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 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
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