LymeNet Flash: Anyone told they have MS

This is topic Anyone told they have MS in forum Medical Questions at LymeNet Flash.

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Posted by valymemom (Member # 7076) on :

I appreciate having a place to go to post questions. Thank you for commenting.

A good friend knows a young mother who was diagnosed with MS (came on suddenly.)

Was anyone told they have MS? And how do you get a neurologist to test for lyme?

I know my son saw four neurologists, one at Hopkins pain clinic, and none of them even mentioned lyme and its coinfections.

Sara......Boy, I'd love for my son to communicate with other young people coping with lyme. He's a great guy (never depressed)....but not one - yet - to communicate about his emotions or interior life - somehow he finds a way to handle the pain and fatigue. (Lots of rest) While being treated he is taking two classes at a nearby college.

Posted by lymie tony z (Member # 5130) on :

Yes among other things like als,cfs,fm....it's common to be misdiagnosed with ms in lyme misdiagnosis....

I would suggest your friend get with a llmd..........zman

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Posted by Aniek (Member # 5374) on :

My LLMD told me she has treated 2 people diagnosed with MS who actually had Lyme. She is in Northern VA, if you want me to email you her info.

I was about ready to send a friend to her, when it was discovered her MS symptoms were actually a side effect from a medicine she was on.

Posted by liz28 on :

If you can get to New York, the Weill Cornell hospital is associated with highly reputable neurologists who work with Lyme patients. I recently saw someone--with positive Lyme diagnosis in hand--and he wrote an official opinion that I did not have MS, ALS, or any neuropathy.

Posted by valymemom (Member # 7076) on :

Aniek,

Since we are in the same area that would be great. I am: [email protected]

I am amazed, though, at the number of people who want to believe their ducks and think I am looking for lyme everywhere/in everyone's illness.

There is also a neighbor whose 6th grade son has been having unexplained daily headaches all year......and now severe depression and talk of suicide......and she had a lyme test (finally) that was negative. She won't go outside her medical network to see anyone else.

We are in a tick invested suburb!

Posted by hodologica (Member # 6408) on :

valymemom,

I know what ya mean, I see lyme everywhere - at least as a possibilty. Those who interpret the epidemic most "generously" consider it likely that borrelia could figure in a huge chunk of chronic illnesses in the US, like 1/3 to 1/2. THat may be a little "overexuberant." I dont know quite what to think; its hard to be sure.

Since being sucked into the underworld last year I've been studying avidly at the NIH library over in Bethesda trying to figure this disease out, and have looked into MS a little in the course of my investigation. One interesting article is a study of MS by George Steiner, 1952, where he found a small number spirochetes, and larger numbers of bodies with various shapes ranging from near-spirochetal to granular, which took the same silver stain. Certain endogenous (body-derived) structures such as something called a Pick body can also take a silver stain, so there with this stain there is some possibility for confusion, but it seems fairly likely that he photographed an MS spirochete with variant forms. Morphologically he judged it more similar to the genus Borrelia than Treponema (syphilis). Alas, I cannot size up his pictures very well because most of them I have access to only from microfilm.

The third edition of Lida Mattman's book gives MANY other refs on findings of spirochetes in MS - like, a dozen - from groups in several countries. Alas, I think most of them are dated, and predate the development of transmission electron microscopy. Mattman's discussion touches on experimental transmission to animals, and serological (antibody-related) work - and seems to suggest that her working opinion is that some MS is lyme and some is due to a separate spirochetal bacteria.

My friend Paul knows something about general disease findings in MS (like MRI charecteristics, etc), which I dont. He thinks it has a pretty well-defined separate symptom complex.

Its *quite* possible that MS is a spirochetal disease. I hear there is some work suggesting chlamydia but I have not examined it.

There have also been some high-quality anecdotal reports of MS remission obtained by long-term abx recently.

Posted by EZ-E (Member # 6436) on :

Yeah, I was diagnosed with MS from brain MRIs. Then I got the igenex WB, it says equivocal. I'm believing I have Lyme.

Posted by Lymetoo (Member # 743) on :

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ilads.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html

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oops!
Lymetutu

Posted by tickitout (Member # 6982) on :

Yes, I was also diagnosed with MS along with many other things. I even did many courses of Betaseron injections.

The best of luck to you.

Posted by Cheryl (Member # 75) on :

Lyme Disease Misdiagnosed as Multiple Sclerosis:
http://www.lymeinfo.net/multiplesclerosis.html

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Lyme Disease Information By Email:
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Posted by dsiebenh (Member # 5353) on :

I was dx with MS in 1999 after years of symptoms. Spent 5 years as an MS patient, including 3 years injectring Avonex, the worst possible thing to do since it supresses the immune system.

Last year tested positive on Igenix Western Blot tests for Lyme. I'm sure that's what I've had all along.

Good luck.