simplified methylation treatment--ROLL CALL

Discussion in 'Fibromyalgia Main Forum' started by richvank, May 24, 2007.

  1. richvank

    richvank New Member

    Hi, all.

    My previous post with this title seems to have disappeared, so I will try it again.

    I'd like to know who is currently trying this treatment, and who is planning to do so in the future, just to get an idea of how things are going. No obligation, just counting noses!

    Here's a list of names of people who either said they were doing it or who have expressed interest. I may have left someone off inadvertantly, so please correct me if I have.

    If you are doing the treatment, please tell me when you started. If you are willing to summarize your response, I would appreciate that. If you have stopped, please tell me that. If you are planning to do it, please tell me that. If you couldn't care less, please tell me that :)-).

    I think the following unalphabetized list has about 42 people:

    barrowinnovations (Karen)
    cct (Carron)
    lbconstable (Laurie)
    bretz (Denise and Chloe)
    mbofov (Mary
    wld285 (Linda)
    Saoirse3 (Stacey)
    Swedeboy (Sean)
    chootik (M.)


    [This Message was Edited on 05/24/2007]
  2. lbconstable

    lbconstable New Member


    Hi Rich,

    Started with the simplified protol. Have been on it 7 weeks. I've been adding supplements though. I guess I'm sort of taking the back door into the long protocol:)

    Am very happy with my progress. Your theories fit my case. I have SNP's at each of the genetic sites you speak about in your female prevalence paper. I have gradual onset CFS. I also fit the criteria for FM, but consider CFS my main issue. Notable symptoms started around puberty, however in retrospect, I had behaviors as a child that Dr. Bell idetifies as coping mechanisms of CFS.
  3. lrgatplay

    lrgatplay New Member

    I have ordered the first 2 supps on the list.
    Will start with those for my son Jordan as soon as we get them.

    Thanks for the info and support.

  4. deliarose

    deliarose New Member

    Started Feb 19th on almost all of the supps except the multi. Took full tabs of everything and 400mg of Sam-e.
    Also continued with transfer factor and stuff to boost glutathione production.

    Benefits: improved sleep, body temp began to normalise and blood pressure nos started to pick up too.
    Cold extremities not such a problem.
    But the big thing was the cognitive improvemetns (i had long ago overcome the fatigue).
    Even during the early detox days, I could feel the mind was gettign sharper, clearer.

    3 months on, it's really a whole lot better. Sharper memory, better processing etc..

    Generally feel like I'm back in the land of the living. I'm a lot less stressed, pretty optimistic that I will make a good recovery. Just wonder how long it will take.

    The only caveat I would mention is that I did require a lot more sleep and I made sure I got it. That was frustrating for my other half, who could see my mood had picked up, and wondered why I needed to spend so much time in bed.

    Bottom line, the worst of the detox seems to be over, it wasnt' that unpleasant, and the progress has been dramatic.

    I just want it over with!

    Rich, I owe you. Thank god I ran across you. You're a genius.

    [This Message was Edited on 05/24/2007]
    [This Message was Edited on 05/24/2007]
  5. cherylsue

    cherylsue Member

    I may try the MCB protocol at some point in the future. I tried the Nexavir transdermal for 3 months with modest results and reached a plateau. I had hoped that would increase my reduced glutathione levels and suppress the viral infection that triggers my relapsing/remitting CFS.

    Currently, I am trying traditional Chinese medicine with a respected Chinese doctor who has helped Lisapetrison's husband. I am getting modest results from that, too. Currently, I had a setback from overdoing social commitments/activities. (Postexertional malaise, and some burning sensations.)

    I'm not sure I could do the mcb protocol with TCM. My TCM doctor wants me to give up vitamins, omega fish oils, olive leaf, and some other things. He says western medicine can't fix CFS. He says he can help 99/100 CFS patients. I'm on about 42 chinese herb pills a day.

    I think I was put off by some of the bad reactions some people were having on the mcb protocol initially. I'm taking a wait and see approach, but am encourgaged by the successes. You seem to doing a great job of monitoring and giving advice. I'm interested, to say the least.

    Antivirals are not an option for me since I react strongly to most RX meds. Famvir almost put me into shcok. MCB protocol looks like something that may be doable for me if TCM fails to deliver.

  6. Daisys

    Daisys Member

    I started right around the 1st of April, taking the simplified treatment, with sam-e.

    I feel I am responding to this gradually. This last month my blood pressure has been high, after many years of being very low. I'm taking less cortef and armour as of today to see if the BP responds. If so, I would consider that as a good sign that my own systems are up and running to some extent.

    I felt really good last summer, and thought I was very near remission after being on the Teitelbaum protocol for a year, when I had a nasty relapse from out of nowhere. That's unusual for me. I haven't quite recovered lost ground from that, so feel there's still "something going on" that needs to be taken care of.

    I'm being tested for lyme disease, and am considering asking to be put on antivirals, but right now am in no hurry, because if this protocol is working for me, I may not need anything else.

    I'll report back when developements indicate anything worth noting.

    Thank you so much, Rich! You're a hero!
  7. Forebearance

    Forebearance Member

    I began with the two folic acid supplements March 16th, 2007.

    I have gradually added the Perque B-12 and the PS. One more left to add -- the multivitamin.

    After adding the B-12, I had a scary detox reaction, which lasted 10 days. I have cut back the dose of everything to a speck, except the phosphatidyl serine complex. If my stomach hurts too much, I take a day off the B-12.

    Deeper sleep, weight loss, and possibly my thryoid waking up have been happening for me so far. I am more tired than usual, and seem to need more sleep.

  8. IntuneJune

    IntuneJune New Member

    I am trying to follow most methylation posts, have very limited time on my computer.....

    Am still very interested.

    Had started acupunture for another problem, am new to acupuncture.

    Usually try only one new thing at a time.

    Thank you again.

  9. desertlass

    desertlass New Member

    I may have to do some things first to get prepare, but this is in my future in some way or another. I'll definitely let you know when I start and how it goes.

    Good luck to all of you in the first trials.
    I'll be praying for all of you.

    Thanks Rich for all you have done, no matter how this turns out.

  10. Slayadragon

    Slayadragon New Member

    I tried all the supplements in the simplified approach for a few weeks at the beginning of March. I got what seems to me to be clearly detox alternating with improved energy and sense of well-being.

    However, I am committed to an antiviral program and decided it was best to finish it before moving on to something else that will stress my system.

    I started Famvir in November 2006 and will be ramping up to a few months' of Valcyte over the summer. I expect to restart the methylation program (hopefully under the supervision of my doctor since he seems to be showing early signs of interest in it) in fall or early winter 2007.

    Note that I currently am seeing an excellent Traditional Chinese Medicine doctor, who uses herbs to strengthen and balance the body's systems. In reading Amy Yasko's "Puzzle" book, I have realized that my TCM doctor's treatment approach parallels almost exactly the "first steps" in Yasko's approach.

    Some of this--such as liver and gut support--obviously has the same goal. Insofar as I can tell, it seems that TCM also accomplishes some of Yasko's other goals--such as balancing glutamate/GABA and helping inflammation around the nerves--even though the descriptions of what's going on are not phrased in those terms.

    In addition, I am taking a small amount of human growth hormone, which my doctor believes will help to rebuild the structure of my body (including the organs) after the damage incurred from the CFS as well as the strong antivirals.

    I am able to tolerate glutathione and have no obvious signs of CBS upregulation, and thus am supporting my liver with large amounts of non-denatured whey protein. (My experience over the years is that this supplement works extremely well for this purpose for me.)

    I also am taking an array of other supplements, many of which Yasko recommends as initial support for her patients.

    Further, Yasko seems to believe that the elimination of viruses can help the body detoxify heavy metals, perhaps providing an explanation for why I have periodically experienced detox symptoms just on the antiviral. Hopefully this will give me a headstart on the protocol.

    I have worked hard over the years to keep my yeast problem at a minimum, and intend to do another quick "cleanout" after my viral problem is under control (and before starting the methylation protocol).

    My experience is that I do not respond well to antibiotics, and so I do not intend to make an active effort to eliminate bacteria with them before starting the methylation supplements. However, my doctor believes that combining the strengthening of my system with the decrease in viruses will help my own immune system to start functioning again on its own. (Based on my subjective observations, this seems to be happening at present with regard to viral killing.) If so, perhaps it will be able to kill some of the bacteria I know I have present (e.g. I have tested positive for chlamydia pneumoniae) on its own.

    It also is worth noting that I have worked extremely hard to build up my system over the past decade and achieved a pretty high level of functioning due just to that prior to my AV use. (The fact that my CFS symptoms were relatively mild is especially surprising considering that it seems that my viral problem is especially strong.)

    So upon reflection, by the time I start the methylation supplementation, I already will have by and large completed the initial step of Yasko's full protocol. All things being equal this would not have been my intention (I tend to dive right into things!), but it is my hope that having done them will allow me to make speedy progress in terms of eliminating the remaining toxins, increasing Krebs cycle functionality, and restoring methylation so that I can stay well long-term.

    This obviously is a compex plan and is subject to a lot of things going right. On the other hand, if some things don't go quite right, it seems like others in the plan conceivably might make up for this. So we shall see.

    I am increasingly convinced that getting well from CFS is a long-term process, and that getting well in less than a year or two no matter what we do is going to be unlikely for any of us. It therefore is unsurprising to me that people would not get entirely better in a matter of months as a result of the methylation approach. Based on my own and others' experiences as well as the theory though, I currently do believe that it has the potential of being an extremely valuable or perhaps even crucial element for those of us who hope to achieve a complete recovery.

    Best regards,

  11. mbofov

    mbofov Active Member

    I'm waiting until I see my doctor next week - I see him twice a year only for CFIDS. I sent him a copy of your paper and the protocol, and unless he has serious rational objections to me trying it, I plan to start the protocol near the end of June. I have family stuff before then so don't want to be detoxing then.

    My doctor is very well-read and knowledgable about nutrition and health at the cellular level, etc. He's also very open-minded and often will just say, try it, when I present him with something new as long as he has no substantive reason for believing something is harmful. I'll let you know what he thinks. Thanks for keeping track of us - this will be interesting --

  12. Catseye

    Catseye Member

    After treating myself for a very long time with diet and supps, I started the Folapro, Intrinsic B12 and RNA methylation support around May 11. I just got the phosphatidyl serine, the multivitamin and the Perque B12 May 23 and started them. I didn't have any detox symptoms after the first week of the Folapro and Intrinsic B12 so upped the dosage to 1/4 tablet twice a day.

    I had already been taking bioactive forms of many of the B vitamins, but not folic acid. It is apparent my body was starved for it as I've had increased energy since starting it and even more since doubling the dose. I also eliminated phosphatidyl choline and eggs from my regimen in the past week and noticed a difference.

    I guess you could say I'm doing a mix of the simplified protocol and the lengthy one because of all the other supps I have been or am taking now. Plus diet and lifestyle changes have been made months ago. I was able to stop taking the majority of supplements and am now down to vitamins, minerals, probiotics, amino acids and mito fuels like ribose and coq10. I have also started very small doses of injectable HGH and small doses of dexamethasone to help with adrenal fatigue.

    The methylation protocol seems to be the last thing my body needed to really jump start my liver back into shape and get everything running again. It's been a very long, hard road but I feel normal and I'm trying to recondition muscles that have just plain flabbed out from too little use. I am convinced I'll be back to normal before the end of the year. And then I'll just make sure this never happens to me again by keeping my body as healthy as possible.

    You sure came along at the right time for me, Rich. I'll never be able to thank you enough. I knew persistence would pay off, eventually; I never gave up trying to fix myself. I literally owe you my life - thanks!

  13. frankie78

    frankie78 New Member

    I am on valcyte now, 3 months. But plan to start the simplified MCB protocol when I'm done with the AV's. That should be in 3 to 6 months, or sooner if my body decides it's too much.

    Thank you so much Rich for everything you've done for us!

  14. elliespad

    elliespad Member

    I have started and stopped 3 times now I think.

    Took the Perque B-12, FolaPro, Intrinsic B12/Folate, SAM-e, PS-Complex. Within a week started having REAL changes. The POSITIVE results, were Improved Sleep (even without meds or supplements), off ALL supplements, Perspiration Resumed, Greatly Reduced Pain.

    The Negatives were, BURSTING chest/heart pain, Migraine (not just in head), Feeling too much thyroid (believe thyroid was waking up), unbearable weakness, increased Sensitivity to Sulfites and MSG. Heart POUNDS, and does NOT respond to Tenormin.

    Stopped Methyl supps but even several weeks after stopping, continue with symptoms.

    Will make many efforts to resume/continue, but for now, the daily cardiac symptoms are unacceptable. And, I am having even more trouble standing. (One to three minutes is hard)

    I still believe this is the Road to Wellville and appreciate all you are doing to help us Rich. I also have increased Scrambled Brains and can make NO SENSE of Upregulation, Downregulation stuff. If I had some "one on one" help, I might be able to get past it, but I can't even make sense of what tests to ask for.

    If I were to order a book, which one would you suggest I start with?
  15. SnooZQ

    SnooZQ New Member

    I'm following the MP threads with great interest. I have fibro/CFS/MCS plus autoimmune issues, and I have a teenage son who is on the autistic spectrum.

    I am not doing the standard simplified protocol. I am doing the chicken protocol: 200 mcg. folinic, extra mB12, 200 mg. SAMe, 500 mg MSM. I take these supps 2 days on, 1 day off, and have been doing this for close to 3 weeks.

    It seems that my sleep is deeper on the days that I take the supps, and less deep on the day off. My lymph nodes seem to flare up, esp. on the 2nd day of supps, receding on the day off. My appetite increases substantially when I take the supps, and that is probably a good thing for me these days.

    Pain, fatigue, sensitivities, and "hitting the wall" are still a problem -- but I have also been a *shade* more active, and a *shade* less totally disabled at the end of the day.

    I had previously been having difficulty with SAMe-induced solemnolence, but this has not been a problem since adding the folinic & extra mB12. Not sure why.

    In the near future I plan to add some PC, try switching out my regular multi with the Holistic Heal General multi, and try a few EDTA foot baths.

    Best wishes to all.

  16. Elliebabe

    Elliebabe New Member

    I've been on the protocol for around a month. I can only tolerate the supplements for around 2 days a week.
    The supplements bring on fairly strong detox, the two most difficult are the achiness and the scattered brain feeling oh and also the depression.
    I have a 2 year old and want to enjoy this time. I'm 42 so this will be the last one.
    I think that the detox is a good thing, I just haven't started feeling better yet.

  17. virtuoso

    virtuoso New Member

    Hi, Rich.

    I am still in the process of incorporating all of your recommendations that you were so kind to make to me after looking at my Metametrix test.

    The only supplements that I still have not added yet are DMG, ( I am still taking TMG), Phosphatidyl Serine complex and Lactoferrin. DMG is on my list to start tomorrow and I will follow it with PS soon thereafter. I have already purchased Lactoferrin but I am not so sure if it is OK for someone who has very low ferritin. My number was 16 (11-264), % saturation also 16 (20-45). What do you think, Rich?

    Otherwise, I am so very pleased that I am getting such great results in such a short period of time – so much more energy and endurance. I have not experienced much of a die-off effect, though, except maybe for some frequent headaches, being very agitated, sometimes nauseated and having fluctuations of feeling feverish and cold and being excessively impatient, anxious and irritable.

    I am still giving myself MB12 injections everyday, and now my DAN! wants to start me on glutathione IV push. He may not be very happy if I refuse to do it, and so I decided to give that a try also. He knows about Yasko protocol, but unfortunately does not appear to be too receptive to it. I hope I still have enough brain power left in me to continue with your approach to methylation block treatment without his help.

    I hate to jinx it but this is the best I’ve ever felt in more than 17 years of being sick.

    I am ready now to start increasing my dosages and hope for the best.

    Many thanks again for all your great work!


  18. richvank

    richvank New Member

    Hi, all.

    So far, I've heard from twenty-three PWCs who are trying at least some variant of the simplified treatment approach, counting those on this board and those from other groups.

    It appears that most are taking other supplements or medications in addition, but I'm hopeful that this will not affect our ability to see an overall pattern in the results, since I believe that the treatment is addressing the root issue in the biochemistry of CFS, i.e., a block in the methylation cycle. Time will tell.

    I very much appreciate your willingness to try this, and am very hopeful that it will pay off for you. I will respond to the questions some of you have raised as I can get to them.

  19. wld285

    wld285 New Member

    Hi Rich,
    I just finished a post saying my doc on Thurs. had the attitude I could try if I wanted to, but he more or less was telling me it wouldn't work. Actually, I was very surprised, I expected to get a better response from him.

    I am having a change in my thyroid med, so have to wait a couple of weeks. I will be ordering what I need, but have learned only to start 1 new thing at a time.

    Thanks soo much for all the time you put in this board. I think it is appreciated more than you know.
  20. LymeGYN

    LymeGYN New Member

    I plan suggest this protocol this coming week. What interests me most are those people it does not help.
    Can patients be on antivirals when they start the protocol?