it is so hard to say what slows progression...rilutek...dex.....dancing naked under a waning quarter moon. i'm on rilutek cause insurence pays, the dex trial and take coconut oil cause i found enough research citing benifits. the deanna protocol is hard to get info on. if they are trying to help without gain why isn't the whole thing on the web page?
After the initial story appeared on The 700 Club last week, I scoured the Internet for more information. Their website is called winning the fight.com. I copied the research PDF and sent it to a trusted friend who is a pharmacy student. She said there are over 140 scholarly articles dealing with nutrition and supplements. I also sent it to the ALS nurse at my clinic. Here is her response:
I do not see any actual research papers on this “Deanna protocol” or scientific studies. If this was truth it would be on the actual news not the 700 club and someone would have won the biggest award there is for stopping the progression of ALS. This kind of diet can cause horrible side effects that can cause your progression to rapidly increase and cause hospitalization. Also, note the sizeable disclaimer…. So in short, don’t believe everything you read or see on TV. Only look into trusted websites.
I have the list of stuff. It consists if one thing that is injected. Joel did the injections years ago, this is nothing new, just a new name. If it really worked, it would be presc ribed by all docs. Do a search of glutathion. It as been discussed on here sinc 2006.
I've been emailing the doctor and messaging "Deanna" on FB. I've got most of the supplements but haven't actually started yet. I certainly don't expect a miracle but at the same time wonder, Why not? My progression is pretty fast and if there's a chance it could slow it then, well.... I'm on Rilutek and that's been "working" according to the docs. At least has dramatically slowed the fascis, I mean BIG time. I don't know, still torn on this protocol.....
been doing herbs, vitimines, supplements, homopathic medicine, tea since diagnosed but i test every 60 days to see what or if i need something. now there is excitment about taking 40-60 pills and this is after i was called cruel for even suggesting it may slow progression