Happy Holidays and some advice from my experience

Hello Everyone and Happy Holidays!

I have been dealing with CIDP for over 2 years now, currently on IVig every 6 weeks and have been at that interval for the past year.

The things I can attribute to my treatment interval are diet and exercise. I have been on a sort of paleo diet for 14 months....down to 194lbs from 212 and am 6 ft 3 in. I try to get in the gym every day and if not I at least walk and work with 5 lb hand weights. If I miss a few days at the gym I can feel it, not sure if that is just mental or what but it keeps me going back...

Another thing I do is play Ping Pong as much as possible, I heard a Doc who suffers from Parkinson talking about it, he was 72? and Ping Pong was his therapy. I found 2 brew pubs that have tables and my girlfriend enjoys going so it really helps to get out and do something that helps me physically.

Going to the gym can be really monotonous so find something you enjoy that also helps you physically. The key is to start eating better and gradually increase the physical activity.

Good luck to everyone and hope you have improvement in the new year!


It is nice to be able to write that my son who has CIDP just returned yesterday from having taken part in Dr. Burt's stem cell therapy experiment. Hopefully it will mean no more CIDP. He is the 60th CIDPer to have taken part in the experiment. An end to IVIG and the hope to be able to return to a normal life makes this a fantastic Christmas present. Our family thanks God for him and his efforts, as well as the insurance companies who committed the resources to allow him to participate in the study (although financially it is to the benefit of the insurance companies to have their clients undergo this therapy).

My son has suffered from CIDP for 2 1/2 years and is 24.

Please be aware that Dr. Burt's therapy is experimental, so they are looking for specific kinds of patients. Here is the website devoted to his stem cell treatment: http://www.stemcellresearchfacts.org/.

RE: " paleo diet for 14 months...." yes I beleive this and understaning Phytic acid (reduction of the negative chelation) is very helpful.

Best to all -keep shairng -we are getting closer to errasing this ilness!