Hello- I am new to the group and have been trying desperately to find the thread in the stickies that lists the supplement/vitamin protocol that's recommended by many(as I've gathered from reading posts). I have found a tremendous amount on B12- which was stickie #2, but I cant seem to find the list. I'm sorry to seem so lost but..I am!!

I was diagnosed with lyme disease back in 1999 but think I've probably had it for a lot longer. In what I thought was the beginning, I would get terrible burning skin, mainly in my arms and legs. That fell away but I then had tingly hands and feet off and on for a year or so. Then all of my neuropathy type symptoms seemed to be gone(still had a TON of other things wrong). Then several years ago, I started having terrible achey/throbbing feet that brought me to tears. I was also getting some tingling in my legs and feet. I went and saw a top NYC neuro who did a biopsy and diagnosed me with small fiber neuropathy. I was on IVIG for 3 mos-which was hell- and though my symptoms didnt really improve much-my repeat biopsy showed major improvement(still don't get that one)!

Fast forward 4 years and in the spring of 2009 I woke up with such terrible burning feet. I still have this incredible pain 22 months later and it's been traveling up my legs,spine, random hot spots, etc. I have always had burning in my thighs and stomach at night but was always told it was a lyme symptom NOT neuropathy so I never thought it was the same-and honestly-am still not sure? Anyway, my feet have been burning ever since and I'm terrified at what seems to be a progression up my legs. I am on 3600 mg's of neurontin as of 12 days ago but have been on increasing neurontin for almost 2 years. The med will last about 60-90 days and then I have to increase again. This time around, it doesnt seem to be kicking in and giving me complete relief like it has in the past.

Because of this horrific symptom, I went on the attack against the lyme again. I have been aggressively treating it for almost two years and feel like things with the SFN are only getting worse as I mentioned.

I've been sick with lyme since I was 26 years old. Now, 12 years into the lyme, I have this second disease which is coming across as if it's even more harmful then the lyme(which has stolen a LOT of years from me). I'm in a state of panic and paralysis. The questions that race through my mind are terrifying...AND no DR will give me the answers!!!

I am on a lot of supplements and would be incredibly grateful if someone could point me to the list on this site for comparison...I thank you SO much for any time you could spare!!

Sincerely,
Katie