June 11, 2012

join Phoenix Rising as we cover the June 13th, 14th CFSAC meeting live.

Phoenix Rising covers the CFSAC meeting on chronic fatigue syndrome live!


{ 2 comments… read them below or add one }

pat June 13, 2012 at 4:49 pm

I would like to know if anyone purchased GcMaf from europe with any problems and are they seeing any better? Anyone tried MAF 878 with good or bad results and how long have you been on it.


Bill Goodin,M.D. July 13, 2012 at 9:02 am

I was prescribed GcMAF by my treating physician for CFIDS/FMS after a measurement of my nagalase level, which was in the low elevated range. With provided ordering info, I ordered from Belgium. GcMAF is relatively inexpensive compared to shipping on dry ice from Belgium to the US. 4 vials of GcMAF + Shipping = $400. (1 vial of 100ng/ml, 1ml = $25) Shipping on dry ice was $200+ US.) Himmunitas in Belgium. JanDL @ehmb.be was my order contact person & she was great.No problems obtaining it from Dr. Kenny D’s lab. I was started on 20ng subcutaneous injection/ wk x2 weeks, then 30ng SQ x2 weeks. No changes. At 35ng the following wk. I developed increased fatigue. Due to influenza for 2 weeks, we did not proceed further until 1 month later. I was started at 5ng SQ weekly and developed increased fatigue ! Not knowing whether I was entering a “relapse” period or whether this was related to GcMAF, we have held GcMAF. I stayed in an extremely low energy period for two months, & I am just now regaining some energy. I’m reluctantly open to retrying the GcMAF in the future at a “right time” when I am doing much, much better. Responses to GcMAF are variable, individual,etc. There were other factors that could have caused my “relapse”. (I stopped several medications ~3 months prior to GcMAF trial and “seemed” ok w/o them. Retrospectively, they were making more of a positive difference than I thought !) Obviously, GcMAF has it’s place as a number of CFIDS people are benefiting from low dose 5-50ng SQ weekly in Belgium, New York, etc. It is worth a try if nagalase is elevated significantly.I hope this is helpful to you.


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