Deanna Protocol for ALS?

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I think when it comes to supplements (or even rx drugs), in ALS especially, the phrase "correlation does not imply causation" always seems to pop into my mind. The phrase is used in science and statistics to emphasize that a correlation between two variables does not necessarily imply that one causes the other.

Just my own opinion here, but to me it seems that if you've met one person with ALS, then you've met one person with ALS. There is a bank of symptoms they MAY develop... or not. And for some those symptoms will be worse than in others. It doesn't happen in the same order or at the same rate for any two people. There is no firm link (unless you have FALS) as to why these folks develop ALS to begin with. So it makes it very difficult to know what, if anything, works. Especially since the focus seems to be on "slowing the disease" rather than reversing or curing it.

My mom showed her first eyebrow raising symptom in 2006 when she was taking her supplements with apple sauce rather than water and mentioned that for some reason she choked easily when swallowing liquids. Then she slowly lost weight. Her speech very gradually started changing. Then about 18 months ago, people started to notice and ask what was wrong. After a full out "balls to the walls" effort on our part to get her diagnosed beginning last August, we finally got an ALS diagnosis in February 2013. She is almost all bulbar. But she speaks, eats, no PEG, walks (no cane), and generally can still care for herself. So if she did ANYTHING, be it Rilu tek, supplements, DP, or whatever, who could really say if it "worked" or not? Maybe it would slow the progression. Maybe not. But if she lived another 5 years would we swear by the DP or whatever it is she is taking? Or would we say yeah, she is a slow progresser and would have been regardless? She is on Rilu. now simply because she qualified for a drug assistance program. If she lives another 3 months or another 13 years, I'm not sure I'd give it any credit or blame. But if it does any good, it's worth it. She's bulbar so we'd not subject her to DP. But if it manageable for you and you want to try it, then like all things in ALS, I say go for it. We're kind of in the "nothing to lose" camp anyway, right?
 
isn't one rule that may help is STRONG BELIEF SYSTEM, religious and personal. I believe in eastern medicine very strongly. can I prove it slows progression no. can the nay-sayers prove it doesn't, no. Mexican standoff, I feel good about what I am doing and that is all that matters.
 
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



You know, I don't participate on most of these forums anymore for a couple of reasons, the biggest one is that people who don't know anythi ng about what they're talking about seem to dominate the conversation. You Nighthawk are one of them.

Are you on the Protocol?
Do you have Bulbar Onset?
How many PALS do you know personally?
How many PALS do you know who are on the Protocol?
Hows many PALS do you know who were on the Protocol stopped it because they saw no improvement?

All of your comments are opinions, but you make them sound like you have a deep understanding of Bulbar ALS, The Deanna Protocol, a number of people who are on, or who have been on The Protocol. However, I would bet dollars to donuts you can't answer any of these questions in the affirmative.

As for me? I have Bulbar ALS. I have been on the Protocol since Feb. 2013. I ahave seen remarkable stability in my symptoms and a lessoning in some of them, such as swallowing and choking. I have had no further development in any other area of my body since beginning the Protocol.

BUT!- I faithfully do the whole Protocol, not just a few of the supplements. Importantly, I take an adequate amount of AKG and AAKG every day. I take an adequate amount of MCT and Coconut oil every day to lessen certain symptoms such as muscle spasms and tremors. I eat a well regulated but balanced diet that works WITH the theory behind the Protocol. And, I receive 15ml push IV of Gluthithione every week. In other words, I decided to go all in on this after doing fairly extensive research about it, and many other possible alternative treatments as well.

The thing I haven't done, is sit on the sidelines and play Monday morning quarterback like so many of you folks on these forums; talking about things you know nothing about. It's counterproductive for everyone, especially you, whether you realize it or not because it robs you of hope. If you don't really know about something, through extensive research and/or experience, you should just keep your mouth shut. Your unbelieving, critical, unjustified OPINION, may be just enough to keep someone from trying the thing that will help them. How is it any skin off your nose if someone wants to try this, or anything else? Why you people feel the need to be negative and try to make yourselves sound so wise is beyond me. (Except of course to inflate your own ego.) Instead you should be encouraging people to try whatever they choose to put their own faith in, and dollars behind. Electing yourself to be the judge and jury on here, of anything is disgusting.

For the rest of you that are looking for something that is not dangerous, is moderately priced, is totally self controlled, requires no doctors permission or prescription, except for the IV Glutathione, and, in almost every way, whether you have ALS or not, is good for your body and brain, I can highly recommend the Deanna Protocol. And, I have no monetary investment in this, receive no compensation via Deanna Tedone, Winning The fight, or any of the product companies, and have not been asked or encouraged by anyone to make these statements. I just got fed up with all the opinionated BS.
 
WOW mallory2012, you come unglued because of another member's opinion? If you'd look you would know that nighthawk is bulbar onset and has probably done as much research as anyone on this or any other site.

Your contempt at the fact people share their opinions is at the very least petty and extremely self serving! I'll tell you mine (opinion)....I was diagnosed same month as you with bulbar onset ALS. My speech is nearly gone and swallowing pills has become almost impossible. Fortunately I have a feeding tube and take all my meds and supplements through it.
There are several things I have taken which have improved one function or another for days or even weeks. Energy drinks have improved my speech for the short term as have, now get this, a visit to the dentist for a cavity and getting Novocaine injection in my jaw. My speech returned to almost normal for 3 days after the shot and it also improved the movements of my tongue. WHY? Who knows, I'll talk about it on here and if people want to go have Novocaine injections to see if there is improvements, great! Currently I am taking fairly high doses of 100% whey isolate....I have noticed a slight improvement with my thumb/forefinger dexterity of my left hand. I have been taking it for about 6 weeks...is it helping, possibly. Others on here take this also.

The Dianna Protocol is all over this forum and the web. There are people on here who HAVE tried it and saw no improvement. And I have seen a couple, including you, that says it has worked. You know what? That's great and I hope and pray that you and others continue to show signs of slowing down progression or abatement!

But to come on here and blast a, in my opinion and others, very helpful member because he doesn't "ENDORSE" what works for you is ridiculous! If you took the time to read his and other posters on here it's quite obvious that we are not medical experts, nor do we try to tlk anyone into or out of something. It's all opinion based just like your posts. And I will reiterate what has been said hundreds of times, what works for one or even a dozen WILL not work for everyone.

But then again, it's just my opinion!
 
main post went to mod.....nighthawk is one of the most helpful people on this site, for you to blast him is uncalled for, period!
 
Mallory2012

If you read any of nighthawk's posts you would not be saying the things you did. He is a compassionate and very intelligent person.
 
you dont like anybody disagreeing with you then......are you opinionated too.....johnny
 
mallory 2012,

Your words: "I have chosen to live my life with positive thinking, prayer, humbleness, and thanksgiving, and humor". It doesn't sound too much like that with what you wrote to Nighthawk. And, as johnny said, who's being opinionated here? We are all her to support each other. If you want to be negative, the you are the one who needs to leave. Nighthawk is one of the most positive members we have, and if you re-read his posts, you will see what he is saying is, in fact, very positive.

If you want to be a part of the solution, and not a part of the problem, the I suggest you keep your vitriol to yourself. Be helpful all you want, but don't start any clashes with our members. Join in, don't opt out.

Just sayin'
Steve
 
your attack seems unwarranted . answer your own questions. you were diagnosed 2/2013 and you know everything about everybody? each of us handles our problems differently. my diagnosed 2/2010 was doing strength exercise before diagnosed and slowly backed off listening to my body still doing light weights, zyto test to determine what supplements to take, lots of good calories to maintain weight. over 4 years since positive on set. no bulbar issues, still walk, talk, eat, breath on my own. do I share what I do, yes. is it the answer NO. some believe,.some don't I really believe you owe nighthawk an apology.
 
Thank you so much, Jellis86, Vickim, Johnny and Steve for your kind words. I do really appreciate it.


@mallory2012:

You seem to be a confrontational person with whoever disagree with you on your personal points of view.

I have too much right now on my plate with this disease (ALS) ravaging my body to engage on a bitter bickering confrontation with you, who are another PALS just like I am.
But, I will make something clear for you.

I do not try (never had, never will) to "dominate" any conversation here on these Forums. I am nobody, just another PALS enduring this horrible disease everyday.
I don't know everything as I'm a human being not a supercomputer. I learn a bit everyday in life, just like anyone else.

My main goal here is to help fellow PALS who are enduring an horrendous disease like this one and, from time to time help newbies who think they have ALS, nothing more, nothing less.

Did I say that such Protocol doesn't work? If so, where did I say it?

If it works for you, "mallory2012", then fine, Amen to that.

But do not try to force your opinions or points of view upon others.

That Protocol may work for some PALS but, it doesn't necessarily means that it has to work for every PALS out there. Don't you agree on that?

Even drugs, medications, etc., work for some people but not for others.

Example: the antibiotic Erythromycin works well for me whenever I have had respiratory infections but it caused an anaphylactic shock to my sister that could've killed her and had to be rushed through hospital E.R.

You see? What works for me, did not work for my sister even when we share the same genetic envelope from our parents, let alone PALS with different genetic envelope.

The same for Protocols.

If it works for you, I strongly encourage you to keep taking it but, do no generalize that it is the "magic bullet" that will work for thousands and thousands of PALS out there because everyone is DIFFERENT.
Furthermore, some PALS with Bulbar-onset who easily choke on pills/caps find it overwhelming because of the huge amount of caps/tabs that have to be taken daily, (again, daily) even with a PEG-tube.


Kind regards,
 
Oh Carlos, you are a good good man. I applaud you.
 
When My husband was diagnosed he started taking all kinds of supplements -- Co Q 10, B-12, E, D, etc etc. Went to a naturopath for about a year. he stopped taking them and his progression slowed down. Go figure...
 
I would like to try the Deanna Protocol. I do not know how to get the regimen. If someone here has it & could PM me. I would really appreciate it.
 
I set you a message with info on DP
 
Dear All- I stand by what I said in my original post. Sorry,bad much as you would like for me to feel bad, or guilty about something, I dont feel that an apology is warranted.

I do find it laughable that all of you who have attacked me are guilty of exactly what you accused me of, which in most places is called being hypocritical.

Now, I asked nighthawk some simple questions that would establish if HE was qualified to make the comments and judgements that he did about my comments. He didn't answer them. Why?

I don't know Carlos, or any of the rest of you, so nothing I say on here is personal, nor is it meant to be. This is the Big People World folks, not kindergarten. So, if you question the varasity of my statements, about my personal experience, in my own life, I feel that you put yourself in a position to be questioned about your assertions and your qualifications to do so. No one knows about my ALS experience better than me. If I state that something has worked, you do not have the right to question that. To think that you do have that right, and to purposefully negate what I have said about a particular treatment, EVEN THOUGH YOU HAVE NOT TRIED IT YOURSELF, is the height of hubris and I must question what purpose you think you are achieving except to make yourself sound authoritarian to your fans? This is unproductive because one negative person can influence others from trying a treatment that someone as found to work. Even if their intention in honorable, if they themselves has not tried something they are not in a position to judge.

Like I said in my original statement, I don't post on these forums because they are generally so negative. You've proved my point.
 
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