This is topic MS Patient Or Lymes Patient in forum Medical Questions at LymeNet Flash.


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Posted by Sammy76 (Member # 15518) on :
 
I was diagnosed with MS last year with only MRI and symptoms. After researching I decided to have the Igenex tests done.

I received my results today. The Western Blot came back negative overall, but some of the bands were positive or IND.

My LLMD decided that based on the IND and my symptoms, more than likely I have Lymes.

Has this ever happened to anyone? Do I continue my MS medicine? The injections are very painful and cause multiple side effects.

I can't imagine dealing with the side effects of the MS injections and the Doxy.

Please help.

Thanks,
Samantha
 
Posted by sixgoofykids (Member # 11141) on :
 
If your LLMD has diagnosed you with Lyme, I would go with what he recommends regarding the MS meds. [Smile]

Many with MS are misdiagnosed and really have Lyme.
 
Posted by Lymetoo (Member # 743) on :
 
Here's some info for you. Maybe you haven't seen some of these.

MS and Lyme
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041617

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042877

http://www.geocities.com/SoHo/Gallery/6412/stealth.htm

She was dx'd MS found out Lyme.
Her story is featured on the Public Health Alert Newsletter
http://www.publichealthalert.org/NOV%2007%20PHA.pdf

of course there is DVD of Dr. P's presentation
Chronic Lyme Disease: Connection to MS- Facts behind the controversy
http://www.newhaven.edu/unh/lyme/

Which bands were positive? Hope you have a good LLMD!! [Smile]

 -
 
Posted by Michelle M (Member # 7200) on :
 
We are MANY.

That is, those of us previously (mis)diagnosed as having MS, when in fact we have lyme.

It is possible, too, that you have one or more of the common coinfections which would exacerbate your symptoms. For me, it was babesia WA-1. Not a fun party by any means.

I had numerous brain lesions, abnormal evoked potentials, enough to warrant an MS dx in the neuro's mind. Never mind my description of a bullseye rash. He scoffed at that! I basically diagnosed myself, then found an LLMD through this very fine support site. My western blot was smokin' positive!! Yours may well be, after a dose of antibiotics.

I would take my LLMD's advice about stopping MS meds. Not all MS meds are created equal.

DO expect to feel worse, but don't let that stop you. You likely have some bacteria to kill, and they will make you feel worse before feeling better. That's part of the process.

Get some Theralac (see website by same name). Take it religiously to replace lost gut flora. Stay ahead of the yeast-beast curve!! :-) Watch carbs.

Unlike with MS, with lyme you CAN get better. Don't believe otherwise!

Oh yeah -- before someone else mentions it, lose the "s" on lyme. [Big Grin]

Come often for support!! We're so glad you found us! "Joisey" has lotsa lyme -- I so wish neuro's would wise up, but at least patients have, if the doctors haven't! Welcome!

Michelle
 
Posted by narrowpath (Member # 15086) on :
 
Ditto for me. Diagnosed with MS. Had the bullseye. Sent myself to LLMD knowing full well that Lyme had caused my illness. Also Bartonella. Am fine now after 8 months of antibiotics (started with IV). Please write with any more specific questions. I wouldn't touch an MS drug if my life depended on it!

Allison
 
Posted by SForsgren (Member # 7686) on :
 
MS was suggested by healthcare practitioners and I was sent to neurologists to confirm. They were unable to confirm the MS diagnosis though many of my symptoms matched. Eight years later, I was diagnosed with Lyme disease. I believe that most people with MS have Lyme, HHV-6, or both. Fortunately, these can all be addressed, though not quickly or easily. At least there is hope.
 
Posted by Keebler (Member # 12673) on :
 
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In addition to some of the links above, you might find some good information in this current post.

MS is a frequent question here. Of all the articles I've seen, the one by Goldings may help the most. It is through ILADS www.ilads.org in their articles and presentations - and on one of the posts here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=065647

Oh, as you read on, you may notice that lyme has no "s" - and regarding other TBI (tick-borne infections) you may find helpful articles in the NEWBIE links.

Sorry you are here, but Good luck to you. I hope you find what you need to feel on the right course.

-
 
Posted by njlymemom (Member # 15088) on :
 
your not alone Sammy

I have been ill since I was a child (now in my upper 40's)

I was also misdiagnosed with MS (at age 31)

it took 7 years to get that diagnosis....to bad it was wrong

lived with the misdiagnosis for over 12 years....even took Copaxone for 8 of those years

I was dying and all my neuro was offering me was pain pills

it is a long, long story how I finally got help...

when I started abx I began to feel better

after 6 mos of abx I made the decision to stop my copaxone

and told the neuro where to go
 
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