Glad to have found this community, and I hope you can offer some guidance.

I'm sure many of you went through many diseases, syndromes, and who knows what else, before finally being dx'd with Lyme - and I don't think I could actually come up with how many Dx's I've received since I first got sick in 2000.

The most recent diagnosis for me was MS, and I have been struggling with the long-term implications. Just today, I saw another physician who feels strongly that I may actually have lyme, and not MS, given my clinical presentation.

(To give you a brief idea, I recently started experiencing neurological defecits, mostly balance impairment and peripheral neuropathy, after years of treatment for fibromyalgia, CFS, and a myriad of other things).

What I am searching for is a long-term prognosis, basically, for those who have significant neurological impairment (ie, who have actually tested positive for demylenation). Are there studies out there on PubMed/Medline?

Don't know where you are living, but, I'd suggest that you post over in Seeking a Doctor forum and try and get to a Lyme Literate Medical Doctor, an LLMD.

Many posters here were dx with MS before learning that their symptoms were Lyme Disease (LD) all along. You may want to do a search here through previous posts on this subject. Here's how:

http://flash.lymenet.org/ubb/Forum5/HTML/000464.html

Also, Tincup has put together a great post just for you at:

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

You will want to definitely "bookmark" the above link for there is so much good and pertinant information in that link, that you'll want to return to time and time again.

While I'm sure that there are studies on PubMed, this place, LymeNet, has probably all of them posted here with regards to Lyme Disease.

You can take a look-see at the menu on the left of this page and check out the On-Line Library and Medical Abstracts links there. Checking there always results in good information, as well.

As for long-term prognosis, there are many varibles to consider...how long have you had LD?...Is the treatment aggressive enough? Seeing the "right" doctor, an LLMD? And, plenty of other things that would influence the answer to that questio.

We are not doctors here, not do we pretend to be, but, we can only post that of our experiences and, sometimes that of other posters when we pull up their information on a post to the front.

Best to you and hope you find some sollace soon.

Rosemary

I am curious as to the exact wording of your brain MRI reports.

My husband (diagnosed with Lyme disease and other coinfections) has several white matter hyperintensities on his MRI's. This is not that unusual in Lyme disease -- but generally the "bright white spots" or lesions are in different areas of the brain and have different appearances in MS and Lyme.

There are other things which can cause these spots also -- mold or migraines or lots of gastrointestinal problems (per neurologist and former neurosurgeon Dr. David Perlmutter as referenced in his book Brain Recovery.com). I believe that CFS patients also sometimes have these spots.

More info please on how you were diagnosed with MS.

My husband also has antibodies to myelin which show up in his blood -- but no oligoclonal bands in his spinal fluid.

There is growing evidense that lyme and MS may be the same thing. Or at least some MS has a bacterial trigger.

OK, the problem is MS and lyme have been treatd very differently. The steriods given for MS can be very harmful if you do indeed have lyme.

Please see an LLMD and postpone any steriods for MS until you have had a second opinion.

There is good research at

quote:

---

Originally posted by suvvyb:
Hello All,

Glad to have found this community, and I hope you can offer some guidance.

I'm sure many of you went through many diseases, syndromes, and who knows what else, before finally being dx'd with Lyme - and I don't think I could actually come up with how many Dx's I've received since I first got sick in 2000.

The most recent diagnosis for me was MS, and I have been struggling with the long-term implications. Just today, I saw another physician who feels strongly that I may actually have lyme, and not MS, given my clinical presentation.

(To give you a brief idea, I recently started experiencing neurological defecits, mostly balance impairment and peripheral neuropathy, after years of treatment for fibromyalgia, CFS, and a myriad of other things).

What I am searching for is a long-term prognosis, basically, for those who have significant neurological impairment (ie, who have actually tested positive for demylenation). Are there studies out there on PubMed/Medline?

TIA,
suvvy

---

I'll tell you a bit more about my situation, which will hopefully shed some light on to why I'm feeling a bit stuck right now.

My neuro, an MS specialist, does not feel my test results are consistent enough with "true MS" to warrant the diagnosis. Basically everything has come back negative except myelin basic protein, which from what I understand, is only present in spinal fluid during periods of active demyelination (I actually read a study that this is the protein that literally keeps the myelin "zipped" onto the neurons").

The working theory is that this is "early onset MS". I am 25.

I initially fell ill inexplicably at 20, and was diagnosed with fibromyalgia and CFS at 22. There have been more diagnoses thrown in than I can even keep track of anymore - Epstein-barr, hypoglycemia, generalized auto-immune disorder...not to mention problems with GI, thyroid, liver, kidney, adrenals...

I had not experienced any neurological symptoms however until about 6 months ago, and they have progressed hard and fast.

I fortunately saw my primary care this weekend, who is a naturopath. She was horrified at my decline, and immediately recognized it as lyme.

She wants to have a western blot done at the lab in california, and irregardless of the results, wants me to see a LLMD, and consider treatment immediately.

She sent me home with stacks and stacks of reading (much of it similar to what is on this site).

What I guess I am struggling with is what kind of "dragon" I am facing in a life-long sense. I had just begun the process of accepting an MS diagnosis, and I feel like I have been sent into a backspin.