Comprehensive notes from 40 yr old male in NYC, dx 2001
January 16, 2017 at 12:10 pm
I was on this forum years ago but thought I would re-activate. Interested in trading notes on therapies/diet/trends/exercise etc. My story:
– CIDP, recurring but slow progression, since 2001
– 40 yrs old, male, living in Manhattan
– Diagnosed after a trip to Brazil. I got vaccinations but separately also got a very bad traveler’s bug on the trip (likely from water), perhaps Giardia. I progressed very quickly, from zero symptoms to having a hard time walking within 2 months time. Had nerve conduction studies and spinal tap to confirm dx.
– Currently receive 140 grams of IVIG over 2 days every month, over about 4 hours each session, max rate about 200. Was on prednisone for a short while but the side effects seem not worth it for me.
– I used to get raging headaches lasting about 30 hours, now they are mild and not incapacitating, read below. At first it was 3 days after first day of infusion. Later it was 5-7 days after first day of infusion. The main way for me to avoid is DRINK LITERS OF WATER. I will drink close to 5 liters of water in 4 hour session, but it does wonders. The rate also matters, I can go up to 160 without much trouble, 200 is pushing it but I can manage if I am doing the water thing.
– I used to take alpha lipoic acid, colostrum, fish oils, etc…can’t hurt but I didn’t see significant difference.
– Biggest factor affecting the progression is stress. Try to keep it down.
I’ll add more to this post later on exercise, etc. Very interested in diet discussions.
January 17, 2017 at 5:30 pm
Welcome back to the forum. You mention – ‘CIDP, recurring but slow progression, since 2001.’ Is the condition still progressing now? and, with that much IVIG? Might be time to try something else.
I am unaware of any diet that is particularly helpful. I also took alpha lipoic acid, ALA, and fish oil. My anecdotal (reports or observations of usually unscientific observers) observation is that the combination of all the things I was doing at that time helped alleviate the sensory symptoms I was having . No, I was not on IVIG then.
January 17, 2017 at 6:21 pm
Thanks jk. I actually am pretty steady, just have needed more frequent treatments over last 15 years. IVIG works great for me.
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