what is the basic methylation protocal for CFS?

Discussion in 'Fibromyalgia Main Forum' started by krock, Mar 29, 2009.

  1. krock

    krock Member

    I have seen this mentioned, but want to know the specific drugs/supplements. I saw a new doctor last week, and he wants to do IV Meyer's cocktail and glutatione injections. Is that the same thing?
  2. richvank

    richvank New Member

    Hi, krock.

    Here is a section taken from our recent IACFS/ME poster paper that details the protocol:

    Supplement Protocol

    The treatment protocol used in this study was extracted from the full treatment program developed by Yasko for the treatment of autism and adult neurological diseases [4]. It consisted of five supplements:

    1. FolaPro [7] (5-methyl tetrahydrofolate): ¼ tablet (200mcg) daily
    2. Intrinsi B12/folate [8]: ¼ tablet daily (Combination of [folic acid, 5-methyl tetrahydrofolate, and folinic acid] (200 mcg), cyanocobalamin (125 mcg), calcium (22.5 mg), phosphorus (17.25 mg), and intrinsic factor (5 mg) )
    3. General Vitamin Neurological Health Formula [9] (a multivitamin, multimineral supplement including antioxidants, trimethylglycine, nucleotides, supplements to support the sulfur metabolism, a high ratio of magnesium to calcium, and no iron or copper): starting with ¼ tablet and increasing the dosage as tolerated, to 2 tablets daily
    4. Phosphatidyl Serine Complex [10] (phospholipids and fatty acids): 1 softgel capsule daily
    5. Activated B12 Guard [11] (hydroxocobalamin): 1 sublingual lozenge (2,000 micrograms) daily

    These supplements are all available from www dot holisticheal dot com, or all but the third one can be obtained from other sources.

    My position is that a person must be monitored by a licensed physician while on this treatment, even though it consists only of nonprescription food supplements. A small number of people have experienced serious adverse effects, as I discussed in my post to this board on July 18, 2007.

    The IV Meyer's cocktail and glutathione injections can provide temporary benefit in CFS, but my experience is that they do not address the vicious circle mechanism that prevents glutathione from coming up on a permanent basis. This treatment that addresses the methylation cycle partial block appears to do that.

    If you think your doctor may be interested in this treatment, I would be happy to send him more information. It would be helpful if you could send me his email address at richvank at aol dot com. There is a growing number of physicians who have incorporated this treatment and are finding that it benefits their patients significantly.

    Best regards,

  3. kat0465

    kat0465 New Member

    can you post what the serious side effects would be on this Protocol?? i am really considering trying it. and i do see My doc every 3 months. I'll be seeing her again in April, and would like to give her all the info i can.
    i have been trying several supps on my own and had to Quit most of them and start more slowly, as i was having some stomache issues, and didn't know which one was giving me the problems.

    If im Not mistaken, my doc has given me some papers on things you have written, but if i remember right she hasent mentioned the methylation treatment.
    But at this point, it's probably the only thing i haven't tried.
    thanks, Kat
  4. richvank

    richvank New Member

    Hi, kat0465.

    Below is a repost of a section of my post of July 18, 2007, which discusses the adverse effects reported up to that time. Most of the people involved are still posting to this board, and could probably give updates on their conditions if they choose to. We did not observe any serious adverse effects in the recent clinical study conducted by Neil Nathan, M.D. The only other one I have heard of is that a patient whose Lyme disease had been controlled with antibiotics had a flare after starting the methylation protocol, and was put back on antibiotics.

    If your doctor would like more information on the methylation cycle block treatment, I would be happy to send it to her, if you can send me her email address at richvank at aol dot com.

    1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: “Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . .” This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: “I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest.” This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.

    2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.

    3. A third person had a history of autoimmune disease, including Sjogren’s syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced “a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc.” She also experienced a severe flare of Sjogren’s syndrome, with “very dry mouth, dry eyes, and severe eye pain.” Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.

    4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with “vomiting, vise-like headache, and shaking.” She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogren’s syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction.

    Best regards,

  5. kat0465

    kat0465 New Member

    as i have some heart issues too, but im willing to try it. so far nothing much has helped, ooh and as soon as i find my Dr's card i'll give you her e-mail addy. Her name is patricia Salvato, don't know if your familiar with her.
    thanks again,Kat
  6. znewby

    znewby Member

    I tried the methlytion supps too. I managed to gradually build up to taking 4 of the supps by the 8th day. I stopped taking them so fast because I developed such a problem with gas. Let me tell you I have wanted to try them again but .. I was just wondering tonight if I seriously took jarro-dophilus and digestive enzymes too that might make a difference.
    [This Message was Edited on 03/30/2009]
  7. krock

    krock Member

    I am not sure if this new doc will be on board. He seems to have his own one approach fits all philosophy. Would you happen to know of any doctor's in the Cincinnati, Ohio area that are on board with your protocol?

  8. SpecialK82

    SpecialK82 New Member

    Hi Krock - Welcome to the Boards, I noticed that you joined recently.

    I live in Cincinnati also, can you tell me what CFS doctor you have found? I cannot find any locally. I have thought about going to Dr. Dale Guyer in Indianapolis.

    I too have just ask Rich (by email) for any docs in this area, so hopefully he will have some ideas.

    It's great to have you here! You will find plenty of resources and support on this site.

  9. krock

    krock Member

    Thanks for the welcome. I have not found any doctor locally to treat me. Have you? I haven't even been able to find a good PCP?
  10. Forebearance

    Forebearance Member

    Welcome, krock!

    I've heard very good things about Dr. Guyer. He's not cheap, though.

    For what it's worth, Kat, I had the typical diastolic dysfunction of the heart that comes with CFS and the methylation supplements didn't bother my heart at all.

  11. SpecialK82

    SpecialK82 New Member

    Thanks for posting your doc. I read on your other post that he mentioned about methylation. How great that it's getting out.

    So are they supporting you in using Rich's protocol? If so, can you tell us how long you have been doing it, and how much of a difference you feel?

    Thanks so much!

  12. krock

    krock Member

    I have called Blatman Clinic before, and they do not accept any insurance. I did some online reading about Dr Guyer and the LaValle Institute, and it appears neither of them accept insurance either. Can anyone verify if that is the case?

    I am not working and have been denied for disability, so have no income, so it is hard for me to pay much out of pocket.

  13. panthere

    panthere Member

    I am a patient of his and he doesn't take insurance. He's super expensive! But I submit my claims to insurance and they pay some part of it once in a while!