Deanne Protocol

[Englishman]

Hi all

Just wondering is there anyone who is actively doing this and what has your experience been like since starting?

Also hoping the GM604 gets approved asap as it looks very promising!

 

[Mtzu]

Sorry I don't have the answer you're looking for but want to thank you for posting this. I have not heard of it and after seeing your post did a little reading about it. It sounds like it has some promise.

 

[Music67]

I used it for a couple of months but saw no changes. Perhaps it takes months for this to happen. I'm not (so far) dealing with bulbar issues which I thought people who had the most success with it did/do have so maybe I'm not an ideal candidate to try this. Good luck if you do try it.

I, too, am hoping that the FDA will soon start trials on this promising procedure! I think Genervon just finished their 2A trials. Perhaps there will be a 3rd trial within the company. However, I had read somewhere that only a handful of people were used in the current testing which may not impress the FDA. Hope I'm wrong. . .

 

[GregK]

There are already nine (9) strings on the Deanna Protocol; do an advanced search, use Deanna as the keyword and select Search Titles Only.

It is also discussed on ALS TDI and Patients Like Me.

From what I've seen: expensive and few success stories.

 

[affected]

I do agree, search here as there are many threads with lots of views.

I hate to sound like a debbie downer. I do think every PALS should try any supplements and regimes they think they agree with and can afford, but it's so hard to say how much it helps as you don't know what progression rate you would have had without it because everyone is so different.

Makes it very hard to measure when none of these protocols show marked results of halting the disease in large numbers. So if one person says they did this or that and have been progressing slowly for x years, there are others who do none of these things and progress slowly for the same number of years.

That's why I think any PALS should try any regimes (apart from the obvious rip off ones designed to just make someone else rich), and if they progress slowly, keep doing what they are doing as it is not hurting anything!

I think that it is at least as important to be aware of things that will hasten progression and be sure to avoid those things. Such as:
* avoiding falls and injury
* conserving energy
* avoiding people with colds and flu
* taking in a high calorie diet and avoiding losing weight

BTW search on Deanna Protocol not Deanne

 

[MaxEidswick]

see als untangled as well, but Kat's advise is best:
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I think that it is at least as important to be aware of things that will hasten progression and be sure to avoid those things. Such as:
* avoiding falls and injury
* conserving energy
* avoiding people with colds and flu
* taking in a high calorie diet and avoiding losing weight
------

plus take vitamins!