I have a lot of nerve issues including small and large fiber neuropathy. My Drs have put me on IVIG. Completed my first round two and a half weeks ago, start the next round a week from tomorrow. Doses four days in a row every four weeks. The weekend after the first round, my wife and I were just beginning to stir before getting up. Her foot brushed the back of my calf and it tickled. It took a minute or two before I realized that it TICKLED; I mean I had not felt that sensation below my knees in five years.
Beyond that my nerve pain goes through short periods of seeming better, and then considerably worse. Also, I guess I have been one of the lucky ones because I had minimal joint pain; not anymore, pure agony at times. My Lyme Doc's are thrilled at such strong reactions after only one round of IVIG. Hopeful and somewhat fearful of what may come about next week.
I made a previous post on what dx my LLMD used to get this approved by my insurance. I hope this helps,
My name is Michael and I have read with great interest your situation regarding your Lyme disease and your steps in trying to get better. I am very heartened by the fact that you are feeling better with IVIG and I truly hope your progress continues.
Reading your diagnosis was like reading my diagnosis. I recently had a nerve biopsy that resulted in a diagnosis of SFN. Based on my symptoms, my primary care doctor concluded that I had non length dependent SFN. Additionally, my blood tests came back showing high antiganlioside antibodies. Therefore, my doctor concluded that I had an autoimmune disorder.
Like others suffering from SFN, I have tried a number of medicines to decrease the all over body pain. I have been put on Neurontin, Lyrica, SSRIs, Tricyclics and pain medication all with no success. I have also gone the dietary route with little success. I have discussed IVIG with my PCP but he is not really familiar with this treatment and doesn't know a neurologist to recommend. (As a result of a lot of research, I was the one who requested a nerve biopsy and the blood tests. To his credit he has been very receptive and has tried to help me the best he can.)
I'm at a point now where I would really like to see a knowledgeable neurologist who has the understanding to properly prescribe IVIG. It seems that you have found such a doctor. If you would be willing to provide the name of your doctor I would be very appreciative.
Thank you in advance and continued success.