Deanna's Protocol

My Dad was recently diagnosed with ALS. It is sporadic and not familial and started with twitching and weakness in the legs. In July of this year, he started falling, in August he could only walk about 200 feet, in September he needed a cane, and by October he was in a handicap scooter. We started 8 tbs. pure coconut oil {melted and mixed with oatmeal or applesauce} everyday in November....and the symptoms have leveled. He still has use of his right leg, and there has been no noticeable progression of the disease. This happened within a week of starting the coconut oil! We are just now starting DEANNA'S PROTOCOL: http://www.winningthefight.net/ It looks so promising! Dr. Vincent Tedone was a surgeon who quit his job 5 years ago to research and save his daughter from ALS, and his protocol is working. He is very willing to share information and if you click on the above link you can write to him. He recommends consulting with your doctor. Currently, the University of South Florida is undergoing research on Deanna's Protocol. I wanted to at least share information because I know this can be such a hopeless disease!

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Please post and maintain data at www.patientslikeme.com . To see data on things that people are trying is tremendously helpful for people with ALS searching for options. Thank you.

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I just started the Deannna Protocol about a week ago, maybe it's wishful thinking but I feel like I'm getting better . I was diagnosed with
the Bulbar onset ALS kind. My wife says she can understand me better in the mornings when I try to talk. I can swallow better and not choking as much. Also my gag reflux is better. I emailed Dr. Tedone to tell him thank you for his work, he is very kind and replied back the next day reminding me that the man Anthony on the CBN interview has the Bulbar form and has done extremely well so there is hope. Thank You

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I have also been diagnosed with Bulban onset ALS. I have the same symptons that
you have. My son found the site of The Deanna Protocol this morning. I've been
on the web and found your report. I would like more information on The Protocol.
My Doctor want's to start me on Rilutek (riluzole tablets) to slow the ALS.I am
not in favor of medications.I would like information on this from anyone who
is using The Deanna Protocol.

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Hello, I went on rilujzole about 2 weeks ago. I developed a lot of side affects. I felt nausa, I had a lot of spasms in my legs,
making me uncomfortable walking. Last week I went off the pill one day and I felt better. I turned around and went back
on it and few days I was feeling terrible again. I am off for 1 day and am feeling better. I went on Coconut oil on October 19
I have als in my right leg and the cirulation was poor within one week of taking Coconut oil my circulation is back which is
good. There is a new drug being tested in the phase iii is very promising it is being done world wide http://www.als.ca/research/clinical-trials/phase-iii-clinical-trial-dexpram ipexole-als
I would be talking to the clinic to see when it is available it is the true answer.
I take 3 tbsp of coconut oil 4 times a day it doesn't bother me. You have to start out slow so you don't get sick.

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I have been taking Rilutek 50 mg twice a day for about 2 and half months, I really can't say if it has helped or not but it does not bother
me as far as making me sick. My daughter emailed Dr. Tedone and he sent us the Protocol / Supplement List.
His email is vmtedone@gmail.com

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can you tell me what pills you take from teh deanna protocol? Are you only doing AAKG and COCONUT OIL or all the pills listed?
Please let me know so I can start my husband asap!

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I stopped at the health foods store and bought MCT oil
and coconut oil. From reading all the comments I feel
that these two are important. I will start using both oils
slowly tomorrow.

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IMO,
Riluzole side effects are like death!
What a great FDA achievement. You PAY a lot for something that does nothing or at most extends life 1-3 months!

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I was diagnosed with Bulbar onset ALS >6 mo ago. Just started The Deanna Protocol 10 days ago and subjectively already feel better. (I.e., twitching is 80% decreased!)

One thing I do NOT understand. Do Glutathione Capsules do any good or are they just destroyed/digested in the gut???

I also Chelate w/ EDTA (IV), Glutathione (IV), and sometimes DMPS (IV) & DMSA (oral) to remove large amounts of heavy metals! I was assured by 3 neurologists that I have ZERO heavy metals. Due to my industrial experience, this seemed odd! I found an MD who understood how to properly test and explained most (98%) of MDs don't understand this simple test protocol (SAD !!!) which uses chelation to provoke/pull heavy metals out. Unless you’ve been exposed in the last hrs or days, the std MD blood test will show no metals since metals are either excreted o ABSORBED into SOFT Tissue or BONE! 3 neurologists assured me that I have ZERO heavy metals! My charts showed a far different picture! I was off the charts with extremely high levels of Mercury, Lead, Cadmium, Arsenic, Aluminum, Uranium, ETC!!! For the first time in 30-40 years my bone marrow is working, IE, producing white cells!
Thanks!
I'll stay in touch…
RNS

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rnsals...THANK YOU for sharing!! I am so glad the protocol is working for you!! We are starting it with my Dad this next week.

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Hello,

Glad to hear you are feeling improvement. How have you been feeling lately?

Currious to know what are you following from the deanna protocol.

Sncerly
Hadi

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If this treatment makes you better, great....my one, big issue....if this is truly the "medical cure" for ALS, why has this not been picked up on a very real, scientific level to be researched, evaluated? Does anyone really think, if this is a miracle cure, that the big drug firms wouldn't be all over it, seeking to make the claim, not to mention the $$'s from such a cure? Does everyone take the same dose? Do you get tested to see what is best thing for you based on your current condition? Does the coconut oil mix with the other meds one takes or is it countering them? Are there side effects, such as severe dehydration or to be nice about it, gastric issues? Has anyone that is say, a total quadriplegic as a result of ALS, gotten up and walked now or starting talking again? Has the disease truly stopped, reversed itself? How many that have been on this treatment died?

A great deal taken on blind faith, and I understand that desperation. Just be careful out there.....

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MikeLil,

Note that the group ALS Untangled, which is led by a team of ALS specialists in the medical community, is trying to contact the Protocol's creator, Dr. Tedone, and his daughter, Deanna http://www.alsuntangled.com/. According to the group's Twitter feed, the team has reached out to the Tedones but has not received a response yet.

The ALS Association

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I sincerely hope it is something that can be used by many. I know with many of the various things tried on my wife, it appeared that she made "progress", but really, with Bulbar Onset, the truth is, you are counting days. And those with the "normal" onset, have more time as you know and as evidenced by my mother-in-law who lived about 7 yrs after her diagnosis. Today with all these "variants" ID'd out there and classified as ALS, I suspect a lot of meds may work for this or that, but are those diagnosis, really ALS, Lou Gehrigs, disease? With the same prognosis? I don't think they are, but that's for all the big money makers to figure out. Truly, I've not met any survivors of ALS to date, did see Stephen Hawkings on TV, but a rare situation and survivor. And those that seem to last longer, when the disease "takes off", there wasn't any miracle coconut oil that stopped it. If this "protocol" is the answer, great. Guess in time we'll know....

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Spoken like a true believer that the only solution to ALS is through drugs. Time to expand your heart and mind. Otherwise, get your things in order. Or be hopeful and explore natural/supplemental therapies that are being used successful by PALS. And google Ron White and ALS. He is part of a number of PALS that have actually reversed their disease through Spiritual Energy medicine. He has established a healing ministry for PALS. Spiritual healing-ever wonder how spontaneous healing works. It happens, but doctors can't explain it. Google the scientific benefits of prayer. No cost, and very powerful!

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My dad has lost the use of both his arme, and he is now feeling weakness inn his legs ...we have been thinking of trying the Deanna Protocol, but at the same time i am very scared of it. Can it hurt him more ? Also, Deanna was going to the gym ...which is completly impossible for my dad...he can't move his arms at all.
Please help ...can anyone who is one it explain to me how they are doing?
Many thanks,

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i too would like to hear from someone on this protocol and if it is helping. Its pricey to buy all those vitamins, supplements and although money is not an object when it comes to saving my husband, it does take from us paying a bill to be able to afford the supplements. SO please, only honesty.....how are you feeling since on the protocol?

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Hi Ally and Hrdly.

I started it a month ago and continued to see a decline in my arm strenght . However I did have a lot more energy
And my neuropathy was less problematic.
BUT, I'm not sure a month is enough. Also, I did not do the IV drip, and I didn't take the maximum amount AAKG. I later had a reaction to the increase in AAKG (my fault for not gradually increasing it) I plan to start again with a Glutathione suppository and a gradual increase in the AAKG. (FYI I know others that started with 18g without any problem)

There is a discussion on PLM that really gets into this. I would start there.

In regards to safety, there are supplements that may have you may have an issue with if on blood thinner, blood pressure or anti depressants maybe others.. Best to check with your doctor.

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thank you for the honest answer. My husband has been doing coconut oil rubs on and off and taking coconut oil pills and i cook with it. not seeing any great leaps of good things. he also has aakg added to his drink, but dr. tedone said it was not near enough. not sure about the other stuff. i have a friend whos husband is 100% on this protocol and going downhill fast. not sure if its related but i told her to get him off all that stuff to see if it stops this progression. we shall see and i guess time will tell. thanks again for your honesty...we need it

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My Dad just passed away after a very brave 4 month battle with ALS. I can tell you that he really believed that Deanna's Protocol was a way to possibly cure Lou Gehrig's. We just caught it too late. But, 2 weeks before my Dad started on the Protocol, he was pausing and slurring his words quite profoundly. A week into it...all of that came back and he never lost his speech or ability to swallow. His Dr. was all for it, and assured us that there was nothing in the Protocol that would hurt him. We were with one of the top neurologists in the state and he is a leader in the research of ALS.

My Dad was faithful in taking everything plus 8TBS. coconut oil daily {warmed in oatmeal or applesauce}. He also had Crohn's disease and COPD, which really masked the symptoms of ALS in the beginning. Had we been able to catch it earlier, I believe my Dad would still be here on the Protocol. If you email Dr. Tedone, he will send the Protocol to you and does recommend that you check with your doctor. The Protocol IS in research at the University of Florida. It has had good results! The sooner you try it, the better. What in the world do you have to lose? This may be the only treatment that can stop ALS in its tracks and give you a not only a better quality of life, but a LONGER life.

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