I just wanted to chime here since the discussion seems to be relevant.

When I first started having problems, my GP immediately recommended a neurologist down closer to Baltimore. As it turns out, he's the head of neurology at one of the hospitals there, and there was a six month wait to see him. The hospital is not Johns Hopkins, but he has rights there. I tell you this just because he is very highly thought of around here, and was voted the top neurologist in a Best of Baltimore Top Docs issue.

When all the testing he did failed to turn up anything, he diagnosed SFN and recommended I go see another doctor down in suburban D.C. He said the cause of my neuropathy could be viral, specifically mentioning herpes zoster and Epstein-Barr, but it's not well understood. This doctor in Rockville who is a Pain Mgt/Alt Med kind of guy apparently has some kind of home cooked treatment for viral issues. His website specifically mentions treating Chronic Fatigue Syndrome.

Unfortunately he also takes no insurance and is appointment by cancellation only. It's $350 to walk in the door, and I understand any treatment he prescribes is expensive too. My neuro didn't fully understand what his treatment was, but said it somehow kick-starts your immune system to start fighting the virus as it did in the past.

I did some searching on the Internet looking for ANYONE who had success in dealing with neuropathy from this viral angle, and found nothing. I never followed up on his recommendation just because of all the logistics involved. I instead sought out an Integrated Med doctor who was closer to home. No results there.

Anyway, I'm just throwing this out there that a highly respected neurologist put the viral possibility out there. He was especially homed in on this because the strange neuro symptoms in my left leg started back in the 80s after a bout with mono. (It was maybe three years after mono, though, not immediately.)

I would eventually start taking lysine because, as Mrs D mentioned, its given to cats for herpes suppression, and my cat does indeed get it because it helps tremendously. No luck with me, though.

If it ever comes to pass that they discover the root cause of many cases of idiopathic SFN is activated herpes zoster or Epstein-Barr, I'm going to feel like a total idiot for having not listened to the neuro.

But Mrs D, if you've lasted this far into the message, I know they can test viral load of things like HIV and HepC. Can't they check viral load of HZ and EB? I know we all likely have antibodies to both, but can't they distinguish that from an active infection?