List of people who have started the methylation treatment

Discussion in 'Fibromyalgia Main Forum' started by richvank, Jul 5, 2008.

  1. richvank

    richvank New Member

    Hi, all.

    I think it might be helpful to try to get together a list of everyone who has posted to this board who has started the simplified treatment approach for lifting the methylation cycle block, part of it, or something similar or preparatory to it. Below is my attempt at doing so, after searching the archives. This preliminary list comes to 55 people. [Note: As of August 31, 2008, this total has been revised upward to 69 people.] I realize that there are others on the Yasko list who are doing this treatment, and some post to both, but this list is intended to include those who have posted here. There are also others who have expressed the intent to start the treatment, but I don't know if they have actually done so.

    If I have left anyone off who should be included, please let me know.

    I would like to tally up how many are still doing the treatment and how many have stopped. I have some information about this from the archives, but would appreciate it if those who are still on the board would note whether they are still doing the treatment or have stopped. There's no obligation to check in, and I don't plan to use the results for any formal purpose. Just trying to get an informal head count to see how things have gone with this treatment over the past year and five months or so since it's been out there. Thanks very much.


    [This Message was Edited on 08/31/2008]
  2. richvank

    richvank New Member

    Argh! How could I have done that? Thank you, I've edited you in! Can I plead memory and cognitive lapses?

    [This Message was Edited on 07/05/2008]
  3. Dlebbole

    Dlebbole New Member

    I'm still taking just a speck of folapro (diluted).

    The more I read and learn about it, the more sense it makes to me. But as I've said, I enjoy my "half life" too much to give it up to big herxes. So I will continue very slowly.
  4. richvank

    richvank New Member

    Hi, Dlebbole.

    Sounds good. Thanks for checking in here.


  5. richvank

    richvank New Member

    Hi, slayadragon.

    I made both changes, thanks. And thanks for the forgiveness!

    Yes, it's been a long time since we've heard from Irgatplay. I wonder how she and her son are doing, too. That's one weird thing about the internet. People are very easily lost in e-space.

  6. Slayadragon

    Slayadragon New Member


    as in


    I think her name was/is Lisa

    (Also, thanks for your comments about Deplin. I forwarded them to my doctor. He's doing my slow Vitamin C pushes and so I get to spend about 20 minutes with him twice a week. After about 15 sessions, I've gotten him really and truly excited about all the Shoemaker stuff and increasingly interested in your stuff. Guerrilla Medicine progress!!!)
  7. mbofov

    mbofov Active Member

    Hi Rich - thanks for your continued interest in all of us! I've been doing the simplified protocol off and on for about a year now, although probably more off than on the last 6 months or so - it still makes me detox a fair amount so have to keep stopping it when something comes up that I need to do.

    But I finally got the complete vitamin formula from Holistic Health- I'd been doing without it for financial reasons and finally decided to add it in, so next week will be restarting, this time with a quarter tab of the multivitamin.

    I still crash quite regularly when I overdo things, which sometimes does not take a whole lot, so it's discouraging in that regard. However, my crashes are lighter, and I seem to get over them a little quicker. So I think I've made a little progress, which motivates me to keep trying.

    Thanks again for all your work on our behalf - it's been invaluable --

  8. richvank

    richvank New Member

    Hi, slayadragon.

    Finally, I GET it. lrgatplay. I fixed it and put it in the right alphabetical slot.

    Your doctor sounds good. Guerrilla Medicine, huh? Cool!

  9. richvank

    richvank New Member

    Hi, Mary.

    You're certainly welcome. I'm glad to hear that you're still hanging in there, and hope it pays off for you sooner rather than later.

  10. Forebearance

    Forebearance Member

    I've been taking tiny amounts of the two folates and the Perque B12 for 15 1/2 months straight. I wouldn't be without them.

  11. richvank

    richvank New Member

    Hi, Forebearance.

    Thanks for checking in. I'm glad these amounts are helping you. Different people seem to need quite different dosages in some cases.

  12. Diva55

    Diva55 New Member

    Hi Rich
    I started in June07 but had to give up in Sept07 due to reasons not connected with the protocol.

    I tried to re-start in Jan08 but had to give up again due to many medical issues. My doctor said I could carry on but I was dealing with lots of problems & didn't want to cloud the issue of Methylation.

    So up to date I've re-started again (7 days ago) & hopefully I will be able to get a straight shot at it.

    I'm taking the Basic 5 at the recommended starting doses & will add in a few extra supports as I go along.

    I know you check on the CFS Yahoo group where I think quite a few people from here have migrated to concentrate on the protocol without getting slammed by different people.

    Thanks for checking in and for continuing to support us.

    Best wishes

  13. richvank

    richvank New Member

    Hi, diva55.

    Thanks for posting on this thread. I hope you will be able to get some significant benefit from the treatment this time around. I realize that it can be a difficult treatment to stay with, and taking a break can be very helpful.

    Yes, I'm following the other list, too.

  14. desertblue

    desertblue New Member

    I have begun the short protocol and plan to get the Yasko genomic testing soon. I am currently at a daily dose of 1/4 Folapro, 1 phosphatidyl serine cap, and 2 of the general multis from Yasko. I have been doing cyanocobalamin injections for a year now (3,000 mcg two times a week) along with 2 to 3 5mg methylcobalamin sublinguals daily. Have found that prescription enzymes (Pancrease) help tremendously. I also take many other supplements to support my body.
    I have combined the CAP protocol with the Yasko methylation treatment, and have also used Valtrex in the past for 5 months to treat chronic EBV.
    Can't remember if I have any info in the profiles section, but if not: diagnosed with chlamydia pneumoniae 5 1/2 years ago (no prior health issues, very active and felt healthy until unable to recover from what seemed like a cold/flu), 53 year old female.
    I haven't noticed terrible reactions to the Yasko protocol, but about 1 month ago (about 3 months into the simplified Yasko) I began to feel more energized and able to recover faster from my work week. Hoping to continue this upswing and eager to come out of hibernation.
    Desert blue
    [This Message was Edited on 07/06/2008]
  15. cct

    cct Member

    Hi Rich,

    I started the Simplified Approach about a year ago.

    I have been pretty good about taking the supplements just about every day. Perhaps I have missed a total of 15 days during the past year.

    As so many of us CFS people are doing, I am also taking a wide variety of other supplements . . . .vitamin D3, Pantethine, K & K2, enzymes of all kinds, probiotics of all kinds, lots of minerals, virastop, etc., etc., etc. (I would be happy to provide you with a complete list if you would like to know.)

    And, I have just started with the MMS (chlorine dioxide)protocol.

    So it is pretty difficult to evaluate the effect of the Simplified Approach due to all of the other influences. However, I do plan to continue with the Simplified Approach until . . . . I don't know, maybe for the rest of my life!


  16. richvank

    richvank New Member

    Hi, desertblue.

    Thanks for the information. I've added your name to the list. I hope your improvement continues swiftly!

  17. richvank

    richvank New Member

    Hi, cct.

    Thanks for posting here. Sounds like you're giving it the Full Whammy! I'll be interested to hear how you and Wayne do with the combined MCB and MMS, as well as the other things you're doing.

  18. tooks

    tooks Member

    Yup, still at it. Also take other supps to support the body.

    Right now I am at 1/2 each of FoloPro and the Intrinsi/B12/folate, 1 Perque, 1 Phos Serine, 1 Yasko multi and 200 mg of SAMe. Plus, when not in an active detox period, I nebulize 4000 mcg of hydrox with just a few mg of reduced glutathione.

    Slow, steady detox with occasional intensificatons that take about 3 weeks to go through--I'm in one now. Then I generally feel better and am able to up dosages a bit. Which brings a question: how high should we go on the various ones? I remember that it is 2 for the multi--what about the rest?

    And is it good to keep them more or less in the same ratio we started with, or does that depend somewhat on the SNPs we have? (I haven't been tested)

    Progress: definitely increased stamina and don't crash unless I way overdo physical exertion. In the first month (I've been on them about 7 months) there was a marked burst of new energy. Since then it has been slow and steady increases except for the big detox times.

    Can't tell you how much I appreciate all the work you've done and the fact that you take such care in hanging in with us.

  19. richvank

    richvank New Member

    Hi, Susan.

    Thanks for posting the update. It's nice to hear that you are continuing to get improvement, though the detox is mixed in with it.

    I have to refrain from making individual treatment suggestions here, but as far as dosages are concerned, I think that the best way to see what a person needs is to run the methylation panel. Not cheap at $300 a pop, but it does give you an idea about where you are. I don't have much experience yet with adjusting dosages using repeat methylation panel testing, but am working with a doctor who recently asked me for recommendations for three people who got a test 3 months into the treatment. They were all different, in terms of whether they appeared to need more B12, more folinic or more FolaPro. He's going to make the adjustments in their dosages that I suggested, and we'll see if it helps them. We are doing the research on this treatment in real time while people here are using it, so you are all pioneers, and we have to try to make decisions by the seats of our pants, so to speak, until there are more research results available. Very soon I will be receiving the 3-month results (half-way through) for the 30 women in the research study, so hopefully I will know more after I've had a chance to study them.

  20. simonedb

    simonedb Member

    I ordered some supplements like folate which should get here soon and have started taking the phospahtidyl which seems quite powerful itself but need to reorder it because the one I bought has choline and inositol in it and I would like to see how it is with just serine. It can be quite uncomfortably sedating to me and at other times induce a pleasant peaceful feeling. I will most likely be doing small amounts of stuff and experimenting because just looking at me sideways can make me herx.