Deanna Protocol for ALS?

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Tx Daddy's Girl

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Anyone heard of this? My dads neuro told us to start it because he's had ALS patients who's symptoms have reversed. It's basically a bunch of supplements that a doctor used to treat his daughter.
 

dbltree

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Anyone heard of this? My dads neuro told us to start it because he's had ALS patients who's symptoms have reversed. It's basically a bunch of supplements that a doctor used to treat his daughter.
I've been on it for nearly 3 months and it has been helpful in slowing progression and keeping me independent. ALS affects everyone differently so as with any treatment, some see very positive results and others very little.

Exercise is a major part of the protocol including breath stacking so it requires some willingness to do more then just "take some pills". Please visit Winning the Fight . com to download the protocol, join the forum and ask questions there

I also have kept a journal in the "Newly Diagnosed" forum here so you might find it useful to skim thru that. The DP is not a cure but too many people have seen significant improvement to ignore it...
 

Nikki J

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Controversial. Some people swear by it. ALS untangled reported on it negatively. It is expensive and a LOT of pills. Not everyone is able to manage them. You have to make your own decision of course. I am interested that your neuro recommends it. Where do you go if I may ask?
 

pearshoot

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i have been doing supplemens since day one feb/2010. i do a test every 2-3 months to detetrmine what my body needs carefully interputed by herbalist. she frequently passes on some saying continue what you are doing. when an organ problem is corrected i discontinue the supplement when supply runs out. at this point i do ten, counting vitimins, supplements, co-q10, beta-careton, creatine and aloe vera. still walk, talk, eat and breat on my own, but limbs are weak. fvc 89-92, bulbar region still good. if you decide to commit to supplements its for the long haul. it does not stop or reverse als. the best it can do is make you feel good, make your immune system healthy to fight body aliments, and i truely believe it has kept my body progressing slowly
 

Tx Daddy's Girl

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He is fairly new, Dr Joseph Oommen in Beaumont, Tx. He explained it was controversial but he had a patient that he would've given 3 months to love and this patient started the protocol and he has had amazing results. He also rubbed coconut oil on his skin and it stopped the fasiculations. We are still in a waiting game, the drs we see want to wait 6 months before an official diagnosis is made but we are treating it as if it is ALS. This dr advocates whole body wellness and likes a modified ketogenic diet. My dad is gung-ho and willing to try it - at this point what can he lose?
 

Nighthawk

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It's a hit and miss.
It might (again...might) work for some but, not necessarily for everyone who tries it.
Every PALS is different, and progression rates are different. Some PALS progress so quickly and go downhill very fast, whereas others progress very slowly and may preserve some functions even 5 years after the onset.

Some start with Limb-onset and can swallow and talk normally for several years whereas others start right with Bulbar-onset and can no longer swallow or talk.
For those folks (PALS with Bulbar-onset), a Protocol like that, which has lots and lots of supplementation in the form of capsules and/or tablets that need to be swallowed every day is frankly overwhelming, time consuming and energy consuming and, they might even choke.

Not trying to discourage those who are trying it already. If it works for you, that's perfect but...what may work for you, NOT necessarily has to or will work for someone else.

A man's food is another man's poison.
We all are very different, genetically speaking.


NH
 

jellis86

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I was going to comment earlier about the difficulty in taking pills by mouth, but Nighthawk hit the nail right on the head!

For me with bulbar onset, pills are becoming increasingly difficult to deal with by mouth. I take many via feeding tube now and that too is very time consuming since each pill has be crushed, dissolved in water, and then injected into the feeding tube SEPARATELY with a tube rinse in between each pill.

Now if there was real medical and or personal results from PALS, then it might be worth some of the aggravation. But something that is hit and miss and where we only see a handful of people saying it slows it down etc. probably isn't enough for most to go into the cost and anguish of taking pills/supplements from morning until night.

But I agree that if any PALS wants to give it a try, then by all means do so. But like anything with ALS, what might work for a few may have no effect on others.
 

pearshoot

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try to find a herbalist that does bio-meridian or zyto testing first. good diet, healthy is our best medicine./ the immune system most be at peak performance to fight whats going on. caution, if any herbalist, holistic doctor says i can cure ______ nail your wallet shut and run as fast as possible. western medicine offers nothing, eastern medicine offers hope but you must stay with it for the long haul. i started in dec/09 and have never quit. li does not stop or reverse als but i believe it slows it
 

dbltree

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I've posted this link before but it might be helpful for newbies with questions?

Protocol Trial Results

It is important to remember that if 10 of us did exactly the same thing as pearshoot (for instance) we might get 10 widely variable results, perhaps none equal to his. That would not however mean that his methods don't work, nor that they didn't have a positive impact on 10 PALS...only that because progression rates vary so much that it's very difficult to judge success or failure....
 

Tx Daddy's Girl

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Thanks. I realize it's not approved but if you research the FDA you will find out they will only approve things if you pay them enough. A company made up a drug and sent it thru the approval process and the FDA said they would approve it for a price - The FDA is what is wrong with the cost of drugs today. Okay, off my soapbox.

I think there is too much evidence that it works to ignore it - I'll agree it doesn't help all but I think it should be available to pts to see if it helps. Seriously, we know just as much about ALS now as we did when Lou Gherig had it. We are going into this fight with as much as we can.
 

Uptown

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I think that is a bit of an oversimplification. It does cost money but not as you describe. The approval process involves extensive clinical trials in a very defined process that allows using people to validate the drug. The timeframe is not because people don't pay it is because there are known issues identified in the trials. Even with no know issues or side effects we have drugs like Tylenol that have been used for many decade that are now understood to be bad for us. With everyone unique, it is extremely difficult to predict how everyone will respond.

In my opinion what is wrong is we let the political climate infiltrate pharma. The lobbyists (and lobbyees?) freely wine and done and I'm sure money changes hands in this arena. We let the exorbitant "side" money roll up into R&D costs and then allow pharma to recover costs through high prices. When you buy The Purple Pull, for example, you get to pay for all those commercials you see.
 

AzBabs

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I can hardly swallow the perscription meds I am on with apple sauce, much less a bag full. My neurologists at Barrows Neurological Institute advise againts it. They are a MDA/ALS clinic. I have been to "Ask the Expert" seminars from both MDA & ALSA & both advised against it as there have been no studies done to back it up. As an RN who has had a class in medical statistics I have chosen to not do it at this time.
 

pearshoot

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what is creatine considered, supplement of course. in sep/2010 als clinic neuro stated, creatine has been tested for als and shown not to have a significant effect. guess what in feb/2011 they started testing it again. signed up for the test but had to be off it for 30 days, by 10th day i was so weak and fatigued i went back on it (worst day ever since diagnosed). since that time there has been two more trials and they are still testing it. i do not do deanna protocol as i think its a shot gun approach. i know several pals do several prescription meds. i do two, blood pressure and azilecvt (off label) azilect is a parkison's approved medicine i just finished a year long test on. i know this may be offensive but can you or your neuro at barrows prove your prescriptions are doing you any better than my supplements. i am still able to walk, talk, eat, breath on my own. do multiple range of motion exercises at home, go to gym and use minimum weights on ten machines of course there are no studies on using multiple supplements as there is only miniscule profit in them. i am one who believes western medicine offers nothing at very high prices and eastern medicine offers hope at very low price
 

pearshoot

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those of you taking different vitimins, minerals, ect particullarly on feeding tube take a look at whats in gnc muscle milk. this could eliminate some pills
 

dbltree

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I agree with pearshoot, even though we each may use a slightly different approach, we both know that NO ONE is going to help us...we either help ourselves...best we can or die...period!

The keys to the Deanna Protocol are AKG, GABA and MCT oil but include creatine and a host of others that one can choose to take or not. Antioxidants are a huge part of it so glutathione and others are also important, some things are a shotgun approach because no one really knows for certain. Peoples lives are at stake, so far better to take some things that may be of little help then to find out down the road they had a significant on slowing progression. No one has gotten sick or suffered any serious side effects from taking the DP and there are well over a 1000 PALS on it all over the world.

The protocol has and is being tested but as pearshoot notes..there is no profit involved so the medical community snubs their nose at it, while we continue to suffer and die. The medical community has only this advice...go home and die,...pearshoot and choose to do otherwise....
 
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