Here's the thing--people (some in good faith and some scammers) will offer and claim cures to the desperate. If you are newly diagnosed you think those of us that have been here a while are negative about alternative treatment and have just given up. that is not true!we are negative because we-or our pals--or our friends here--or someone in an outside support group has been there and done that and unfortunately nothing works. I hope and pray every day that a cure is found, and I hope it is something simple and silly.
My husband--after his diagnosis--went to Dr. Martz and did the Lyme treatment for a year. $20,000 later he was a hell of a lot weaker. then we spent about $2000 on piles of vitamins to cure Lyme. Then we spent several thousand more on a natural med. alternative doctor. weekly visits with intreveneous vitamins and flushing crap to "clean" him out, more piles of vitamins and homeopathic meds, hyperbaric chamber, then we spent several thousand more on some "doctor" who had himm breathing in rose oil and other essential oils. I dont want to forget the accupunture or body talk therapy or the special teas and drinks and diets or the best--the medical psychic who told us he would be the first person ever cure of ALS (sorry everybody else).
He has not given up--he has just made peace with ALS. he accepts what it is, and tries to live his life to the fullest. Nothing he did changed his progression. Some are just fast progressing and some are slow, I dontunderstand why but that is how it is.
If new members want to try all kinds of things and alternative meds that is fine, but don't lecture old member or think you are inventing the wheel and look down on us. we say it is false hope because we know.
