Cherise,
That response doesn't surprise me. After doing the rule out blood work, Mayo told me to stop taking Vitamin B-12 because my levels were too high. My levels were just above the high range of normal but when I had it tested at spectra cell labs, my level was on the lower end of normal. They do a different type of blood testing. I understand the very small risk involved with isolating one B Vitamin component and taking high doses of it but, in my opinion, the benefit outweighs the risk. I test all my Vitamins/minerals at least once a year to make sure they are balanced.
I would have a different reaction if our "expert" doctors really understood what causes, what cures, and what treatments offer help. They only do what they have been trained to do and that is measure progression, prescribe BiPap, wheelchairs, PT, OT, and all the other things to make our quality of life better. I would say the exception to this is Dr. Bedlack who has studied ALS reversals and delves into some alternate therapies that could help. I understand the purpose of structured clinical trials and totally support them but I have talked with Richard from the Charity and I honestly don't believe RCH4 is a scam or snake oil. I believe it is a protein-blocking peptide and, for some patients, it appears to work. I also believe that the Charity got its money from members of religious congregations who believed in the treatment and wanted to help.
Years ago, if someone told me they could cure c-diff with fecal transplants or cannabis worked ten times better than any sleeping pill, I'd be skeptical. It's good there is a healthy amount of skepticism but when PALS are getting RCH4 at no cost and it's helping, I don't see a scam. If it is a scam, the people giving the money were the people scammed. However, I've not seen one of the benefactors post on boards and, if I were scammed, I would be posting on every forum available.
Differences of opinion, posted in a civil manner, cannot hurt. I'm glad this thread is still active and I look forward to progress reports from our PALS and/or their caregivers on RCH4.