Rich - increased energy on Freddd's methlation protocol

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Apr 14, 2011.

  1. mbofov

    mbofov Active Member

    Hi Rich - I don't know if you saw my post on the Phoenix Rising board, but wanted to let you know that in just a few days I am feeling quite a bit better on Freddd's protocol. I've cut out all the simplified methylation protocol supplements, and anything with folic or folinic acid, also have cut out l-glutathione and n-acetyl-cysteine.

    And have started taking carnitine fumarate (2,000 mg. day) in place of acetyl-l-carnitine, Methyl B12 shots (5,000 mcg. 3 x week) which I was already doing, adding in sublingual Jarrow Methyl B12 lozenges, Solgar Metafolin (400 mg. 2 x day) - I think this is the most important one, also Source Naturals ADB12 (dibencozide), Now Brand Nutritoinal yeast for B vitamins and Country Life Total Mins for potassium.

    My head feels clearer, I feel stronger, but am being very careful as I don't want to crash. And in the past I have had a couple of supplements temporarily give me increased energy (l-carnitine, NADH, malic acid, calcium pyruvate) so am waiting to see if this will last.

    For the rest of you (because I know Rich has read about this already), Freddd theorizes that in some people folic acid, folinic acid and the simplified methylation protocol, as well as l-glutathione and NAC and undenatured whey, actually induce folate deficiency, and that unpleasant symptoms attributed to detox on the simplified protocol are actually symptoms of folate deficiency.

    So it looks like I am one of the subset of patients who are not helped by the simplified methylation protocol.

    Rich, what would you think about incorporating Freddd's suggestions as an alternative for those who don't do well on the SMP? It appears that a methylation block still might be at the heart of the problem, but the method of lifting the block can vary widely.

    Mary

  2. richvank

    richvank New Member

    Hi, Mary.

    As I posted on Phoenix Rising, I'm very happy to hear that you have found something that works!

    Also, I'm sorry that so much time was wasted being on the Simplified protocol, which turned out not to work for you.

    I agree that it still looks as though the partial methylation cycle block is the central issue in the pathophysiology, but that treating it may need to be different for different people. This actually corresponds to Amy Yasko's approach, in which she characterizes certain genetic polymorphisms, and then bases treatment choices for each person on the results. I knew at the outset that extracting the Simplified protocol was a compromise, and compromises always involve losing something in order to gain something else, in this case lowered cost and lowered complexity.

    Freddd and I still aren't in agreement on everything, but we do agree that lowering folic acid in our protocols is a good idea. It competes with the active forms of folate for absorption, and it also requires using NADPH to chemically reduce it before the body use it, and NADPH may be deficient already in some PWCs.

    The tie-in with Freddd's problems with glutathione may be that NADPH is also needed to recycle oxidized glutathione back to the active form, reduced glutathione. Until I considered this, it was a puzzle to me that Freddd had difficulty with supplementing glutathione, since I still believe that the depletion of glutathione is what causes the onset of most cases of CFS.

    I think that your suggestion about having alternatives is a good one. I hope we can quantify what fraction of the people find each of the protocols to be ineffective. If Freddd's protocol is effective for a higher proportion, perhaps it should be the first alternative, rather than the second. I just don't know enough yet to decide about this, but I don't view the Simplified protocol as sacred, and there's no good reason to expect it to be the optimum treatment for lifting the partial methylation cycle block. It did help over two-thirds of the people in our clinical study, so it does seem to have something going for it. But I would really like to improve the overall approach to help more people, and to help them faster.

    Thanks very much for reporting your results, and I look forward to hearing how it will go for you in the future.

    Best regards,

    Rich
  3. mbofov

    mbofov Active Member

    So far so good (as the man who jumped from the 100-story building said on the way down! :D)
    Actually, no, I'm still feeling better, though I keep waiting for the other shoe to drop.

    In any event, I will keep you updated how I do on Freddd's protocol. It just seems a little too good to be true ..... but you never know -

    Best wishes,

    Mary
  4. mbofov

    mbofov Active Member

    Maybe I should go barefoot? :D - okay, that was bad.

    Thanks for your kind thoughts - hope you're doing okay -

    Mary
  5. mbofov

    mbofov Active Member

    As I said on the Phoenix board, I really don't consider it time wasted trying the simplified methylation protocol. It didn't keep me from trying other things. My doctors really had nothing to offer me, except for some things which improved my digestion. But no help at all with my energy problems. At least you were working on trying to solve the riddle of ME/CFS, which not many people were doing.

    I don't know yet if my improvement will continue - I am extremely cautiously optimistic at this point, well, not even optimistic - it's been too long. More curious I guess.

    And hopefully if things do go well for me, then it can help others in the future, and so that could be a very good thing.

    Best wishes,

    Mary
  6. mbofov

    mbofov Active Member

    well, the other shoe dropped. I crashed yesterday, I was not doing much more than I usually do so it appears my stamina has not increased even though I felt better. I hate this.

    Anyways, will stick with this protocol for awhile to see if anything changes, or if it will end up just being a temporary fix like so many other things.

    Wish I had better news -

    Mary
  7. richvank

    richvank New Member

    Hi, Mary.

    O.K. Hang in there. Freddd's protocol may still pay off for you.

    Rich
  8. richvank

    richvank New Member

    Hi, Mary.

    O.K. Hang in there. Freddd's protocol may still pay off for you.

    Rich
  9. mbofov

    mbofov Active Member

    I will keep at it for awhile - at least it doesn't make me feel worse!

    I really would like to know why several things cause only temporary improvement for me, and then I go back to square one - NADH, malic acid, calcium pyruvate and l-carnitine all helped me temporarily, a week or so at most, and then just stopped. I don't know if Freddd's protocol will pay off in the long run or be another one-hit wonder. I would really like to know the physiology of why these only help temporarily - of course that might be teh answer to teh riddle of CFS. Does a virus jump in and stop things, or toxins or what the heck --- to be honest, it doesn't make any sense to me. I know this has happened to other people. It seems if we had serious research money this is one of the things which could be investigated.

    Thanks for your encouragement -

    Mary
  10. richvank

    richvank New Member

    Hi, Mary.

    I think that the reason is as follows:

    There is a root issue in the abnormal biochemistry of CFS. This root issue leads to depletion of a number of important metabolites, and these in turn have their own deleterious effects on the overall metabolism. By supplementing one of them, one of the "downstream" issues in the pathophysiology is corrected, and that gives a temporary boost. However, then the limiting factor becomes one of the other deficiencies, and so on.

    As you know, I think the root issue is the vicious circle that involves glutathione depletion, B12 functional deficiency, a partial block of methionine synthase, and draining of folate from the cells.

    This vicious circle in turn causes deficiencies of several other metabolites, and they then cause other problems, and so on.

    Lifting the partial methylation cycle block has worked for quite a few people. I don't know why it doesn't work for all PWCs, including you. I think that some do need methylcobalamin, as in Freddd's protocol, and I'm hopeful that this will turn out to be the answer for you.

    Best regards,

    Rich
  11. mbofov

    mbofov Active Member

    Thanks for your input. I am sticking with Freddd's protocol for awhile.

    I've been reading this morning about DOM (delayed onset fatigue), an acronym which is used for athletes who have delayed onset fatigue accompanied by pain some 24 hours or more after the exertion. hmmmmm..... sounds like CFS! But it isn't of course.

    However, the similarities are striking. I was reading that some remedies for this DOM are plant sitosterols and proteolytic enzymes. So am seriously considering giving those a try. The articles talk about metabolites and this problem.

    What the heck - have not tried these yet - if I have a miracle, I will post, but think I will wait at least 2 weeks before posting ...

    Mary
  12. richvank

    richvank New Member

    Hi, Mary.

    There is a recognized disorder in sports medicine called "overtraining syndrome." I think it actually is the same as CFS. I don't know if this is the same as DOM.

    Exercise increases the metabolic rate, and that raises the production of reactive oxygen species, and hence oxidative stress and glutathione depletion. As you know, in my hypothesis, glutathione depletion is what leads to onset of CFS in genetically susceptible people. Overexercising is one of the possible ways to deplete glutathione.

    I don't know how much the remedies you mentioned would help, but it would be interesting to see if they would help. Proteolytic enzymes have been used in CFS to help with digestion of food (if taken with meals) or to counter hypercoagulation of the blood (if taken away from meals).

    Best regards,

    Rich

  13. mbofov

    mbofov Active Member

    This is the article which talks about DOMS, or overtraining syndrome, which recommends proteolytic enzymes (not for digestion but to reduce inflammation) and beta sitosterols. It's really very interesting:

    http://www.bodybuilding.com/fun/south127.htm

    The symptoms sound almost identical to a CFS crash. Only with CFS it only takes a very small amount of exertion to cause a crash.

    I did another post about this. A few years ago someone on this board (I think catseye?) posted about using a product called Extra Energy Enzymes to help with post-exertional "malaise". I am going to give it a go to see if it helps. (as well as keeping on with Freddd's protocol)

    We'll see!

    Best wishes,

    Mary
  14. richvank

    richvank New Member

    Hi, Mary.

    O.K., I think this is the same concept as using proteolytic enzymes to break down fibrin in cases of hypercoagulation. If the enzymes are taken away from meals, they won't be used up in breaking down food protein in the gut, and instead will be absorbed into the bloodstream, and are then able to break down deposits of protein in the circulatory system. Such deposits can be associated with inflammation.

    I have been told that in Germany people will take a proteolytic enzyme product such as Wobenzym for inflammatory conditions in which an American might take ibuprofen, and they get good results with it.

    DOMS does sound a lot like CFS. It might be sort of a mild or early form of overtraining syndrome. If the person kept overdoing, they might end up with full-blown overtraining syndrome, which I think is the same as CFS.

    Best regards,

    Rich
  15. mbofov

    mbofov Active Member

    I've played with the dosage a lot on the supplements whcih helped me temporarily. But none of them ever boosted my energy again like they did the first time.

    After reading this article, http://www.bodybuilding.com/fun/south127.htm, I am beginning to think that the problem with post-exertional "malaise" is not lack of proper supplements, but the actual effect of exercise and its by products. The article is really very interesting. It talks about delayed onset muscle soreness (DOMS) and fatigue in athletes, which sounds strikingly similar to CFS crashes. And Rich believes that DOMS is actually CFS. And this would explain why the supps stopped working - because they weren't the real solution to begin with. The article talks about using proteolytic enzymes and beta sitisterol to counter the PEM. So I'm going to try those. I did a separate post about this but no one responded. May bump it up --

    Also, for what's it's worth, I did stick with teh simplified methylation protocol for 3-1/2 years, starting at a tiny dose, and I was never able to increase it. The negative side effects which I assumed were detoxing continued and never got easier to take. Then on the Phoenix Rising board I read posts by someone named Freddd who believes taht the detox symptoms of teh simplified methylation protocol are actually symptoms of folate deficiency induced by hte the protocol. Freddd has a different protocol, still using forms of B12 and folate, but different forms, and I am finding that I am tolerating his protocol much better than Rich's, though I still crashed. So I plan to stick with Freddd's protocol, plus take the enzymes and beta sitosterol and see how it goes. Also have to take extra potassium, at least for awhile, on Freddd's protocol.

    Mary