Hi--As I posted before, it seems that I have chronic lyme disease, and that this is the explanation not only for my "idiopathic" peripheral neuropathy, but for cerebellar findings, chronic infections, and cognitive fogginess/lack of focus.
I want to share with you folks that there is a big lyme community out there who started off with diagnosis like idiopathic peripheral neuropathy, MS, ALS, and sero-negative arthritis. Over 20-30% of people with lyme have negative Western Blot tests, and more when the test is done by a general lab. There is only one lab widely trusted by the doctors patients call LLMDs (Lyme literate MDs), and that is IGeneX. You can have blood drawn and sent there--they are very specific about when it should be drawn, and how mailed, but a local lab here in NYC sent it to them.
I have had 5 negative tests by Quest to date, and one positive by IGeneX. But there are other tests, done by labcorp, which can support a diagnosis of chronic lyme, and a LLMD will send blood to Labcorp after IGeneX. All of my secondary tests are positive. My complement levels as well as specific white blood cells called CD57 are all consistent with lyme. No one did these tests before.
I want to recommend that anybody on this board with idiopathic pn be sure they are tested for lyme by a tick-specialty lab. I think a consultation with a LLMD would be useful. I do not think they label EVERYONE as having lyme, but that they do know how to use history and tests intelligently.
I can't believe how many people I am now learning about who suffered for years with neurological symptoms that turned out to be lyme.
I'm still not through the process of work-up and treatment plan. I've seen an LLMD in NY after my ENT sent my blood out. The LLMD ordered the labcorp tests, which are all positive except for two which are still cooking. I will be seeing a guy who treats only lyme, but is three hours away, just to get his input, and then, hopefully, one more infectious disease doc in NY. I'm hoping by the end of January there will be a plan, since cns lyme is considered pretty serious.
Recommended reading:
http://www.truthaboutlymedisease.com/
www.ilads.org for information on all aspects of this
lymenet.org: has a patient forum and has information posted.
Under the skin a You Tube documentary on lyme.
Please do check this out and make it part of your evaluation---just make sure the lab is a tick-only lab.
It's incredibly controversial, as the infectious disease society of america has decided that there is no such thing as chronic lyme disease, and has basically barred doctors who believe there is such a puppy from presenting their results at meetings. It's pretty weird.
Anyway, here is a link to information on the four labs which the lyme community thinks are the best, and how to get blood to them, as well as a bit on what the tests mean.
http://www.truthaboutlymedisease.com/
Hope this helps someone out there. It's sure taken me a long time to learn about this, and I seem to be the only one shocked. My neurologist is thrilled; my sinus and ENT docs say I'm a typical late lyme patient; my new internist is holding off a decision until reviewing more info, which is very good.
As unhappy as I am at the idea that I have lyme; I'm also happy to know I have something for which a treatment exists, and that there's a reason for what I've always experienced--great improvements come with antibiotics.
The best news of all would be the decision that the last course of antibiotics has stabilized things....one can hope.