Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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I finally have my results

Discussion in 'General ME/CFS Discussion' started by Lisa6235, Nov 9, 2013.

  1. Hello everyone

    As you know I have been waiting for hear for quiet a while. I now have these but the results mean nothing to me. I said I would post these to see if anyone can offer some advice. Does anyone know how I post these as the Information is online and what information should I post . Many thanks everyone x x
  2. Valentijn

    Valentijn Senior Member

    One thing you can do is download your results from and run them through

    There's also a download at which you can use to get a list of your very rare mutations.
  3. hi

    many thanks for your help on this. I think i have managed to download my results but not to sure as this is right as computers are not my strongest point. Please see below

    Gene & Variation rsID Alleles Result
    COMT V158M rs4680 AA +/+
    COMT H62H rs4633 TT +/+
    COMT P199P rs769224 GG -/-
    VDR Bsm rs1544410 CC -/-
    VDR Taq rs731236 AA +/+
    MAO A R297R rs6323 TT +/+
    ACAT1-02 rs3741049 GG -/-
    MTHFR C677T rs1801133 AA +/+
    MTHFR 03 P39P rs2066470 GG -/-
    MTHFR A1298C rs1801131 TT -/-
    MTR A2756G rs1805087 AA -/-
    MTRR A66G rs1801394 GG +/+
    MTRR H595Y rs10380 CC -/-
    MTRR K350A rs162036 AA -/-
    MTRR R415T rs2287780 CC -/-
    MTRR A664A rs1802059 GG -/-
    BHMT-02 rs567754 CC -/-
    BHMT-04 rs617219 AA -/-
    BHMT-08 rs651852 CC -/-
    AHCY-01 rs819147 TT -/-
    AHCY-02 rs819134 AA -/-
    AHCY-19 rs819171 TT -/-
    CBS C699T rs234706 GG -/-
    CBS A360A rs1801181 AG +/-
    CBS N212N rs2298758 GG -/-
    SHMT1 C1420T rs1979277 AG

    i would be so grateful if anyone can help me.
    many thanks
    lisa x x
  4. caledonia


    Cincinnati, OH, USA
    You have two First Priority mutations, SHMT and CBS. For SHMT, Yasko suggests taking folinic acid for that. That's one of the "leaky gut genes" and people with that mutation tend to have more gut issues. If that's you, you should treat SHMT and the gut at the same time for best results.

    Your CBS is the minor one, with only one mutation, and you have no BHMT SNPs. It's not very likely that you'll have to treat for CBS.

    Your MTHFR C677T is a biggie. You'll need methylfolate for that.

    You have one MTRR which is B12 recycling. So you'll need some B12 for that. Your COMT/VDR combination is on the more sensitive end of the spectrum, so when you supplement for B12, Yasko suggests hydroxycobalamin and adenosylcobalamin. Methylcobalamin could cause mood swings.

    The MAO A affects serotonin. Yasko suggests some low level 5htp supplementation for that, but only after the rest of the cycle is balanced and it still seems like you need it. Of course, if you're on an SSRI or similar, that would be contraindicated.

    Check out all the links in my signature for more info.
  5. Helen

    Helen Senior Member

    @caledonia, isn´t it only a hypothesis from Yasko that the mutations should be treated in that order? I do have respect for her experience, but Rich and Neil Nathan never stressed the CBS mutation as necessary to deal with in their clinical study. Maybe there are other opinions, but as far as I know there is no research so far.

    At a ME-clinic in my country they have been giving treatment with folates and B12-injections for 15 years with very good results. Recently I talked to one of their doctors and showed results from 23and me and Yasko´s methylation test from 60 people. He got very excited to see that all had MTHFR mutations ( some heterozygote mutations should be added , so two heterozygote is as bad as being homozygote), and all had at least one MTRR mutation. This could explain their good results from treatment with B12-injections and folates, he thought, though it has to be studied and confirmed. The big problem is that there is no valid test for vitamin B12 today. Some tests might indicate a B12 deficiency but negative results are not valid. The absence of evidence is not the evidence for absence...That clinic give patients a trial treatment to see if they benefit from B12 and folate supplementation.

    So a simple way could be to start with vitamin B12 and folates. Your MTHFR C677T mutation decreases your folate metabolism with 70 % so you do need extra methyltetrahydrofolate ( ) and your MTRR mutation surely decreases you "recycling" of vitamin B12. I have a single MTRR mutation and I need injections every second day to fill my need of B12. Maybe you also will need extra potassium when you have started supplementation. I recommend reading posts about this.

    PS I would recommend checking your detox panel too.

    Best of luck!
    Valentijn and Crux like this.
  7. Hi everyone

    Thank you so much for all your replies.

    I originally had the test done as I have severe reactions to lots of supplements and its quiet severe. I have tried folate and also b12 but these make me hallucinate.

    You mentioned the detox profile is that an additional cost as I can't see this on my results.

    I have many high Stars for cancer and this has sent alarm bells and bow worried i have opened a can of worms


    Lisa x x
  8. JAH

    JAH Senior Member

    San Jose
    The "detox profile" is from genetic genie, which valentijn mentioned in the second post. It is free.
  9. caledonia


    Cincinnati, OH, USA
    I have to disagree with this. I tried to go straight to MTHFR/MTR and found that I wasn't able to tolerate even 1mcg of B12. So I had to stop and go back and do CBS. Now I can tolerate larger amounts.

    Rich's hypothesis was that if you had CBS, you might be able to start with very small amounts of folate and B12, a very slowly work your way up, and if this was done CBS could resolve via this method. This could take 6-9 months.

    Frankly, it's much faster to do a CBS protocol, which is 1-3 months. I still take some low level CBS supps to keep this pathway open.
  10. Helen

    Helen Senior Member

    With full respect that some people have problems from their CBS mutations, my own and many others experience is that it works well to start with B12 and folates without addressing CBS. In my opinion it is worth a trial as a B12 defiency often is rather serious when there are symptoms. To wait another 1-3 months with treatment if not necessary for everyone, is that really the right way? Is the backlash from not having addressed a CBS mutation before B12 and folate treatment severe and longlasting? Could we be sure that the symptoms are from CBS mutations and not from other unidentified issues e.g. released toxins due to methylation that starts promptly with supplementation?

    I talked to Rich when he had his seminar in Sweden , October 2011, about CBS mutations and he didn´t tell what you say. Did he change his mind during his last year? Did he write about this in any context? I am a bit confused.
    Valentijn likes this.
  11. caledonia


    Cincinnati, OH, USA
    Yes, someone asked him about CBS and there is a post somewhere. Maybe a search on Rich Vank and CBS would bring it up. When Rich did his study, 23andme was still expensive, there was no geneticgenie and so forth. His intention was to develop a simple low cost methylation protocol that might be cost effective and work for everyone, so that means no SNP testing, no customization of supps, etc.

    He didn't test anyone in the study for their SNPs, so it's hard to say if, for example, the people who had to drop out were ones with expressed CBS SNPs.

    You can have CBS SNPs and it's not an issue. You only need to address CBS if it's expressed (i.e. causing problems). The big problem it causes is to not tolerate methyl supps. That's a big problem!

    So that's basically what I suggest to people - very cautiously try methyl supps, and if you have certain problems, you need to check for CBS issues, and then treat for that if necessary.

    Because CBS can cause anxiety, it wouldn't be wise to take full doses of B12 and folate to start with. On I've heard of people having to go to the hospital because of this.
  12. Hi

    Many thanks for all your Information. Can anyone explain CBS and what this is ? This is all so new to me and very daunting. I have tried low doses of folate and b12 and they all cause horrific side effects to the point where I am so bervous to take any supplements.

    Many thanks

    Lisa. X

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