LymeNet Flash: So confused. Your thoughts pleeeeze!!

This is topic So confused. Your thoughts pleeeeze!! in forum Medical Questions at LymeNet Flash.

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Posted by aka400x (Member # 5841) on :

A Little Background:
I was dx with multiple sclerosis 16 years ago. I am now wheelchair bound and need help just to get to the bathroom. I recently saw an LLMD and was tested for lyme. My blood test result was positive according to Igenex. My blood test is negative according to the CDC.

The LLMD wants to initially treat me with Flagyl. My family physician is telling me to stay away from the LLMD. "If you take Flagyl long term and end up with a staph infection ....... good luck". In addition, he says that if I don't have arthritic symptoms, then I don't have lyme. He said that the vast majority of patients who are treated by lyme fanatics never get any better.

I'm unsure what I should do. I just want to be well again. It's been a long time since I've been able to brush my teeth while standing up.

Becky

Posted by TheCrimeOfLyme (Member # 4019) on :

They use flagyl for staph? Um, I doubt its the only abx to use for staph and thats the least of your worries.

What has your GP offered u other than 16 years of MS "support"?

Go with the LLMD. MS, no known cause, no treatment

MS, lyme- treatment, potential for improvement.

The decision seems easy. Forget the GP. In fact, Id get a new one and not mention lyme to them other than " I have it and Im treating it"

Posted by riversinger (Member # 4851) on :

Are you seeing Dr. H or Dr. A? Either way, with an Igenex positive, I would give the antibiotics a good trial. Do they have any cure to offer for MS? I know both of those docs have had so-called MS patients improve on antibiotics.

As COL says, I don't think Flagyl is used for staph. But it can be an effective treatment for the cystic form of lyme. I'm guessing your GP doesn't know much about Lyme.

Check this out and learn about the politics of Lyme in CA:

CA Senate Lyme Hearings
California Senate Hearing on Lyme Disease
Scroll down to February 25, select Health and Human Services Committee, Lyme Disease. Scroll past the first ten minutes or so, it is blank. Amy Tan (author and patient), Ron Keith (Marin/Sonoma Vector Control and patient), Dr. Steven Harris LLMD, Dr. Raphael Stricker, LLMD, and others testify.

BTW, I'm being treated by one of those Lyme Fanatics, and I'm no longer bedridden.

------------------
Sonoma County Lyme Support
[email protected]

[This message has been edited by riversinger (edited 05 October 2004).]

Posted by kissis (Member # 4165) on :

Hi Aka' I been diagnosed with M.S.for going on 13 years now, and A few years ago I tested positive for lyme,but also not cdc standards.I could barley shower myself before starting abx and flagel in particular.It has giving me much more strenth and stamina.I still use a wheelchair/scooter wile shopping but I hope with futher treatment someday I will get back on my feet.

I have tried to go off flagel for awile and see how I do,with in a few days I feel the blood rush out of my feet and I start going down hill quick, and my weaknes returns with a vengence.

But im not going to fool you, this lyme treatment is also hard ,herx's and all.But I look back a year ago and I have made some small progress.

I think it's worth a shot to try it and see how you do. At first I took a 1/4 a pill and with in a half hour I felt like a truck ran me over,but then just a hour later I felt better than I had in years.By end week my dirty house was cleaned,it had been awile!

If you would like to talk more about lyme treatment feel free to e- mail me , sounds like we have alot in common. Terri

Posted by nakaa (Member # 6238) on :

quote:
Originally posted by aka400x:
In addition, he says that if I don't have arthritic symptoms, then I don't have lyme.

I've only had LD a month (that I know of), and can say Neuro problems I've got a gamut of. Matter of fact I'm going to have to stop typing soon cuz the key clicks are KILLING my ears & head. But arthritic issues? No sign.

Posted by mlkeen (Member # 1260) on :

Hi Becky-

Some WB bands report antibodies specific to only lyme. So one positive bamd, one that is Lyme specfic, means Lyme.

Lyme is a clinical diagnosis and can be without arthris. The CDC 5 band thing is not for diagnosis, but for counting the number of cases.

There is mounting evidence that at lest some MS is triggered by bacteria. I believe there is an article at the Canada Lyme site about this.

Trying long term abx cppuld be a good thing. Ingenex is a very good lab and the results can be trusted.

I friend's mom(88 years old) was nearly wheelchair bound, she fell when she tried to walk, and almost nursing home bound, is now walking well with a walker 4 months after beginning long term abx. She was diagnosed with Parkinson's last fall.

The sysmpoms of lyme and ms can be the same, they are both clinically diagnosed and there are many unknowns about both. Keeping and open mind is important.

Mel