Hi All,

It's been a while since I've posted here, as my problems have seen incredibly complicated, and extended beyond pn. chronic sinus problems, back issues, too many things.

Well, I saw Dr Latov a couple of months ago, and he said my cerebellum was affected and ordered genetic tests for ataxia. These were mostly negative. Turns out that athenadiagnostics will pick up mutations, ( and I have one), but not know the significance of them. Dr L decided I have idiopathic neuropathy, with cerebellar involvement.

I saw my regular neuro, and he seemed to agree that there's cerebellar stuff, though very very mild.

I have new integrative ENT, and he wanted my infectious labs repeated, at a California lab, Igenics.

Then, this week I've gotten the feeling of a razor in my throat when I swallow, which I had in June and last February or March--each time with lots of secretions. Each time treated with antibiotics, and I gradually got better---though it took THREE MONTHS.

So, I saw the ENT while I had the razor in my throat feeling, and he says I have aphthous ulcers over my larynx, but there's not much to do for it....

because the Lyme Tests came back positive, according to CDC criteria.

He thinks this one diagnosis explains just about everything I've been experiencing, and tomorrow I see a Lyme specialist.

I don't know anything about Lyme, and right now I feel too sick to learn, but as I get better I'll be reading more.

It's late lyme, as I've had symptoms almost 20 years, and it's in the cns, which explains the cerebelar stuff.

That is, if the lab is right and I do have it. The test that was positive was the IgM Western Blot.

More to learn....after 15 years of idiopathic.

Having long term Lyme would possibility of the tremendous variety of symptoms you've had--perhaps even contributing to your spinal weakness--but as I'm sure you've gathered, Lyme is a very slippery beast to get a hold of. And, there a lot of controvery about just what serologically constitutes a diagnosis (and what may represent a co-infection--apparently, a lot of other sphirocete infections can be transmitted simulteneously with Lyme, and this makes serological testing even more difficult).

Some, of course, have therefore taken the viewpoint that Lyme is a clinical diagnosis more than a test-driven one:

http://www.mentalhealthandillness.com/tnaold.html

Are you going to pursue things further up at the Columbia reserch center?

http://www.columbia-lyme.org/index.html

Glenntaj--I had serum evidence of Lyme--meeting the CDC criteria, which is apparently the strictest. And it's pretty clear I have CNS involvement, if this is true. Still, no idea what is involved in further testing at this time, and no idea about treatment--IV because of cns stuff, or oral. I do know that for the past 15 years of illness, I've always felt best when on antibiotics, including the neuropathy. It's just that whenever I go off them, I'm ill again. Leo Galland is the mavin I'm seeing, and Igenex IgM test was the postive test.

I too have a positive Lyme titer from Igenex. Igenex has been through some controversy. Here in the Midwest, a lab result from Igenex is tossed out. Interestingly, I do have the initial diagnosis of Lyme with an EM rash and tick bite and rising titer done by state lab of hygiene in my records. Antibiotics aborted the rising titer. My Igenex lab results are still ignored. They were positive in 2000. I contracted Lyme in 1994. I went thru additional oral treatment in 2000, but by then, I already had neuropathy but didn't know it.

I have always brought up the Lyme and always been blown off.

They did do CSF fluid PCR and found nothing at this point but it is 15 years now.

I don't know what to tell you other than, I am sorry that you are testing positive for Lyme. It is darn hard to get treatment, and they won't treat old cases here in the midwest. Perhaps you have good docs and will be able to get treatment....it kind of depends on how old your case is.

I would try to get IVIG....mine has helped greatly with numbness.

Good luck to you.

--not all physicians/facilities find the Igenex tests valid, even when their results match CDC critieria, and not all sources agree on what should be the CDC criteria.

Much of the controversy stems from which of the "bands" that show in the test are definitely the result of the Lyme organism and which may also be associated with other tick-borne organisms--and whether these bands' presence/absence may change depending on the timing/progression of the infection . . .

There's been a lot written on this, but these are among the most comprehensive summaries:

http://www.canlyme.com/flawedtest.html

http://www.mdlab.com/pdf/lyme_disease_testing.pdf

http://www.fda.gov/medbull/summer99/Lyme.html

You have been on a very loooonnngg search for the cause of your neuropathy and have helped so many along the way with what you have learned... Only to.. well....DURN IT?!?!?!
I live in a very active Lymes' area and know many good people who have it, might have it and don't have it but should? [I'm one who should've tested + but didn't, don't know why]
It is a very sneaky disease and harder to diagnose than even many neuropathies because you can 'test' positive one day, yet negative another.
From all I've read up on it tho, it's similar to PN in the long term treatments.... 'PATCH PATCH PATCH', is the best phrase I can up with. IF caught early on, some treatments can help, but afterwards...patch away. Even caught early there is always damage, it seems.
It's amazing how neuropathy is a symptom of soo many other neurological conditions... Relax a bit now that you KNOW what's going on and then go from there?
's - j