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THE METHYLATION CYCLE BLOCK SIDE EFFECTS ???

Discussion in 'General Treatment' started by AndrewB, Sep 27, 2011.

  1. AndrewB

    AndrewB Senior Member

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    England, UK
    My question is for those who have tried the simplified protacol.
    With fatigue and pain, trouble breathing is also one of my main normal symptoms of ME/CFS when im in a state of relapse.

    I took the protacol for the first time yesterday, and experienced an increased heart rate, a racing of my senses, an upper feeling
    akin the side effect that many, including me get from steroids like prednisolone, which would feel like a prelonged panic attack coupled
    with the increased heart rate (im using that as an example, it wasnt a panic attack)
    A strange warm sensation in my chest, burping and a tight throat.
    Increased urination. And my body running hot and cold.
    All things i could have easily put up with is it werent for it worsening my breathing, which isnt great at the moment, but much
    better than it had been, say a few months ago.

    Can anyone indentify with any of these side effects at all ?
    And really imporantly, did anyone who had troulble breathing normally with ME take this protacol and find that breating
    became a little worse?
    I have no problems with Soy, or to my knowledge any of the other items used in the protacol, but the phyiscal effects
    were very very real.

    I reported this to rich, but im aware its not really possible for him to consult anybody over the internet about specific reactions
    to this protacol, so i ask anyone that is on it, or tried it to please reply and let me know thier full experiences with it.
    Im going to try it again today, but questions like "how long are these side effects expected to last", and "is it ok that someone
    with exisiting breathing problems finds breathing a little worse" would be very helpful for me to know right now.

    Andy
     
  2. Valentijn

    Valentijn Activity Level: 3

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    Some people have to start with very low doses of everything, so that might help you too. But it sounds a lot like the symptoms I get if I take 20mg of B12 at a time instead of 10mg (much higher than what the simplified protocol recommends). So your current limits for what you can handle may be much lower.

    Note that taking potassium is often helpful as well, either as a low/no salt substitute from the grocery store, or in pill form.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Andrew, very important question: did you take the full doses given in the protocol?

    For most of us, this is way too high a dose to start with. I had to start with tiny crumbs of the supplements and it took a long time to work up to a full dose.

    Best wishes,
    Sushi
     
  4. aquariusgirl

    aquariusgirl Senior Member

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    Good advice about only taking what you can tolerate...Also, I think it is very hard on the adrenals and they could probably use some support...but I think cortisol is a no-no if you have XMRV or MULVs..

    The other thing is to have chelators or binders on hand for any toxins that are being mobilised into the blood stream. OSR or Pecatsol or charcoal. Be careful with charcoal though, because it absorbs everything in the intestinal tract.

    You have to leave hrs before you consume anything else.. including food or the charcoal will absorb it.

    Personally, I am still not sure that methylation support is the best starting point... MIght be better to work on getting viral load down first, add methylation in later.
     
  5. gu3vara

    gu3vara Senior Member

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    I started a couple days ago and I'm experience symptoms similar to you (all of them, the breathing, anxiety-like symptoms etc...) but they are milder than yours I'd say. I went for 1 drop of methylmate, 1 drop of hydroxyb12 (1000 mcg) only to begin and plan to keep it this way for a week or two. Didn't add the folinic acid yet. I'll introduce it after that.

    I prefer to start slowly.
     
  6. gu3vara

    gu3vara Senior Member

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    What do you suggest for that? Imunovir, anti-viral like Famvir or valcyte?
     
  7. caledonia

    caledonia

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    Cincinnati, OH, USA
    I suggest discontinuing until all the symptoms clear and you're back to your baseline. Then restart at a much lower dose. The 1000mcg that gu3vara mentions sounds way high to me. I started with a few tiny crumbs too.

    You can dilute the drops with water to get a much lower dose. You can subdivide powders with empty gel caps you get at the health food store.
     
  8. merylg

    merylg Senior Member

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    Hi Andy,

    I am also trying to sort out a sensitivity to some aspect of the Simplified Methylation Protocol. My suggestion is, when your reactions have settled and you are at baseline for you, that you try each component separately, that is on it's own for a week, and monitor for any reactions.

    For example, this week I am trying just one supplement.....one drop of Hydroxy B12 (Holistic Health) per day.

    I suspect I may have a problem taking anything that has Methyl- as a prefix! So I will certainly be trying Methylmate B
    again at a very low dose.

    I also suspect I might be allergic or sensitive to some component of the Holistic Health Neuro Support Multi, which is disappointing, as it seems to contain a lot of good and necessary components.

    A way around this is to look at Freddd's protocol and obtain the supporting supplements in a more simplified form.

    I get breathing problems all the time and they are most disturbing. It has been described to me by my Immunologist/Allergist as angioedema.
    I can get a flushing reaction after simply drinking a cup of tea.
    I once had a more severe flushing reaction that hurt to the cheek bone, when I had a severe reaction to Plaquenil. It also gave me an itchy rash on arms and legs, and swelling/arthritis at base of thumb joint!
     
  9. aprilk1869

    aprilk1869 Senior Member

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    Did you take the Phosphatidyl Serine Complex? It can lower cortisol levels which isn't good if your cortisol levels are already low.
     
  10. AndrewB

    AndrewB Senior Member

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    England, UK
    hi guys,

    im on the third dose, my second days experience was much more tolerable than the first.
    ive only just taken my third dose, the drops seem to make me a little dizzy,
    and my breathing is still sometimes difficult, but my heart is pounding as much as day
    one so my breathing isnt as fast.
    one thing that hasnt changed is the stimulant effect mentally.
    im not sleeping more than an hour or so at a time, and the general feeling of alertness is
    very high.
    im taking ;

    1/4 Tablet of General Vitamin Neurological Health Formula (although it states on the bottle 6 a day !!!
    1/4 0f Folinic Acid
    Phosphatidyl Serine Complex 1 a day
    Hydroxy B12 Mega Drops 2 drops a day
    MethylMate B 3 drops a day

    I was planning on increasing the Neurological Health Formula by a quarter tablet each week.
    I was just so surprised at the jolt to my system on the first day of the protacol, my head was literally
    spinning and i needed to lay down for a while.
    So ive still got all those reactions from the first day, but not as intense as the first day.
    It doesnt help that we're having unusually warm weather this week in the uk, it seems to stir up
    my chest problems quite alot, but this protacol most certainly effects my breathing even given the
    weather.
    So, has anybody been on it over a few weeks and when would people start to feel energy boosts and
    a gerneral feeling of any improvement ?
    Im only three days in so i imagine ive got a while yet.
     
  11. gu3vara

    gu3vara Senior Member

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    I personally started with 1 tablet of neurological health formula and 1 lecithin softgel and it seems rather easy to tolerate for me. I didn't have much problem taking high doses of b12 in the past so 1000 mcg feels ok for me. I go very slowly with the folate and folinic acid though, somehow I think it will generate a bad reaction if I increase it too fast.

    I don't expect improvements until a couple months on the full regimen, but I could be wrong.
     
  12. justy

    justy Senior Member

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    Hi Andrew, i haven't tried the protocol (yet) but from what i have gathered on the forums you need to start much more slowly than you are. I think lots of people also only add one supplement in at a time, not start from day one with all of them.
    I do think if you are having the kinds of problems you describe then you should take Caledonias advice and stop for a few day to get back to your baseline, then start much more slowly with just one supplement and see how you go, if thats ok add in a little bit of another one etc. That way you will be able to see if it is any particular type or amount of supplement that is too much.
    Take care, Justy.
     
  13. maddietod

    maddietod Senior Member

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    I was able to start at full doses, with no reaction except for an energy boost (immediately). Over the next 4-6 weeks I dealt with apparent detox (nausea, headaches), and all of my skin rashes went away. But the energy boost declined, until I was right back where I started. I've just started my 6th month on the protocol, and the changes are subtle: gut motility is vastly improved, for example.

    2 months ago I had a bunch of tests done, and I just got the results of one of the methylation panels (the lab in New Jersey). Rich says it shows I have the classic CFS methylation pattern. He wants to wait for the results of the genomics methylation panel before talking about my issues, but I think we'll discover some necessary cofactors are missing in my protocol.

    I think it's incredibly important to take this as slowly as your body needs you to. "Getting to" full doses quickly won't improve your results. It's kind of like crashing through a fence vs. slowly cutting out a door. The first way leaves a horrible mess that takes more time to fix than the cutting would have required.

    Madie

    I take lecithin rather than the serine complex. Also, I divide the folinic acid by pouring the capsules into a dropper bottle, and adding water so than 1 dropperful = 1/4 capsule.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Andrew,

    I agree, that you should either lower your doses considerably or stop until your symptoms normalize. You are having too strong symptoms. I also reacted strongly to too high a dose of Phosphatidyl Serine complex. I had to keep it in the freezer so I could cut the gel tabs and take less than one.

    It takes quite a while to get stabilized on this treatment and good effects as well as side effects come and go -- but overall I had a significant gain from over two years following this treatment. I think I began to notice changes after about too months.

    But please don't take doses that give you this kind of symptoms. The effect is cumulative too, so I found that I had a difficult reaction after about 3 or 4 days and had to stop and reduce all my doses.

    Best,
    Sushi
     
  15. gu3vara

    gu3vara Senior Member

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    I'm sorry to hijack this thread with a question but regarding the hydroxyb12 and methylmate drops : are they supposed to be taken sub-lingual? that's what I did but I'm not sure if it's ok.

    Thx!
     
  16. Valentijn

    Valentijn Activity Level: 3

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    Yup! One drop under the tongue.
     
  17. gu3vara

    gu3vara Senior Member

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    Thank you Valentijn
     

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