TerryG

8/28/13: I have been working with Olly over on the ALS-TDI forum, on a thread called "Immune modulation in ALS - harmful or beneficial?" We have been going through the combination my PALS used to try and figure out why we may have achieved "arrested progression". We have a fair idea why it may help but we don't know if it will work for others. At this point in time Olly and possibly two others are self testing it. In three weeks from now we should know, fingers crossed. Terry.

8/2/13: Over 18 months without any deterioration, I think we may also have achieved "arrested progression" Having looked at what we did, retrospectively, I think we may have induced an
immune response, a system restore and I think I know how. Currently over at ALS-TDI forum
I have been feeding Olly, under - Immune modulation in ALS - harmful or beneficial? By feeding
Olly, I needed him/her to see what I see, to also prove to myself that I am on the right track.
I have not told him/her about the "arrested progression" or that medication combination that is
being suggested, we used. But Olly can see why this combination might work and it's probably
time to come clean. This may only work on my friends version of ALS. Natalie my start to
deteriorate again. I just don't know but as they always say - "Time will tell". Terry, 2 Aug '13.

11/20/12 #1-2 : Recently Flor posted on the general discussion forum – “What do you think caused your ALS?” some questioned her motives others gave their thoughts. It was “I think it's the "PERFECTSTORM" of a number different things coming together” by Ms. Pie that caught my attention. From this I wrote down what I think may be happening, which read – ‘A point in time when all have the perfect environment, achieved by different primary conditions, for an opportunistic
bacteria, a virus or a mutant amino acid to start off a vicious cycle, the ‘PERFECT STORM”.

# 1-2: A primary condition achieved by different means – environmental, chemical or medical. A primary condition that removes an amino acid, protein or purine from the link which could stop the cycle from starting but as this cellular storm gets into full swing it becomes self-sustaining and has the ability to negate this missing element itself and so becomes unstoppable. A primary condition that could clear naturally or through medical intervention but this will make no difference anymore as the vicious cycle is now unstoppable.’

# 1.1-2: I nearly posted what I had written above but I though it more appropriate here on my log, my record. I’m sorry if you find what I’ve written here and previous a bit cryptic, I do not want to give false hope. I try also to only question and not make statements or guess, as I am not qualified to do so.

#2-2 : Nearly eleven months now since we saw some improvement. Just been waiting and watching to
see if Natalie starts to deteriorate again but so far, she seems to be stable. Is it possible its over or possibly in Remission?- too early to say. No Mucus issues anymore, breathing is good and swallowing is difficult for her but achievable. Voice is slurred but understandable, bed ridden with limited
movement. Nat thinks it’s over and yes, it has been eleven months but at the same time she is realistic. Natalie, my friend, the pop star, the girl with the golden voice, who sang “Imperfect girl” is unfortunately, now is herself one. And even if we have been lucky enough to have stopped this horrible disease, the sad reality is she probably won’t improve any more than she has now but still, she is alive.

7/15/12 #1-4 : Over seven months now, Natalie is still stable, no visible deterioration. I recently posted on googler’s to date sole thread, it was in relation to Minocycline and I referenced a paper questioning the findings of a Phase 3 trial which had a negative outcome and I also stated we had a significant improvement while on Minocycline earlier on, but as time passed seemed to be less effective. But was it? Minocycline has been around for a considerable time, FDA approved 35 years ago(I believe) part of the Tetracycline family which includes Doxycycline, in recent years they have shown a beneficial response in the treatment of Sarcoidosis, MS, Arthritis, Huntington's & Parkinson's disease, etc. Nat started taking Minocycline in March 2011, not long after she had some blood tests done and surprisingly her Vitamin D levels came back borderline normal, knowing those with ALS have low to very low serum Vitamin D, plus the fact that the sun was not a friend of hers, this was unusual.

#2-4: So I started to questioned whether there was a relationship between Minocycline and Vitamin D, first thought being - Does it force the skin to produce Vitamin D? I had taken doxycycline as an antimalarial during my travels through Africa in ’98 and knew of and experienced the photo sensitivity issues, we called it the suntan pill. Highly unlikely this is happening but it did lead to my first post on this forum titled “Vitamin D and Longevity”. Soon after I found Karam & Scelsa’s paper titled “Can vitamin D delay the progression of ALS? At this time we were already on a Vitamin D3/Minocycline(2000iu/50mg) combination which we felt had slowed the progression.

#3-4: But I still believed there was a link- Was it manipulating Vitamin D? or, Is it similar in action to Vitamin D? or more precisely, similar to the active form 1,25-dihydroxyvitamin D3(calcitriol)? It wasn’t till recently that I started to compare them. On the surface, they are both described as Anti-inflammatory,Immunomodulatory and Neuroprotective but deeper you find they both - Increase Interleukin 10(IL-10), supress IL-2, IL-6, IL-17, IL23, Tumor Necrosis Factor alpha and inhibits IFN-y production. But I could not find if Minocycline is capable of activating the vitamin D receptor (VDR) the same as calcitriol. On last question - How would this fit in with the Marshal Protocol?

#4-4: As stated earlier Natalie first went on Minocycline in March 2011 by the end of February 2012, we decided it was not necessary anymore but to this day she still takes 2000IU of Vitamin D3. How we got to this point is outlined below, dated 5/24/12, you will find one segment out of place and added above.

Well I screwed this up completely 2.1 is missing, so I will have to post it here, maybe the moderators could slot it in.
#2.1-4: For quite a considerable time Nat had been asking me to find something for the burning, pins and needles in her feet, this was causing her a lot of discomfort and keeping her from sleeping properly. Some may recognise this as Peripheral or Diabetic Neuropathy as others on this forum have suffered too , well through my reading I learnt that Uric acid levels are generally low in people with ALS and Scientists at the Tel Aviv Sourasky Medical Center had linked a steeper decline in disease progression when levels are lower. So the question for me was “How do we raise uric acid levels”. Inosine a purine nucleoside, is converted to uric acid inside cells and thanks to our muscle building friends is available to purchase online.

5/24/12 #1.1-4: Haven’t posted for a considerable time as I wanted to see how things progressed and having jumped to conclusions before, you don’t want to get to excited. So I say this with great trepidation, we haven’t had any visible deterioration for the last 6 months and I stress visible. Natalie is bed ridden but she is breathing on her own and eating with the assistance of others. The excessive saliva build-up which was threatening, has gone and she is stable, or so it seems. We have had our hopes dashed before so we aren’t getting carried away. Below is what we’ve done to get to this point.

#1.2-4: Like most we have tried everything but without a doubt Minocycline and Vitamin D3 as well as a Chinese herbalists pill’s(which kept the saliva build-up at bay) had helped slow the progression but as time progressed they were becoming less effective. We realised we were losing the battle and during an emotional visit in early November, Nat was finally coming to terms with her mortality and I was losing another friend.

#2.2-4: At the end of November the pills arrived and Nat went straight onto 500mg a day, then twice daily. Initially I was hoping the Inosine would help with the Neuropathy and it seems it did and has never returned. But to our surprise, the excess saliva cleared and her breathing and her swallowing improved.

#3.1-4: So this got me thinking, “Do the long term survivors of ALS have Gout or have elevated levels of Uric acid?”, What I found from reading posts on this site and other similar sites, people mentioning having suffered from or living with gout and were five plus year survivors, so it seemed possible. Then amazingly on February 10th a paper came out titled “Uric acid levels predict survival in men with amyotrophic lateral sclerosis” which found a prolonged survival with elevated levels of uric acid. This was like, wow! Had we stumbled onto something? But they only associated uric acid levels in men and not woman. To my knowledge Inosine has never been tried out before on ALS, I did find a vague reference to a 15 year survivor on Inosine had seen improvement but no trials or other individuals having mentioned it.