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Mommas with Lyme Disease <3 - Page 2

post #21 of 369
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.
post #22 of 369
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.
post #23 of 369
Thread Starter 
Quote:
Originally Posted by PrayinFor12 View Post
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.
post #24 of 369
Quote:
Originally Posted by niblet View Post
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.
post #25 of 369
Doulajewla, you said you don't know much about Lyme. I'll throw in some details...

Quote:
Originally Posted by doulajewla View Post
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!
post #26 of 369
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
post #27 of 369
Quote:
Originally Posted by doulajewla View Post
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.
post #28 of 369
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?
post #29 of 369
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!
post #30 of 369
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.)
post #31 of 369
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.
post #32 of 369
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?
post #33 of 369
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.
post #34 of 369
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
post #35 of 369
Quote:
Originally Posted by doulajewla View Post
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!
post #36 of 369
Quote:
Originally Posted by jamie79 View Post
(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.
post #37 of 369
Quote:
Originally Posted by PrayinFor12 View Post
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.
post #38 of 369
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.
post #39 of 369
Quote:
Originally Posted by KermitMissesJim View Post
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 View Post
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.
post #40 of 369
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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