Deanna Protocol

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August2

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PALS
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TX
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Houston
Has anyone tried the Deanna Protocol lately?

If so, how is it going?

Would you recommend it?
 
Well worth searching here for past conversations - it hasn't been really discussed for a while. Some of our members do take some of the supplements, but I personally don't think it is worth the money. Others will chime in I'm sure :)
 
Not impressed with DP.
 
I was never impressed enough to try it. Nor did my neuro who is liberal with supplement recommendations ever bring it up.

Please do read back threads if you wish but there is one thread that does not tell the whole tale. We had a member who tried it and felt it helped. He kindly posted updates until after a long hiatus he discovered the thread closed. Apparently he did not realize that threads here close automatically due to lack of activity. He took umbrage a left.

I followed him in another forum and apparently he then decided that his ALS was Lyme and undertook that treatment ( with or without Deanna protocol not sure). He unfortunately died 18 months after the ALS diagnosis so it does not seem he benefited greatly from Deanna if at all
 
There are lots of protocols out there. Several are posted on ALSTDI forum. I've always taken the holistic approach in that I need to make sure my general health is taken care of and non-ALS health issues addressed. For that reason I got a complete vitamin and mineral test. My local neurologist suggested it early on. I was able to correct my iron deficiency, get my free copper under control by taking zinc taurate, bring my T3 back to normal with iodine and correct a B1 deficiency.

My only suggestion is before starting any protocol, find out what your body needs, then add what you think might help slow progression or help your general health or any other health issues you have.

I take about 20 supplements daily. Most target inflammation, keep my liver healthy, add antioxidants, or are good for general health. I don't post my protocol because it is highly individualized but it does include B-12, Tudca, Vitamin E, Vitamin D3, krill oil, fish oil, CBD, and medical cannabis THC. It is expensive but I think it is helping. I'm thinking of adding melatonin in a very small dose because I only sleep 7 hours a night with no naps during the day. Before ALS I slept 8 hours a night and I think my body will benefit from a bit more sleep.
 
I have read up on DP and was not impressed with what I have heard.
 
DH tried it. Nada. Don't waste your money.
 
IMO, it (or at least the 2013 version) was pretty unbalanced regarding the different aspects of the disease. Especially I found no solid justification for the massive intake of AKG.
 
After I was first diagnosed I spoke to a friend of a friend who said her husband had spent a lot of money on it and it seemed to make no difference whatsoever. She was very negative about it. I still believe that alternative medicine is called that because if it worked it would be called medicine.
 
After I was first diagnosed I spoke to a friend of a friend who said her husband had spent a lot of money on it and it seemed to make no difference whatsoever. She was very negative about it. I still believe that alternative medicine is called that because if it worked it would be called medicine.

Alternative to what? Untested and experimental certainly but the basis is in mainstream medicine.
 
"...if it worked it would be called medicine."

THAT's perfect! Sums it up really well. Thanks, Ted. :)
 
If it worked it would be accredited by/and ALSA would hail it as a "Break Through".
 
In the beginning I was seriously entertaining the idea of DP. After much thought I decided that I would rather die than be chained to the regimen of DP.
 
I was curious because when I went to my last ALS clinic, the speech therapist recommended I start the Deanna Protocol because another patient she saw at the clinic felt it was helping him.
 
There are certain things - such as inflammation, oxidative stress, NAD depletion etc. - targeting of which is probably beneficial. DP addresses some of those but IMO in a rather uneven way.
 
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