David-
At the end of the doctoryourself article, Karen leaves her email address. I emailed her once. She is a delightful, encouraging lady. You might consider contacting her yourself. I'd like to know how her grandson is doing now. It's been a year. I'll email her if you don't feel comfortable.
Thank you so much for your encouragement. Welcome aboard the train. Wherever two or more are gathered, God is there, and miracles happen.
I don't know why MDA dropped the nutritional studies done back in the 50's, unless it wasn't popular back then to "overdose" on vitamins. I think the whole vitamin craze didn't start until Adell Davis and Eric Mendel made it popular back in the seventies, plus the Vitamin C studies done by Linus Pauling and others at the time. By then, MDA had turned to the medical community.
I have bombarded my neurologists with questions. Actually, they have been very supportive of me and my endeavors. They gave me carte blanche to try any alternative I wanted to, and I was to report back to them with any successes. They readily admit they have no answers, although they are always excited about new clinical trials.
One of the things researchers for FSH are waiting on are mice models. That takes years. In the meantime, there is a new clinical trial for a myostatin inhibitor created by Wyeth. My neurologist is participating in the trial, but I don't qualify as a candidate due to distance from the medical center. Oh, gee, that's just too bad... LOL
There has been a lot more study done for Duchenne than for any other of the dystrophies. And their answer right now is still steroids. Here the national league baseball players are on the hot seat for illegal use of steroids and the players know good and well that they are history by age 50, yet the doctors give this stuff to these baby boys.... Bravo to you for just saying "no."
I'm reading a fabulous book right now called "Raw Power" by Steve Ardin. He's a bodybuilder that lives on raw food. He knows Gov. Arnold Swartzenecker and the top Mr. Universe guys. The guy is ripped. It's really written to men who want to bulk up, but I'm wondering what doing this would do for MD. I'll post about the book when I'm done. I'll tell you right now I think you and I are on the right path. :-D
Hey, thanks for posting. You made my day. I will be praying for your son and your family every day. There are NO incurable diseases.
Blessings,
-Donna