Nervous1, can you describe the diet recommended in Minding my Mitochondria? Do you think this has helped you?
Ron

Yes, I like Minding my Mitochondria also. You can find Dr. Wahl on You Tube and Facebook also.

Hey Electron,

Yes, I think it has helped me.
Basically I eat Gluten Free/Paleo diet.

N1

Some doctors are getting good results with autoimmune diseases by having patients eat a low fat, whole foods, plant-based diet. For example Dr. Joel Fuhrman, Dr. Caldwell Esselstyn, Dr. Neal Barnard, Dr. Dean Ornish. They all have books for such info. I highly recommend Fuhrman's Eat To Live. Don't expect your doctor to buy into this. I can't speak to your doctor's motives, but this is probably contrary to his education, doesn't make him, drug companies, or medical equipment manufacturers any money.
Ron

I just realized that I sort of repeated the ideas in my post earlier in this thread, sorry.
Ron

Hello 029anser,

I wanted to check in with you and see how you are doing after the IVIg infusions.
Are you still in remission?
What symptoms of neuropathy did you have prior to the infusions?
How long did it take for the neuropathy symptoms to respond?

Thanks,
N1

I seem to have SFN. I don't want it to be caused by auto-immune, but how do I know? My general doctor tested me for inflammatory markers and my neurologist saw everything my general doctor tested for and didn't recommend any other blood tests, just an evoked potential test if I wanted as optional.

I get water sensations all over my body and sometimes burning,stinging. It started two weeks after taking a bunch of antibiotics from a crazy doctor who said I had lyme disease who I got referred to because of my constant neck pain and other muscle pain. I now believe they are just normal trigger points that are hard to diagnose and treat.

About two weeks into the antibiotics I started getting snow flake sensations all over and told the doctor and he said it was just the antibiotics fighting the lyme infection. Eventually though he discontinued my Bactrim. I've looked up Bactrim and it says peripheral neuritis is a side effect. I was also taking Azithromycin, Minocylcin and Refampin.

I've recently also gotten eczema twice on my right elbow and never gotten that before, but that could be unrelated.

Everything else is normal. The strange thing is my progress with the neuropathy has been back and forth which made me fear an immune problem. It seems to heal for a year or so, but when I get upper respiratory infection the symptoms come back. I was also on a low carb diet twice so that may have hindered it. It has been three years about I think since I stopped the antibiotics. Healing seems to work in 6 month increments. I hope that the infection just inflames things and stresses my system. I'd hope that a good diet and the right supplements would let it heal in 3 years. That is a long time from now since it has already been 3 years.

I really don't want it to be auto-immune, but I've thought about that and asked the doctor. They can't tell me anything. The last three years have caused me a lot of anxiety because I don't know what is going on and what to do.

Do you think it was the Bactrim? How do I help it heal? How would I know if it is auto-immune? Please don't scare me. I don't want it to be auto-immune.

Hello applewine,

I already had an autoimmune issue with psoriasis and people who have one autoimmune issue are susceptible to others. My symptoms for SFN would come and go each year for the past 5 or 6 years but now seem to have decided to stay.
I had a punch biposy that the showed my SFN was caused by an autoimmune issue.
You really have to watch the doctors and what they prescribe you, sometimes what they prescribe can cause neuropathy.
I can't say whether you have an autoimmune issue or not, but if the symptoms for the neuropathy come and go, it is a possibility.
I would begin researching your symptoms and all the meds you take and keep a daily health log and discuss your findings with a good neurologist. If you don't feel like your current doctor is helping you, you may want to look for another.

N1

N1

will try to answer your questions

1. yes, knock on wood, still in remission 10 months now post last IVIg infusion

2. symptoms were 80-90% numbness from wrist to tips of ring and little fingers both hands as well as loss of fine motor skills with both hands...a branch of the ulnar nerve goes over to thumb to aid with pinch strength...so had very poor grip strength as well as poor pinch strength

3. had 4 day loading dose IVIg (50gm daily x 4 straight days)...then 50gm every 3 weeks thereafter...wasn't until after 2nd maintenance dose that I noticed any increase in strength...neuro keep me going to 6 months...showed improvement...and insurance approved an additional 6 months

of course, cidp madsam not the same as sfn...but IVIg definitely rebooted my immune system

thanks for thinking of me...hard for me to type...2 finger hunt and peck now..

still have residual deficits...numbness around 25%...loss of fine motor skills with hands...muscle atrophy....just hope to maintain what I have left...deficits most likely permanent...can't cross my fingers but have some function I can get by