Quote:
Originally Posted by Apollo
... many thanks to all for your insights!
Regarding Lyme, off the top of my head I would venture a guess that it constitutes the underlying cause of the majority of all "Idiopathic Small Fiber Neuropathy" reported on this forum.
Concerned readers should do the following:
1) First do the widely-available Lyme "ELISA" test in their doctors office. If it
is positive then they HAVE Lyme, as there are very few false positives.
Unfortunately, if it is negative, they may still likely have Lyme and its
accompanying co-infections, as the ELISA is just a coin-toss (50% accuracy).
2) If negative, they should next locate a "Lyme-Literate Physician" and have
the "Western Blot Test" done by "Igenex" Labs.
Here is their website:
http://www.igenex.com/Website/
The Western Blot will pick up another 20% of cases that were missed by the
ELISA test. However, it will still miss 30% of positive cases as it did with
me.
3) The game changer in Lyme testing became available only in 2012, and is the revolutionary blood culture test (the "gold standard") that also finally gave me a definative diognosis nearly eight years late (I was infected in 2004).
Here is the website again for "Advance Labs" in Philadelphia that does the test:
http://www.advanced-lab.com/
Warm regards,
David |
Hi David
Thanks for all the information you have provided. I suffer from Idopathic SFN. I had a "comprehensive" blood workup by Neurologists (5) and Rheumatologists (2). I have ALL of the symptoms of SFN except for numbness. I was diagnosed in August of 2012 by Skin Biopsy. I am otherwise fit and healthy. Still going on my tread mill. My symptoms started out-of-the -blue with burning under my feet and tingling in both calves. It has since progressed to my arms , hands, torso , and face. I mentioned bloodwork to the Doctors about autoimmune related neuropathies, and Lymes Disease. Each time they tell me all my bloodwork is normal and dismiss me as Idopathic. I take 300 mgs of Lyrica and its not helping . I get bad buzzing , pins & needles, burning all over. It has become widespread. Now I have developed bad tinnitus (ringing in my ears and head) Never had this before! Did you have any of these symptoms. Does this sound like anything familiar to you? Why did it take eight years for your diagnose? I dont remember ever getting bit by a tick at home or elsewhere. I Never had any symptoms or a bullseye rash. Did you know you were bitten by a tick. I wish I could find a cause for this horrible SFN. Should I ask my Neurologist to do futher testing. Everytime I ask they say my tests were "normal"
Thanks again ..
Marie in NY