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Thanks...I'm sure he'll get it fixed shortly! ;)
 
3/26/2013

Small thing, but...I can grip a pen now and my penmanship has improved markedly! I did register on P L M so progress or lack of it will be shared in detail there.
 
I just started that drug! I am going into week 2. The side effects from the first week were very funny. It was like I was drunk all the time but with no hang over! I would say things without thinking and lets just say some friends and family turned red. Now, I find my muscles are actually weaker and I am falling a lot more. I hope it is working out great for you!



Yes...my EMG showed problems right at start...

Deb...you are correct about CO but...I have an iron gut so it's not been a problem! :)

March 18th, 2013

I decided to join a drug trial at University of Iowa ALS Clinic and chose CK-2017357...could end up with placebo of course but will give it a shot. Requires 11 visits but they provide some compensation and free parking pass etc.

I'm up to nearly 12 tbls a day of coconut oil with no adverse effects, add it with coffee, green tea, cook with it, pour it on food and massage it in my muscles twice a day. I am aware that those who have seen positive results have waited 3-4 months to see any effect so not expecting any major, radical improvements over night. I do have to buy it in gallon pails however! :lol:

I think with ALS it is extremely rare to gain any lost ground barring a God given miracle so my assumption is that if I see any positive results it may be from CO.

That said my right hand and foot no longer get ice cold and I have less saliva (most time almost normal), the arch of my right foot no longer hurts and less muscle pain overall. No cramping or spasms at night so I sleep better....anything at all that results in "good" things happening makes it more then worthwhile to me!

My protocol supplements arrive today and I am going to do my best to do exactly what has worked for others on the protocol and see what happens. I have noticed that to often others have tried only portions and then were disappointed with the results.

I'm also trying to stick to some semblance of a ketogenic diet and avoiding sugars, MSG etc.

That's news from Iowa! ;-)
 
Hi Cheryl...I don't start until April 16th...mixup in scheduling caused a delay, hopefully it starts helping you but please keep me posted.

Meanwhile...the protocol I am on (I am not allowed to mention it here...why I don't know?) is yielding some pretty dramatic results.

I could barely walk...now walking a brisk pace, right hand was nearly frozen, curled up...now nearly back to normal except for forefinger and am able to start squeezing a stress ball.

I have experienced "re-gress" in all areas which is phenomenal and very encouraging. Since I can not share here and still can not send a PM I am keeping a journal on PLM and WTF.

Thanks for all the encouraging visitor messages....getting my Wranglers on each morning is getting easier...;)
 
Paul how can I get to know what protocol you're on ? As my dad has little strength in his fingers and I would love to see some positive change there. If you cam assist at all that would be great .
 
Unfortunately the moderators won't allow me to mention the name of the protocol, despite the fact it is helping me and many others. They have also shut down my ability to send or receive private messages which is very sad. I understand that they want to prevent scams etc, but this is in no way a scam and has given me new hope. I would be in a wheel chair right now if not for this protocol.

If they will allow me this...search Inspire ALS which is another ALS forum and there is a thread there with the name of the protocol and in there a link to it.
 
Dbltree,

I do know about the Protocol you are talking about.
But, the thing is that not all PALS out there can follow such protocol as it's energy consuming.
For example, it includes a lot of supplementation that only comes in the form of capsules and/or tablets. PALS with Bulbar ALS onset (like myself) may have problems with swallowing as their tongues cannot move things around such as food in their mouths, let alone capsules.

The protocol may work for some, but not for everyone.

Just my 2 cents.
 
Paul , did you have any muscle wastage ? Did that at all improve ?
I'm hoping there is something in the protocol that helps muscle wastage . Thanks so much
 
Many PALS with Bulbar onset are on the protocol taking the supplements in powder form (liquid) or emptying them and getting them via PEG, but you are right NH...may not be feasible for every PAL.

I have been on the protocol for 3 weeks Pumpie so have not noticed new muscle where I have atrophy, it's a slow process trying to rebuild muscle even while ALS is destroying it. It is incredible however to find one can move fingers that were previously stiff and frozen so to speak.

In my case my legs have seen the greatest improvement, my balance is remarkably better and I walk at a fast pace where I could barely walk at all with a walking stick. my right hand is/was all but useless but I can move my fingers, I have some grip strength returning and I can use my right hand to drive now.

Saliva is significantly reduced and my muscle stiffness is 90% gone!

I wish I would have known about this at the start, far easier to maintain then try to rebuild destroyed muscle....

I'm keeping a record on Patients Like Me so more info is there.
 
What drug are you taking?
 
I have done a lot of different supplements based on zyto testing. some from day one, others dicontinued as test showed no longer needed. presently doing 10. has the doctor that started the protocol ever updated the status of his daughter or the florida uniiv that agreed to follow pals using it ever published anything
 
Cheryl...it's not a drug, it's a fairly complex combination of supplements that feed/repair the nerves faster then ALS destroys them, in turn keeping muscles alive. Keeping in mind that just like cancer not everyone responds the same.

PS....on WTF they share everything on how she is doing and she answers questions best she can in relation to what she and others have experienced and the University tests are ongoing.

It is not my intention to convince anyone to try this protocol but rather to at least make everyone aware that there is a tool with which to fight back. As I mentioned earlier...chemo does not save every cancer patient, but that doesn't mean chemo is no good! This protocol has helped many people and others not so much...all I know is it is helping me and giving me hope for a longer life then I might have had with out it
 
Hi Paul
sorry to hound you. do you know how I can find out exactly what I need and how much of each thing , and when its to be taken for this protocol?
that would be great
thanks so much
 
Hi Paul
sorry to hound you. do you know how I can find out exactly what I need and how much of each thing , and when its to be taken for this protocol?
that would be great
thanks so much

Yes....check your visitor messages
 
I posed the following questions and received the answers shown below

1) You mentioned you have taken up to 4 *** per hour...why/when?/how often? Did twitches return, felt fatigued, noticed progression etc?

I NOTICED MY TWITCHING HAD INCREASED SO I INCREASED ***. THE TWITCHING DECREASED SIGNIFICANTLY. I LET MY BODY BE MY GUIDE BECAUSE SOME DAYS MY BODY MAY REQUIRE MORE ENERGY THAN OTHERS.

2) Have you had any progression since being on the full protocol or have you been able to fully stop it?

WHEN I SEE PEOPLE I HAVEN'T SEEN ME IN A WHILE, THEY ARE SHOCKED AT HOW WELL I'M DOING AND SAY YOU HAVEN'T PROGRESSED (THESE PEOPLE WOULD NOT LIE TO MAKE ME FEEL GOOD). I WOULD AGREE WITH THE EXCEPTION OF MY HANDS. BUT, THE HANDS ARE MY FAULT BECAUSE I DIDN'T EXERCISE THEM LIKE I SHOULD. HOWEVER, I AM STARTING AGGRESSIVE HAND THERAPY NEXT WEEK.


3) Were some things easily reversed/stopped while others showed little change? 4) How long for major changes (such as not needing a cane)

PEOPLE WITH BULBAR ONSET SEEM TO NOTICE REVERSAL PRETTY QUICK WHEN THEY BEGIN THE PROTOCOL SOON AFTER ONSET. REVERSAL FOR ME TOOK TIME LIKELY BECAUSE I DIDN'T START TAKING **** UNTIL APPROX 3 YEARS FROM DATE OF ONSET AND IT WAS 4.5 YEARS FROM ONSET WHEN I STARTED TAKING THE OPTIMAL DOSE OF **** AND OTHER SUPPLEMENTS. MY REVERSAL HAS COME IN THE FORM OF INCREASE MUSCLE STRENGTH. THE PROTOCOL ALONE WILL NOT INCREASE YOUR MUSCLE STRENGTH, YOU HAVE TO EXERCISE. LIKEWISE TO SEE ANY MAJOR CHANGE, YOU HAVE TO WORK AT IT. MAJOR CHANGES ARE NOT A GUARANTEE.


5) How much time do you spend each day exercising?

1HR 3X/WK WITH A TRAINER, 1HR 2X/WK PT, 1 TO 1.5 HRS A WK ON MY OWN. ALS IS NOT AN EXCUSE NOT TO EXERCISE IT IS A REASON TO EXCERCISE-AT LEAST THAT IS MY PHILOSOPHY. YOU MAY NOTICE INCREASE TWITCHING AFTER EXERCISE BECAUSE YOU USED ENERGY, IF THAT HAPPENS TO ME I TAKE MORE ***.

THE PROTOCOL, AS YOU SAID, IS NOT A MAGIC PILL. IT HAS DEFINITELY HELPED ME, NO QUESTION-I TAKE IT RELIGIOUSLY!

IN THE WORDS OF STEVE GLEASON, "AWESOME ISN'T EASY", YOU HAVE TO WORK AT IT

That might answer some questions on how she is doing and clarify that unlike typical PALS, exercise is not only possible but imperative to rebuilding atrophied muscle.

There of course many others who have made significant progress in slowing or reversing ALS on this protocol and usually those who have not did not follow the protocol and could/would not exercise.
 
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