Hi,

How can I best heal my small fiber neuropathy?

I believe it was caused by a reaction to Bactrim (peripheral neuritis is listed as a side effect) as part of a "lyme disease" treatment which was totally nonsense from a bad doctor. Long story, but I had myalgia for years and a trigger point message therapist I just found suggested a doctor to me to make sure it wasn't something else and I got down this lyme disease path when he tested me with bogus type test and said I had it. I eventually decided it was wrong, but had already been taking Bactrim, Azithromycin, Refampin and Minocyclin for maybe 5 months. The Bactrim was cut off after a month or two I think after the doctor eventually decided that.

I started to feel the weird sensations about two weeks into the antibiotics as feeling snow flakes all over my body and I told the doctor and he said that was just it fighting the lyme infection and the doctor wanted me to take it long term. I now know that was nonsense.

I began to experience water sensations all over and eventually burning and stinging/itching spots all over my body. These can be random or provoked by pressure such as walking causes water sensations in my feet. I experience similar sensations all over.

I think it has been three years and I have had an unusual progress and relapse. Even after discontinuing the Bactrim three years ago and other antibiotics after several months the symptoms eventually progressed to a constant burning and slight numbness in the feet. Strangely this only lasted for about 3 weeks and it went away and has never come back ! I eventually went to Hopkins and got a small fiber test and it was negative. The doctor there said that something like this could be immune mediated.

After about 18 months more the symptoms left my upper body and were mostly in my feet and I think by this time they may have been gone and I forgot about them, but didn't write down when they went away. I think they did.

Then, suddenly when I had an upper respiratory infection that was very strong and lasted about three weeks full strength I started to experience the sensations again in the arms and all over very strongly!

They were back at full strength! I was on a ketogenic diet at the time too. After about 6 months after that the symptoms started to calm down some and were mostly in my feet again but not yet gone, but I had another upper respiratory infection not as bad as the first and the symptoms sprang up again! They aren't quite as bad as last time so far, but definitely more active than before the infection.

I may have hindered my progress with a diet which was very low carbohydrate, so I was probably missing certain nutrition and b-vitamins, which I didn't realize. I was doing a real literal ketogenic diet where you just eat butter, olive oil and fatty meat with very little plants. The book said to take a vitamin supplement, but I didn't see that part.

I've become very stressed over the last 3 years because the doctors can't tell me for sure what it is or what to do and my progress has gone back and forth. I stopped the diet after the first upper respiratory infection, but after the second the symptoms did flare up.

I've been taking b-complex and a multivitamin for 6 months now and been off the ketogenic diet for 6 months too. I'm also considering taking some Clary sage seed oil omega 3. It is the ALA type, not the fish oil type (EPA and DHA). Not sure what is better in this case. Normally I'd go for the ALA and let the body make the right amount of EPA and DHA in a healthy person.

My neurologist hasn't suggested anything other than keep taking the b-complex and multi-vitamin. He said he thought it might be caused by metabolic, but at a follow up seemed to suggest it could be related to my trigger points and try physical therapy.

How do I heal and do you think it was the Bactrim?

Thanks!