Deanna protocol

Has anyone heard of this program for ALS? It was featured on CBN.

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I went to the CBN website and read the report:
http://www.cbn.com/cbnnews/healthscience/2012/November/Deanna-Protocol-a-Br eakthrough-for-Lou-Gehrigs/

I know that people on this site will give you mixed reactions, but it is very true what they say in the article that scientists will not accept anecdotal evidence. And usually no one will do a true scientific research project unless there is some money in it for them at the end of the line. And I DO trust CBN, and I know people who work for them, who are totally honest, trustworthy people.

I think it is wonderful and amazing that her dad was able to quit his job as a surgeon to develop this protocol for his daughter. See what she says at the end (for those of us looking for reasons things happen) about MAYBE she was the one who got this so that her dad could forge a path for a future treatment for everyone with this horrible disease.

If ALS happened to me, honestly, I wouldn't mind dying. I am ready. It's the suffering on the way to dying that would be the hart part. But if it happened to my kids, I would do whatever I could to help them. I'm so glad this father was able to do that.

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The protocol works, and I personally know because I've know Vince, and have been comparing my treatment using coconut oil with him since September of 2011. Both work because both increase the daily amount of ketones in the body. Deanna's Protocol does this through AAKG supplements, which is a ketone. Coconut oil produces ketones in 3 steps through the krebs cylce via the 60+% of MCT (Medium Chain Triglycerides) it contains. And, these ketones from the AAKG identified in the protocal and the coconut oil can pass through the BBB (Blood/Brain/Barrier). This is important to the success of the treatments as is taking high amounts of the AAKG and coconut oil on a regular basis during the day to keep the ketones in the body. Basically ketones are high octane fuel for the cells, and is an alternate to glucose. Glucose is the normal body fuel for the cells. I currently take 12 tablespoons of coconut oil each day, and based on my 2011 and 2012 EMG's the doctors say my ALS progression has stopped.

I'd suggest googleing the word "ketones" to learn more about what they are. You'll probably get around 4,000,000 items as search results. Also, ask your doctor about ketones.

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Isn't there any way the ALS associations can make it attractive for some pharmaceutical company to do the research necessary to get this information accepted in the wider medical community? People like Birdman, Vince, and others have told their stories and the PALS who have used their methods are living. So what is needed for the various ALS associations to publish something on it? More stories? More money? I guess I just don't understand why there is such a backlash against anecdotal evidence.
Thanks, Birdman, for sharing your experience.
-Barb

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It would be extremely helpful if people trying this and other do-it-yourself therapies would simply post and maintain their data at www.patientslikeme.com . That would be a blessing for others trying to make decisions. Please let the data speak. Thank you.

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Barb
I'm glad somebody is listening! But knowing what my mother went through with her ALS I think it's important for each individual (and their family) to also think about where they are on the ALS road. Based on my experience with coconut oil, and knowing what I know about Deanna and the protocol, neither are a cure. So depending on how long you've had the disease and how much muscle and nerve loss you've had, you may be stuck in or close to your current situation. Deanna started early with the protocol, and has apparently had very little muscle and nerve loss. I went 2+ years before starting with coconut oil so I had lost much more, and now I've stopped the progression and sloooooowly regaining some of the loss. And, since I have FALS I am assuming I will have to continue with the coconut oil regiment for as long as I want to keep living. However I don't think I'll ever live long enough to get all of my loss back! This is why I suggest each individual think about which step to take next. If you are in the early stages, and get serious about either treatment, you could have a good chance of stopping the progression, and live longer with maybe some difficulties. If you're down the road quite aways, you might slow the progression, and live some longer, and hopefully have some improvements. Just some personal thoughts. Hope they are helpful!

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Rochester Barb,

According to ALS Untangled, which investigates off-label and alternative treatments, they will be investigating "the Deanna Protocol" http://www.alsuntangled.com/. This organization is run by doctors who work with people with Lou Gehrig's disease.

The ALS Association

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Yes, they are helpful. That's why this forum is so important. Thanks, Birdman :)

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Wonderful! Thank you for sharing that link, "rknt50" :)

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SBMD, that is great news. Thank you.

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What exactly are the supplements in the protocol. I have been looking but can't find the list.

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email: vmtedone@gmail.com and they will send it to you.

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Are you taking only the coconut oil? or are you also taking AKG and AAKG?

I have lost the use of my right arm/hand and now my left arm/hand is almost gone. All this started in May 2012.

I take the AKG and the AAKG and about 1 tbsp of coconut oil each day. No improvement at all.

I am thinking that maybe I will increase the coconut oil, immediately. What do you think?

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hi..my husband is on the deanna protocol..and he has been amazing..within 7 days his fingers were working again and his energy was up..i thought ht e coconut oil was for massage..can you drink it?? 12 tblsp. a day is that what you do??? he is still driving since he was diagnosed in oct.2012..however had been having symptoms for at least a year and was misdiagnosed with carpel tunnell..thank you so nice to talk to someone who is really into it..thanks and take care and God Bless.."grateul, faithful, hopeful and fearless in Gods merry and grace" Bill and Irene..

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thanks will try to do..we are extremely happy with my husbands progress just got diagnosed in oct.nov.2012..l year after the symptoms..misdiagnosed with carpel tunnell,,,

any how praise God..we found the deanna protocol..working great..within a week his fingers were better and more energy..it is expensive so our kids are helping out..WHY DOESNT MEDICAL PAY FOR THIS?? $500 a month vs $1138 (with insureance)for 90 day supply of rilutek...or 4,250 with no insurance for Rilutec!!

!what gives..and it only guarnatees you to live 90 days???also all the side effects and even death??? we'll take our chances with somethign that seems to be working the Deanna Protocol..hello..anyone out there really listening to the patients?? take care and God Bless.. we remain ever "grateful, faithful, hopeful and fearless in Gods Grace and Mercies"...Bill and Irene

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if you watched the video..just srite them and they will send you the list etc..that's what my daughter did..take care and God Bless..it really works..Bill and Irene
p.s. buzzlite name is what i nicknemed my husband while he was being buzzed during the testing (electric needles all over ugh it killed me to watch him so i developed a funny name for him to lighten up the mood..even thought of twinkle toes if you put xmas lights on) i know it may be morbid..but my love of my life has always been humorous..no matter how bad things are ( he has a severe speech impediment since he was 4 yrs. old so he is the master of funny one liners) :) i love him soooo..

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With coconut oil I understand you need to be on 8-10 tbsp a day to be of help. I also was told to take magnesium chloride 3, 500mg a day
I have been on this 4 months, I added Deanna Protocol 2 months ago. I have ALS in my right leg. When I was diagnosed I asked about the coolness in my right leg and was told all I could do put on more long underwear. Within 7 days of taking the coconut oil combo my leg became warm. The odd time after hard or cold period it will drop but all I do is have a warm bath or heating pad and it's back. I live in Alberta so it can be cold. I feel the disease is moving up my leg and I am having spasms in my left leg the twitches have
settled down with me taking Deanna Protcol.

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sounds great..Praise God..i will ask my naturalist MD about the coconut oil will try anything. if it works..not the rilutek..guaranteed death??? come on now..seek and ye shall find..take care and God Bless...bill and irene (buzzlite)

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I have recently started on the coconut oil (9 tablespoons per day) and am on AKG (1x every waking hour) plus AAKG (from Deanna Protocol). My ALS was diagnosed in June, 2012 and is progressing at a rapid rate ... it took my right arm first, now the left arm is nearly gone in 8 months. I was working as a Healthcare architectural consultant when it hit. Unable to work now and feel very weak all over.

I will report if I see any improvement in the progression. I am on Rilutek (2x daily).

My right shoulder is out of joint and an Orthopedic Surgeon says there is nothing that can be done, due to the lack of functioning muscle tissue to hold it in place. This keeps me in severe pain constantly.

What are the thoughts on the Rilutek?

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I started taking rilutek in December, I was on for two weeks. I was nauseated had cramps you name it. I went off and in 2 days I was fine I went back on and back to the same problem. I went off feeling like I would prefer to die instead. I still have 2 weeks supply.

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My husband starting this protocol last week. He ordered everything with the exception of the IV. He was able to order it through a websites called PipingRock.com and Pureformulas.com. Very reasonable pricing. He put everything into a spreadsheet with pricing & item numbers if anyone is interested-would be glad to set it to you. Praying for a miracle!

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