Reply To: Problems with IVIG
If you are a member of GBS–CIDP Foundation you should receive the Summer issue of The Communicator soon (I just received my copy today). It contains a very good article written by Dr Saperstein about how to use IVIG for CIDP. The article addresses some of the issues you are talking about here in this forum.
The GBS–CIDP Foundation has a chapter in Lake Oswego. It is staffed by Dr John F Schilke MD, phone 503 636 0166. He should be able to refer you to a doctor in your area for a second opinion.
OHSU looks like a good place to get help for CIDP. I tried several searches on their website to find CIDP or GBS specialists and got zip each try. I guess this means none of their doctors have listed the diseases as a sub-specialty or interest. I did learn they recently completed the following Clinical Trial at their Neuromuscular Disease Center; this might be worth your investigation:
IRB00005176 Lipoic acid for Chronic Inflammatory Demyelinating Polyneuropathy — a randomized, double-blind, placebo controlled pilot study. Managed by Dr. Jau-Shin Lou
The purpose of this pilot study is to examine if alpha lipoic acid (LA) is an effective treatment for chronic inflammatory demyelinating polyneuropathy (CIDP). Lipoic acid has anti-oxidant and anti-inflammatory properties. It is naturally present in the body and often used as a dietary supplement. For more information about the study, please contact Diana Dimitrova at 503 494-7269 or email@example.com.
Here is the official listing: http://clinicaltrials.gov/ct2/show/NCT00962429?term=CIDP&state1=NA%3AUS%3AOR&rank=1
Hope this info helps.