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I´d like to try this methylation protocol, but I don´t know where to start, I need info

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by lauluce, Nov 16, 2013.

  1. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    Hi, thanks for reading. I'm new to this forum and also to researching treatments for CFS, which I officially got diagnostic of a year ago. I'm visiting a doctor who is ready to receive input about diagnostic and treatment strategies from me. Since I started searching information of this topic, I stumbled upon this methylation protocol many times, but I simply can´t find concise and comprehensive information about it, something that I can hand to my doctor and perhaps has references to studies supporting it, could somebody guide me to find it?. Also, a question I can´t answer is, who developed this protocol? why is is supposed to work, what´s the organic anomaly that it tries to correct?. If somebody could help me with this I´d be extremely grateful, cheers :D
     
  2. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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  3. ahmo

    ahmo Senior Member

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  4. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Oh the other thing is, maybe you should be tested for mutations in the methylation cycle. You can do MTHFR which I think is expensive or what most people use her 23andMe which is about $110 including shipping in the US.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  6. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    thank you all for your help! it seems it'll take me a lot of time to understand this but i'm confident something good ill came out of it... on a side note, 23andme doesn't seem to receive samples form Argentina, does anybody know if there are any labs that receive samples from Argentina that makes tests relevant to CFS, like MTHFR, cytoquine profile, NK cell activity, etc? That last thing would be of great help to me, since here in this country labs have no resources for cfs, none at all :(
     
  7. taniaaust1

    taniaaust1 Senior Member

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    MTHFR testing should be able to be done in your country, probably by a standard lab thou most drs still arent familiar with it. (in my country it was covered by the standard medicare, so I as able to get that done free as part of a "thrombophilia genotypes" test).
     
  8. Critterina

    Critterina Senior Member

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    @lauluce ,
    As you can probably tell, there are multiple protocols. Two were developed by members of this forum.
    • Freddd shares the symptoms he has cured, but he does not share his genetics, so although he has had brilliant success and many others have benefitted from his protocol, it's hard to tell who it will or won't work for.
    • Rich Van K (r.i.p) developed a different protocol, and although you can't ask him about his theories, @Lotus97 speaks very well for him, and I bet you could ask her.
    • @Bluebell has assembled a whole list of great resources that you can use to learn about theories and protocols and programs that will help interpret your genetic results.
    • One of my favorites is the series of 4 videos by Neil Rawlins called "a doctor explains". I'm not sure I'd agree with everything if I watched it again, but it's a good introduction.

    Most of the treatments address mutations in the MTHFR, MTR, and MTRR genes. In essence, they try to either replace chemicals your genetics make it difficult for you to produce in adequate quantity, or supplement one of the substrates for the affected enzymes so that sort of pushes the chemical reaction in the direction that you want it to go, in order to achieve equilibrium. People can benefit from these approaches, or so many of us think, whether we have CFS or not.

    The mutations that we're talking about were discovered relatively recently, so the treatment is controversial. In the US it takes on average 18 years from discovery to acceptance in the medical community. The MTHFR C677T was only discovered (not what it meant in the clinical setting) in 1995. The MTHFR A1298C was only discovered in 2001. Most of the supplements are identical to human chemicals. That doesn't mean they are ineffective or safe, so it's good if you work with someone with experience.

    You can also find help here, too, although not all of us agree what should be done in a certain situation.

    Best of luck to you!
     
  9. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    than you for your answer Critterina! :D I'll read all that this weekend
     
  10. Freddd

    Freddd Senior Member

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    Hi Lauluce,

    who developed this protocol?

    Which "this protocol" do you mean? There are a variety of different protocols with a relatively high degree of agreement where they overlap. After all you are calling them "methylation" protocol. The Active B12 protocol is a methylation and ATP/mitochondria which can deadlock each other. What it means is that it is aimed at partial methylation block, methyltrap and partial ATP block. ME/FMS/CFS are distinguished from each other in how the many varied deficiencies and genetics come together and what effects those three items have.

    You know, CFS/FMS share a characteristic with a whole lot of other neurological conditions; a low level of cobalamins, MeCbl and/or AdoCbl, measured in the cerebral spinal fluid. The have also different quantities of body deficiencies. Many if not most of us have folate problems. The longer and more severe, the more damage of widely varying kinds is done, healing becomes more complicated and many damages may not heal much at all. Further it is like finding your way through a maze with some guidelines and signposts.

    I haven't had any genetic testing done yet because so far there isn't an interpretation directed protocol that works as well as a symptoms based interpretation. Ideally, both would be combined.
     
  11. caledonia

    caledonia

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    I created a video for beginners called Methylation Made Easy. It's the first link in my signature. There are also many other relevant links in my signature.

    The Neil Rawlins video is ok for an introduction; I used some of the info for the research in my video, but it's a very bad idea to take huge prescription doses of methylfolate without B12, and huge doses of methylfolate in general. Plus the video only talks about MTHFR and not the rest of the methylation cycle.

    You should also get some functional testing such as the Nutreval test if you can.

    You might be better off consulting with an American doctor via phone or Skype. MTHFRsupport.com has a list of doctors who are supposed to know about the whole methylation cycle.
     

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