rich, another question

Discussion in 'Fibromyalgia Main Forum' started by joanierav, Sep 7, 2012.

  1. joanierav

    joanierav Member

    ive started the methylation protocol, about 7 mos. ago. first with the multi, and just this wk started the b 12 lozenges. as i mentioned to you before i wanted to start very slowly. cant tell on the lozenges, as i just started them. but my question to you is this:

    you have always said to make sure you do this protocol with a physician and with the methylation panel blood work. well i did not do either. i cant find a doctor who knows anything about this. will these supplements hurt me, if i dont have a methylation block?

    many thanks for all your help.

    love, joanierav
  2. joanierav

    joanierav Member

    i got to thinking about this , because yrs ago my cfs doctor gave me glutathione injections and i didnt feel any better or worse. i saw no difference. so was thinking maybe i dont have methylation block. because so many ppl on this board report feeling better when they started the gluthione alone. but i know you have advised against this.

    thanks again. joanierav
  3. elliespad

    elliespad Member

    Hi joanie, Just wanted to give you my 2cents. I too took IV Glutathione injections, maybe about 10 or 15 of them. I never felt any different, with one HUGE exception. My Multiple Chemical Sensitivities went away, to where I would say I no longer suffer from that.

    Then, back in 2007, I started the Methylation Protocol BUT I remember I took too much of a couple supplements, the folate and TMG (I think). When it kicked in, it kicked in HARD. I was SO sick, SO severe, with Thyroid and Cardiac symptoms, I spent a night admitted to a Cardiac unit, for observation. I was scheduled for a complete Thyroidectomy (unrelated to this Methylation trial) and have never had the courage to try it again. That's how sick it made me. I am hoping to build up the courage to try it again this year. So, don't assume that because you had no response to the IV Glutathione that you won't respond to the Methylation treatment. But DO go slow, it can sneak up and BITE you hard. I've not had the Methylation testing, but do have the
    MTHFR gene defect.

  4. joanierav

    joanierav Member

    thanks so much for responding, really appreciate your input. my reasoning for my question was, being that i didnt have any reaction from the qlutathione injections, that i probably dont have a methylation block. because if i had a blockage i probably would have felt a bit of energy from them, like most ppl have reported on this board. just guessing here.

    like i mentioned , i had no side effects with the multi (in the protocol) but when i added the perque b 12, i had cfs relapse one wk later.(and i even broke it in half) now, i did over do with overnite company for one wk. , so it very well, may have been that. so i stopped the perque .for a few days , will resume it when this relapse passes. the problem started, when i added the both together. the multi was fine when i took it alone. i am only starting one at a time. have not done the folates yet or the lecithin. as i try each one for a month, before i add another.

    i would love to have the mthfr test done . but what doctor does that?

    my question also was. would this protocol give side effects or hurt us, if we dont have the block. since you also never had the methylation test, maybe thats why you got so sick and ended up in hospital. just guessing here.

    hopefully rich will read this .

    thanks so much ellie, was so good hearing from you. hope you are feelilng as good as you can, with all these symtoms that one gets from this dreaded illness.

    love, joaniexoxo

    i will go slow, thanks for the reminder to do so.
  5. richvank

    richvank New Member

    Hi, joanie.

    I'm sorry to hear that you had a relapse when you added the B12, whether that was the cause or not.

    With regard to adverse effects from the methylation protocol, if a person did not have a partial methylation cycle block, I would not expect them to experience adverse effects from this protocol. Whether they would experience positive effects, I don't know. It would probably depend on whether they had some nutritonal deficiencies that were corrected by the protocol.

    In your case, you noted that you have not run the methylation pathways panel, so do not know whether you have such a partial block. I can tell you now, based on seeing a lot of these test results over the past five and a half years, that if a person has ME/CFS, based on the classic symptoms, including postexertional fatigue or malaise, it is almost certain that they do have a partial methylation cycle block.

    With regard to glutathione injections, these have not been found to be a very effective way of raising glutathione in the cells of most of the body tissues. While some people have experienced temporary benefit from them, they have not been effective in raising low glutathione bodywide.

    So far, the only way we have found that will do this is to treat to lift the partial methylation cycle block. When this is done, glutathione is observed to come up to normal automatically, without direct supplementation.

    When a person who has a partial methylation cycle block goes onto this protocol, usually their symptoms get worse at first. Sometimes this lasts for a couple of weeks, but then there is usually improvement, and by three months, it is usually substantial improvement.

    I think the reasons for this are several: one is that glutathione initially goes down even further, because homocysteine is diverted back to methionine, and less is available at first to support making glutathione.

    Second, a potassium deficiency can develop, producing muscle cramps or arrhythmia, because of the formation of new cells, which require a lot of potassium, so this may need to be supplemented.

    Third, the detox system begins functioning better, and toxins are mobilized on their way to excretion, which causes a temporary toxic feeling.

    And fourth, the immune system begins functioning better, and there is die-off of pathogens, which can produce symptoms.

    There have been a small number of people who have experienced what I would call serious adverse effects, as has been mentioned above. That's one of the reasons why I recommend that people work with their physicians while on this type of treatment. These serious adverse effects have been relatively rare, but they are very significant for the people who do have them.

    I'm glad that you have been coming up slowly on the supplements. I think that's a good approach.

    Best regards,


    [This Message was Edited on 09/08/2012]
  6. joanierav

    joanierav Member

    thank you so much for your quick response. very much appreciated. you're the best!!!!

    i will keep you posted on my journey with the protocol, and will try not to bother you with too many questions.

    love, joanie
  7. mbofov

    mbofov Active Member

    It is quite possible that the methylation protocol greatly increased your need for potassium, which could have caused the cardiac symptoms you experienced. When I started taking folate and B12 on another protocol (by Fredd of Phoenix Rising), after feeling good for 2 or 3 days I hit a wall with extreme fatigue and other symptoms and luckily deduced that my potassium had tanked (Fredd had warned to be on the lookout for this).

    As Rich says, the protocol can cause a rather sudden increased need for potassium, and very low potassium can cause cardiac symptoms and severe fatigue and other symptoms.

    My symptoms cleared rather quickly when I added in potassium, titrating up to around 1,000 mg. a day, and now I take a maintenance dose of 4,000 mg. a day.

  8. elliespad

    elliespad Member

    Yes it's quite possible some of my symptoms were related to potassium depletion, but I think what likely happened is that I was hypothyroid, had HUGE retrosternal autonomous multi nodular goiter and scheduled for thyroidectomy (for the second time!) and I think the thyroid came alive due to the methylation supplements and because I was taking thyroid hormones, think I became hyperthyroid.

    And, Joanie, it was Dr. Bock, in Rhinebeck, NY who ordered the MTHFR test. I am not seeing him anymore. Wasn't doing much of anything for me, was VERY expensive and his satellite office I was using was very inefficient, to put it mildly.

    I am sure Rich is on the right track with his research and treatment trials and am eternally grateful to you Rich for all you do for all of us. Thank you.