Dear Dr. Cohen:

I am writing to ask you to share an idea for patients with neuropathy. I have taken all the "d-drugs" the past several years, and developed neuropathy (rather early on) which ranged from annoying to mildly painful (luckily never severe). I tried Elavil and every vitamin supplement obtainable through our AIDS buyers club here in New York. Finally, I tried acetyl-carnitine. I take the prescription brand (Carnitor) 990 mg three times daily. However, you can get acetyl-carnitine through buyers clubs or health food stores, but it's expensive. My neuropathy almost never bothers me now. I suggested this to my close friend, also HIV-positive but has diabetes as well, and he has had the same success. My doctor said he tried this treatment for neuropathy, but the lower dosage he was using didn't seem to help. I've heard at conferences (I work in AIDS research) that preliminary results from a trial in England are showing good results. I hope this works for some people out there who are at their wit's end with burning, painful feet! Thanks--Scott

Thank you Scott for the good news.

Neuropathy has been one of the more difficult problems in part because there have been few options that have shown benefit. But the ones you mention have been on the short list of things worth studying - and until studies are done, your experiences are helpful as places to start.

We of course can't tell how often these meds will work for others... but in general these supplements are considered safe. Carnitine is actually a prescribable drug - used for rare forms of heart muscle damage - and there are few expected side effects in the doses you mentioned.

Perhaps one day there will be some organized data that can further define the role of this approach. Until then, thanks for the idea.

CC