doctors. That, in turn, helps you get treated.


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## doulajewla (Mar 1, 2005)

I have some of your symptoms too, only not as severe. I have really bad breathing also---feels like i cant get a satisfying deep breath when really i am getting in enough air. I tested positive for babesia and that is why. My other co-infection tests were negative and i am still just barely testing postiive for lyme. i test positive on two tests for lyme, one was missing two bands so they couldnt say it was positive. But my doc says its positive in her book.

I have eye twitches and starting two days ago, i have an elbow twitch lol....its a muscle twitch...and its right on my elbow. I still have the eye twitching and facial twitching though not as bad as it used to be. i still get palpitations everyday so thats hasnt changed really. my hips and heels both hurt now--it started with one hip, then the other, one heel in december, adn the last few days the other ones starting in. brain fog is getting better though but i have the attention span of a gnat. I also have had the lump in my throat for 2 years. It comes and goes though, but swallowing is painful most times and i get things caught in my throat---when i eat something like bread, it goes down very very painfully slowly--i can feel it oh so slowly going down, down...and i cant breathe in during this or it hurts more, so i have to tilt my chin down and wait for it to go.

I hope you get the testing you need. My lyme dr ordered a million tests but we have private insurance that covered it. she uses ignex and does a really thorough workup. I just had more bloods done again for liver and enzymes and cbc, etc. I hope you can find the right help soon. I am on antibiotics still with probiotics and felt a little better for a few days and thought ok wow this is it! im better! but nope. im in pain again yesterday and today. oh well. I guess it comes and goes sometimes.


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## aileen (Jan 23, 2006)

i am so thankful for this thread.
i had lyme as a teenager in 1987 and was hospitalized for two weeks for treatment with intravenous penicillin followed by six weeks of oral penicillin. ten days ago i was bitten by a derr tick that is now being tested and it has been suggested that i not nurse my 11 month old (or my 5 year old for that matter) until the test is completed. i am having so much trouble weighing the decision. the tick was attached for less than 24 hours, no rash, i'm a wee bit sore but it might just be too much yoga and gardening and the stress. i had no rash or flu symptoms before either. has anyone else decided to wean or temporarily wean? i'm trying to get a phone consult with Dr. Jones and i'm going to buy my first can of formula every and see if ds will even take it. i hate this. i'm half believing i've had it all along.
but i'm so thankful for this thread.


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## PrayinFor12 (Aug 25, 2007)

Aileen,

Considering how TERRIBLE Lyme is, I'd go with the formula for now. Temporarily living on formula is way better than having Lyme. Undoubtedly, Lyme is worse.

Meanwhile, keep pumping (and freeze it if you want). That'll keep your supply up so this can truly be a temporary thing. And if the tick is Lyme-less, then you'll have perfectly good milk frozen in case you need it.

Meanwhile, my best wishes that you stay healthy!

Holly

Oh, I just realized you mentioned the tick was attached less than 24 hours. That wouldn't make any difference. It just needs a moment.


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## rowansmomCT (Jun 19, 2006)

I was diagnosed with lyme one week after showing syptoms (high fever of 105 for 5 days, headache etc.) then the rash appeared and was immediately put on Amoxcil so I could continue breastfeeding. (I'm on day 3 of treatment) 2 ER docs, my doc, my midwife, and my pedi never said anything about stopping breastfeeidng

should i be worried that my 3 mo old may have been infected by me?


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## velveeta (May 30, 2002)

Quote:


Originally Posted by *rowansmomCT* 
I was diagnosed with lyme one week after showing syptoms (high fever of 105 for 5 days, headache etc.) then the rash appeared and was immediately put on Amoxcil so I could continue breastfeeding. (I'm on day 3 of treatment) 2 ER docs, my doc, my midwife, and my pedi never said anything about stopping breastfeeidng

should i be worried that my 3 mo old may have been infected by me?

I also want to know about this.

I will say that my 18 month old is starting to show a few symptoms, but they may not be Lyme. I was just dxd yesterday. My nursling has changed his sleep pattern dramatically, is fussier in general, has a generalized rash that comes and goes and fever that is intermittent. Also, he complains of GI distress by clutching his belly and saying "poo poo, poo poo".

I am taking Doxycycline, and homeopathic ledum (which my baby gets through my milk).

I found this link at kellymom:http://www.kellymom.com/health/illne...e-disease.html


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## rowansmomCT (Jun 19, 2006)

my pedi talked to an INfectious Disease specialist and they both said that if by some remote chance my DD got Lyme through my milk then I should continue nursing since I"m on Amoxcil and she'll get that through my milk too.
BUt he said there is a difference between acute Lyme (which I have) and Chronic LYme i guess acute lyme is easier to kill because it's in the beginning stages.


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## Jazmommie (Nov 19, 2001)

adding to this list

I was dx last week after 3 big bulls eye rash areas -no other symptoms really--maybe increase in stiff finger joints in the am mostly.
Was told to take amoxicillin 500 mg 3 x/day for 2 weeks
Test came back positive for lyme and positive for rocky mountain spotted fever!!!

My nurse prac told me to stop the amox. and stop breastfeeding my 19 month old and take doxycycline for 3 weeks---NO WAY--so i read online and found 2 sources that said ok to nurse and take it if less than 3 weeks -small chance of tooth discoloration.

Dr called back himself and I told him what I read and he looked at lab tests and said ok to not take any more amox and we will check titers next week and see if they go up or not-then we will know if it is old rockymsf or not and if Im not showing signs then no need for any doxy.

Hope I can learn /contribute.


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## Katheda (Jun 23, 2005)

I've been on doxycycline for a week now. I decided to wean my 3 year old because, well, he's 3







and I read that the doxy adversely affects nurslings by stunting bone growth and discoloration of permanent teeth. I feel like crapola. My 3 year old nursling is also being treated for Lyme with ammoxocillin .


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## Jazmommie (Nov 19, 2001)

well -my antibody tests were redone --my antibody level s did not go up ---so I am not taking any meds .
I have been reading online --scary stuff!!
Any herbal remedies to help???
I a
have been taking vit c,echinacea,goldenseal,red clover,astragulus,grape seed extract-lots of herbal teas -Mothers milk and some valarian at night.Cod liver oil at times -trying to eat better also.
Any good links ?


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## Lymeade Lady (Jan 22, 2008)

I'm using an essential oil by Young Living called ImmuPower--it's a mix of several oils. Right now it is the only thing that works on Lyme, but it is working really well. Unfortunately, it's only available thru distributors, so you have to order it.

Colloidal silver and Cumanda are both supposed to be really good, BUT neither tests very well on me right now.

Hope you find something that works. God Bless!


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## 2busy2clean (Feb 3, 2005)

I haven't read all the posts...
but I've used the Stephen Buhner herbs and feel great.
The herbs:
japanese knotweed, astragalus, andrographis and just lately stephania.
My only symptoms are eye floaters and maybe a tad bit of creakyness in the neck.
In two months I expect all symptoms to be gone - but I'll probably keep taking high doses of the herbs for awhile. I'm sick and tired of thinking the lyme is all gone, relaxing the dosage and bango, having the lyme come back.

When I caught lyme disease, my breastfed son was 2 (i was planning to stop at 2 and a half,) but I continued breast feeding him until he was 3 just to make sure he was well covered by the herbs I took. He has never, ever had any symptoms of lyme, beyond the slight popping in the wrist joints - which isn't an issue anymore.

I've never taken any anti-biotics because I didn't want the long term side effects for me or my child.

Detoxing is a very important part of removing the lyme bacteria. I do like Dr. Schulze's detox tea.


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## shaka (Aug 27, 2008)

deleted


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## Virginia Mom (Feb 17, 2006)

Hi Moms, I too have Lyme (well I'm actually in remission bc any true "lyme doctor' will tell you that it never goes away..........)

If you are having symptoms of night sweats, headaches and chest pains, those might also be signs of babesia...another infection from a tick bite......done with a simple blood test......(I had that too)

I won't go into my long story of how long it took me to find my specialist, but I had to stop all antiobiotics and start with my homeopath........SUCCESS AT LAST

Labcorp is the only lab that will do a test called CD57......it give you a range of antiobioties and depending on the number, you can tell if you have active Lyme, or if you never had it or if you are on the mend........

Two great websites
www.underourskin.com
(the new Lyme Documentary that just came out)

www.natcaplyme.org
(if you live near Washington DC, a free showing of the movie is coming out)

also, check out the website for info on how to help reach members of congress for the big Lyme Briefing on September 24


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## Virginia Mom (Feb 17, 2006)

Hi Moms, and I hope this doesn't upset anyone......but if you have Lyme, you can't breast feed.........it's passed thru mommy milk and thru the placenta as well.......

if anyone was pregant with Lyme, baby needs to be tested ASAP......
the Igenex (sp) lab in Paolo Alto will do a specialized urine test for babies

Good Luck


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## Virginia Mom (Feb 17, 2006)

HI Moms, if you have Lyme and live near Escondido California and are into homeopathy, then try Bill (William) Mann...........after 4 Mds. I am working with my current Lyme Specialist adn Bill (had to stop all meds cold turkey bc of severe allergic rxns)--and he's able to do my consults over the phone (but that might not work for others) and have been in "remission" for about 6 months......without drugs............my md has been testing my blood for stuff and nubmers are good
(labcorp CD 57 test......they use it for hiv patients)

Three FYIs
If you live near Washington DC, check out www.natcaplyme.org for free tickets to the documentary "Under our Skin"

also check out the website www.underourskin.com

and if you live in Northern Virgina, the best Lyme Specialist is Dr. Samuel Shor in Reston (teh waiting list is forever but he's THE BEST)......dabbles in some homeopathy and herbal

or if you want an MD/homeopath, try Dr. Sandra Chase----(don't know her experience with Lyme, but true homeopathy is different)..shes' in fairfax

Good Luck
Carol


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## wheelerdealer (Sep 8, 2008)

Breastfeed knowing you have lyme already? WHY would you even think about it?

I've lived through the lyme nightmare being undiagnosed for 35 years and passing it on to my two sons. My oldest was diagnosed with everything from Asperger's, PDD-NOS; severe ADHD; tried to slap bi-polar and others on him, had a behavior therapist, mobile therapist, TSS in the home 52 hours per week for 3 years? The younger son was progressively ill from the get go but really slammed in third grade with each year afterward missing 50-60 days of school and the school district trying to charge US with a $5,000 truancy bill because 'WE DO NOT RECOGNIZE CHRONIC LYME" Idiots they are.
Long story short, Lyme is NOT just from deer ticks, it is from mosquitos, lice, mites, gnats, greenheaded flies, through breaskmilk, SEX (no different than AIDS) and the placenta. If you wish to reinfect your child through breastmilk then go ahead and chance is my thought on it. Do I wish anyone to live my nightmare and be told your child has no hope in this life to be pushing a buggy at the local Superfresh? NO which is why I'm posting here.
A child does not test with a 170 IQ and then go down to 116 with any form of autism! Lyme mimics 350 different diseases and is in every state in the country. There isn't one GP in the tri-state area who has taken the time to learn about lyme unless he/she or a family member is dealing with it themselves and has had no choice. One hand doesn't know what the other hand is doing around here. Everyone uses Quest labs rather than making a clinical diagnoses. Quest is only 8% accurate-----not 80, 8!!!!
Insurance companies do not want doctors diagnosing people with lyme because they don't wish to pay for it, that is the bottom line. It is complicated so the doctors have no time to learn and then individualize treatment properly for their patients. Instead they give 10 days of doxy and "wow, you're cured". Then when the bugs head to the central nervous system to hide out and get away from the abx and return with avengence you know what you will hear from your gp? "Well, you must have been bitten again, let's try 10 days of doxy" Then----knees hurt, must be arthritis, head to the rhematology dept.; no energy, sleeping all the time? Must be ----a made up disease of which 99.9% who are told they have fibromyalgia really have lyme one in the same damned thing.. Think there isn't a lyme-autism connection? There must be, no question or doubt in my mind. All these parents who trust their M.D because of that title at the end of their names are being duped into believing Johnny or Suzie has a mental problem, behavior problem or are slow; they have an unexplained infection that continues to return so let's throw them on Ritalin or Adderall, it doesn't hurt developing major organs now don't you worry! OPEN your mouths and question every damned thing! There is an underlying reason Johnny or Suzie doesn't feel well, is acting out and can't help themselves. Add to it all the crap parents feed their children out of convenience rather than what their little bodies need nutrition-wise to grow and flourish!!! Toxins, chemicals, loaded with sugar? My older is son has been off ALL meds for all diagnoses.
Both had SPECT brain scans and showed neurolyme---hence the reason for the older son's behavior which after beginning treatment for lyme we have not seen one hint of the behavior for which my husband was ready to park the kid in a Deveroux facility full time? Educate yourselves, advocate for you and your children and never, ever mess with that God-given instinct you were given, please???? My older son has neurological damage that might be irreversible. Where I was told he would never drive, and work at the Superfresh? He owns 3 cars, pays full boat and has two companies since he was 16!!!! Both boys are still being treated by one of the best lyme docs in the country! Wheelerdealer


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## Virginia Mom (Feb 17, 2006)

Hi Mommies, just realized that there are a zillion pages to read thru but just in case it isn't mentioned.....

I keep seeing that everyone is being tested for LYME, but no one is mentioning any of the coinfections you can also get from the tick bite....I also had babesia, but was tested for spotted rocky mountain fever as well......

I had no relief from antiobiotics (4-6 months) but have made a 90% recovery with the help of my homeopath ..........but my case wasn't the simple one ....there might be a few people that get better with a month of drugs, but many others like myself will always 'have it'......

anyone see that movie "UNDER OUR SKIN"?
I think the link is www.underourskin.org (or com).......trying to get our local library to buy it ......


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## Bestbirths (Jan 18, 2003)

I am going to join the tribe because we just found out we have chronic lyme and began the Igenex testing which so far the first test is positive for lyme. My recovered son and I are going to the Autism-Lyme connection conference in Scottsdale, AZ this week. Is anyone else from this tribe going? If so, look us up, I will have a nametag on:

Shelly


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## Panserbjorne (Sep 17, 2003)

subbing


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## Lymeade Lady (Jan 22, 2008)

I haven't been on here much lately. Bestbirths--can you share a bit of what you learned at the Autism-Lyme conference?? I'm very interested.


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## Bestbirths (Jan 18, 2003)

It will take me a year to process everything I learned.
The first thing was how the MCS, Lyme and Autism communities were converging. There was a great intersection of ideas.

one website to help people process the information is thriiive.com it has how to videos for many things.

Moxxor looked interesting, except it is a MLM.

The concept of biofilm was huge. Lyme hides under biofilm. Nattok and lumbrokinaise or a combo of acv to break down biofilm. There was an amazing video done by the doctor who talked about it, Dr. Usman I believe.

Vitamin D, I am going to order 50,000 IU dosages from biotech

cold lasers, scar treatments, plant stem cells, plankton from the ocean, energy medicine such as orgone and discs, positive thinking, theives oil which I later learned to make myself, zinc loading and KPU, Dr. Klinghardts Lyme protocol, Dr. Cowdens lyme protocol, non gmo foods. There is just so much there...


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## tresleo (Mar 15, 2004)

Subbing.

I have Lyme disease, as does three of my five children. I suppose the others ones could, too. Got it this summer, after we moved to our new house. I'm wondering if we should keep living here...we were pulling up to 5 ticks off us daily, for a while.









We did the regular course of abx, but I'm just not feeling like that is enough. I am looking for alternative treatments - teasel, in particular - and for a way to help release the toxins.

I have headaches, pee all the time, muscle aches, joint aches, so so tired, heart palpatations, and my finger joint is inflamed. I just found another inflamation near my hip bone.

I feel so bad for my kids, they are so young with so much time for these stupid spyrochetes to invade their little bodies.

Glad to find this tribe...


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## Panserbjorne (Sep 17, 2003)

Quote:


Originally Posted by *Bestbirths* 
theives oil which I later learned to make myself,

So interesting you mention this. We have been using homeopathy, nutritional intervention and teasel very successfully. There are flares, but fewer, further between and very easy to control when they happen. I'm pretty happy with how far we've come. That said I busted out my thieves oil last year and have been using it in the infuser again. I had never thought of this for lyme! What was the reasoning given? One of the oils is analgesic, a few are antibacterial and antiviral....I just never thought of it as being able to target lyme. Can you discuss this more? Was it topical, oral or environmental? Was it for lyme or to deter ticks? What formulation were they using?

I was just fixin' to make a gigantic batch as christmas presents for family...this gives it a whole new angle in new england!


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## jamie79 (Mar 18, 2006)

I am still here...and almost 27 weeks pregnant. I am pretty sure that the Lyme is under control. As long as I am rigid about my diet, I feel fine. If I get too stressed, I feel symptomatic.

I do plan on BFing. I don't think that where I am at in this stage of the game with Lyme, that it will harm my new baby. I am currently GF/DF/mostly S(sugar)F and avoiding the other allergens that I am allergic to. I originally went to a ND, and made huge leaps and bounds with her. Then, as I got to be better, I got in touch with Stephen H Buhner and he gave me a protocol to use. I used that until I found out I was pregnant. At that point, I stopped the cat's claw (which I had been on for 1.5 years), but continued with the eleuthero. Herbs are my friend!














I also stopped the CoQ10, as my doc told me to. I also take a raw prenatal and fish oil or fermented CLO (whichever I can stomach - plus I live in the South and get a lot of D from the sun in the summer), and sodium ascorbate.

Anyways, I am still here and still fighting, but living!


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## Astrid1024 (Jan 16, 2008)

Found this thread through another lyme thread posted by Panserbjorne and am cross-posting my response here and subbing.

Quote:


Originally Posted by *Panserbjørne* 
Frankly I'm a bit shocked that there wasn't more of a response. In particular I was looking for adults with chronic lyme or late stage acute lyme.

I'm so sorry for your babe. I can understand your concern over abx. That's a scary situation to be in. Do you have any alternatives you've looked into? What does your dp think? What do you think?

By the way, I think Buhner is brilliant and have read most of his books. What do you think about Healing Lyme? I haven't gotten my hands on it yet for an in depth read.

My dh has chronic lyme as do several friends. And yes, he did the abx and they "held" for around a year in his case. I also have several other friends who have either been dx this year, or had their kids dx. I have studied this subject for quite some time as a result of my dh (who experienced severe pain and neurological degeneration) I have gotten him to baseline and we are maintaining reasonably well so long as we keep up with the protocol. If we don't, the confusion and disorientation comes back fast. He has, in the past had trouble finding his way home. He also gets to a point where he can't climb stairs. I am thrilled that we have been able to manage it, but I wanted to do better.

I was more looking to see where people were on this journey. I recently attended a fabulous workshop on lyme and have been applying what I learned to dh and a few others with success, so I do have hope at this point. It's a long road for sure though.

I dont' know that I have a TON to offer, just more looking to see how many people were in this situation and what stage they were in.

I just found this thread and so I am subbing. I have chronic, late-stage neurologic lyme disease. I contracted it in 1997, was mistreated with an improperly selected short course of antibiotics and felt what doctors called "post-lyme effects" for years. Depression, brain fog, panic attacks, severe joint and neck pain. The list goes on and on. My face went number in March 2006, I had an MRI which revealed 20 brain lesions. I was misdiagnosed with MS but refused to accept that diagnosis given my history of Lyme. I found a LLMD in my state, saw him and was treated with different oral abx for about a year and a half in conjunction with Buhner's herbal protocol. I then got pregnant and gave birth to my son in October 2008. I balked at having more MRI's, but finally had one last month. It revealed 40 brain lesions, some the same as in the first MRI, others new, some had healed. I wish I had had several MRIs so I could track the trajectory of what was going on in my brain all that time. Live and learn. I am very, very holistic in my approach to life and raising my son, so I hate that I've had to utilize so many antibiotics. My LLMD wants to put me on a PICC line with rocephin which I refuse to do because that particular abx is such a mixed bag. I breastfeed and while rocephin is considered safe to use while bf-ing, I just don't want to throw his gut flora off with that stuff. Plus, I've heard abx just don't really get rid of the Lyme once its in such a late stage. Not sure what else to type, the whole thing just exhausts and scares me so much. I suppose it happened for a reason. The treatment I've received from mainstream medicine makes me want to go into patient advocacy. If I hadn't stood up for myself, I'd probably be on immune-suppressant steroids for MS.

Anyway, I know I'm a little late to the party, but thanks for starting this thread.


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## Panserbjorne (Sep 17, 2003)

Hugs, mama. I'm glad you are here.


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## Koalamom (Dec 27, 2007)

Another hug from a mama with cronic lyme, years of weird pain, and doing everything right, with no healing...until I learned it was lyme. I know you will find what you are looking for. I am doing really well, not completely cured, but close.


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## Panserbjorne (Sep 17, 2003)

ah, yes. I should also mention that dh is doing well also. We didn't lose too much time with him, but he did degenerate fast. We had some great clues to his case though so as scary as it was I did feel that there was something that could be done.

I have since gotten Buhner's book and it's a handy little guide. We are taking a different path, but I would definitely recommend it. If nothing else it validates what so many people experience.


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## Koalamom (Dec 27, 2007)

Ineresting site I just came across. Anyone try the homeopathic here:
http://www.biogetica.com/cure-lyme-disease.php#


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## Koalamom (Dec 27, 2007)

Just spreading the word for this seminar tonight.

Quote:

13 years after writing that chapter that basically saved my LIFE on using Teasel for Lyme in The Book of Herbal Wisdom, Matthew is finally doing a free, live teleseminar through www.lymehope.com (where I was their first speaker) on Teasel and Lyme. Register at lymehope and they'll send an email with the phone number and passcode. The (phone) teleseminar runs about 90 minutes (including q&a) and happens at 5pm Pacific time (8pm Eastern) Even if you can't make it live, the audio recording will be available a few days after the live teleseminar. I am SO looking forward to the update!!

Do spread the word!
LadyB

--
Lady Barbara's Garden
www.ladybarbara.net


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## Panserbjorne (Sep 17, 2003)

for anyone who is on the fence...Matthew Wood is probably the most amazing herbalist I've ever studied with. I don't know how in depth this will be, but EVERYONE who has any interest should absolutely do it. I can't say enough good things about him!

Thanks, Blue!


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## Koalamom (Dec 27, 2007)

For those who missed Matthew Wood, here it is:
http://www.lymehope.com/audio.html


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## Panserbjorne (Sep 17, 2003)

Man...that was pretty bad though, right? Yikes. I'm glad I already had met him and knew him before that...He didn't come across so well.


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## Koalamom (Dec 27, 2007)

Not sure who was more scattered, him or the host. Still I learned alot and would love to get a book by him. I really like his techniques of simpleness. The interview is one to listen to again. I missed the live call, and was glad there was a recording, but the Q&A part is incomplete. Was any questions good, or about breastfeeding and lyme?

I have checked into the teasel essence and am going to give that to my son in a few weeks. He will be 6 over 6 months old then. I am taking LadyB's teasel, but this essence just feels right for him.


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## Panserbjorne (Sep 17, 2003)

I have all his books and they are all totally worth it. He's truly brilliant and generally a much better speaker.

No, no questions about breastfeeding.

Let me know what you think about the essence!


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *Panserbjørne* 
I have all his books and they are all totally worth it. He's truly brilliant and generally a much better speaker.

No, no questions about breastfeeding.

Let me know what you think about the essence!

Any book you recommend to start with?

I sure hope they will let me purchase the essence. When I talked to them yesterday, they mentioned that I have to see a trained essence Naturopath. There are none in my area (or even close). I am supposed to get a call on Tuesday and we will talk about it. I have used essences before and dowse for everything supplement wise and am pretty accurate. Not sure what more I would need to know to use the essences.

Did your DH see a professional (besides yourself







)?


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## Panserbjorne (Sep 17, 2003)

Nope, just me. I got trained specifically for him. They will let you buy straight teasel, but not the lyme protocol kit which has 12 essences. PM me if you like for more info.


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## Panserbjorne (Sep 17, 2003)

oh, as far as books go....you don't get any better than the Book of Herbal Wisdom. Beautiful, brilliant book. That will tell you if you like his style or not (though I think you will!) It also has a chapter on teasel. It won't be totally new info for you...but it's interesting nonetheless.

After that I'd say Vitalism and lastly the Seven Plants, Herbs as Teachers. Great book, but the seven herbs he uses may not inspire you that much.


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## FondestBianca (May 9, 2008)

*Sorry for the really long post!* I've been lurking ever since someone here on MDC linked some of my symptoms to lyme and I looked into it. Turns out it's probably the cause of most if not all of my medical troubles the last several years. I'm still unable to get a firm diagnosis and on no treatment other than some vitamin supplementing. Things continue to get worse. I FINALLY wrote down all of my symptoms... even the things that may not be related. I, to the best of my knowledge wrote down every little thing that has cropped up out of nowhere since things went haywire almost a decade ago. I thought I'd list them here in case someone else can relate or find similarity. Feel free to ask questions if you'd like. I'm an open book when it comes to this. It's been lonely dealing with this up here in eastern WA. By lonely I mean that I don't know ANYONE in person who is dealing with this. No groups in my area that I'm aware of. I don't really have an online lyme buddy either.
--------------------------------------

Symptoms range from late 2002 to present. Prior to 2002 I had little to complain of medically. My list of troubles prior to that time was limited to lower back pain (slight curvature), foot pain (flat feet) and pinched nerve pain in hips and shoulder related to involvement in tennis. I will expand on specific symptoms in future posts. I will add more symptoms to this list as I remember more and as more appear. I have been tested for all sorts of diseases and conditions and the only blood tests that have come back outside of normal levels were 2 of my 3 lyme tests. My western blot was negative. The two lyme tests that came back "slightly elevated" were not considered positive by the medical community and were not advanced tests. No further testing was ordered and lyme was not even going to be considered for any of my symptoms despite history of attachments and many classic symptoms of late stage/chronic lyme, until I asked for the testing myself. An infectious disease doc turned my case down before even seeing me in person. Every doctor I've spoke to says that "people don't get lyme disease in washington state". My blood tests prove that yes, I have been exposed to it right here in the PNW!

*Moderate to Severe joint pain: hips, knees, ankles, tops of feet, lower back, mid back, neck, elbows, wrists, and hands.*

~Pain is relitivly even on both sides of body.
~With little provoking, a joint (one side at a time) will "give out" at which point, weight or strain on the effected joint becomes unbearable. A feeling as if the joint is sublocated (pinched nerve and injury sensation comparable to sports injury) Knees, hips, and wrists most effected by this.
~Worse with activity, worse in the evening after the day's use. Set off by even low impact activity.
~Increased joint popping and "crunching".
~Following 3 recent, severe idiopathic anaphylactic reactions I indured the most intense joint pain I had experienced until that time. When accidentally missing one pill in my 5 day prednisone perscription I was met with such internal swelling and pain in my knees, lower back, and neck/and shoulder area that I COULD NOT walk without the aide of another person or cane.

*Moderate to severe joint and muscle weakness: all four limbs, back (lower and middle back), and neck as well as pelvic floor.*

~Muscles of the legs and forarms most effected.
~Straining due to difficulty standing, picking up objects 20+ lbs, lifting my own body weight from floor to stand.
~Unable to perform physcial tasks (lifting, pushing, pulling) almost suddenly around 9 months ago. Tasks once easy became suddenly difficult.
~Pelvic floor weakness began in summer of 2009. Origionally appeared as pregnancy complication. Continued and worsened beyond delivery (Dec 2008). Currently contributing to (diagnosed) rectocele, cystocele, and uterine prolapse.

*Tendon pain:*

~Began in the foot and ankle area in the fall of 2008.
~Spread to knees next. Currently is most painful in knees.
~Worse with activity and in the evening.
~Also effects other joints.

*Muscle Pain:*

~Began in lower back and neck in winter of 2008.
~Began in calves in summer of 2009.
~Now effects most major muscle areas. Most painful in calfs, thighs, back, neck, and forarms.

*Muscle cramping:*

~Began in Fall of 2009 in calves.
~Spread to feet, forarms, and thighs.
~Hands cramp when writing or doing related activity. Writing more than a few sentences is unbearable.

*Tissue Pain: full body*

~Cycling since 2005. Currently present.
~Unexplained tissue pain unrelated to anemia. Pain when touched. When touched it feels as if the area touched is bruised. Very similar pain but lacking actual bruising. Severe enough to make minor bumps, snug hugs, sitting, and laying down painful.
~Areas most effected: hips, thighs, shoulders, ribs (especially lower ribs), chest, and upper arms.
~Cycling SEVERE (diagnosed between 2003-2005) Essential Vulvodynia and ~Interstitial Cystitis.

*Internal and Organ Involvement:*

~Interstitial cystitis (fairly controlled). Symptoms began 2002-2003
rectocele, cystocele, and uterine prolapse. First signs summer 2008
vulvodynia and Atrophic Vaginitis. Began 2002
~Severe Spleen infection in mid 1990's (not sure if related but wanted to include it). Reoccuring, momentary, severe stabbing pain in spleen (increase frequency in 2009). Debilitating, sudden, stabbing attack in that region in Dec of 09 lasting for near one minute. Unprovoked and suddenly vanished. Sudden onset pain was comparable to pain experienced toward the end of my unmedicated labor. What I would imagine a heart attack feeling like.
~Heart murmur detected during regular exam in fall of 2009
~Heart rhythum abnormality detected by haulter in 2003 or 2004.
~Reoccuring ovanian cysts (ultrasound diagnosed) from 2003-2006. Suspected at current.

*Senses:*

~Oscillopsia. Diagnosed recently. Present since late 2007. Painful, uncontrollable, eye jerking (side to side) lasting a few seconds at a time. Seems to cycle. Anywhere from a few times per day to only once per week.
~Vivid nocturnal hallucinations involving all 5 senses. Began late 2005. Cycles. On again, off again. Currently off. No drug or alcohol use ever. Not a complication or side effect of medication.
~Ringing in ears. Daily since summer or fall 2009
~Can hear and feel blood flow and heart beat in ears (back of head) daily. Feeling of heat within the head usually accompanies.
~Momentary depth perception 'hallucinations'. Ex: things 10 feet away appearing as if they are smaller and inches from my face. (I lovingly call this scenerio the "Giant in a Dollhouse" syndrome). Cycling, on again off again. When 'on' it may happen a few times a week. Each episode last less than one minute. Seems to be worse with fatigue and when in low lighting. Occured with fever since childhood but has been occuring without fever since 2005.
~Sensativity to bright lights. Causes pain behind the eyes. Ache.
~Sensitivity to sounds. While some sounds appear very loud (louder than they should) others (like talking) are very hard to hear. Have to strain to hear well enough to understand people in many scenerios.
~Phantom smells and sensitivity to odors.
~Hearing things that aren't there. Background noises, talking, music (non threatening. Sounds similar to sounds you hear from the rooms you share a wall with in hotels. Muffled and faint).
~Flashes of light (bolts) in vision. Sometimes occurs with pain in the eye or jerk of muscles surrounding the eye.
~Black spots in vision
cloudy (grey and black) vision. Overall fog or blobs of fog.
~Loosing sight (goes black) when tilting head back. Comes with dizzyness, faint feeling, and fullness or stiffness in back of head and neck.
~Cognitive, Speech, and Comprehension: Began most prodominatly in the last year
~Difficulty finding words. Even simple words such as connective words. ~General decrease in speech ability overall but temporary extreme difficulty occurs for short moments. Onset in 2009
~Short term memory loss.
~Studdering, slurring, stammering that will last less than one minute but happens fairly often. Onset in 2009
~Difficulty understanding the speech of others. Jumbling the words when people speak. Difficult figuring out what others are saying. Their words or sentence structure will seem foreign. Onset in 2009
~Difficult retaining and comprehending written information. Difficulty tracking words while reading. Read same line over and over. Onset in 2009
~Difficulty writing. Cursive is especially difficult because my mind can't seem to remember how to form the next letter or what the next letter is once writing the previous letter has finished. Noticed when signing debit card recipts became difficult. Drawing (once a hobby) has become difficult. Both painful and difficult to perform. Onset in 2009.
~When typing I often times will type incorrect words. Ex: While my brian sends the message to type "The dog was on the couch." I will later in editing find that I actually wrote, "The dog with on the couch." or "The dog was there the couch." Sounds simple but, was something I never had trouble with prior to the last 6 or 8 months. Onset 2009

*Digestive:*

~One year of unexplained diarrhea and severe abdominal cramping. Every day, several times per day. Not related to Chrons, Celiacs, or parasites. (tested for all three). Returns occasionally but lasts no more than a few days in a row currently. Occurs with severe cramping. 2006-2007
~Intolerences that seem to change in an instant. Soy, lactose, meat, etc.
~Acid reflux.
~Frequent nausea without vomiting. Cycling. Will last up to one year at a time before cycling off. Any food or liquid will cause nausea. Able to maintian weight. present at current.
~Frequent cramping.
~Hypoglycemia. Fast onset. Cycles. Began 2005. Present at current.

*Various:*

~Stiff neck, difficult and painful to turn and tilt (especially tilt back). Severe. One year+.More intense since summer 2008.
~Sudden onset of allergies (previous allergy free). Allergy "attacks". Watering eyes, sneezing, runny nose (clear), headache, sinus congestion. Dust? Mold? Pet? Became severe in early 2009 and becoming increasingly worse each month. Skin testing negative for common household allergins, cats, and dogs.
~Migraine (daily since early 2009. Frequent since 2007). Improved with low dose painkiller intended for migraine. Light and sound sensitive. Pulsating, stabbing, or dull. All parts of head. Usually above eyes, temples, base of skull, and halo.
~Feeling on pinched nerve in hips (extending feeling of tingling, dead leg, or bone ache down to my feet), shoulders (extending down to hands causing deep pain and weakness in hands), and lower back (extending down to feet). Lasting anywhere from one hour to 2 days before improving.
~Tennis elbow unprovoked.
~Pelvic pain. Feeling of fullness in pelvis accompanied by cramping (unrelated to menstration as far as I know). Occurs mostly late night and early morning.
~Episodes of difficulty controlling facial muscles. Usually accompanied by slurred speech. Usually effects only one side. Lasting only moments at a time.
~Episodes of tingling (like asleep feeling and painless) on one side of body or one side of outter skull. Lasts less than one minute. Different occurances from previously listed symptoms involving numbness and pain down the legs.
~Constant minor jerking movement of fingers. Unable to still them even with concentration. Can relax them while trying to fall asleep.
~Cycling RLS both related and unrelated to pregnancy.
~Carpel tunnel. Since 2008 pregnancy to current.
~Loss of mobility. Effecting ankles, leg muscles, back, wrists, and neck. A feeling like fusing. Not as if I'm inflexible but rather that somthing has fused or hardened the joints or tissues associated with bending and can't allow movement beyond a certain point. Not improved with regular stretching.
~Episodes of insomnia.
~Episodes of SEVERE fatigue. Days, weeks, and sometimes over a month when no amount of sleep seems enough. Can't stay awake if laying down, falling asleep when not intending to, feeling that I MUST sleep. Fall asleep amost instantly after alying down and closing my eyes even after having logged plenty of hours of sleep. Usually accompanied by sever brain fog, mood changes, and increased memory and cognitive problems.
~Chest Pain
~Poor balance.
~Fluid filled lump over sacrum. One year. Followed birth of second child.
~Severe Idiopathic Anaphylaxis. Skin testing following 3 severe reactions (one requireing ER visit, IV meds, and 5 day perscription of prednisone) exposed no food allergies or environmental allergies.


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## monstermama (Feb 19, 2006)

FondestBianca,

I was dx with chronic lyme and my kids with congenital lyme over a year ago. There is a nice online group connected via facebook -- most that I'm connected with are in the alternative med camp, but have all used abx at one time or another.

The greatest offending bite was when I was 20, my senior year in college. I may have congenital bartonella and the kids and I also have Babesiosis.

I'm 45 now. My kids are 5 and 13.

Learning, treating, hanging in there.

I'd be happy to be an online buddy!

Jeanne
tillingmama.wordpress.com


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## Koalamom (Dec 27, 2007)

I am using teasel tincture for lyme, but I was wondering if anyone has experience (or a reason to not use it) teasel root homeopathic form called Dipsicus?


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *bluebirdmama1* 
I am using teasel tincture for lyme, but I was wondering if anyone has experience (or a reason to not use it) teasel root homeopathic form called Dipsicus?

Anyone (panserbjorne







)?

I have been using this for my son for the last few weeks who has lyme along with some other treatments and we are seeing amazing changes. His skin is clearing up and all of a sudden we are able to eat many new foods that were allergens!


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## newcastlemama (Jun 7, 2005)

(Hey Bluebird mama..I figure I can just chat with you over here! Thank you for your response on the other thread though)

So on the circulation thing that is really interesting because I feel like my circulation is poor still (cold hands and feet but no tyroid problems)

I have been doing pretty great overall--pretty much no pain or symptoms for a long time! I did the GAPS diet for the past 10 mos to heal from abx-use and food allergies. I added GF grains back in the past 2 weeks and hello *inflammation*. I get up in the morning and it is the same old thing as before--aching, burning joints primarily in my hands. I did heal from other allergens --eggs, avocado, and I can now eat moderate amounts of tomato so that is a blessing.

I have decided to only eat GF grains occasionally (like when out and choices are limited) and go back to primarily grain free.

Also, while on GAPS my ferritin went from the teens to 150! And my D went from the teens to the 40s. It was very healing for me I just could not handle the strictness of it mentally or socially anymore. Also on my blood test is that my ND said that my immune system number came back like I have a chronic infection so I just know that Lyme is still with me...I guess I just have to use a cavewoman type diet still to feel symtpom free.

Jen


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## HeatherB (Jan 30, 2003)

Just saw this thread and figure I should jump in. I have congenital Lyme, not diagnosed until I was 20yo. I started treatment right before getting pg with DS1, and was on abx throughout pregnancy and BFing him, and into pregnancy with DS2. I stopped abx after all those years sometime while BFing DS2 (who BF'd for nearly 3 years). None since (well, once or twice for acute infections that I couldn't shake).

My mom (who obviously has/had Lyme, also) has the Healing Lyme book, but I haven't gotten into it enough to glean much. My brain is not always up to parsing things like that. Even on this thread, I'm ignoring virtually everything before my post, save the OP.







I have spent some time researching adrenal fatigue, which is absolutely an issue for all three of us (my sister included), and I've been looking into more nutritional deficiencies which may or may not be related to the Lyme.

These days, my biggest problems are major fatigue; easy exhaustability; difficulty recovering; and extreme brain fog. All of that fits with Lyme and adrenal issues, with adrenal fatigue likely caused by all the years with Lyme. Not sure if there's anything thyroid related in there, though if there is, it ties in with the adrenals and they need to be treated first.

I am not currently seeing an LLMD (just kinda got sick of the whole thing, after my LLMD moved away). We did see a FABULOUS LLMD in northern California, whom I'd still go to if I could, but we were only living out there for 6 months. He was very knowledgeable on alternative treatments, too, and I had a great respect for him. We considered flying out there every 6 months to see him again, but never did.

Now, I'm interested in seeing a naturopath for the wide variety of issues I'm dealing with, but I'm not sure how much Lyme will fit in with that. It's still so poorly known by so many people.

Glad to find some like-minded support, at least.


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *newcastlemama* 
(Hey Bluebird mama..I figure I can just chat with you over here! Thank you for your response on the other thread though)

So on the circulation thing that is really interesting because I feel like my circulation is poor still (cold hands and feet but no tyroid problems)

I have been doing pretty great overall--pretty much no pain or symptoms for a long time! I did the GAPS diet for the past 10 mos to heal from abx-use and food allergies. I added GF grains back in the past 2 weeks and hello *inflammation*. I get up in the morning and it is the same old thing as before--aching, burning joints primarily in my hands. I did heal from other allergens --eggs, avocado, and I can now eat moderate amounts of tomato so that is a blessing.

I have decided to only eat GF grains occasionally (like when out and choices are limited) and go back to primarily grain free.

Also, while on GAPS my ferritin went from the teens to 150! And my D went from the teens to the 40s. It was very healing for me I just could not handle the strictness of it mentally or socially anymore. Also on my blood test is that my ND said that my immune system number came back like I have a chronic infection so I just know that Lyme is still with me...I guess I just have to use a cavewoman type diet still to feel symtpom free.

Jen

Sure sounds like you could still have lyme. I would just consider it, and do treatment for it. I will not do any abx, because I feel that it will not effect the lyme especially since I have had it for a long time.

I can have grains, but I have to have them in moderation, and have lots of protein with it or I feel like crap. I have found that the lyme effects my digestion. I saw a naturopath that also does lots of energy work and he said that he could tell that my body was not letting go of the lyme well, and that by adding in digestive enzymes, it cold really make a difference. I have and oh boy it is true. I can eat more foods which is nice. And poor digestion for me really effects my breastfeeding baby.

You diet can change and you proved it, and just think of how it will be when you get rid of the lyme.


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *HeatherB* 
Just saw this thread and figure I should jump in. I have congenital Lyme, not diagnosed until I was 20yo. I started treatment right before getting pg with DS1, and was on abx throughout pregnancy and BFing him, and into pregnancy with DS2. I stopped abx after all those years sometime while BFing DS2 (who BF'd for nearly 3 years). None since (well, once or twice for acute infections that I couldn't shake).

My mom (who obviously has/had Lyme, also) has the Healing Lyme book, but I haven't gotten into it enough to glean much. My brain is not always up to parsing things like that. Even on this thread, I'm ignoring virtually everything before my post, save the OP.







I have spent some time researching adrenal fatigue, which is absolutely an issue for all three of us (my sister included), and I've been looking into more nutritional deficiencies which may or may not be related to the Lyme.

These days, my biggest problems are major fatigue; easy exhaustability; difficulty recovering; and extreme brain fog. All of that fits with Lyme and adrenal issues, with adrenal fatigue likely caused by all the years with Lyme. Not sure if there's anything thyroid related in there, though if there is, it ties in with the adrenals and they need to be treated first.

I am not currently seeing an LLMD (just kinda got sick of the whole thing, after my LLMD moved away). We did see a FABULOUS LLMD in northern California, whom I'd still go to if I could, but we were only living out there for 6 months. He was very knowledgeable on alternative treatments, too, and I had a great respect for him. We considered flying out there every 6 months to see him again, but never did.

Now, I'm interested in seeing a naturopath for the wide variety of issues I'm dealing with, but I'm not sure how much Lyme will fit in with that. It's still so poorly known by so many people.

Glad to find some like-minded support, at least.


























HeatherB

So you took abx with each pregnancy. Was this to prevent the lyme from getting to your children? And I guess the abx did not get rid of the lyme for you?


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *bluebirdmama1* 
I am using teasel tincture for lyme, but I was wondering if anyone has experience (or a reason to not use it) teasel root homeopathic form called Dipsicus?

Which one are you using on your son? And you're using it as well?


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *chlobo* 
Which one are you using on your son? And you're using it as well?

I am using a teasel root tincture from LadyB and an going to use the teasel homeopathic the first of next week. Until then I am doing a very very low potency of teasel homeopathy potency 1x-9x. Starting next week, I am going to take a much higher potency of teasel.

My son and I are on week 4 of these low potencies. 2 weeks into his program, he took a high potency, and my program is 8 weeks, so halfway into mine will he next week.

Sorry if this is confusing, but you can email me if you want alot more specifics. Still working this protocol out. Sorry I havent emiled you back a while ago, meant to but I guess I never got around to it.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *bluebirdmama1* 
I am using a teasel root tincture from LadyB and an going to use the teasel homeopathic the first of next week. Until then I am doing a very very low potency of teasel homeopathy potency 1x-9x. Starting next week, I am going to take a much higher potency of teasel.

My son and I are on week 4 of these low potencies. 2 weeks into his program, he took a high potency, and my program is 8 weeks, so halfway into mine will he next week.

Sorry if this is confusing, but you can email me if you want alot more specifics. Still working this protocol out. Sorry I havent emiled you back a while ago, meant to but I guess I never got around to it.

Which issues did your son have that have been helped?


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## Panserbjorne (Sep 17, 2003)

Quote:


Originally Posted by *bluebirdmama1* 
I am using teasel tincture for lyme, but I was wondering if anyone has experience (or a reason to not use it) teasel root homeopathic form called Dipsicus?

I have never used dipsacus sylvestris as a homeopathic remedy for lyme. It is not a big remedy at all and has very little clinical info. I'm glad it's working for you though!


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## Astrid1024 (Jan 16, 2008)

Cross-posted in Lyme Roll Call

For those mamas who live with or have loved with neurological manifestations of Lyme, I wanted to share that I am taking LDN (low dose naltrexone). I have had multiple MRI's which show evidence of demyelination. I have a lot of symptoms that would lead a less Lyme-literate physician to believe I have MS. I, of course, know I do not have MS but neuro-lyme. Since neurological Lyme Disease looks a whole lot like MS, LDN is useful for both. LDN has absolutely changed my life. I have had a complete cessation of symptoms. No more dizziness, tippiness, numbness, tingling, brain-fog. All gone. I intend to take LDN for one year and have another MRI. I have no doubt that the MRI will show a healing of the brain lesions I do have, or at least no new growth.

You can find out more here:
http://www.lymebook.com/lyme-disease...naltrexone-ldn
and here
http://www.lowdosenaltrexone.org/

Also see articles at pubmed:
http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=20

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=5

http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=23


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## StrongBeliever (Apr 24, 2007)

First I want to say that I am ENDLESSY thankful for all you well-read, near expert mamas. Than you for sharing you knowledge with the rest of us!

Second... I am SUPER confused. And quite overwhelmed. I really need some insight from the people who are going through it now. Please help me piece this together. Let me lay a little bit of groundwork...

After my DS(5.5yrs) was born my hair started falling out. Not just shedding. Major handfuls coming out. I attributed it to post pregnancy shed. No biggie. It never stopped. I developed debilitating wrist pain, which I thought might have been from being a grocery store cashier while I was preg. with loose joints. It has never really gone away, but is better sometimes. I've always battled severe depression off and on, but it became a very listless, motivationless thing after his birth. When my I was preg. with DD(2.5 yrs) I starting having weird buzzing, tingling sensations in my legs. Coupled with the strange feeling was also large "spots" of numbness in my legs. Like one patch on my thigh would just stop feeling things, but buzz when I would lie down. After her birth, these feelings didn't go away like I thought they would. I had thought it was just a pinched nerve.
So I start searching my symptoms. And I came up with Iodine deficiency. It made sense to me as I was vegan while preg. with my daughter getting very little... So I start supplementing, and the hair isn't falling out as much and the numbness went away for a long time. In the last six months or so, everything had gotten worse it seems. I went off iodine for a while, and felt like !CRAP!. So I do some research, think maybe it has to do with bromide detox. Do I've started Iodine loading, in hopes of detoxing bromide and fixing what I felt might be a borderline hypothyroid situation. I think it is doing *something*. I certainly feel a little better on the days I do Iodine and my minerals and Vit.C. Over all I feel better than I did a few weeks ago when I wasn't doing it at high doses or religiously. All but for the head aches.

But here's the deal... I have all kinds of other syptoms going on. Bone tired all the time. A voracious need to sleep way more than what feels normal. Fatigue will hit me like a ton of bricks from out of nowhere. I've had bouts of extreme neck pain that seem to resolve for a few months and them come back. Recently(last few months or so) I've been getting these wicked pains all through my legs. Stabbing, buzzing, twinging. Sometimes it's a constant sore spot here or there. My circulation seems to be getting worse. Cold hand and feet, and I find limbs falling asleep or going completely, immobile-numb within a VERY short period of time when under pressure(sat on(leg), propping up head(hand), arm over head(while sleeping). That freaks me out. And the listless depression is back. I don't want to do anything. Ever. But underneath that I am still me and want to do TONS of stuff, but I_just_can't. Dizziness comes often. Vision weirdness comes often(borderline hallucination type stuff, shroomy vision if you get my drift). I am losing hearing is one ear. I have crazy sensitivity to light and sound. And I can't even begin to tell you about the disorientation, memory loss, brain fog, stuttering bouts, scatter brained bizarreness that rules my world these days.

So it boils down to this... I don't know if I have a hypothyroid condition. I was thinking maybe it's adrenal fatigue. Maybe it is all bromide detox symptoms. Or maybe, just maybe... I have Lyme disease.









I was talking to my mom about it today, as she's been hanging in with me on the Iodine stuff. I told her I was reading these posts on Lyme disease and it might be a possibility when she pipes up and says... "When you were a kid you had the bulls-eye rash but Dr. SoandSo said 'theres no Lyme around here' and blew it off."







What the heck! I can't take that as gospel though. She has seven kids and just as much brain fry as me(I've been trying to talk her into iodine therapy because we share so many symptoms). I know I live/grew up in a area infested with ticks that carry Lyme. I know I've had probably about a gazillion tick bites in my life. I know one of my sisters got dx with Lyme in highschool, bulls eye rash and all.

So... I know I want to get tested. That is a bonified plan. But what do you ladies think? What does it sound like to you?

Should I keep doing my iodine? Can Lyme cause hypothryroidism? I also take Azomite, Food grade DE, Vitamin C, and Magnesium. I have a mostly TF diet. I am working slowly on getting rid of my allergens(wheat and cow dairy, muscle testing by Nd for severe chronic earache). We do a lot of coconut oil. Just started Flax Oil. But all of that seems like small potatoes. And now My kids might have it?!?! From ME!? My son has some real anxiety/concentration issues, which I've always attributed to my less than healthy(and kind of wild) period of life when I got pregnant. Also a tendency to get parasites(*blech*). My daughter seems very healthy, but had sandpapery rashes up until about a year ago and often get RED RED RED cheeks(I think that might be allergies, but don't feel like I can deal with that right now).

*huge sigh* I don't know what to do. And I am poor. That makes it all much harder. And my husband thinks I'm chasing shadows. That doesn't help either. Bleh. Any thoughts, ladies? Please?


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## HeatherB (Jan 30, 2003)

Quote:


Originally Posted by *bluebirdmama1* 







HeatherB

So you took abx with each pregnancy. Was this to prevent the lyme from getting to your children? And I guess the abx did not get rid of the lyme for you?

Yes, the abx in pregnancy is to protect the baby. Same for abx while breastfeeding. I am certainly better (or was?) than when I started treatment, so I do believe the abx were effective. What I don't know is if I'm still battling infection, or if it's all the problems that the Lyme CAUSED. These days, I'm more likely to address things piecemeal and figure that the Lyme has wrecked my body and each thing needs to be addressed as its own problem. But, I also suspect some underlying issues like nutritional deficiencies (which goes along with what my LLMD told me about Lyme patients not making good use of nutrients taken in).


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## Penny4Them (Mar 10, 2009)

Hi Mommas. I'm new to this thread and very concerned about Lyme for me and my 10 mo baby. The past couple months I've had dull hip pain that the past couple days has really intensified. Tomorrow I'm going to my doc to investigate Lymes. What tests do I need to make sure I get? Does insurance cover the Western Blot (I understand this is the best test, although not 100% foolproof)?

Does anyone know how or if blood pressure is effected by LD? I keep having episodes of elevated BP usually coupled with severe exhaustion, and I can't figure out what might be causing it.

Additionally, I began getting sick about 5 yrs ago, (docs said FMS, migraines, hypothyroidism, among a list of other debilitating symptoms). Last year I was PG with my ds who is now a nursling and is 10 mos. Where do I start to help him? Does he need to be tested? My son has had strange rashes (ped said viral) since birth.

Thank you so much for any insights you can share with me.


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## kjbrown92 (Dec 13, 2007)

I'm going to introduce myself first, and then go back and read the whole thread. I've had issues for years. Osteo finally tested me for Lyme (Igenex) and I've got it. He thinks I got it sometime between DD1 (almost 13yo) and DS (almost 10yo) since DD1 is fine, and DS and DD2 (just turned 5yo) both have tons of food intolerances. He said it explained my back pain not getting better, my osteopenia, my bladder infections, my increasing intolerance to foods, and allergies to meds, and other unexplained declining health (though I kept trying to convince myself that I was healthy). So I'm starting on abx (Minocycline), probiotic (Theralac) and Resveratrol today and I'll see him in 4 weeks to see how it's going. He also tested me for another co-infection of Lyme also carried by ticks (because of my symptoms). And when he sees DS next month, he's going to test him too. So now back to read the thread...


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## Panserbjorne (Sep 17, 2003)

wow, I'm actually thrilled for you that you have a diagnosis! Lyme always did seem a possibility for you. Good luck on getting treated!


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *kjbrown92* 
I'm going to introduce myself first, and then go back and read the whole thread. I've had issues for years. Osteo finally tested me for Lyme (Igenex) and I've got it. He thinks I got it sometime between DD1 (almost 13yo) and DS (almost 10yo) since DD1 is fine, and DS and DD2 (just turned 5yo) both have tons of food intolerances. He said it explained my back pain not getting better, my osteopenia, my bladder infections, my increasing intolerance to foods, and allergies to meds, and other unexplained declining health (though I kept trying to convince myself that I was healthy). So I'm starting on abx (Minocycline), probiotic (Theralac) and Resveratrol today and I'll see him in 4 weeks to see how it's going. He also tested me for another co-infection of Lyme also carried by ticks (because of my symptoms). And when he sees DS next month, he's going to test him too. So now back to read the thread...

Well welcome to yet another group you never wanted to be a member of.

I hope your treatment goes well.


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *Panserbjørne* 
wow, I'm actually thrilled for you that you have a diagnosis! Lyme always did seem a possibility for you. Good luck on getting treated!

Another welcome, and I am happy for you because it is so good to know that you have been doing everything right all these years and it was never your fault. A load off your shoulders.
This is meant in the best way possible as it was a relief to know that I had lyme to finally get to the bottom of things.

Since dealing with lyme I can eat so many supposed allergens. Crazy how lyme can mess with the body so much.


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## kjbrown92 (Dec 13, 2007)

Okay, I've managed to get through this. I ordered the Lyme book from Buhner today, and the osteopath is letting me borrow his DVD of "Under Our Skin" so I'm taking a crash course. My SIL, who's had Lyme for 17 years, was adamant that I find a new doctor who was an LLMD, instead of the doctor who just diagnosed me. So she pointed me to lymenet, where I asked for recommendations for my area, and lo and behold, my current doctor was the first one recommended, and the person said "people love this guy" and now my SIL said maybe she'd switch when she saw the list. hee hee. I did something right. So I ordered some Cat's Claw (though I want to ask the osteo if it's okay to take with the other things I'm taking). I also ordered some more Bentonite Clay, which was mentioned. I'm not sure how strict to be with the carbs/sugar thing though. I know I'm a sugar addict. But since I'm off dairy, gluten, soy, and corn, I need some vice to stay sane.

Does anyone know if these are symptoms of Lyme... I haven't really seen them on any of the lists: itchy eyes all the time, my skin has become so sensitive that I can't wash my face at all or put any lotion on it, or any kind of makeup (even super "hypoallergenic" ones) without my eyes stinging and watering. The other odd symptom I've had for years is that any kind of constrictive clothing (bra, underwear, bathing suit, even socks with regular elastic) make my back spasm and I get intense pain. Also, one of the things it says for Lyme is that you HAVE to exercise. Even 5 minutes of exercise or Yoga for Arthritics send me into pain/spasms for days afterwards. Are those lyme type things? Or just my own strange symptoms?


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## Chakra (Sep 7, 2006)

Hi girls,

well today I was diagnosed with lyme disease per igenex labs. I do not have the classic lyme symptoms and I live in AZ. I also have positive results for HHV6 1:640 (VERY ELEVATED) and EBV AND CMV. I thought I had low thyroid because of weight gain despite a healthy diet and fatigue and thats why I went to see my doc originally. He took one look at me and said I have lyme. I thought he was a crazy guy until today...

Did everyone do a hhv6 test? What were your results? I looked up this test and everything says it will lead to MS so now I'm scared and freaking out. Please tell me I have nothing to worry about...

Also, my third son who was born with liver disease has it too and my doc thinks lyme is what caused his disease...

I don't know how he will treat it. I will find out Monday. He's a lyme specialist and does a lot of alternative treatments. He said the lyme treatment will take 6 months and then we will treat the virus.


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## Koalamom (Dec 27, 2007)

My baby had terrible liver issues, and was jaundice for a long time since I passed lyme to him. Although he is growing from it, I still have to remember to support his liver.


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## Lizafava (Nov 28, 2004)

I'm posting to bump and subscribe. I have localized morphea-sclerederma and because of researching some recent additional symtoms, have discovered the connection with lyme. I developed morphea shortly after trip to NJ when I was 16 and am suddenly piecing together that trip with a bordenella rash (mis-dx as stretch marks) and the morphea that started then.

Frustrated, overwhelmed and scared for sure.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *HeatherB* 
Yes, the abx in pregnancy is to protect the baby. Same for abx while breastfeeding. I am certainly better (or was?) than when I started treatment, so I do believe the abx were effective. What I don't know is if I'm still battling infection, or if it's all the problems that the Lyme CAUSED. These days, I'm more likely to address things piecemeal and figure that the Lyme has wrecked my body and each thing needs to be addressed as its own problem. But, I also suspect some underlying issues like nutritional deficiencies (which goes along with what my LLMD told me about Lyme patients not making good use of nutrients taken in).

I just went to see a functional medicine MD. Not specifically for lyme b/c I have a lot of other problems and I"ve never had a conclusive lyme test. He said, that it has been his clinical experience that unless you fix other underlying pathology then treatments for lyme are likely to not be completely effective.

In my case, that means first fixing my leaky guy so that I can absorb nutrients properly and detox properly, then tackling my toxin issues (possibly metals & possibly environmental) and then attacking the lyme. In other words, fix the terrain. Now I know this is sort of a chicken and egg thing b/c I'm sure the lyme caused some of the problems and I'm trying to figure out if its a little like trying to fix the damn while its leaking, but at this point, I'm willing to give it a try. I believe that I'm so worn out that I need to start slow & build my body up so that it can fight the lyme itself.


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## kjbrown92 (Dec 13, 2007)

Hmmm... my doctor thinks that my leaky gut, etc. is FROM the lyme, so he figures fixing the lyme will fix the other things. Did you do an Igenex Lyme Test? Or a different test? Theories about because no one knows for sure how to treat it, unfortunately.

I just read the book "Healing Lyme". It has some great herbal remedies to be taken concurrently with or instead of abx, for instance if abx has already tried and failed. There is some really interesting technical stuff in there.

Wednesday my kids go for their lyme tests.


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## chlobo (Jan 24, 2004)

Which one is "healing lyme"? I don't think I've read it.

Well we'll see how it goes. I just don't know what to think anymore. Just that I'm not getting better and seem to be getting worse.

I did have the igenex test. 2 of them. Plus additional DNA testing. The recent exposure test showed nothing. The long term test was inconclusive. No one seems willing to declare it lyme, except the teasel guy I went to see. He says I have it. But he also says the metals I have are interfering with healing from lyme. This is consistent with what I've read on a couple of yahoo groups I subscribe to. However, I can't safely detox b/c I"m BFing & b/c I have leaky gut. It's a tangled web.


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## Chakra (Sep 7, 2006)

Soooo what are some herbs and detoxs we can take while being treated for lyme?

I'm on antibiotics and not sure about herbs etc...

Can I do a homeopathy detox kit while on antibiotics?

I have started coffee enemas...Look into them, they make a lot of sense while being treated for lyme.


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## kjbrown92 (Dec 13, 2007)

"Healing Lyme" is by Stephen Harrod Buhner
From that, I've seen Cat's Claw, Nettles, Bentonite Clay, and one other I can't remember right now. I'm asking the doc next time if all of those are okay to take with the abx. Also, I want to start Cell Salts, which aren't mentioned in that book, but I've heard are helpful, so I'll ask about those too. I don't want to do anything that's going to interfere with the abx at this juncture when I'm just starting out.


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## Chakra (Sep 7, 2006)

Kathy, I have the hylands bioplasma cell salts. What do they do? I was giving them to my son. Didin't know they can help with lyme.

I'm going to get that book. I hope Barnes and Noble sells it.

It sucks because I have all this stuff here at home already...Cats claw, pau d arco, nettles, MMS etc etc but I don't know if any of these interfere with my antibiotics.

I just wanna get better! NOW!


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *Chakra* 
Kathy, I have the hylands bioplasma cell salts. What do they do? I was giving them to my son. Didin't know they can help with lyme.

I'm going to get that book. I hope Barnes and Noble sells it.

It sucks because I have all this stuff here at home already...Cats claw, pau d arco, nettles, MMS etc etc but I don't know if any of these interfere with my antibiotics.

I just wanna get better! NOW!









I'm on minocycline, and I asked my doc yesterday and he said I could take the cat's claw, nettles, and something else mentioned in the "healing lyme" book with it. He said he'd use other things other than Bentonite Clay to clear toxins (of course I didn't write it down so I don't remember what). And he was dubious on the Cell Salts helping. I go in 2 weeks to see him for me (yesterday's appt was for DS, who was tested for lyme yesterday, will get results in a few weeks). I got my book at amazon.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *kjbrown92* 
I'm on minocycline, and I asked my doc yesterday and he said I could take the cat's claw, nettles, and something else mentioned in the "healing lyme" book with it. He said he'd use other things other than Bentonite Clay to clear toxins (of course I didn't write it down so I don't remember what). And he was dubious on the Cell Salts helping. I go in 2 weeks to see him for me (yesterday's appt was for DS, who was tested for lyme yesterday, will get results in a few weeks). I got my book at amazon.

How did he thinkn you were doing? Did he think you were having a response to the abx?


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *chlobo* 
How did he thinkn you were doing? Did he think you were having a response to the abx?

He was glad to hear that I was irritable because he thought that meant die-off. I didn't tell him about the diarrhea though I'm assuming it's the abx. It's only a couple times a day so it's not going to kill me. I was trying to focus on DS though since technically it was his appt. Though the doc said I could call or email him anytime I had lyme questions.


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## Chakra (Sep 7, 2006)

Okay so being irritable is a good thing? Today is my third day of treatment and I feel like hell!!!!!! Almost depressed and I have been having some crazy dreams. For the first time last night my knees and hips were aching. Does this mean die off?

Kathy how are you feeling so far?

What type of cats claw do you all use? I have some I bought from MRH and it's loose leaf (bark)...Can I just make a tea? How does it help lyme?

Hope everyone is doing well


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *Chakra* 
Okay so being irritable is a good thing? Today is my third day of treatment and I feel like hell!!!!!! Almost depressed and I have been having some crazy dreams. For the first time last night my knees and hips were aching. Does this mean die off?

Kathy how are you feeling so far?

What type of cats claw do you all use? I have some I bought from MRH and it's loose leaf (bark)...Can I just make a tea? How does it help lyme?

Hope everyone is doing well









I've been having wacky dreams as well and the insomnia is horrible. I just can't sleep. It takes me an hour or two to fall asleep, and last night I woke up about 6 times.

The cat's claw I have is a capsule (500 mg) by Peruvian Naturals. I'll probably switch to the one that the osteo recommends as soon as this is gone though. The "Healing Lyme" book says core protocol is 3-4 capsules 3-4x/day. It says that the Resveratrol & Cat's Claw increases immune function, lowers spirochete loads, and reduces inflammation and confusion. I was taking 1 Cat's Claw twice a day. When the doctor told me it was okay to take yesterday, I took 2 capsules last night instead of one (hence, the crazy dreams I think) and today my hip is aching, and it hasn't done that since I went off gluten, dairy, soy, and corn. My right hand started aching when I woke up this morning too, and I've been dropping things right and left. So I think it's a good thing for the Cat's Claw. My doc started me on a low dose of the abx, I think because he was trying to go gently. Forget that. Kill those suckers in me.


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## Chakra (Sep 7, 2006)

Hang in there Kathy! You seem to have it a little worse than me and I can imagine how hard it must be...I'm strugling with the brain fog and blaaaaaa feeling while trying to run a business and be a mama...yuck!

"Kill those suckers in me." lololol! Yessss I feel ya!

What type of cats claw did your Osteo recommend? I'm taking reversatrol too. Good stuff! I would like to buy some cats claw in capsules..


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## FondestBianca (May 9, 2008)

It's been a long road. I long, painful, scary, confusing road. 5 years trying to get a diagnosis to answer my numerous mild to serious symptoms. Experienceing symptoms for over a decade. I FINALLY landed upon lymes disease thanks to some helpful mommas on none other than MDC and every single symptom fell into place so perfectly. And wouldn't you know I have a history of multiple tick attachments from childhood. Specialist after specialist, runaround, secondary diagnosis with no explinations, ignored, given up on, SO MANY SYMPTOMS (ranging from mildly annoying to life threatening), you name it... I've probably been there. The only place I haven't been in this lyme disease adventure is to treatment.

The only tests I could get my primary to give me were basic lyme antibody tests. Not even a western blot. I've been told everything from, "your levels are elevated but not elevated enough.", "maybe you had it before but faught it off and thats why you have antibodies still in your system", "it's a false positive", & "Some people who have never even been exposed have lyme antibodies present".

I've never been treated for lyme in any manner as an adult or in childhood. When I reminded them of this they gave me the line about possibly having faught it off on my own. *rolls eyes*

So, from people who actually know a thing or two about lyme, what can you tell me about my test results. Can you explain any other reason I could have these results, having never been treated, and NOT have lyme?? Do my results at least prove exposure at some time in the past? Do they prove anything that can be useful to me as I move on to the next doctor?

Oct 6th 2009 - b. burgdorferi - my value= .93
Oct 15th 2009 - b. burgdorferi - my value= .81
Oct 22nd 2009 - b. burgdorferi - my value= .94

This lab lists .91-1.09 as equivocal and asks that retest be done in 2 weeks. If above 1.09 they ask that western blot be done. I was actually told I was given a western blot following the third test and that it was negative. Just last week, upon asking for all of my lab results to be printed for me they informed me one was never done and the nurse reading my results must have been mistaken. Wonderful....


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## Chakra (Sep 7, 2006)

I'm not sure about your test results but it sounds like intuitively you know it's lyme. Get your western blot test asap! Hugs!


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## HeatherB (Jan 30, 2003)

Tracy, I had PCR tests done for a full YEAR *while* I was on abx before I got a positive. I have congenital Lyme and just didn't have enough antibodies or borrelia or whatever floating around, plus the very low accuracy of most tests, and we had to go on clinical symptoms alone. Find an llmd who can help you now, without being overly worried about labs.


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## chlobo (Jan 24, 2004)

If it looks like lyme & it smells like lyme, it's probably lyme & I wouldn't bother with additional testing. Instead I would find a LLMD to help with treatment, whether it be an MD an ND or something else.

Quote:


Originally Posted by *FondestBianca* 
It's been a long road. I long, painful, scary, confusing road. 5 years trying to get a diagnosis to answer my numerous mild to serious symptoms. Experienceing symptoms for over a decade. I FINALLY landed upon lymes disease thanks to some helpful mommas on none other than MDC and every single symptom fell into place so perfectly. And wouldn't you know I have a history of multiple tick attachments from childhood. Specialist after specialist, runaround, secondary diagnosis with no explinations, ignored, given up on, SO MANY SYMPTOMS (ranging from mildly annoying to life threatening), you name it... I've probably been there. The only place I haven't been in this lyme disease adventure is to treatment.

The only tests I could get my primary to give me were basic lyme antibody tests. Not even a western blot. I've been told everything from, "your levels are elevated but not elevated enough.", "maybe you had it before but faught it off and thats why you have antibodies still in your system", "it's a false positive", & "Some people who have never even been exposed have lyme antibodies present".

I've never been treated for lyme in any manner as an adult or in childhood. When I reminded them of this they gave me the line about possibly having faught it off on my own. *rolls eyes*

So, from people who actually know a thing or two about lyme, what can you tell me about my test results. Can you explain any other reason I could have these results, having never been treated, and NOT have lyme?? Do my results at least prove exposure at some time in the past? Do they prove anything that can be useful to me as I move on to the next doctor?

Oct 6th 2009 - b. burgdorferi - my value= .93
Oct 15th 2009 - b. burgdorferi - my value= .81
Oct 22nd 2009 - b. burgdorferi - my value= .94

This lab lists .91-1.09 as equivocal and asks that retest be done in 2 weeks. If above 1.09 they ask that western blot be done. I was actually told I was given a western blot following the third test and that it was negative. Just last week, upon asking for all of my lab results to be printed for me they informed me one was never done and the nurse reading my results must have been mistaken. Wonderful....


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## kjbrown92 (Dec 13, 2007)

I'd try an LLMD too (and testing by Igenex if you want), because it doesn't sound like you've been to the right kind of doctor yet.


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## Chakra (Sep 7, 2006)

And keep us updated!

Kathy, which type of cats claw do you use?


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## gigismom (Nov 26, 2001)

hi all! I have not had time to read through this whole thread so sorry if some of what I am about to ask has alread been answered. I appreciate anyone with experience chiming in. I had lyme last summer (target rash, flu like, joint pain etc...) I was (is) bf my ds at the time (he is now 2 1/2). I took amoxicillin for a month and got better. It never occurred to me that I could pass it to him. He is now seeing a new doc because he has had food allergies/leaky gut/constipation his whole life. She tested him for lyme (igenex western blot) thinking it could have passed to him and may be at least partially to blame for his current issues. All of these problems started way before I had lyme, though. Anyway, the results came back today. His IgG was positive, but this is likely my antibodies (according to the doc). His IgM (which from what I understand so far are antibodies that only he could produce as a result of his own infection) was equivocal (?sp). She is not sure how to interpret this and is planning to contact a pediatric lyme specialist in connecticut who she claims is the leading specialist in the country for lyme in kids. Anybody, know who this is...I did not catch the name. Anyway, what is the treatment for this kind of lyme and is it effective? Has anybody else had similar test results and what did you do?

fwiw... he is getting soooo much better. He is pooping more regularily and all by himself (no suppositories needed) and he has not had a single food reaction in weeks. He was reacting to sals but not anymore.

thanks

jen


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## kjbrown92 (Dec 13, 2007)

Dr. Jones is the pediatric specialist in CT. The doctor I go to is the other pediatric specialist, but sees adults too. As far as I know, Dr. Jones sees only pediatrics. He could have both food intolerances for some other reason, plus Lyme, and one won't heal without the other.

My DS just got tested last week, and has food intolerances. DD2 goes next week and will also be tested. I have it, and the doctor thinks I've had it for about 10 years, that's why they're being tested.


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## gigismom (Nov 26, 2001)

thanks kathy, i don't remember if it is dr jones she mentioned. i will hopefully talk to her tomarrow and will find out then. i just wish i had or felt like i will eventually get a clear cut positive or negative on this. i have a feeling i won't though and that the results will just be up to interpretation and then we will have to decide how to proceed. i don't want to guess.


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## kjbrown92 (Dec 13, 2007)

I know how you feel. I'm going through it too. It's been a couple weeks since DS's blood draw, so I'm hoping when I go in for my appt today that he'll have DS's results. My doctor's theory is that I got lyme between DD1 and DS, and that's why DD1 is healthy and DS and DD2 have tons of food intolerances and gut problems. We'll see if that theory pans out.


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## chlobo (Jan 24, 2004)

Honestly, I hope he's wrong. But I understand that then you'd have something to treat.


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## kjbrown92 (Dec 13, 2007)

DS has it. Found out today.
I also tested positive for Rocky Mountain Spotted Fever. How weird is that? I guess a tick must have gotten me at some point, eh?


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *kjbrown92* 
DS has it. Found out today.
I also tested positive for Rocky Mountain Spotted Fever. How weird is that? I guess a tick must have gotten me at some point, eh?

Oh dear. So what's his treatment plan?

And what is the treatment for RMSF?


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## gigismom (Nov 26, 2001)

Kathy,







so now what? Did you get a suggested treatment plan? This is something to treat so now you can feel empowered to continue to heal and improve.


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## kjbrown92 (Dec 13, 2007)

DS is on Minocycline for a month, with Cat's Claw, same as me. Except I've already been on the minocycline for a month, and I'm doing it for another month and adding Bactrim for the month as well. The doctor was happy that I was having Hx reactions. I'm hoping DS's aren't bad though. I don't want him to be miserable while he's still in school.

The doctor made it sound like I must have had Rocky Mountain Spotted Fever at some point, but from all the reading I did yesterday it sounds like it's an acute thing and then goes away. The only thing I can think of according to the symptoms is when I was 14!! My church youth group biked 10 miles to a park and were there all day. The next day I started to feel unwell. By Friday I had a temperature of 103 (the only fever I've ever had besides my constant 99 when I had mono in college) and was delirious. The doctor diagnosed a kidney infection and I was put on abx, and I was sick for about another week. I'm wondering if I had the RMSF then and also happened to have a UTI (my first) and the abx took care of it all. Of course if that's true, then have I had lyme since I was 14? That UTI is what started odd symptoms... I then had UTIs about 3-4 times a year until I was 20 (went on abx for a few months and broke the cycle). But it was odd because my symptom was always pain right in my diaphragm. They'd test, and I'd have a UTI. Then when the UTIs went away, I still kept getting this intense diaphragm pain and would vomit, etc. They said I had non-ulcer dyspepsia, or spastic stomach, or spastic color, pre-ulcers, etc. etc. no one had any answers, then they went away the summer I turned 21. I'm wondering if that was the cascade of lyme all along... in which case I need to test DD1 as well.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *kjbrown92* 
DS is on Minocycline for a month, with Cat's Claw, same as me. Except I've already been on the minocycline for a month, and I'm doing it for another month and adding Bactrim for the month as well. The doctor was happy that I was having Hx reactions. I'm hoping DS's aren't bad though. I don't want him to be miserable while he's still in school.

The doctor made it sound like I must have had Rocky Mountain Spotted Fever at some point, but from all the reading I did yesterday it sounds like it's an acute thing and then goes away. The only thing I can think of according to the symptoms is when I was 14!! My church youth group biked 10 miles to a park and were there all day. The next day I started to feel unwell. By Friday I had a temperature of 103 (the only fever I've ever had besides my constant 99 when I had mono in college) and was delirious. The doctor diagnosed a kidney infection and I was put on abx, and I was sick for about another week. I'm wondering if I had the RMSF then and also happened to have a UTI (my first) and the abx took care of it all. Of course if that's true, then have I had lyme since I was 14? That UTI is what started odd symptoms... I then had UTIs about 3-4 times a year until I was 20 (went on abx for a few months and broke the cycle). But it was odd because my symptom was always pain right in my diaphragm. They'd test, and I'd have a UTI. Then when the UTIs went away, I still kept getting this intense diaphragm pain and would vomit, etc. They said I had non-ulcer dyspepsia, or spastic stomach, or spastic color, pre-ulcers, etc. etc. no one had any answers, then they went away the summer I turned 21. I'm wondering if that was the cascade of lyme all along... in which case I need to test DD1 as well.

Since the lyme test is an antibody test how does the doctor know when its "active lyme" vs. just having the antibodies b/c you had lyme? I'm not trying to be snarky, just trying to understand. With vaccine preventable diseases they use the antibody test to see whether you are still immune. So how does it work with lyme? How will he know when to stop treating?


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## Panserbjorne (Sep 17, 2003)

already answered you, but in theory they're looking for antigens and antibodies. Antigens cause a disease and antibodies fight it. The presence of antibodies just tells you that the disease has been fought. The presence of antigens means there's something currently being fought.


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *chlobo* 
Since the lyme test is an antibody test how does the doctor know when its "active lyme" vs. just having the antibodies b/c you had lyme? I'm not trying to be snarky, just trying to understand. With vaccine preventable diseases they use the antibody test to see whether you are still immune. So how does it work with lyme? How will he know when to stop treating?

That's not a snarky question!! I asked the doctor the same thing yesterday. He said that lyme doctors treat by symptoms and use the blood test just as confirmation. If you've never been treated, then chances are you still have it (like me). If you get worse while treating, it means you have it. Etc. But I have the same question, how do you know when to stop treating? How do you know you've killed all those suckers so that they don't come back?


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *Panserbjørne* 
already answered you, but in theory they're looking for antigens and antibodies. Antigens cause a disease and antibodies fight it. The presence of antibodies just tells you that the disease has been fought. The presence of antigens means there's something currently being fought.

They are looking at IgG and IgM at Igenex. Which is which (antigens vs. antibodies)? Same thing with Rocky Mountain Spotted Fever - it tested IgG (positive), IgG Titer (high), and IgM (negative). He's saying that I had it at some point (not current) so does that meant the IgG is antibodies and the IgM is the antigen? Because both DS and I on the lyme test were positive IgG and negative IgM.... but since neither of us were ever treated for it, he thinks we have it. But the way you describe it, it sounds like we fought it. Is that right? I also want to know how you know when you're done fighting it. Or is it one of those things that never leaves...


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## Panserbjorne (Sep 17, 2003)

the bigger issue is that just because the antigens aren't present in the bloodstream doesn't mean it's not an active infection. What it means is that the infection is no longer in the bloodstream. That doesn't mean it's not active in the muscles, organs, neurological system etc.

Your doctor is 100% correct. Chronic lyme is only really diagnosed clinically because blood tests can't be definitive. As long as you have symptoms you will be treated. The blood tests are helpful to show if it's something that you ever had (so they know it's worth chasing) but even that isn't accurate as not everyone mounts an immune response. If you don't there will be no antibodies to be found and you will still be very sick.

K, the good news is that you were strong enough to fight it and that your body was well enough to have an immune response. I know it seems weird, but that's actually good news.


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## Panserbjorne (Sep 17, 2003)

Oh, and in that instance they are testing the ratio of IgM to IgG which tells you where you stand in the infection. In the beginning there will be more IgM antibodies and as the body compensates and fights the balance will shift and the IgG antibodies will outnumber the IgM antibodies. SO more IgG's tell you that you are in late stage so to speak. The infection is more chronic than acute. Does that answer your question?


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## chlobo (Jan 24, 2004)

How do you know if your titers are high? Is that the + on the bands?

What if you don't have a definitive test? Does that mean your immune system is just screwed?


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## gigismom (Nov 26, 2001)

Pb..could you give me your thoughts on our situation. I descibed it above but just to reiterate... I had acute lyme last summer. I started abx right away and had a positive elisa test. Ds was 18mo at the time. He was/is nursing. He has gut problems (dysbiosis) and food allergies/intolerances and did prior to me getting lyme. He recently had the igenex test and the IgG was positive (could be mine) and IgM was equivocal. His doc is consulting with dr jones in ct to get a second opinion on how to proceed. Do you think based on your understanding that this is a positive result? I probably won't hear anything until tues as this is a holiday weekend. Also, his dr thinks I may not have been treated aggressively enough. Since he was nursing my dr at the time presribed amoxicillin that I took for a month. I have no symtoms of chronic lyme that I can tell but do you think I should be tested to be sure?

Jen


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## Chakra (Sep 7, 2006)

So I have been on treatment for about 3 weeks now and I feel sooooo crappy. So tired and weak, crabby, body aches, headaches...Does this mean a herx?

I'm also seeing a lot of flashing spots and colored spots now. Never seen those before I started treatment.

I'm having a hard time focusing and trying to work on my business too. When does it get better?

Kathy did you do the igenex for your kids too? Or just the standard test?

oh ya...I bought the book 'healing lyme' - I'm just getting intio the second chapter. I'm so happy I found this book, but it's scary khow bad this awful disease is.


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## Panserbjorne (Sep 17, 2003)

Quote:


Originally Posted by *gigismom* 
Pb..could you give me your thoughts on our situation. I descibed it above but just to reiterate... I had acute lyme last summer. I started abx right away and had a positive elisa test. Ds was 18mo at the time. He was/is nursing. He has gut problems (dysbiosis) and food allergies/intolerances and did prior to me getting lyme. He recently had the igenex test and the IgG was positive (could be mine) and IgM was equivocal. His doc is consulting with dr jones in ct to get a second opinion on how to proceed. Do you think based on your understanding that this is a positive result? I probably won't hear anything until tues as this is a holiday weekend. Also, his dr thinks I may not have been treated aggressively enough. Since he was nursing my dr at the time presribed amoxicillin that I took for a month. I have no symtoms of chronic lyme that I can tell but do you think I should be tested to be sure?

Jen

I'm sorry, it's late and I'm tired, so you'll have to forgive me. I'm not entirely sure what you are asking. It sounds like you had lyme, got treated and have no residual symptoms, but you are wanting to test your little one to make certain you didn't pass it to him....do I have that correct? Does he have any symptoms that have cropped up since you were dx and treated?

This is a tough one. The tests are so inaccurate that unless you started seeing symptoms I'm not sure how a case would be made to treat you. Or him for that matter. I don't know that it would be considered positive but it depends on the context and what the doc is seeing.

I will also say, for what it's worth, that with chronic lyme *in my experience* the symptoms seem to crop up a year or so AFTER the abx were done. People usually do get relief from them...it's whether or not they have lasting relief that is the key. However that's not generally reflected in the bloodwork. If you have had lyme in the past, it's going to probably read the same way.


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## gigismom (Nov 26, 2001)

Quote:


Originally Posted by *Panserbjørne* 
I'm sorry, it's late and I'm tired, so you'll have to forgive me. I'm not entirely sure what you are asking. It sounds like you had lyme, got treated and have no residual symptoms, but you are wanting to test your little one to make certain you didn't pass it to him....do I have that correct? Does he have any symptoms that have cropped up since you were dx and treated?

This is a tough one. The tests are so inaccurate that unless you started seeing symptoms I'm not sure how a case would be made to treat you. Or him for that matter. I don't know that it would be considered positive but it depends on the context and what the doc is seeing.

I will also say, for what it's worth, that with chronic lyme *in my experience* the symptoms seem to crop up a year or so AFTER the abx were done. People usually do get relief from them...it's whether or not they have lasting relief that is the key. However that's not generally reflected in the bloodwork. If you have had lyme in the past, it's going to probably read the same way.

sorry if i was confusing. i am not sure what i am asking either. yes, you are right about our situation. I had lyme while nursing, was treated, got relief, the end... I thought. my ds has had gut issues and food reactions since birth (i thought bc i was on antibiotics for a uti when he was 10 days old). I took him to a new doctor who also happens to be the leading lyme doctor in our area. She was treating him for the gut issues and he is getting better. I mentioned that I also had lyme last summer thinking that that antibiotic exposure would also certainly have done more damage to his/my gut. She immediately wanted to test him. Now, I don't see how the test could have come back different than it did. Of course he will have positive IgG because I passed that on to him. From my understanding IgM is high in the acute stages and fades over time. His test was equivocal. Just wondering if this means he was infected last summer and it has faded or that the test is just not accurate and he never had it... i realize that this is a tough one, just thought someone may have some experience or heard of a similar situation. His gut symptoms and allergies have only gotten better in the past few months since we started treating. However, the food reactions did initially get worse last summer when I did have lyme. I chalked this up at the time to the abx and he was just starting to eat more foods so had more opportunity to react. I also feel great from being on his diet and taking various supps. Thanks for any thoughts you have!

jen


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *Chakra* 
So I have been on treatment for about 3 weeks now and I feel sooooo crappy. So tired and weak, crabby, body aches, headaches...Does this mean a herx?

I'm also seeing a lot of flashing spots and colored spots now. Never seen those before I started treatment.

I'm having a hard time focusing and trying to work on my business too. When does it get better?

Kathy did you do the igenex for your kids too? Or just the standard test?

oh ya...I bought the book 'healing lyme' - I'm just getting intio the second chapter. I'm so happy I found this book, but it's scary khow bad this awful disease is.

Yes, we're doing Igenex for the kids too ($200 a test). That "Healing Lyme" book was good. That's when I decided to add Cat's Claw to my pills and the doc okayed it.

DS was sooo hyper this morning. Not sure what that's about. I'm worried that he's going to start having stomach issues again because of die-off or whatever. And the "growing pains" in his legs. All the things that went away off the foods.

Anybody know if D levels have anything to do with it. My level had been 27, got put on 2000iu/day. Had it tested again (in September after a summer with no sunscreen) and it was 48, but doctor said to take 5000iu/day because we were heading into fall/winter. Just had it taken, and it's 36, so now he's got me on 10,000iu/day. Why can't my body keep the vitamin D?


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## Panserbjorne (Sep 17, 2003)

the reason that it's tough is that the antibodies *can* be passed through the breastmilk so it's possible he never had it. But even if he did, you are correct..the results would have been the same. However if you are seeing improvement while he's being treated I doubt that is the case. Many docs treat "as if" if there is a history. I manage lyme in a very different way so I'd have a very different perspective on that particular aspect.

I have certainly heard of babies getting it through breastmilk, and babies getting it in utero so neither is out of the realm of possibility. What I'd bring to the table (always) is the predisposition. Which he clearly had. That's where my particular focus would be. Plenty of people DO contract lyme and get over it with no pomp and circumstance. Plenty of people don't. What's the difference? That's my focus.

Always pursue health, in whatever way you can. IF you feel better being treated, changing diet, taking targeted supplements then there is no question that you are on the correct path. I have no idea if that answers your questions at all....


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## Panserbjorne (Sep 17, 2003)

Quote:


Originally Posted by *kjbrown92* 

Anybody know if D levels have anything to do with it. My level had been 27, got put on 2000iu/day. Had it tested again (in September after a summer with no sunscreen) and it was 48, but doctor said to take 5000iu/day because we were heading into fall/winter. Just had it taken, and it's 36, so now he's got me on 10,000iu/day. Why can't my body keep the vitamin D?

Is he testing to see if you are utilizing the supplement? It's odd, because clearly you were...so what changed? How's your liver function?


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *kjbrown92* 
Anybody know if D levels have anything to do with it. My level had been 27, got put on 2000iu/day. Had it tested again (in September after a summer with no sunscreen) and it was 48, but doctor said to take 5000iu/day because we were heading into fall/winter. Just had it taken, and it's 36, so now he's got me on 10,000iu/day. Why can't my body keep the vitamin D?

I am no expert on Vit D, but I do know that there are certain nutrients that need vitamin D for absorption. Vit A needs Vit D, so are you supping or eating an excess of Vit A?


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *Panserbjørne* 
Is he testing to see if you are utilizing the supplement? It's odd, because clearly you were...so what changed? How's your liver function?


Quote:


Originally Posted by *bluebirdmama1* 
I am no expert on Vit D, but I do know that there are certain nutrients that need vitamin D for absorption. Vit A needs Vit D, so are you supping or eating an excess of Vit A?

All he did was take a Vit D level on a CBC. How do I tell liver function? All my other numbers were fine. Is Kale high in Vitamin A? I just started eating it about a month or so ago but I've been wanting it every few days, and adding it to lots of things.... I'll have to look at that, because it seemed like it was getting better. I already have osteopenia (diagnosed at 38yo). I still can't tolerate any calcium supplements, but I'm doing a lot of bone broth, broccoli, salmon, etc. I just didn't know if there was any correlation with lyme that would prevent me from absorbing it or something.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *kjbrown92* 
Yes, we're doing Igenex for the kids too ($200 a test). That "Healing Lyme" book was good. That's when I decided to add Cat's Claw to my pills and the doc okayed it.

DS was sooo hyper this morning. Not sure what that's about. I'm worried that he's going to start having stomach issues again because of die-off or whatever. And the "growing pains" in his legs. All the things that went away off the foods.

Anybody know if D levels have anything to do with it. My level had been 27, got put on 2000iu/day. Had it tested again (in September after a summer with no sunscreen) and it was 48, but doctor said to take 5000iu/day because we were heading into fall/winter. Just had it taken, and it's 36, so now he's got me on 10,000iu/day. Why can't my body keep the vitamin D?

Can't answer but I'm in a similar situation. At last check, after aggressive supplementing I was a whopping 37.


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## Chakra (Sep 7, 2006)

I went to a local lyme support group meeting and the people there with lyme could not keep their vit. D levels up. We live in AZ too, sunshine all year. Not sure why they can't keep the vit. d up.

I have not had mine tested, but I will request it.

Does anyone know how to interpret the igenex test results?

Just not 100% sure I have lyme, but igenex said I do.

The igenex igm says positive with 3 stars on line 41 and line 39 was IND and so was line 83-93 IND and one star on line 23-25

the igg has one star on line 28, two stars on line 31, line 39 is IND and two stars on line 41 and one star on line 45 and 58

The cdc/nys was positive too. Does this sound like a for sure lyme diagnosis?


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *Chakra* 
Does anyone know how to interpret the igenex test results?

Just not 100% sure I have lyme, but igenex said I do.

The igenex igm says positive with 3 stars on line 41 and line 39 was IND and so was line 83-93 IND and one star on line 23-25

the igg has one star on line 28, two stars on line 31, line 39 is IND and two stars on line 41 and one star on line 45 and 58

The cdc/nys was positive too. Does this sound like a for sure lyme diagnosis?

If everything says positive, then yes it sounds like you have it. We were just talking about IgG vs. IgM and which one showed current vs. old (see above a few posts). The "Healing Lyme" book talked about the different strands. I don't have mine in front of me so I can't say which strands are the important ones.


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## gigismom (Nov 26, 2001)

hi all, just wanted to update on our situation and get some feedback. background... i had lyme while bf my ds last summer. he was about 18 months at the time. i was very symptomatic and was treated with amoxicillan for a month and got better (hope it is really gone...probably will test myself at some point too). he has had allergies and gut issues since long before that. i have started taking him to a new doc for the allergies and gut issues. she is also the lyme specialist in our area or one of them anyway. she felt he could have contracted lyme while bfing. we tested with igenex and the igg came back positive and the igm equivocal. she consulted with dr jones in ct and they came to the conclusion that it appears that he did have lyme at some point but is currently asymptomatic since all of his other issues started before the lyme. so he may have fought it off. Does that happen? I don't really see why the igg could not just be all mine anyway since he was nursing and got my antibodies along with the bacteria, theoretically. he is developing normally and growing great and his allergies and gut problems are getting much better with the treatment we are pursuing. anyway, she suggested these options

1. do nothing and wait and see if he develops symptoms (not my favorite approach given the seriousness of lyme)

2. give a month of zythromax (not my favorite given his already messed up but getting better intestinal flora)

3. homeopathy (which I know nothing about but she would refer me to a good homeopath in the area)... this is his docs favorite option

not sure what to do. any thoughts?

sorry about the bad typing, i am nak with a restless ds at 4am (die off from starting digestive enzymes)

jen


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## HeatherB (Jan 30, 2003)

Personally, I'd start with #3, if I could afford it. I have had great experiences with "over-the-counter" homeopathy, and know it can be very helpful in treating Lyme. I don't know, really, if it can kill off spirochetes, but I would ask. Either way, you're likely to find help for a variety of issues with a homeopath, and the treatments are going to be (again, from my experience) harmless and pretty easy. It just seems like the most gentle path to start on, especially given his gut issues.

Otherwise, I'd be inclined to do the course of Zithro (it's a cheap option, at least if you have insurance, and without the other existing issues, a potentially less-harmful one than letting a possible infection fester), and see how he reacts. If he flares up, I'd extend the treatment until he's clearly better. And, I'd obviously keep in consult with Dr. Jones (bless him!).

My DS was 18m when we started treatment with him, and I can't say I really saw any signs of illness at all. He was more prone to getting sick, but that's about it. When we tried to take him off of the abx after 6 months, though, he clearly regressed. Dr. Jones said to watch for excessive fatigue, and we saw it. He'd be up for literally 20 minutes in a good mood, then would disintegrate into that "I need a nap NOW" type of behavior - but he'd just gotten up 20 minutes earlier.







We put him back on for another year, I think it was, and didn't see the major issues when he came off. FWIW, he DID have positive tests from Igenex, but I don't remember now what they were. (He's 8 now.)


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## gigismom (Nov 26, 2001)

Quote:


Originally Posted by *HeatherB* 
Personally, I'd start with #3, if I could afford it. I have had great experiences with "over-the-counter" homeopathy, and know it can be very helpful in treating Lyme. I don't know, really, if it can kill off spirochetes, but I would ask. Either way, you're likely to find help for a variety of issues with a homeopath, and the treatments are going to be (again, from my experience) harmless and pretty easy. It just seems like the most gentle path to start on, especially given his gut issues.

Otherwise, I'd be inclined to do the course of Zithro (it's a cheap option, at least if you have insurance, and without the other existing issues, a potentially less-harmful one than letting a possible infection fester), and see how he reacts. If he flares up, I'd extend the treatment until he's clearly better. And, I'd obviously keep in consult with Dr. Jones (bless him!).

My DS was 18m when we started treatment with him, and I can't say I really saw any signs of illness at all. He was more prone to getting sick, but that's about it. When we tried to take him off of the abx after 6 months, though, he clearly regressed. Dr. Jones said to watch for excessive fatigue, and we saw it. He'd be up for literally 20 minutes in a good mood, then would disintegrate into that "I need a nap NOW" type of behavior - but he'd just gotten up 20 minutes earlier.







We put him back on for another year, I think it was, and didn't see the major issues when he came off. FWIW, he DID have positive tests from Igenex, but I don't remember now what they were. (He's 8 now.)

thanks for your thoughts.. makes my head spin to think of abx for that long. so glad your ds is better. btw... we may have been in the same ddc with our 2 year olds....i remember you from back at that time anyway









just curious... why did you originally test your ds if you did not see any symptoms?


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## HeatherB (Jan 30, 2003)

Quote:


Originally Posted by *gigismom* 
thanks for your thoughts.. makes my head spin to think of abx for that long. so glad your ds is better. btw... we may have been in the same ddc with our 2 year olds....i remember you from back at that time anyway









just curious... why did you originally test your ds if you did not see any symptoms?

Yeah, it is a long time.







I was on abx for 3 years. Not even sure I'm "cured," but, it is what it is.









And I do remember you from the DDCs.







I was in both Sept and Oct because I was due early Oct, and he was born the end of Sept. When was your DS born?


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## Panserbjorne (Sep 17, 2003)

homeopathy can not kill off spirochetes. That is not looking at the problem in the correct way. It brings your body into balance so that it can fight off the infection itself.

Yes, it's definitely possible to fight off Lyme. Many people do it! Yay if your little one was one of them.

I would certainly do the homeopathy. I use flower essences and homeopathy for every lyme patient I work with, including my husband who had a very significant case with extensive neurological damage. We have had rough spots, but he's been doing fantastically on his remedy. I recently (6 months ago?) switched from a more pathologically based approach to a deeper individual approach for him and the response has been excellent.

Once again I am amazed at the efficacy of such a gentle approach.

I also recommend teasel treatments if you have a practitioner within a reasonable distance. I know there are people here that have done them for their lyme and I perform them as well. That system is equally as gentle, but easier to do. It's a more standardized approach that yields results for everyone who has tried it. I like to support the body in additional ways, but I have had a few people that just wanted teasel that still had remarkable success.


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## Koalamom (Dec 27, 2007)

Homeopathy and teasel for my son and I has been amazing. We did one more round of teasel 2 weeks ago, and there was a noticeable release for me. Health issues and digestion have changed even more for the better. Gluten in the form of spelt is BACK in small amounts and no ill effects!! So many more positive changes too (like potatoes







)

The good thing about teasel and homeopathy is if you don't really have lyme, there is so side effects from using it. It can only do more good for the body. I respect others that take abx, but if you are not sure you have lyme, taking abx does do alot of harm nothing else. Still I respect others that feel the need to take abx as lyme is tough for all of us to live with.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *bluebirdmama1* 
Homeopathy and teasel for my son and I has been amazing. We did one more round of teasel 2 weeks ago, and there was a noticeable release for me. Health issues and digestion have changed even more for the better. Gluten in the form of spelt is BACK in small amounts and no ill effects!! So many more positive changes too (like potatoes







)

The good thing about teasel and homeopathy is if you don't really have lyme, there is so side effects from using it. It can only do more good for the body. I respect others that take abx, but if you are not sure you have lyme, taking abx does do alot of harm nothing else. Still I respect others that feel the need to take abx as lyme is tough for all of us to live with.

That's great news. Are you using the teasel essences? Or still your special blend? I need to get the recipe from you. Do you do it on both of you? Are you also doing detox supporting measures?


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *chlobo* 
That's great news. Are you using the teasel essences? Or still your special blend? I need to get the recipe from you. Do you do it on both of you? Are you also doing detox supporting measures?

I used the teasel root tincture from ladyB for myself and the homemade essence for ds and I. If I could have afforded it, I would have gone with the lengthy teasel essence treatment as I fell that has the ability to do wonders, but I can barely afford everyday meals. It was just amazing that the homemade essence even worked. I will never know what the real healer was, like if the tincture was the only thing that helped going through the breastmilk as I never gave that directly to ds. There was alot of prayer involved though.

The only detox support we have been doing is good whole foods, epsom salts, greens, omegas 3's, molybdenum, brewers yeast (for the b vits) but not too much of anything- all things in moderation. I have also been focusing on more enzyme rich foods, like raw carrot juice. That really helps with our digestion. And I cut out all probiotics as I felt like that could have been competing with the raw food enzymes. I guess we are so sensitive that we had to pick one or the other.


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## Panserbjorne (Sep 17, 2003)

when you use the homemade it has different properties than one you'd buy online from a different region. At least that's my experience and belief. I'm glad you had that experience. And it is SO important to not underestimate the value of prayer. It has identifiable physiological effects.

We used LadyB's too...but it didn't do more than the teasel essence did so we didn't continue. I love her though and would recommend it for anyone who didn't have access to the essences.


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## Koalamom (Dec 27, 2007)

True about the homemade essence being different than others. I made it with lots of prayer and that is why I have been hesitant just posting the recipe as prayer was put into it and that isn't some ingredient you can buy at the store. Perhaps if I could have afforded the essences as I wanted to so much I wouldn't have felt directed to make it. It really could be prayer in a bottle.









What am curious about is why in the book Healing Lyme does the author speak so little about teasel?


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## Panserbjorne (Sep 17, 2003)

Quote:


Originally Posted by *bluebirdmama1* 
*It really could be prayer in a bottle*.









What am curious about is why in the book Healing Lyme does the author speak so little about teasel?

I'm not sure you could find anything where that isn't the truth. Not even just energy medicine either.

I have no idea why he doesn't. There are definitely some question marks for me regarding that book-but overall it's great.


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## gigismom (Nov 26, 2001)

Quote:


Originally Posted by *HeatherB* 
When was your DS born?

oct 20... ten days "late"...hypno birth with very little discomfort, short pushing and in the caul... my best birth yet (and probably the last!)

Quote:


Originally Posted by *Panserbjørne* 
homeopathy can not kill off spirochetes. That is not looking at the problem in the correct way. It brings your body into balance so that it can fight off the infection itself.

Yes, it's definitely possible to fight off Lyme. Many people do it! Yay if your little one was one of them.

I would certainly do the homeopathy. I use flower essences and homeopathy for every lyme patient I work with, including my husband who had a very significant case with extensive neurological damage. We have had rough spots, but he's been doing fantastically on his remedy. I recently (6 months ago?) switched from a more pathologically based approach to a deeper individual approach for him and the response has been excellent.

Once again I am amazed at the efficacy of such a gentle approach.

I also recommend teasel treatments if you have a practitioner within a reasonable distance. I know there are people here that have done them for their lyme and I perform them as well. That system is equally as gentle, but easier to do. It's a more standardized approach that yields results for everyone who has tried it. I like to support the body in additional ways, but I have had a few people that just wanted teasel that still had remarkable success.

I am so happy you chimed in! This is definitely the approach I am leaning toward. We have a homeopath in the office next door to ds doctor and this is who she recommends. She has been recommended to me by other people also but I have no idea if she has success/experience with lyme. I am off to research teasel as I don't know what this is.







I always learn so much from all of you and just feel like a gentle approach that supports the body and has little side effects, with lots of prayer mixed in is the right fit for our family.

peace
jen


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## HeatherB (Jan 30, 2003)

jen, sounds like an awesome birth! DS was due 10/03 and came 9/27. Hard to believe they'll be 3 soon!

I wish there was a homeopath with Lyme knowledge HERE! I really worry, at times, that any or all of us is still sick, and I would so love to support that healing naturally. I know I'd do better with someone overseeing it for me, though, as I'm pretty bad at follow-through. I can be totally gung-ho, then completely forget to do whatever that thing was... and eventually realize that's why I still feel the way I do. :/

And, homeopathy I know is safe and gentle. I've heard of teasel but am not really familiar with it; must find out more.

I can't afford to take my family of 5-6 to CT (again), so I've done little to nothing other than keep an eye on my boys. But I would really love to do things to help them, and maybe get an idea if they ARE sick. It's so hard to know if there are subtle underlying issues when you've got quirky kids to begin with.


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## Panserbjorne (Sep 17, 2003)

Quote:


Originally Posted by *HeatherB* 
jen, sounds like an awesome birth! DS was due 10/03 and came 9/27. Hard to believe they'll be 3 soon!

I wish there was a homeopath with Lyme knowledge HERE! I really worry, at times, that any or all of us is still sick, and I would so love to support that healing naturally. I know I'd do better with someone overseeing it for me, though, as I'm pretty bad at follow-through. I can be totally gung-ho, then completely forget to do whatever that thing was... and eventually realize that's why I still feel the way I do. :/

And, homeopathy I know is safe and gentle. I've heard of teasel but am not really familiar with it; must find out more.


heather,
All you need is a good homeopath. they don't need to be all that familiar with lyme. The thing is that homeopathy treats the individual and doesn't name diseases. What every classical homeopath does is give your body the tools to manage stress. It can be beneficial at times if they do the lyme speak...but in this instance it's a supportive measure. You'd still be evaluated (if necessary) by a primary provider.

Homeopaths also work over the phone quite a bit. I know for myself I require an extensive intake and photos, but have just as good success via distance as I do in the office.

Check around in your area...if there's someone with a good reputation that's all it really takes.


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *bluebirdmama1* 
Homeopathy and teasel for my son and I has been amazing. We did one more round of teasel 2 weeks ago, and there was a noticeable release for me. Health issues and digestion have changed even more for the better. Gluten in the form of spelt is BACK in small amounts and no ill effects!! So many more positive changes too (like potatoes







)

The good thing about teasel and homeopathy is if you don't really have lyme, there is so side effects from using it. It can only do more good for the body. I respect others that take abx, but if you are not sure you have lyme, taking abx does do alot of harm nothing else. Still I respect others that feel the need to take abx as lyme is tough for all of us to live with.

All this talk of teasel and I wasn't sure what it was. I opened my mailbox today and someone sent me a bottle of teasel through www.abundancebymagic.com. That was the most thoughtful, nicest thing anyone has done for me in so long. And I really needed it (found a lump, had mammogram and ultrasound last Friday, doctor got me into specialist for this friday, need a biopsy). I feel so warm & fuzzy now.


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## Panserbjorne (Sep 17, 2003)

How wonderful Kathy! I'm sorry to hear about everything you are going through, but your positive attitude will go MILES in getting you through this! Much love headed your way, sistah!


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## Bestbirths (Jan 18, 2003)

Is anyone in this support group getting tested for XMRV? The new retrovirus linked to chronic fatigue syndrome, autism, neuro immune illness and prostate cancer? If so, would you be interested in starting a support thread for XMRV?
Our test results aren't back yet but I'm preparing for the support we might need.


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## Pattyla (Apr 18, 2004)

Reading. Newly dxed with chronic Lyme


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *Pattyla* 
Reading. Newly dxed with chronic Lyme

Hugs.

You mentioned your kids have weird symptoms. I'm just wondering what they are?


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## Pattyla (Apr 18, 2004)

Ok I have just finished this great thread.

First me. Grew up in CT. Most of my family has had Lyme at least once. (my parents 2-4x each). I live in MO now (and have friends here who have also gotten Lyme.) I am 99% sure I have lyme. Lots of symptoms. And I test + for band 41 in both kinds with Quest running the test. No syhilis or periodontal disease so very likely lyme. I've waiting for my Igenex results. They should be in any day now.

My Dr doesn't treat Lyme and has run every test under the sun on me all coming up empty. Even my former adrenal fatigue is almost completelly normal! (just my late night # is a bit low) I'm on thyroid meds and have been for several years.

The contenders for when I got Lyme are ~98 when I visited CT in the summer and returned home and had a flu like illness. Dr I saw at the time said "no bulls eye, no lyme" and wouldn't test me or anything. I figured if I really had Lyme I wouldn't get better and I did so I assumed he was right. Then when my older dd was 9 mos (2004) I found 2 engorged deer ticks on me. Dr would have treated prophylactically but since I was bfing she didn't want to. Never had any symptoms or rash. Then fall of 2007 while pg with DD#2 I found an engroged tick on my foot while visiting CT. I sent it to the testing Lab at the University of CT and it did not have lyme, but I never tested for any co-infections. I had no idea until recently that it can stay dormant for some time w/o symptoms/bad symptoms.

So now I have felt since feb like I have been hit by the flu and just started to recover. You know how you feel that first day when you know you are getting better but you are still weak and have lots of symptoms? Thats how I feel nearly every day.

Achy joints, achy muscles, extreme fatigue, brain fog, stammering, slurring words, confusion, I can't follow intellectual conversations, I can't make sense of Buhners book (not something I usually would have any trouble with). My muscles get tired very easily just climbing the stairs wears me out. Stiff neck, I have had some severe muscle spasms. One memorable one flattened me (literally) while I was trying to buckle my toddler into her car seat. Took me 2 weeks and several different approaches to get that one better. Another one was for all appearances a femoral hernia but turned out to be nothing and went away after several days. I have also been to the ER for apparent appendix pain that disappeared eventually and showed nothing. I go through phases where things are much worse. I'll get horrible cramps in my feet and legs that will get me out of bed several nights in a row and then nothing for months. Sometimes I'll get them while driving and have to pull over and stop and they will last for an hour or more. They are excruciatingly painful. Now I have stiff hands/fingers, I have just started headaches after years of rarely getting them (I got lots of migranes when I was a young adult but hadn't had any in years till about 2 weeks ago.) Bells palsy 3 weeks ago. And nausea nearly every day for the past week or so. Doesn't seem to matter if I'm hungry or full or whatever with that. Terrible recall too. I attended a baby shower for a member of the church I have been at for 14 years. The person whose house it was I have knows this entire time. I wasn't sure who she was or what her name was when I got there. I looked arround the room hoping I would figure it out and although I did pick out the right woman I wasn't 100% certain I had and couldn't recal her name to save my life. Oh and my hair is falling out steadily and has been since shortly after my 2 year old was born. Increasing my thyroid meds has led to greasy hair and not falling asleep while driving anymore but hasn't slowed down my hair loss.

My Dr seems to think I'm a hypochondriac and was very dismissive of me when I went in with my Bells Palsy. Thankfully the naturopath in his office seems to get it and is being very supportive. Unfortunatly she knows nothing about Lyme either.

I have done SCD (2006) and now am following GAPS for the past 8 mos. My symptoms got much, much worse in Feb of this year. It took me a while to figure out it wasn't just a couple of bad days. A few things have had me concerned for a while though. I thought I looked terrible before starting GAPS although I had lost a lot of weight I needed to lose on a strict elimination diet for my nursling toddler. Starting GAPS made me stop losing weight and look healthier but after a couple of months suddenly my health crashed and here I am.

I just last Monday thought to go to this acupuncture clinic in my neighborhood that treats really cheaply to get some symptom releif. It worked! Plus they know of another acupuncturist who treats Lyme. I knew her as well and called her up the next day. She saw me yesterday and needled me and put me on some herbs. She says my liver/gall bladder is very stagnated and that although I do have classic Lyme symptoms I also could have a mold problem. I live in a 100 year old house in a very humid area of the country so that is certainly possible.

She will treat me the same either way. I made up some tea from the herbs she gave me and have started drinking it. I'm to get needled 1-2x weekly from that clinic in my neighborhood (much cheaper than her) and she will tell them how to do it.

I've got to go to bed now. I'll write about my kids tomorrow.


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## Pattyla (Apr 18, 2004)

My older DD had issues from birth. Hard to define issues but she was miserable most days. From birth she had trouble falling asleep. She screamed in the car all the way home from the hospital and kept it up for the first couple of years of her life. She needed to nurse constantly round the clock. It was every 30-90 min till she was over 2. I was committed to giving her what she needed but I nearly lost my mind meeting that need. She had rashes a lot. She was "allergic" to dairy, eucalyptis oil, wheat, eggs, nightshades, apples I can't remember what all else. She would suddenly have her joints, esp knees, turn bright red. Often her cheeks were red at those times as well. She has high anxiety. Several DX's have been thrown out for her (she is now 6) ADHD, ODD, I just read a description of aspbergers and she fits that except that she is coordinated, usually. She has lots of sensory issues, primarially sensory seeking. Lousy fine motor control/strength. She still struggles with naming all her letters and numbers after years of working on them. She will have days when she is clearly just unable to focus despite her best effort. She has joint pains, two nights ago she woke up crying for an hour because her knees hurt so much. She has slept through the night a handful of times. Until recently she got melatonin nightly or it would takes hours for her to fall asleep. She will get insomnia seemingly randomly. Just wakes up and can't sleep. She wakes up grumpy virtually every morning. She complains that she doesn't feel good much of the time esp in the morning.

My younger DD slept really well and was a happy girl till she was 6 months old then overnight that all changed. She did have yeast issues from birth. I had two fillings replaced by a mercury free dentist who followed the protocol (there was decay and he had me worried about an abcess). Within 48 hours she was a different child. Reflux, tons of food sensitivities, poor sleep, grumpy, we eventually did a scope looking for eosinopilic esophogitis (clean). She has milder sensory issues than her sister and none of the social issues. Her skin is covered in a rash that used to respond to diflucan but now doesn't. She has colds/runny nose very often. Poor digestion. Low tone, she chokes on drink often, like she can't get it coordinated quite right. straws are hard for her to use. She will tell me that she hurts but it is hard to tell what is really going on since she is constantly immitating what she sees and hears arround her. It is to her advantage that she is energized by people and loves being arround them. I am like that too and will feel my best when at an event of some sort with lots of friends (I usually crash afterward but it is like a pain killer for me at the time.)

We all wake up grumpy and needy here. Not a good combo. All I want in the AM is to be left alone and all my girls want is to be coddled. Actually we would all probably like to just veg for the first hour but my toddler wants to veg in my lap nursing and after nursing her for much of the early morning I just don't want to any more. Plus once they are ready to go they need breakfast right away so at least I need to be doing that.

It is easier to convince me that my older DD has Lyme because of the cognitive symptoms but my younger dd has bad digestive symptoms so perhaps that is Lyme in her. I assume I had it before I gave birth to my older dd despite the only tick bites in memory being after she was born. I grew up in CT and could have been bitten at any time and not known it. I have had many symptoms for much of my life. My parents talk about what a happy outgoing baby I was but I remember clearly being afraid of relatives and not wanting to talk to them. I have struggled with ADHD symptoms for as long as I can remember.


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## Pattyla (Apr 18, 2004)

Isn't there anyone on here with Lyme who wants to talk? I could use with some words of wisdom right now. I'm in a really hard spot and not really sure what to do next.


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## Panserbjorne (Sep 17, 2003)

I'm happy to talk to you! I don't have lyme. However I work with it quite a bit and dh had an advanced case.


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## Pattyla (Apr 18, 2004)

I'm trying to figure out if I need to do abx.
I have been really sick for 6 months. I can barely function (and I have two young children and no daytime help). Today was typical. I made it to lunch w/o collapsing but then napped most of the afternoon with my toddler. My 6 year old is on her own when I crash like that and usually doesn't get into trouble.
I started TCM on Sat and feel worse than ever but i'm not sure if this is to be expected or not. I have felt progressively worse these past 6 months with symptoms that go back years. I have a call in to the TCM practitioner but she didn't call me back.
I strongly suspect my Dr will put me on abx if I ask but since my nursing toddler is already covered in yeast I don't really want to do that. However I can't keep going like this.
I have been working with a homeopath but so far the remedies aren't addressing any of the lyme symptoms (other than the bells palsy). I have been on the GAPS diet for 8 months. Very low carb for a very long time because I do so poorly if I'm not low carb. I just don't know what else to do. Every time I think I have found something that helps it only helps the first time and then makes no difference. My first acupuncture appointment was amazing, I felt really good for 2 days. The next 2 have done nothing for me.


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## Panserbjorne (Sep 17, 2003)

Well, I have been fortunate enough to be fairly successful with lyme. I work with it a lot and I rarely have cases where things don't get worse for 1-3 weeks before they get better. I would say that's likely normal for MOST modalities. I hope you get to talk to your practitioner though so she can clear that up for you.

In terms of homeopathy there are multiple different approaches. I had to try quite a few before I found my groove. Initially I was taking a very clinical approach (working with the disease picture, working to stabilize the response, working to address current symptoms etc.) and while that worked for some people I wasn't seeing a big enough change for the majority of them. Now I do things quite differently.

I also use a range of supportive things-herbs, flower essences, biochemics etc. along with nutrition and targeted supplementation where needed. I really feel that to address this alternatively you need to have support from every angle. This is not an easy path to walk, so it's important to get all the help you can.

I can answer whether or not you should do antibiotics. I can tell you that almost all the people I see did, but are still having symptoms. That's just the way it is. Of course that's skewed, because the people who did the abx and had them work aren't looking for treatment.

It's a very personal choice. Do you have specific questions about anything?


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## Pattyla (Apr 18, 2004)

It is good to know that people tend to get worse before they get better. I suspected that but hadn't discussed it with my TCM Dr.
I'm just desperate for something that will help me feel better even a little bit. I have been watcing my kids lives slip by and it beaks my heart to be so useless. My dd is wearing a long sleeved dress today because I can't do the laundry anymore and my dh is too over worked to keep up. And my brain doesn't work anymore. That is so maddening! I can't remember anything, I can't process information that I take in. My attention span is that of a gnat. I can't participate in conversations anymore. I can barely move. I'm so exhausted but sleep doesnt help. I cry at the drop of a hat. It is like being pg (i'm not)


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## Panserbjorne (Sep 17, 2003)

so, are you doing herbs from the TCM practitioner and homeopathics? How many? How often?

Your diet looks great....lyme loves refined junk and starches.

Are you moving at all? Do you know if you have metal issues?

What are your vitamin D levels like? Neurotransmitters? White cell activity?

Are you supplementing to keep your calcium, magnesium, B vites etc up?


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## Pattyla (Apr 18, 2004)

Quote:


Originally Posted by *Panserbjørne* 
so, are you doing herbs from the TCM practitioner and homeopathics? How many? How often?

_Herbs from the TCM. Tea 3x daily from a mix she put together for me. My last dose of the homeopathic was 2 weeks ago I think. We thought it was causing an agrivation so backed off waiting on it to work._

Your diet looks great....lyme loves refined junk and starches.

Are you moving at all? Do you know if you have metal issues?

_Not sure what you mean by moving at all. I don't exercise, I feel much worse if I do. I do as little as possible so that I can do what is necessary. Bringing a basket of clean clothes up one flight of stairs usually requires 10 min of recovery afterward.

I assume metals are part of the problem. I have amalgams. I have had a hair test that didn't look nearly as bad as my dd's test. (her only possible source is me or diet)_

What are your vitamin D levels like? Neurotransmitters? White cell activity?

_My D 25 is good (I take 4000 iu daily though cause it was low) Neurotransmitters had problems. I take 5-htp and taurine per my Dr's recomendation. Haven't noticed any improvement from those. Nothing remarkable on my CBC._

Are you supplementing to keep your calcium, magnesium, B vites etc up?

_I have been experiementing with taking just mag no cal and have fewer leg cramps but now my teeth hurt. I'm trying to increase my yogurt and bone broth to see if that helps. I know drinking lots of raw milk would work for me but hesitate because it isn't allowed on GAPS. I'm extremely sensitive to corn so I go back and forth on taking b-vites. I was taking raw liver for a while but when it stopped making me feel better I stopped taking it._


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## Koalamom (Dec 27, 2007)

Just offering a big hug to you, Patty! My infant son and I have lyme and weare working through it. I know just what you are talking baout, as some days are hard and I am shocked that I even make it without falling appart. Life does get better. We have gone through treatment and it really does work. My eyesight has taken a while to rebuild though.


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## kjbrown92 (Dec 13, 2007)

I see an osteopath, so he does both antibiotics and natural stuff. I had an increase in pain and heartburn and some other odd symptoms (for me) when I started the treatment. I think I'm on my 3rd month of antibiotics (I take 2: minocycyline and bactrim). So I just had a biopsy and then lumpectomy and I had to go off all the natural stuff because I wasn't allowed on any anti-inflammatories or any plant estrogens or blood thinners and all the stuff I was on was on one list or another, and I stopped the teasel just to be on the safe side. So while I was JUST on the abx and nothing else, I had barely any symptoms (except that I got a UTI because I had to go off the anti-inflammatories, so I was on a 3rd abx for most of that time). But painwise, I had nothing. So on Monday I was allowed to start back on everything. So I restarted the Resveratrol, Cat's Claw, and teasel, and HOLY COW. Everything aches. My thumb arthritis is back. My back hurts all the time. The heartburn is back. Etc. So now I'm wondering if the abx are really doing any good or not. So I'm just telling you my experience so far, with the combination of things.

I still haven't heard whether DD2 has it or not. I have to call the doctor one of these days.


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## Panserbjorne (Sep 17, 2003)

Quote:


Originally Posted by *bluebirdmama1* 
Just offering a big hug to you, Patty! My infant son and I have lyme and weare working through it. I know just what you are talking baout, as some days are hard and I am shocked that I even make it without falling appart. Life does get better. We have gone through treatment and it really does work. *My eyesight has taken a while to rebuild though*.

that was the last big thing for dh too. He never had vision problems before lyme and had to get crazy strong glasses. However he's been able to ditch them. It took a while, but he's not been wearing them for about 9 months now and functioning fine!

Before he couldn't read signs, labels etc. It does happen!


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## Pattyla (Apr 18, 2004)

Anyone know about rife machines? Pros and cons (outside of cost)? Can they be used on kids?


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## Joan Lulich (Feb 16, 2007)

Hello Mommas, Just found this thread, was dx with lyme by my chiro two months ago, along with my eight year old son. My chiro treated us both with laser and a NAET kit. He works with frequencies. I am on the mend but I am going to go to another chiro who has vials from Klinghardt and will get tested by him. I don't trust lyme. My first chiro thinks he cures it but I'm not sure about that. I take iodine, started five months ago, and will continue because it makes the difference between a day of sitting around and a day of getting things done. I am shocked that iodine isn't given more attention for treating lyme. Even the iodine forum doesn't talk about it. It is good for momma's milk too. Did you know that nursing depletes one of iodine?

Many people are scared of it, say it will give you goiters but lack of iodine gives one goiters. The blood passes through the thyroid every 17 minutes for cleansing, if there is no iodine, then the blood isn't cleansed.
www.naturalthyroidchoices.com
www.iodine4health.com
www.jcrows.com
I'm in the Pacific Northwest if anyone wants to know the name of my chiro. [email protected]
Cheers,Joan


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## kjbrown92 (Dec 13, 2007)

I've been reading about iodine's role in breast cancer risk as well. How much do you take for the lyme? If I could kill two birds with one stone, so to speak, that would be great!


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## Panserbjorne (Sep 17, 2003)

it really will vary from person to person. You need to start really low and work your way up. The die off can be tremendous and incapacitating for some, so you just need to watch out. We have been supplementing iodine for around 5 years now. I did a test to determine my needs and started high (50 mg) with no issue. Most can start around 12.5. There are those that can't do that and have to cut it in half.

Always good to support adrenals and thyroid with lyme.


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## chlobo (Jan 24, 2004)

I thought it was supposed to be better to start with the adrenals and then work on the thyroid? Is that not true?


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## Panserbjorne (Sep 17, 2003)

no, I agree that it's best to start with adrenals. I don't see iodine as necessarily "targeting" the thyroid though...our bodies need it. Everyone will have different takes, that's for sure. And the reality is the adrenals SHOULD be worked on first because our bodies need iodine...but the die off can really be a stressor. I just don't think the adrenals need to be all there before iodine is intro'd, personally.


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## chlobo (Jan 24, 2004)

Ok, devil's advocate. So I have a gene that necessitates that I take a *ton* of b12. It was suggested to me that until I work on that then doing adrenal and/or thyroid stuff is just a bandaid.

What do you think?

Also, did my email come through? It was kind of big.


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## Panserbjorne (Sep 17, 2003)

yes-we're going over everything tomorrow...we're meeting first thing.

I think that you likely need to be taking that B-12. I don't necessarily think that means cease all other supportive measures. What form are you doing the B-12 in? Injections? Sublingual? Patches? How often? Is it making a difference?

People don't generally find out about that type of thing until treatment is getting them nowhere. Partly because testing is expensive (especially if you are covering a bunch of bases) and no one is the end all be all and gives all the answers. You follow what path makes sense and when things aren't moving you look in a different direction. There is also the reality that different people will be responsive to different things for more than just genetic reasons.

I know...no one answer.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *Panserbjørne* 
yes-we're going over everything tomorrow...we're meeting first thing.

I think that you likely need to be taking that B-12. I don't necessarily think that means cease all other supportive measures. What form are you doing the B-12 in? Injections? Sublingual? Patches? How often? Is it making a difference?

People don't generally find out about that type of thing until treatment is getting them nowhere. Partly because testing is expensive (especially if you are covering a bunch of bases) and no one is the end all be all and gives all the answers. You follow what path makes sense and when things aren't moving you look in a different direction. There is also the reality that different people will be responsive to different things for more than just genetic reasons.

I know...no one answer.









Well this is a new development. I think I got the results on Saturday. So I'm still collecting opinions & digesting the information. I also don't really understand the detox gene results so I wasn't sure how that impacted the b12 thing.

Anyhow, I had been taking a sublingual b12 & MegaFood balanced b complex supplement. I hadn't really noticed anything great with that. I also started OraKidney & Ora-Adrenal a week or two ago.

This week I started ramping up on hydroyb12 megadrops (from Yasko). Ramping up really slow & I feel ok but DS is a little out of control. Not sure its related. I'm only doing a drop over the course of the day, which is 1,000mcg.

Today I just got the methyl b12 megadrops which I'm going to start in another week or so.

I'm thinking about a patch but don't know much about them. Ditto on the shots. I don't want to do anything too drastic until I'm able to wean DS. I think its going to require a weekend away.


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## Panserbjorne (Sep 17, 2003)

ah, I see. I assumed that you went through your practitioner up there and they put you on a regimen...I didn't understand that. So just so I'm aware...these were all tests you requested and don't have help with?


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## kjbrown92 (Dec 13, 2007)

Just talked to the osteo last night, DD2 has lyme too, or at least has been exposed to it (over a year old). He said he'd like her to go on abx for a month. If she gets herx reactions then it's still active. If there's no change, then she kicked it herself.

And for me, he wants me to take a break from the natural stuff for a month (teasel, cat's claw, resveratrol) and just do the abx to give my body a break. Then start up again. Not sure whether giving my body a break means I can start other things. But I've started cell salts today. I also need to start chelating. Not sure whether I should do that now or wait the month.


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## Pattyla (Apr 18, 2004)

why does your practitioner say that the exposure was over a year ago?

My Dr doesn't understand the tests so is no help with that sort of thing.

Also have you been on abx continously? I don't understand the logic of stopping herbs to give your body a break but continuing abx. (I'm just doing herbs and haven't done abx yet and hope to avoid them.)


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *kjbrown92* 
Just talked to the osteo last night, DD2 has lyme too, or at least has been exposed to it (over a year old). He said he'd like her to go on abx for a month. If she gets herx reactions then it's still active. If there's no change, then she kicked it herself.

And for me, he wants me to take a break from the natural stuff for a month (teasel, cat's claw, resveratrol) and just do the abx to give my body a break. Then start up again. Not sure whether giving my body a break means I can start other things. But I've started cell salts today. I also need to start chelating. Not sure whether I should do that now or wait the month.

I'm not sure how he knows its over a year old. I thought it went "chronic" after several months. After that you can't tell how long you've had it. You either have the "acute" antibodies or the "old" antibodies indicating a prior infection.

Why doesn't he want you to take a break from abx too? Aren't they a burden as well? I guess that sounds a little odd to me as abx do things to the body, just like the natural stuff.


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## kjbrown92 (Dec 13, 2007)

Quote:


Originally Posted by *Pattyla* 
why does your practitioner say that the exposure was over a year ago?

My Dr doesn't understand the tests so is no help with that sort of thing.

Also have you been on abx continously? I don't understand the logic of stopping herbs to give your body a break but continuing abx. (I'm just doing herbs and haven't done abx yet and hope to avoid them.)


Quote:


Originally Posted by *chlobo* 
I'm not sure how he knows its over a year old. I thought it went "chronic" after several months. After that you can't tell how long you've had it. You either have the "acute" antibodies or the "old" antibodies indicating a prior infection.

Why doesn't he want you to take a break from abx too? Aren't they a burden as well? I guess that sounds a little odd to me as abx do things to the body, just like the natural stuff.

He said the IgG tells one and the IgM tells the other on the Igenex lyme test - recent or over a year old.

I told him that when I went off all the natural stuff for my surgery (had to be off for 5 days before/after but stayed on the abx) that my back felt better than it had. I thought that meant that the abx weren't really doing anything and that the natural stuff was. But he said sometimes it was better to take a break and let some of the detox stuff out. I started cell salts this morning (I'll also post on the cell salts thread) and my back feels really good. Placebo effect?


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## chlobo (Jan 24, 2004)

Hey, take feeling better any way you can get it.


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## Pattyla (Apr 18, 2004)

I read that for Lyme the one that is supposed to show recent (I cant keep the different ones straight) is commonly positive in people with chronic lyme. That was the one I had positive. No bands at all on the other one. (I have also read that is common).


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *Pattyla* 
I read that for Lyme the one that is supposed to show recent (I cant keep the different ones straight) is commonly positive in people with chronic lyme. That was the one I had positive. No bands at all on the other one. (I have also read that is common).

That's so odd because I had nothing on the "recent" test and only a few bands on the chronic. My test was deemed "inconclusive" but I"m assuming I have it.


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## Panserbjorne (Sep 17, 2003)

the fact remains that these are not super accurate tests regardless....you go with what you know is happening in the clinical picture along with the tests. You really can't rely on them alone except for in cases of acute infection (when a positive is generally a positive.) Doesn't work the other way though...a negative can be a false negative and often is.


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## chlobo (Jan 24, 2004)

They aught to just say it's either positive or undetermined.


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## kjbrown92 (Dec 13, 2007)

All 3 of us had positive bands on both. I still have to get a copy of DD2's test next time I go into the office (for the summer, we've been doing phone updates with the doctor).


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## farmerjess (Feb 9, 2008)

Joining you all here.







I have been sick with various things for about 4 years now but have been feeling extra fatigue for the last 2 months or so. I got the western blot last week and have 2 reactive IGM bands so a positive test. So confused. I do really terrible with abx. I've had 100's of tick bites over the last 3 yrs so I have no idea if this is active or not. Any points in good directions would be much appreciated. I am feeling really ineffective at everything right now. My dr wants me to make a decision on taking a 4-8 week course of either doxycyclene or amoxicilian. I am bfing a 21 month old. I will go back and read the rest of the thread.


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## Koalamom (Dec 27, 2007)

Quote:


Originally Posted by *farmerjess* 
Joining you all here.







I have been sick with various things for about 4 years now but have been feeling extra fatigue for the last 2 months or so. I got the western blot last week and have 2 reactive IGM bands so a positive test. So confused. I do really terrible with abx. I've had 100's of tick bites over the last 3 yrs so I have no idea if this is active or not. Any points in good directions would be much appreciated. I am feeling really ineffective at everything right now. My dr wants me to make a decision on taking a 4-8 week course of either doxycyclene or amoxicilian. I am bfing a 21 month old. I will go back and read the rest of the thread.

Welcome to the group! Sending a big hug your way.

You will find many differnt routes here. I didn't do abx for lyme and am glad, but others feel best with abx. It is good to go with your gut. I am bfeeding a 1 yr old and he is being treated as there is no proof that I cannot pass it lyme too. Or maybe my LO has immunity from the milk? That would be nice.


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## Panserbjorne (Sep 17, 2003)

that would be nice!


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## farmerjess (Feb 9, 2008)

Panserbjorne: I emailed you yesterday with some lyme questions. I would love to get your opinion. I got sick with a flu like illness in June which lasted about 4 weeks. The fatigue never went away. I never felt great before this either so it's hard to know. At this point I feel like I am deteriorating by the day with new body pains and today I am noticing not great communication between me and my right hand which is scary. Do you think antibiotics are warranted in this which seems like it could be an acute case? I am all about supporting my immune system and don't really like the kill em off attitude. I did get 2 positive IGM bands and no IGG. I feel like maybe I am being stubborn by not just taking the frickin abx and it *could* possibly help my body by knocking it back a lot. What do you think about doing a short course of abx to knock it back and following it with an herbs/homeop/acu/supps approach plus primal diet which I am already on OR just do all that amazing stuff that feels right and forget the abx. Thanks.


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## Panserbjorne (Sep 17, 2003)

sorry! I'm playing major catch up after a very intense week last week that has leaked into this one. I'm getting there!


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## farmerjess (Feb 9, 2008)

thanks <3


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## FireWithin (Apr 29, 2004)

ugh, just lost my entire post.









I just had a beautiful baby girl early Tuesday morning. Although fussy, she appears to be healthy.

Last week and weekend I walked a lot in the woods, always staying on paths, but sometimes sat on rocks --oops and once on a log. I live in a high lyme incident area.

Monday I wasn't feeling high energy, and felt a little achy. After some ultrasounds it was determined that I needed to be gently induced with Pit. During the check in I saw that my temp was 99 - not high at all, but I tend towards a lower than normal temp. After a fast and furious labor, I began to hemorage due to retained placenta. Although I didn't use any pain meds during labor, I was given pain meds and meds to knock me out and had surgery to remove the placenta. I was given Kessler (or a name something like it) as an antibiotic, intravenously.

During my first shower, Wed morning, I discovered a very engorged tick on my back. The tick was shown to infectious disease people at the hospital and it was determined that it was a female deer tic, on me for 2 plus days.

I am being encouraged to take amoxicillin 2 grams, one dose as a profilactic measure. I promised to talk to my family doc today about it, when I brought the new baby to her for her check up. Turns out that my doc has left the state and is practicing 5 hours away, without telling her patients.









So this is how I am feeling. Keep in mind I am new pp, with blood loss, feeling stressed about not having a doc, etc. My H & H levels pre-birth were 36, currently they are 24. And am definitely having emotional issues -totally feeling scared and overwhelmed about current life and processing the birth.

I am feeling achy, my lymph nodes are visually swollen in both my armpits and are sore. My head started hurting yesterday mid-day. Although I have a red spot at the bite spot, I do not have a bulls-eye, but I know that isn't saying much.

I am worried I have lyme, worried I've given it to the baby, worried about taking more antibiotics considering our food allergy issues (which I suspect baby is already reacting to me over).

FWIW - I took ledum 30c. I don't have 200c to test. Asked my pendulum and it said I did have lyme. I do not believe I am in the right emotional state of mind to determine it this way.

I've begun to take high powered probiotics.


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## kjbrown92 (Dec 13, 2007)

Can they test the tick for lyme?
From what I've seen of lyme, I'd take the abx and lots of probiotics.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *Mammo2Sammo* 
ugh, just lost my entire post.









I just had a beautiful baby girl early Tuesday morning. Although fussy, she appears to be healthy.

Last week and weekend I walked a lot in the woods, always staying on paths, but sometimes sat on rocks --oops and once on a log. I live in a high lyme incident area.

Monday I wasn't feeling high energy, and felt a little achy. After some ultrasounds it was determined that I needed to be gently induced with Pit. During the check in I saw that my temp was 99 - not high at all, but I tend towards a lower than normal temp. After a fast and furious labor, I began to hemorage due to retained placenta. Although I didn't use any pain meds during labor, I was given pain meds and meds to knock me out and had surgery to remove the placenta. I was given Kessler (or a name something like it) as an antibiotic, intravenously.

During my first shower, Wed morning, I discovered a very engorged tic on my back. The tic was shown to infectious disease people at the hospital and it was determined that it was a female deer tic, on me for 2 plus days.

I am being encouraged to take amoxicillin 2 grams, one dose as a profilactic measure. I promised to talk to my family doc today about it, when I brought the new baby to her for her check up. Turns out that my doc has left the state and is practicing 5 hours away, without telling her patients.









So this is how I am feeling. Keep in mind I am new pp, with blood loss, feeling stressed about not having a doc, etc. My H & H levels pre-birth were 36, currently they are 24. And am definitely having emotional issues -totally feeling scared and overwhelmed about current life and processing the birth.

I am feeling achy, my lymph nodes are visually swollen in both my armpits and are sore. My head started hurting yesterday mid-day. Although I have a red spot at the bite spot, I do not have a bulls-eye, but I know that isn't saying much.

I am worried I have lyme, worried I've given it to the baby, worried about taking more antibiotics considering our food allergy issues (which I suspect baby is already reacting to me over).

FWIW - I took ledum 30c. I don't have 200c to test. Asked my pendulum and it said I did have lyme. I do not believe I am in the right emotional state of mind to determine it this way.

I've begun to take high powered probiotics.

I think you want a higher potency of the ledum. I was told 1M. Ask PB she might know as she has experience with lyme. If you need 1M I think I have it.

I would not fool around with lyme. It totally sucks. I would definitely be concerned about transmission.

I sent you an email. So sorry you are going through this. Let me know if there is anything I can do to help.


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## FireWithin (Apr 29, 2004)

thanks for your feedback Chlobo and Kathy

The hospital has the tick and also drew my blood for a titer. My midwife came back to me to say that it is too early for a titer to show anything. I forgot to ask what happened to the tick.

I might have to drive up and energy test the 1M chlobo. Do you have 220c?

I have an email into PB. I asked her if I can pay her as a consultant. I don't want to take any chances.

I was thinking that since my gut has already been influenced by antibiotics, I probably should go ahead and take something for the possible Lyme. Will get feedback from PB.

Got your email Chlobo - thanks


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## kjbrown92 (Dec 13, 2007)

I agree with Carren. PB/Elizabeth might have a more gentle approach with nursing and all that. I just know it's easier to cure at the get-go than it is later on. And can cause food intolerances, at least that's the theory on DS and DD2's food issues. So I'd want to nip it in the bud, whether that's by teasel, or other herbs, or abx or whatever, just make sure it's safe for you (and the baby) at this juncture. Sending thoughts your way.


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## Panserbjorne (Sep 17, 2003)

Oh honey. I sent you a return email. Yes, you want a higher dose of ledum-1M at the least. I'm so sorry things are so tough right now! Sadly it's really too early for the tests to show much of anything. I hear your concern about abx, but here's the thing. The only time they're really effective with lyme are in situations like yours when it's caught IMMEDIATELY.

We can chat more later. Thinking of you.


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## chlobo (Jan 24, 2004)

Quote:


Originally Posted by *Panserbjørne* 
Oh honey. I sent you a return email. Yes, you want a higher dose of ledum-1M at the least. I'm so sorry things are so tough right now! Sadly it's really too early for the tests to show much of anything. I hear your concern about abx, but here's the thing. The only time they're really effective with lyme are in situations like yours when it's caught IMMEDIATELY.

We can chat more later. Thinking of you.

How many doses do you think would be good to have?


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## Panserbjorne (Sep 17, 2003)

depends on the individual's sensitivity. Some just need one, other need it once a day for a week...it's a see as you go kind of thing.


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## mamatwig (May 14, 2009)

hey mamas,

i was diagnosed with lymes disease in may of 09. it ruined my life. it hit me in one day and i felt like i was dying. i kept testing neg for it and finally one day after the 5 time getting tested i tested pos for 2 bands. although that is technically still negitive ( i believe you have to test pos for 3 or 6 to be considered pos) , i was working with a natural dr that believed it was pos. i eventually stopped working with him, i hated his bedside manner and he was very expensive.
i was told about a chiropractor up in chesnut ridge NY who did some applied kinesiology and was a nutritionist and was great and getting rid of lyme. i was very skeptical but it was orth a shot. i went to his office, in the waiting room met a woman who had lyme for 11 yrs and had been on permanent disability from it. she said the dr cured her. he checked me out and said i definitely had it.
its so weird cuz he does it by feeling around your stomach and touching acupressure points. but he put me on a 3 week protocol of herbs and said to come back. i did and had to see him about every 2 wks for 2 months, each time he would give me herbs and do lymph drainage. then it got better! he said when my immune system flairs up i will still feel some symptoms for about 6 months as my body heals.

thats exactly what happened. i would feel great, but when i would get sick or when i had my period i would get the firbo aches again and be exhausted and my feet would go numb. after 6 months i had nothing. i felt amazing again.

since then i have referred him to 7 different people who either had the symptoms of lyme or were diagnosed with it and he has found it in all of them and gotten rid of it.
i then got bit again this passed summer and within 6 days all the symptoms hit me again. i rushed to him and he did the 3 wk protocol again and then i only had to see him 2 more times and he got rid of it. it took less time to get rid of because this time it was caught early.

i no it sounds crazy, and i was so doubtful. especially because lyme is suppose to be such a smart bacteria and so hard to get rid of, but this dr can do it. its amazing!

his name is dr bloom, he is in chesnut ridge ny. i would fly half way around the world to get to him, i believe in him that much. and he is not very expensive. the 1 consultation os 165 and then every visit after that is 85.

he without a doubt can give you your life back!!


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## Panserbjorne (Sep 17, 2003)

that sounds amazing! thank you for posting the information. it's always great to have tried and true resources. I'm glad you are feeling so much better.


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## eireann (Sep 29, 2007)

mamatwig that's great!!!


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## Koalamom (Dec 27, 2007)

Hugs mama2sammo! (and a wonderful congrats on the new babe







!)

I feel your pain, because I was diagnosed with lyme a few months before my baby was born. I am all for natural methods, but since you found out early, I would do the abx. I am only using natural methods now since I apparently had lyme for years. Oh but abx are terrible, but I just don't know. I really cant stand lyme.

PB- please go more into the ledum protocol? I may have to pickup some high potency ledum... although we dont have ticks in high mountians cold VT.







(seriously that is why we moved here.)

An update- I have been seeing a naturopath that does some sort of tapping and is "making my body a inhospitable environment for the lyme". My food allergies are slowly changing for good, and no more legs swelling issues since seeing her. Still I am not all done yet I know it.
*She mentioned 24 different types of lyme. Anyone heard of this*?
My babe is seeing amazing improvement with growth, the once skinny underdeveloped babe is now full of hair, words, teeth, appetite, and weight!


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## Panserbjorne (Sep 17, 2003)

I guess this is the best place to post this-even though it's my dh and he's not technically a "mama" with lyme disease. Ah well! I just wanted to give feedback on the new neuroscience test for Lyme I can't say enough wonderful things about it. For anyone that is looking for answers that has had a negative or questionable test result OR wants to monitor progress-it's fantastic.

I just did the test for my dh and got results back yesterday. I held off treatment for his latest flare (with his consent) to do the test. After putting it off for a few days it took me 4 days to get everything under control again and he's currently symptom free once again-yay, but I wanted him to be flaring when we did it. Totally worth it. The test measures four different ways the body responds. It actually is backed by the CDC and covered by most insurance companies. One of the reasons THAT is so cool is because it does confirm the presence of lyme in both acute and chronic phases.

Anyway-just a review. The test was well worth doing. It showed that he was in an acute flare of a chronic infection, and how his body was responding (different cytokine levels.) It shows T cells, B cells, cytokines and antibodies. It's also been shown to be 96% effective. As I said, this is fantastic for people who suspect chronic lyme, but want definitive confirmation.


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## chlobo (Jan 24, 2004)

Does knowing these specifics give you ideas on how to treat it? Like if certain cytokines are high or whatever you do something different than if something else were high? does that even make sense?

Quote:


> Originally Posted by *Panserbjorne*
> 
> I guess this is the best place to post this-even though it's my dh and he's not technically a "mama" with lyme disease. Ah well! I just wanted to give feedback on the new neuroscience test for Lyme I can't say enough wonderful things about it. For anyone that is looking for answers that has had a negative or questionable test result OR wants to monitor progress-it's fantastic.
> 
> ...


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## Panserbjorne (Sep 17, 2003)

yes, it makes sense and the answer is yes.


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## Koalamom (Dec 27, 2007)

PB, thank for posting!!


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## HRJ (Sep 2, 2010)

Question - I recently had a dr wonder if I should be tested for lyme b/c I have interstitial cystitis and a few other things. I am 29 weeks pregnant and now that I've read some of these threads, I'm concerned that if I DID have it, transmitting to baby. If I were tested and were positive, would taking antibiotics during the PG prevent the baby from getting it? Could baby already have it, and if so would treating w/ antibiotics treat the baby inutero or would baby still need antibiotics after delivery? I am due March 2 which is just around the corner. Just wondering if it is too late and if I should treat after delivery (if I were positive).


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## tatsu15 (Dec 18, 2009)

Would symptoms of Lyme disease remain dormant in your body for years after being bitten?

I got bit by some ticks during my early twenties or maybe my teens. But no symptoms. I'm 36 now. I did get a test done... but it was negative. But I do remember getting bit by ticks that were on my dog.


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## kjbrown92 (Dec 13, 2007)

Yes, at least that's what I've heard. The osteo thought I must have gotten lyme between DD1 and DS, because DS and DD2 both had food intolerances, and DD1 had no symptoms of anything. DS and DD2 have both tested positive (Igenex testing, which most lyme doctors say is the only test worth doing). I haven't had DD1 tested. But looking back, and the fact that I apparently also tested positive for Rocky Mountain Spotted Fever co-infection, so I think it actually happened when I was 14. And I asked if that was possible and I was told that it could have been dormant and then something else (such as the birth of DD1) could have started it up again. So I don't know if all lyme doctors agree on everything but from what I was told, yes.


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## Panserbjorne (Sep 17, 2003)

Quote:


> Originally Posted by *tatsu15*
> 
> Would symptoms of Lyme disease remain dormant in your body for years after being bitten?
> 
> I got bit by some ticks during my early twenties or maybe my teens. But no symptoms. I'm 36 now. I did get a test done... but it was negative. But I do remember getting bit by ticks that were on my dog.


it sure can. it can take a stressful period to awaken it and create a situation that is hospitable to the "first flare."


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## tatsu15 (Dec 18, 2009)

Thank you for the information. I remember getting bitten by the dog ticks- they were brown colored ticks. Is it true that the tick has to be on you for at least 24 hours in order for someone to get Lyme's Disease?


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## tatsu15 (Dec 18, 2009)

Quote:


> Originally Posted by *kjbrown92*
> 
> Yes, at least that's what I've heard. The osteo thought I must have gotten lyme between DD1 and DS, because DS and DD2 both had food intolerances, and DD1 had no symptoms of anything. DS and DD2 have both tested positive (Igenex testing, which most lyme doctors say is the only test worth doing). I haven't had DD1 tested. But looking back, and the fact that I apparently also tested positive for Rocky Mountain Spotted Fever co-infection, so I think it actually happened when I was 14. And I asked if that was possible and I was told that it could have been dormant and then something else (such as the birth of DD1) could have started it up again. So I don't know if all lyme doctors agree on everything but from what I was told, yes.


Did your child display any symptoms of Lyme Disease other than food intolerance?


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## Panserbjorne (Sep 17, 2003)

Quote:


> Originally Posted by *tatsu15*
> 
> Thank you for the information. I remember getting bitten by the dog ticks- they were brown colored ticks. Is it true that the tick has to be on you for at least 24 hours in order for someone to get Lyme's Disease?


no, they are now saying it can just take hours.


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## kjbrown92 (Dec 13, 2007)

Quote:



> Originally Posted by *tatsu15*
> 
> Thank you for the information. I remember getting bitten by the dog ticks- they were brown colored ticks. Is it true that the tick has to be on you for at least 24 hours in order for someone to get Lyme's Disease?


They are saying that it can be deer or dog ticks, and it doesn't take that long to transmit.

Quote:


> Originally Posted by *tatsu15*
> 
> Quote:
> 
> ...


Well, the symptoms of DS's food intolerances were behavior, digestion, leg cramps, lip rash, etc. and when he started being treated for lyme, he's now getting the lip rash without eating any offending foods which the doctor thinks is die-off (I just started keeping track of it to see if it's cyclical). And he's also started getting leg pain again with no injury, and again the doctor thinks it's die off. So it seems like they're intertwined somehow. I had back pain/spasms for years, and I when I went off my food intolerances, the perpetual back spasms went away. When I started treating for lyme, the back spasms came back. So again, it's somehow related. Not sure how. But it seems like the weak link gets worse when the lyme is active/dying off.


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## Koalamom (Dec 27, 2007)

Quote:


> Originally Posted by *Panserbjorne*
> 
> Quote:
> 
> ...


That is horrible news.

Some may think it crazy that we moved so far north just to get away from the ticks. I dont have to worry when my kids go out into the yard to play. Lyme has mess with our lives in the worst way possible.


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## Panserbjorne (Sep 17, 2003)

I'm so sorry, mama. I'm hoping you're finding relief. If you ever need to talk feel free. I know it was a very tough path for my dh. It can be extremely challenging.


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## tatsu15 (Dec 18, 2009)

So what kind of test should I get? My doctor already told me my test was negative, but after hearing that the test I took is not accurate- I don't know what to do. I don't have any symptoms btw, just concerned since I do remember getting bit by a dog tick when I was a teenager.

I took the B. BURGDORFERI AB, EIA test . I took this test about 16 years after being bitten. May I ask what tests you took to confirm Lyme Disease and how many times did you test negative. Did doctors explain why your test results were negative (if they were in the beginning).


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## Koalamom (Dec 27, 2007)

It really isn't that bad. I am finding relief slowly, but it has been a long process. I am doing what I can and the natupath I am seeing says that I cannot fully cleanse of the lyme untilI wean my son as the detox will be too much for him. I am ok with that and I am going to nurse him to maybe 2 yrs of age. He is 18 months. My big thing is will I ever really get rid of the lyme as I want to have atleast one more baby someday, but I am worried of passing lyme on again (and all the health issues). Between me having lyme and dh having serious porphyria, our children seem doomed to have one or the either.

Quote:


> Originally Posted by *Panserbjorne*
> 
> I'm so sorry, mama. I'm hoping you're finding relief. If you ever need to talk feel free. I know it was a very tough path for my dh. It can be extremely challenging.


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## kjbrown92 (Dec 13, 2007)

My osteopath said the Igenex test is the only one worth doing. It's the only test I had (and my kids). And we all tested positive the first/only time. Some lyme doctors treat on symptoms alone, I believe. And make sure you get a doctor who is in ILAD (I think that's what it's called but can't remember what it stands for except the L = lyme). The book I got that was the most helpful was called Healing Lyme.


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## Panserbjorne (Sep 17, 2003)

My Lyme Immune ID by neuroscience is newer and far better. It's also covered by most insurance companies, so I am told. It measures for both active and dormant infections, acute and chronic and looks at the way the body responds (which cytokines.) It's 96% accurate which is much, much better than any other test out there.


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## logansmom109 (Aug 26, 2008)

It has been so long since I've checked in with this board, but so glad I did. I was

not able to read back through the 18 pages of info prior to posting, but will at some

point as I am sure there is great stuff previously mentions. Forgive me if I am

being redundant or repeating things here, but wanted to give my story and ask

a few questions.

I have been having odd, vague and yet worsening symptoms for about almost 3
years now. Started with weird shifting pains, severe insomnia, anxiety, severe
neck pain, now progressive peripherial neuropathy, tremor, balance problems, slurred speech,
etc.

Another factor is that I gave birth to my first child right before these things
started so everyone kept telling me I was just having anxiety about being a new
mom and that is why I could sleep and was having pain, etc.

Finally after numerous painful tests and a dx of MS, Lupus, CIDP among others I
demanded a Western Blot test through Igenex and it game up blaringly positve
both IGG and IGM.

Problem is there is not a LLMD anywhere nearby. Other problem is I am torn on
how to approach treatment. I am scared to death to let things keep progressing
by and not take antibiotics, yet I am very aware of the problems associated with
antbiotics and already have systemic candida anyway.

The closest LLMD and the one I saw is in Louisiana and he prescribed Minocycline

and Levaquin (for bartonella dx clinically). Also diflucan daily, b12 shots (levels normal, but he feels it helps

with immune functions anyway), cymbalta for sleep and pain, flexeril for sleep.

I did have a sleep study done a while back when the insomnia was getting bad and

it showed I got 0 minutes of stage 3 or 4 sleep so my LLMD felt this was of concern

and we needed to find a way to get some deep sleep to help with healing and pain.

I have bee too afraid to take the Levaquin at first b/c I have chronic achilles tendonitis

and the black box warning talks of spontaneous tendon rupture...usually of the achilles

tendon. Then I googled it to see how common this happened and the enormous

numbers of people with permanent damage due to this class of antibiotic is frightening.

So I am just taking the Minoclyine at this point.

The LLMD basically said without the Levaquin the likelihood of getting better was poor, but

some of the things I read have me so scared that I mentally cannot get over it. So I began

looking at alternative treatments. Does anyone here have experience with Levaquin or treating Bart

without Levaquin?

I did travel a few hours away in TX for a consult with a lady who did electrodermal
scanning and then prescribed about 20 bottles of homeopathic and herbal drops to
be taken at various times of the day under the tongue. I have been doing this,
but it is horribly expensive and seriously has me near vomiting each time due to
the taste...and she said I would likely need them for about 18-24 months.

This seems very overwhelming to me. I have to take them 3 times a day with
nothing to eat/drink or brush teeth an hour before or after, I am still trying
to work full time with a toddler and a near absent father so it is also a timing
nightmare.

So I know many of you on this board have a great deal of experience with the
homeopathic drops/herbal route. Is there an easier approach?

My other concern is that Burrascano says absolutely no alcohol in any way shape or
form...some guidelines even specify if using these type of drops to mix in
water to let the alcohol evaporate. Well when I called the lady to ask she got
defensive and said the drops would be completely worthless if mixed with water.
Is this true?

I am so confused and I'll say it again desperate. And not to mention nearly
broke financially after that first visit with this woman and buying all of her
wonderful drops that I am now worried about taking and can barely stomach
taking.

On a side note, I am sick emotionally because I thought I was doing a great
thing by nursing my son for two years and now that I know this is Lyme and that
it can be passed through breast milk (not to mention in utero...I have no idea
for sure when I got it, though I did have a tick that I pulled off of me soon
after he was born), I cannot stop wondering if he has it too.

He doesn't seem sick but every time he seems more tired than a toddler "should"
or says something hurts I immediately get a pit in my stomach. I am going to get
him tested through Igenex as well, but haven't decided what to do in the event
of a positive, in light of really no clinical signs. So if anyone has insight on
that note I would treasure it.

I know this is way too long especially right around the busy holidays, but I
just appreciate anyone who has made it this far and who would respond with some
note of encouragement or voice of reason.

Thank you in advance...and Happy New Year to you all.

Erin


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## logansmom109 (Aug 26, 2008)

Panserbjorne,

Is there a specific name for this test? I would love to find out more about it and the availability of it here in TX. I have to beg, plead and basically steal for anything I get around here so the more specifics the better. It sounds fabulous!

Also, I haven't made it through all of the past posts yet (just made my first post a minute ago and am working backwords), but if you could give me some specifics on your husband treatment I would love to hear what is working for him. I realize everyone is different.

Thank you!

erin

Quote:


> Originally Posted by *Panserbjorne*
> 
> I guess this is the best place to post this-even though it's my dh and he's not technically a "mama" with lyme disease. Ah well! I just wanted to give feedback on the new neuroscience test for Lyme I can't say enough wonderful things about it. For anyone that is looking for answers that has had a negative or questionable test result OR wants to monitor progress-it's fantastic.
> 
> ...


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## logansmom109 (Aug 26, 2008)

I have to say this portion is fascinating to me. As I was going through the deluge of tests when the peripheral neuropathy got really bad one of the tests they did was a CT scan. I am not kidding when I say that within about 3-5 minutes of them injecting the contrast (which is basically iodine) I had a huge improvement in the burning in my hands and feet. The improvement lasted for nearly 48 hours, but then symptoms returned. I asked numerous docs about this, even my LLMD and they all said they had never heard of such a thing and just shrugged it off as one more crazy thing I had.

What dosages of iodine should one start with if a deficiency is suspected and has Lyme?

Quote:


> Originally Posted by *Joan Lulich*
> 
> Hello Mommas, Just found this thread, was dx with lyme by my chiro two months ago, along with my eight year old son. My chiro treated us both with laser and a NAET kit. He works with frequencies. I am on the mend but I am going to go to another chiro who has vials from Klinghardt and will get tested by him. I don't trust lyme. My first chiro thinks he cures it but I'm not sure about that. I take iodine, started five months ago, and will continue because it makes the difference between a day of sitting around and a day of getting things done. I am shocked that iodine isn't given more attention for treating lyme. Even the iodine forum doesn't talk about it. It is good for momma's milk too. Did you know that nursing depletes one of iodine?
> 
> ...


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## logansmom109 (Aug 26, 2008)

Sorry I have been so heavy on the posts today. I just found this thread and am going nuts trying to take it all in.

This is a really dumb question, but I am so new to homeopathy that I am trying to figure out exactly what you mean when you use the word. I used to just picture the little pellets similar to the teething tablets we used for DS, etc.

The reason I wonder is that they lady I mentioned in my original post (though not a certified homeopath ..pretty sure TX doesn't certify these folks???..she did the EDS and then recommended what she called homeopathic drops. I have to put them under my tongue (10-15 drops at a time), hold for 1 minute. There are about 15-20 bottles of these drops...some herbal, some homeopathic, but regardless, they all taste terrible.

So when I hear you call it "gentle" I chuckle. I would like to start DS on a treatment if he comes back positive as I nursed him for 2 yrs (he is now 2 1/2), but I know one time of me putting these drops in his mouth and he will run for the hills. Plus the whole, you can't eat or drink for an hour before or after the drops makes it hard when you have to take them 3 times a day and try to work, etc.

I'm just wondering if I saw someone who didn't really know what she was doing (God I hope not b/c I sure did give her a lot of money), or if this is just another type of homeopathy.

Thank you for the clarification!!!

Erin

Quote:


> Originally Posted by *Panserbjorne*
> 
> homeopathy can not kill off spirochetes. That is not looking at the problem in the correct way. It brings your body into balance so that it can fight off the infection itself.
> 
> ...


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## Panserbjorne (Sep 17, 2003)

Hi there-and no worries on posting! That's what we're all doing here, right?

So I don't know if you saw my post, but the test is called My Lyme Immune ID and it's done through neuroscience. Many MD's have accounts with them, but if they don't they're easy to set up. You just bring the test kit to a lab, have the blood drawn and they send it in. Results take a few weeks, but it's very extensive in terms of the information.

Quote:


> Originally Posted by *logansmom109*
> 
> Sorry I have been so heavy on the posts today. I just found this thread and am going nuts trying to take it all in.
> 
> ...


Okay, and as a response to the above post....

Homeopathy is a system of medicine. The term "homeopathy" is often used incorrectly and as a blanket for many different approaches. Teething tablets are not technically homeopathic (combinations by strict definition cannot be) but they are prepared in accordance with homeopathic standards. You can use a homeopathically prepared substance in a variety of ways, and not all will be homeopathic. I know that's confusing! I'm sorry! But you can prepare borrelia, for instance homeopathically but administering it for lyme disease would not be homeopathic-it would be isopathic. Neither here nor there as far as you're concerned. So I'll move on.

If you are seeing a homeopath and she is using homeopathic remedies you should know what they are. Does it state names on the bottles? I wouldn't step on his/her toes as she has the full case and history in front of her, but I can tell you I ask that people wait about 5 minutes to eat or drink. I see no reason, theoretically or in practice where you need to wait an hour. It's a standard recommendation, but not all that practical. From what you are saying I'm wondering if you are doing low dose drainage which is different than homeopathy. For all intents and purposes they can loosely be called homeopathic-but that could be why she doesn't want you taking them in water and you are taking so much (volume wise.)

Herbs can be pretty nasty tasting...no joke. They are not as gentle as homeopathy, but when used well they can be wonderful.

If it's working, she likely knows what she's doing. No worries there! Different people have different approached based on what they see. I work with lyme more than probably anything else so I've gotten to see what works, what doesn't, why and that helps me determine how. That's the dubious benefit I get for being in new england. Does that help at all?


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## Panserbjorne (Sep 17, 2003)

Quote:


> Originally Posted by *logansmom109*
> 
> Also, I haven't made it through all of the past posts yet (just made my first post a minute ago and am working backwords), but if you could give me some specifics on your husband treatment I would love to hear what is working for him. I realize everyone is different.
> 
> ...


I use a multifacted approach for him as I do for others. I rarely rely on just one thing. We use supplements, teasel, homeopathy, cell salts and drainage. Giving specifics is hard-I can tell you what I'm doing now...but my approach has changed over the past few years depending on where he is.


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## AngelBee (Sep 8, 2004)

Subbing to thread


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## logansmom109 (Aug 26, 2008)

Panserbjorne,

Thank you for so much great information. Slowly but surely I am getting this stuff. I am going to look up this My Lyme Immune ID today. I had not heard of that before and I even work in a Dr. office (not a LLDM mind you).

To give you an example of these drops I was given, there are two brands, Deseret and DP Nutritionals. Some are called homeopathic and some are herbal. An example of one says "homeopathic bacterial combination". This is a Deseret brand. The ingredients list about 13 different bacteria such as strep, borrellia, etc all at 6X. There is one for parasite, one for fungus, two for candida, etc. Does that help you know if she is doing the slow drainage thing or not?

Unfortunately I met with her on the advise of a friend and the experience was subpar. The aftercare, when I had a question about the alcohol content being contraindicated in Lyme was even worse with the office manager getting very defensive and rude with me and telling me the lady was too busy to answer her own messages so she was answering for her. I know I will not be going back to her, but hate to waste all of this money, if they might do some good.

What do you use specifically for drainage and is that the same as some call detoxing? Which cell salts do you find to be most helpful with Lyme or is it more symptom based? I have the basic travel kit that has all of them, but haven't quite figured out which to use. My biggest symptoms currently are the terrible peripheral neuropathy and neck/back muscle spasms along with the ever present fatigue and insomnia/anxiety.

Have you treated many folks with Lyme over the phone? I just wondered if this was something that would be better with face to face contact or what your experience has been. Thank you again!!!

Erin


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## Panserbjorne (Sep 17, 2003)

honestly deseret is a GREAT company. That's not really homeopathy though. I use several of their products because they work. That's more in the realm of isopathy which can be very effective. Are you feeling any better? That's the gauge.

What you are doing is not really drainage-which is sort of detoxing. The idea behind drainage is it helps the emunctories function on a higher level AS you are detoxing so things like toxins don't hang around in your body causing more trouble.

For the symptoms you listed you can try the five phosphates...very specifically kali phos and mag phos. I'd include the others though. Working with cell salts is a very symptoms based approach. Some people have more connective tissue issues and that would be a different set of salts. Some have flu like symptoms...again, different salts.

I do work with people over the phone and have 2 people that have done teasel long distance (they administer the remedies themselves with my guidance.) Not everyone uses teasel, but many do.

I haven't personally found that the small amount of alcohol is an issue, but I do wonder why you can't put it in water? I just have people sip throughout the course of the day.

Are you doing magnesium and iodine? I think you said you're doing B-12 too...is that helping with the neuropathy?


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## kjbrown92 (Dec 13, 2007)

I'm not on Levaquin and I have Bartonella. I'm on minocycline and Bactrim (my DS is as well). My LLMD says that the Bactrim helps the minocycline get through the Spirocete cell wall. I've alternated that with teasel and another herbal remedy (Byron White Formula). and I've taken the cell salts that Panserbjorne recommended and they've helped the inflammation immensely. Keep reading - there's some great information on this thread!!


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## logansmom109 (Aug 26, 2008)

Well, I am glad to hear the vote of confidence on the company itself. To answer your question, I am not feeling much difference at all. My attitude is partially to blame b/c I can't get past the horrible taste and I dread taking all those drops three times a day.

Will definately get out the cell salts and start on those you mentioned.

I am taking a chelated magnesium but have not been educated enough on the iodine issue to do that on my own and no doctor will address it with me. Open to suggestions as I know from the experience I had with the CT contrast that it would help me.

I am doing the sublingual methyl b12 3000mcg tid. Dr. prescribed injections but it is the cyanocobalamine which I had read wasn't as good??? With all of this no improvement with neuropathy at all.

I am ignorant on the Teasal issue. Will be looking that one up next. Thank you, thank you.

Quote:


> Originally Posted by *Panserbjorne*
> 
> honestly deseret is a GREAT company. That's not really homeopathy though. I use several of their products because they work. That's more in the realm of isopathy which can be very effective. Are you feeling any better? That's the gauge.
> 
> ...


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## logansmom109 (Aug 26, 2008)

Quote:


> Originally Posted by *kjbrown92*
> 
> I'm not on Levaquin and I have Bartonella. I'm on minocycline and Bactrim (my DS is as well). My LLMD says that the Bactrim helps the minocycline get through the Spirocete cell wall. I've alternated that with teasel and another herbal remedy (Byron White Formula). and I've taken the cell salts that Panserbjorne recommended and they've helped the inflammation immensely. Keep reading - there's some great information on this thread!!


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## tatsu15 (Dec 18, 2009)

Quote:


> Originally Posted by *kjbrown92*
> 
> My osteopath said the Igenex test is the only one worth doing. It's the only test I had (and my kids). And we all tested positive the first/only time. Some lyme doctors treat on symptoms alone, I believe. And make sure you get a doctor who is in ILAD (I think that's what it's called but can't remember what it stands for except the L = lyme). The book I got that was the most helpful was called Healing Lyme.


Is the Igenex test also called western blot test? My doctor just placed an order for me to have the western blot test but she said it's a non specific test (not sure what that means) and results can be inconclusive.


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## Panserbjorne (Sep 17, 2003)

Quote:


> Originally Posted by *tatsu15*
> 
> Quote:
> 
> ...


they sure can be. that's why I'm telling people to look at the neuroscience test. the western blot is 1/4th of it. It is generally covered by insurance and gives you pretty definitive results.


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## tatsu15 (Dec 18, 2009)

I got the results back awhile go for the western blot and it was also negative.


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## PicklinQueen (Aug 21, 2008)

Hi Mamas - haven't been on Mothering in a long time. Thinking of TTC this summer: but am concerned due to having been diagnosed with Lyme's in May 2011 (infected in Nov 2010).

Been through three six week cycles of antibiotics, the last of which was incredibly tough on the system. (Anyone else ever take Tindamax? that stuff knowcked me out, even though I only took it 3 days a week, while also on clarythromyecin and augmentin.) some of the others I took include Amoxcillin, Zythromyecin. I was diagnosed through the Igenix CD57 count ( had less than 1% when diagnosed), and have been working with an amazing midwife/ND here in Maine. I also used Zhang garlic pills, grapefruit seed extract, Artemisia for the babesia co-infection, teasle, probiotics and various mushroom concoctions to try and up my immune system. Been slacking on my supplements recently, need to get back to it.

Last treatement ended in September, haven't been able to afford going back for another blood test, but symptoms have been slowly decreasing.

I've been juicing vegetables several times a week (every day when I can remember), and try to eat low-carb when I can. Harder in the winter due to heavy reliance on local foods.

Just wanted to introduce myself and say "hey", looking forward to sharing and learning from all of you.


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