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Mommas with Lyme Disease <3

post #1 of 369
Thread Starter 


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?
post #2 of 369
Just wanted to say I have/had Lymes. :
post #3 of 369
Thread Starter 

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.
post #4 of 369
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?
post #5 of 369
Thread Starter 
Quote:
Originally Posted by PrayinFor12 View Post
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.

post #6 of 369
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?
post #7 of 369
Thread Starter 

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.
post #8 of 369
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.
post #9 of 369
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.
post #10 of 369
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
post #11 of 369
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.)
post #12 of 369
It's definitely worth a shot to get in contact with someone who has the expertise..that would be great!
post #13 of 369
Ok, I'll send her an email explaining and asking if she'd mind her email address being on a public place.
post #14 of 369
Thread Starter 

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.
post #15 of 369
Quote:
Originally Posted by PrayinFor12 View Post
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.
post #16 of 369
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.
post #17 of 369
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?
post #18 of 369
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.
post #19 of 369
Thread Starter 

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.
post #20 of 369
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.
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