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23andme results! Methyl vs. hydroxy B12???

Discussion in 'Genetic Testing and SNPs' started by NilaJones, Jul 30, 2013.

  1. NilaJones

    NilaJones Senior Member

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    What great timing!

    I arranged my life (it was difficult) to allow me to try B12 again, 2 hours from now. And then my 23and me got done this morning :).

    If you had these SNPs, would you try methyl or hydroxy today? I have both available.

    I am also, of course, thrilled to hear any other suggestions you want to make :). For example, would you address another mutation first?

    And if so, would you go back on methyl folate in the meantime? I went off it in the hope that I would be able to better tolerate B12, but life without folate sucks! My whole-body inflammation and dozens of chronic injuries are so much worse.

    Thanks so much folks :)

    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 AG +/-
    MTHFR C677T rs1801133 GG -/-
    MTHFR 03 P39P rs2066470 GG -/-
    MTHFR A1298C rs1801131 GT +/-
    MTR A2756G rs1805087 AG +/-
    MTRR A66G rs1801394 GG +/+
    MTRR H595Y rs10380 CC -/-
    MTRR K350A rs162036 AA -/-
    MTRR R415T rs2287780 CC -/-
    MTRR A664A rs1802059 GG -/-
    BHMT-02 rs567754 CT +/-
    BHMT-04 rs617219 AC +/-
    BHMT-08 rs651852 TT +/+
    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 AA +/+
  2. NilaJones

    NilaJones Senior Member

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    Also, how do I copypaste the genetic genie results so that the colors show up here? They showed up on the 'post a message' form, but not in the end result. I know they would make this much more readable!
  3. Valentijn

    Valentijn Activity Level: 3

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    I've deleted the -/- results (except CBS which is backwards), and crossed out the irrelevant ones.

    You have the slower versions of COMT and MAO, which means your breaking down neurotransmitters more slowly and may not get along well with supplements containing methyl groups.

    MTHFR A1298C is only shown to have a big effect when combined with MTHFR C677T, so there should be little or no problem with methylfolate.

    Your MTR and MTRR indicate that you likely would benefit from some B12. Due to your slow COMT/MAO, hydroxoB12 is the safer form.

    BHMT-08 can indicate that you're slow in getting rid of homocysteine via one pathway.

    Being -/- for CBS C699T can indicate that you're a bit slow in getting rid of homocysteine via another pathway, which can usually be improved with B6 supplementation.

    SHMT1 primarily acts to increase the impact of MTHFR C677T, which you don't have. So it might not be a problem.

    SUMMARY:
    You'd probably benefit from some hydroxoB12 and B6 supplementation.
  4. NilaJones

    NilaJones Senior Member

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    Thank you!!

    More data in case it is helpful:

    I feel significantly better when I take 1100mg of methylfolate than when I don't (energy + pain + inflammation).

    While on that much folate, I have tried taking tiny doses of methy and hydroxy B12 (not together - about a month apart) but could not handle the 'speedy and then crash' reaction.

    Today I am on my 4th day of no folate (even no multi) and plan to try B12 in my ouchy no-folate state unless this new GG info means I should not. Although very painful, I have not so far felt a decrease in energy from lack of folate. I do get a lot in food, though.

    Before I ever tried B12, but while on folate, 6 months ago, I tried B6 for about a month and noticed no difference.
    Valentijn likes this.
  5. NilaJones

    NilaJones Senior Member

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    PS: Thank you for the reformatting!
  6. NilaJones

    NilaJones Senior Member

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    Ok, I did it!

    I would have waited for more people to respond, but I am on the west coast of the US and think I am not awake when most of you folks are :). If I waited till later I would be up all night, if I react the way I have in the past.

    TBH, I am so excited to be doing something that might help me get better that I don't think I would know excitotoxicity if it bit me :). But I will try to be mellow and just lie down and read book and internet all day.

    I took approx 7mcg of hydroxy (1/12 of a 2000mcg Perque tablet dissolved in 2Tbsp water, of which I took 1/4 teasp -- please feel free to correct my math if is wrong :)) and am swishing it around my mouth. Wish me luck :).
  7. NilaJones

    NilaJones Senior Member

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    Whoah. This is intense. I am shaking, can hardly type, nauseous, have whole-body restless legs feeling. Maybe I should try some magnesium, zinc, and/or potassium?​

    Brain feels weird, too. Really what this reminds me of is when i took a recreational drug once (when not sick). /this whole feeling of +WTH is happenning to me?​

    slightly panicky, too. reminding self emo reaction is normal for me. wondering if this will involve trip to ER. going to see if i have any niacin, but i don't think so,​

    back of neck and jaw hurt, too.​

    maybe i should not tak eanything and just breather f or a minute, see what happens.​
  8. NilaJones

    NilaJones Senior Member

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    Alrighty, well that's wearing off now, yay.

    Someone from the forum here (who likes to remain anonymous) talked to me in chat for a long time, and then I called a friend. I didn't feel safe to be on my own, but didn't feel bad enough to go to the ER. But I'm sure glad it's over with. It was pretty wild ride.

    Data points: Magnesium and emergen-c didn't help. If that tells anyone anything.

    Anybody who has insights or suggestions, please feel free :).
    SpecialK82 likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    I felt a bit of a rush when I first started it (though I don't know if "rush" is the right word). Since it sounds like it's rather overwhelming, it might be a good idea to take it easy - stay with the small (or smaller) doses for a bit, and keep them nicely spaced out. And don't take it near bedtime :D

    I'd only been sick for a few months when I started taking it, so maybe that's why it was less intense for me.
  10. NilaJones

    NilaJones Senior Member

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    I've been trying smaller and smaller doses for the past 7 months. The first time I tried 500mcg, then 250, then 80, now 7.

    This intense of a reaction does not feel safe to me, and I don't want to experience it again.

    Do you (or anyone) have an idea why decreasing the dose almost 100-fold does not decrease the severity of the reaction?
  11. Valentijn

    Valentijn Activity Level: 3

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    No idea at all :(

    What brand are you taking, and what else are you on?
  12. Valentijn

    Valentijn Activity Level: 3

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    Also, do you have any blood pressure problems?
  13. NilaJones

    NilaJones Senior Member

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    I've had this reaction with Perque (hydroxy) and with Sisu (methyl). I note they do not have any weird ingredients in common.

    This time around, taking nothing else for 4 days except magnesium and zinc and celebrex.

    Previous attempts, taking 1000mg folapro + 4caps Thorne III multi. I thought without folate in my system the reaction to B12 would be less, but it was worse!
  14. Valentijn

    Valentijn Activity Level: 3

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    Thanks for the info. Just a few more questions :D

    Have you ever tried or been able to tolerate a normal B-complex or multivitamin?

    Is your blood pressure elevated currently or typically?

    Do you have issues with orthostatic intolerance?

    Have you ever tested low for potassium? Can you try taking potassium to see if it helps? Most supermarkets have it as a salt substitute next to the normal salt.
  15. NilaJones

    NilaJones Senior Member

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    Yes. I have never had a bad reaction to either, unless they contain aspartate (and then it just makes my inflammation worse -- no weird neuro rxn like yesterday). I take Thorne multi daily.

    No.

    Not AFAIK.

    I think at this point in my series of experiments I know what low potassium feels like. I have been careful to ingest lots of it, and take supps as needed. (For the past few months, 2-3 cups carrot juice, several bananas, 15 dried apricots, 1 yogurt, daily. + normal food.) I didn;t have any low potassium symptoms yesterday or today so far.

    Thanks for your help with this!
  16. NilaJones

    NilaJones Senior Member

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    PS: I am low in something, since my last attempt at B12 3-4 weeks ago.

    I have restless legs most nights and very sore muscles, whole body all the time, worse at the end of the day. It's not my normal inflammation problem.

    Magnesium, potassium, and zinc each help a little but not a lot.

    I would love suggestions about what else I could try. Clearly I depleted my stores of something.

    Oh, golly, maybe that is part of the bad reaction? Besides the entheogen-like mental effects, I was shaky and uncoordinated, had trouble typing, and had to move carefully and hold onto things when I got up so as not to fall down. So there was a muscular aspect. I was not more sore, though, during or after. So maybe is not related.
  17. Valentijn

    Valentijn Activity Level: 3

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    I'm running out of ideas :p

    The only thing I can think of is that too much zinc can cause copper to be deficient, and it's not something I'd supplement beyond what's in the multi without a minerals blood test.

    If you can afford testing, it might be a very good idea to get it: blood platelet and serum minerals, B12 levels (whatever the proper test is that people talk about on here), and ferritin.
  18. NilaJones

    NilaJones Senior Member

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    Why would you not supplement copper? I do have some, but have not tried it. Is it contraindicated in ME or something?

    My insurance covers testing but access to the lab is very difficult. It can take up to a year or, often, longer to get a test. So I can't do testing that will show me what is happening now :(. I do have some B!2 related tests in my most recent batch, and should get results soon.

    Maybe ferritin, too, I don't recall. I forgot to include iron on the list of things that help some but not a lot.
  19. Valentijn

    Valentijn Activity Level: 3

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    Sorry, I was referring the zinc supplementation. When zinc gets elevated at all, copper gets pushed out. So it might be better to not supplement zinc unless you're certain that you need it.
  20. NilaJones

    NilaJones Senior Member

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    Well, the zinc does help quite a bit. I cannot sleep without it, due to legs. Would it make sense to take copper and zinc, at diff times of day?

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