Starting the Methylation Protocol

Discussion in 'Fibromyalgia Main Forum' started by SaoirseDee, Mar 29, 2011.

  1. SaoirseDee

    SaoirseDee New Member

    Hello, I'm planning to start doing the Methylation protocol. I wonder if there's any updates on what supplements should be taken?

    How's the progress/improvements on anyone doing the protocol?

    Thanks.
  2. mbofov

    mbofov Active Member

    I don't think there have been any updates since 4/09 (see list below). I've been doing the protocol off and on for over 3 years - unfortunately my progress is very very slow. I'm still detoxing on 1/4 tab every other day. From what I understand this is atypical, most people show more improvement more rapidly. My CFS crashes are lighter, I get over them quicker since starting the protocol, but still crash with depressing frequency. Hopefully you will do better than me!

    Best wishes,

    Mary

    SIMPLIFIED TREATMENT APPROACH
    FOR LIFTING THE METHYLATION CYCLE BLOCK
    IN CHRONIC FATIGUE SYNDROME (Revised)

    (Extracted from the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])

    SUPPLEMENTS

    1. FolaPro [2]: ¼ tablet (200mcg) daily
    2. Actifolate [3]: ¼ tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
    4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
    5. Activated B12 Guard [6]: 1 sublingual lozenge daily

    All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
    The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


    [1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
    [2] FolaPro is a registered trademark of Metagenics, Inc.
    [3] Actifolate is a registered trademark of Metagenics, Inc.
    [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
    [6] Activated B12 Guard is a registered trademark of Perque LLC.
  3. kat0465

    kat0465 New Member

    Same here, trying to figure it all out with foggy brain is making it hard for me. Please keep us posted on your progress.

    Kat
  4. richvank

    richvank New Member

    Hi, SaoirseDee.

    As of today, I am suggesting a revised form of the Simplified Treatment Approach for lifting the partial methylation cycle block i ME/CFS. The revised form is shown below.

    The changes involve using liquid supplements where possible, and a capsule rather than a tablet, so that dosages can be divided more easily. Hopefully this will be more convenient than having to split tablets.

    I've eliminated folic acid from the protocol in favor of the active, reduced forms of folate, exclusively, since folic acid is not readily utilized by some patients, and it competes with the active forms for absorption.

    I've also provided for use of lecithin in place of phosphatidylserine complex, because the latter can decrease cortisol in patients whose
    cortisol is already too low.

    I would appreciate any feedback on how this works out for you, if you decide to try it.

    Best regards,

    Rich


    March 30. 2011


    SIMPLIFIED TREATMENT APPROACH
    FOR LIFTING THE METHYLATION CYCLE BLOCK
    IN CHRONIC FATIGUE SYNDROME—March 30, 2011 Revision
    Rich Van Konynenburg. Ph.D.
    (Based on the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])

    SUPPLEMENTS

    1. General Vitamin Neurological Health Formula [2]: Start with ¼ tablet and increase dosage as tolerated to 2 tablets daily
    2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
    3. MethylMate B [4]: 3 drops under the tongue daily
    4. Folinic acid [5]: ¼ capsule daily
    5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

    All these supplements can be obtained from http://www.holisticheal.com.
    The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
    Phosphatidyl serine can lower cortisol levels. Patients who already have lower than normal cortisol may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

    [1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.
    [2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
    [4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
    [5] Folinic acid is 5-formyltetrahydrofolate. ¼ capsule is a dosage of 200 mcg.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
    [7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.
  5. SaoirseDee

    SaoirseDee New Member

    I see that we no longer use FolaPro and Actifolate (or is it Acetifolate?)!?
    I also would like to know if I could get the supplements from other sources besides holisticheal.com? Just wondering, maybe I can get it for lower prices.
    I just ordered the General Vitamin and would star with that as recommended. I'll let you know how I'll be doing on the protocol. I'm hopeful yet anxious.

  6. richvank

    richvank New Member

    Hi, SaoirseDee.

    The General Vitamin in the protocol is supplied only by holisticheal, but I think the others, or equivalents to them, can be gotten from other sources. Some people have substituted other multis, and they may work fairly well, but this one has some specific supplements in it for supporting the methylation cycle and related pathways.

    There are now several variants of methylation treatment being used, and it's difficult to say which is best, because there hasn't been a comparative clinical test of them. Also, people have differing genetic polymorphisms, so the same treatment is probably not optimum for everyone.

    The protocol I am suggesting is a compromise, attempting to keep it relatively low in cost, relatively uncomplicated, and relatively easy to administer.

    The essence of all these protocols is a high-dose B12 form together with an RDA-level dosage of active folate. One protocol uses high-dose folic acid instead of active folates. The rest are supporting nutrients. Some of these are very important if there are deficiencies in a particular person.

    Best regards,

    Rich
  7. SaoirseDee

    SaoirseDee New Member

    Just wondering if it would be a good idea doing methylation protocol, heavy metal/toxins chelation and treating HPU/KPU at the same time?

    Any recommended chelation agents?

    Some people with CFS also use magnesium to calm the nerves. What kind of magnesium is usually used? I read that transdermal magnesium chloride is best absorbed?

    As for HPU/KPU treatment, I'm thinking about taking The Core by BioPure.[This Message was Edited on 04/02/2011]
  8. richvank

    richvank New Member

    Hi, SoirseDee.

    I favor testing to see what the issues are first, if feasible.

    If HPU/KPU is present, it will deplete several of the cofactor vitamins and minerals needed by the methylation cycle and related pathways, so if it is present, it will need to be dealt with before the methylation treatments would help. Dr. Klinghardt reportes that in many of his Lyme patients, HPU/KPU treatment will automatically bring up the methylation cycle, but I'm not sure if that's true in all cases of ME/CFS.

    If heavy metals levels are sufficiently high, they will also block the methylation cycle, so if present, they may need to be dealt with before treating the methylation cycle, too.

    Magnesium glycinate is the best absorbed oral form of magnesium.

    I urge you to work with a physician who is knowledgeable about these aspects, because there can be serious adverse effects in some cases when these things are treated.

    Best regards,

    Rich
  9. LittleBluestem

    LittleBluestem New Member

    The magnesium that several of us with CFS take to calm our nerves and/or help with sleep is Natural Calm by Peter Gilham. It is ionic magnesium citrate. It is a powder that is dissolved in hot water for consumption, which I assume increases its absorbability, but it still may not be as absorbable as magnesium glycinate.
    [This Message was Edited on 04/11/2011]
  10. SaoirseDee

    SaoirseDee New Member

    Just wondering if FolaPro, MethylMate and Metafolin are the same?
  11. richvank

    richvank New Member

    Hi, SaoirseDee.

    Yes, they are the same (so long as you are talking about MethylMate B, not MethylMate A, which is different). Also, Deplin (a prescription "medical food") is the same substance as well, but in much larger dosages.

    Best regards,

    Rich
  12. SaoirseDee

    SaoirseDee New Member

    What Detox symptoms are you experiencing on this protocol, and what improvements so far you have?

    Thank you.
  13. mbofov

    mbofov Active Member

    SaoirsDee - since posting what I wrote above on 3/30, I've been reading new information from Freddd, a member of the Phoenix Rising forum (http://forums.phoenixrising.me/forum.php). He has been posting a lot of information under the section titled Detox: Methylation ....

    Anyways, he is theorizing that the detox symptoms reported by so many people with CFS (including me) while following the simplified methylation protocol, are actually not detoxing, but symptoms of folate deficiency induced by folic acid and folinic acid. I can't give you the chemistry here, you can check out his posts.

    My symptoms on the methylation protocol which I attributed to detox for the past almost 4 years are loss of appetite, fatigue, lightheadness, loss of energy, generally feeling like crap. I would keep starting then stopping the protocol when the symptoms got to be too much.

    After reading Freddd's (yes, 3 "d"s ;) posts, I am seriously wondering if all these symptoms have been caused paradoxically enough by a folate deficiency, as he is suggesting.

    So I am now doing what he suggests: cutting out anything with folic or folinic acid (including the neurological formula), stopping the l-glutathione I was taking, stopping n-acetyl-cysteine as well, and am starting to take:

    Metafolin (the only form of folate which he says is good), methylcobalamin B12 (I've been doing shots for several years and am adding sublingual), AD B-12, carnitine fumarate (I've been taking acetyl-l-carnitine for several years with no noticeable effect - he says the fumarate form is the best). He also says to have potassium on hand because doing all this may induce potassium deficiency - I don't know the why of this or even the symptoms and want to get more info from him.

    Here's more info on Freddd's suggested protocol:
    http://forums.wrongdiagnosis.com/showthread.php?t=62327

    So far I seem to be tolerating the Metafolin without the loss of appetite etc., and the two B12s and the carnitine fumarate. It's too soon to tell how it will pan out as I've only been doing this for about 2 days.

    I'm not recommending either Richvank's or Freddd's protocols here, just giving my experience.
    I know many people have been helped by the simplified methylation protocol, but my progress on it was so very very slow (lighter crashes although no more stamina), I am beginning to wonder if it just due to eating well and my other supplements.

    I wish we had a crystal ball! or some serious funding for research --

    Best wishes,

    Mary