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23andme analysis and treatment (COMT/VDR/MAO)

Discussion in 'Genetic Testing and SNPs' started by twincity, May 24, 2015.

  1. twincity

    twincity

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    Hi all,

    Firstly can I say thanks to everyone on here. After years of being sent down the wrong path by the NHS this site has been a godsend.

    I've had my 23andme test done, and it's returned the following:

    Homozygous

    COMT V158M
    COMT H62H
    VDR Bsm
    MAO-A R297R

    Heterozygous

    MTHFR C677T
    MTRR A66G
    MTRR A664A
    BHMT-08
    AHCY-01
    AHCY-19
    CBS C699T
    CBS A360A

    Would anyone be able to recommend a course of treatment?

    I've been suffering from gastritis / hypersensitive oesophagus for a few years (could be caused by the mutations above), as well as wired but tired / dark eyes etc, and don't seem to tolerate anything stimulating well at all, or sulphur foods. I'm a 39-year old fella.

    Any help much recommended!
     
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  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    @twincity We aren't supposed to advise on treatment on PR and to be honest there isn't any treatment for genetic variations like these anyway, certainly not without adequate information on your clinical condition and basic blood tests like full blood count. So far there does not seem to be any evidence that genetic variants are involved in ME.
     
  3. twincity

    twincity

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    That's not particularly helpful to be honest Jonathan.
     
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  4. twincity

    twincity

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    For reference, my basic blood tests revealed everything to be within normal ranges - electrolytes, B12, folate were all within range. Which is nice.

    But then I've still been suffering from 'overmethylated' wired but tired exhaustion for years, accompanied by gastritis/silent GERD (or what I thought was GERD) that got so severe I had a Nissen Fundoplication last year. I've still got the gastritis, even though the wrap is in place. So I'm wondering whether the COMT/MAO mutation and accompanying high levels of dopamine and norepinephrine could have caused Visceral Hypersensitivity (which could have caused the GI symptoms all along). As well as the muscle twitching etc.

    So yeah. I'd be very interested in knowing how to treat the conditions that may, or may not, accompany the genetic mutations detailed above.

    Thanks
     
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Isn't it better to be honest than to give groundless advice? Nobody on PR can advise you sensibly on this. Unfortunately, lots of people do post asking for advice but it is quite clear in the rules that this is not what PR is for.
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Nobody has any idea, that's the problem twincity. There does not seem to be any good evidence for methylation having anything to do with ME type symptoms as far as I can see.
     
  7. Gondwanaland

    Gondwanaland Senior Member

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    Welcome to the boards @twincity .There are several helpful discussions on COMT and MAO that you can read. Use the search engine on the top right. For words with 3 letters or less click the "google search" option.
     
  8. twincity

    twincity

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    I've not found help anywhere else. So I'm asking for it here. I've been on a long and arduous trek to get to this point.

    I was initially told by GPs (yes, plural), that there was nothing wrong with me and that it was just a bit of anxiety (at this point I could barely walk). So I undertook a long and costly course of CBT. Which is nice, but not the issue.

    I went through the alternative medicine gamut (kinesiology, acupuncture, etc), which I now realise was a waste of time, but then it got me here.

    I saw an endocronologist, who checked me out, tested my thyroid, and then told me to stop looking for answers because I would probably never find them.

    Funnily enough, as I have a family to support, I ignored him and tried to get my health better so I could actually be present with my children.

    I had a nissen fundoplication. I had all of my mercury fillings removed. And now, I am here. And I am closer than I have ever been to getting my health to a manageable level. The work I've done identifying foods that trigger the 'wired but tired' crashes has lead me to narrow down the area of trouble to the trans-sulphuration pathway/methylation cycle (whatever you want to call it). And it lead me to take the 23andme test.

    Jonathan - if I don't follow this up, if I abandon this, what is the alternative? Or perhaps it's worth pursuing on the off chance that there is something in it. Because I have not been able to find any help elsewhere.
     
    Last edited: May 24, 2015
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  9. twincity

    twincity

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    Fair enough. What kind of areas should I be look at instead? Any suggestions?
     
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I cannot pretend to be able to provide a solution. However, my experience with looking after people with insoluble medical problems over a long period led me to think that the most useful advice is sometimes what my sister in law said to me when I was faced with my wife going insane on an antimalarial drug - 'hang in there'. I hung in there and she got better. You seem to have had significant improvement. There is no way anyone can tell why. It might have been the operation or the fillings or the diet but how can anyone tell? You say you have narrowed down the area of trouble to trans-sulphation but hang on a minute... It takes research teams years to narrow down a disease mechanism to a pathway. I don't see how you could possibly have evidence for any particular pathway being involved to be honest. I know that people think they can work these things out for themselves but as a scientists I cannot see how you could possibly gather the relevant evidence. From what I have seen so far 23andme is pretty much a scam to sell genetic testing to people when it is completely useless as a help to their health. I gather it has been banned in the USA for that reason, or something like that.

    It is never possible to be sure but my suspicion is that one way or another discussions about methylation and suchlike are in a way a soft sell advertising for people who want to sell supplements for no very good reason.

    So I am not going to suggest any alternative, but rather I would suggest that if you are already feeling a bit better then if it were me I would hang in there and hope I go on getting better without trashing either my wallet or my health by experimenting with a lot of stuff that is based on pseudoscience.
     
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  11. twincity

    twincity

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    So your advice is 'wait'. Because I may get better at some point.

    I've been on this for 10 years now. I'm aware of what treatments have what effect.

    The only reason I've improved slightly is because I took the initiative and told my gp to look into it (the surgery).

    Waiting around for a miracle is a very poor idea.
     
    Last edited: May 24, 2015
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I absolutely agree that waiting around for NHS GPs to solve a problem is a very poor idea. I have had to take advantage of the fact that I can bypass GPs or tell them what to do. The current GP system is a catastrophe.

    I appreciate that my advice does not suit everyone. However, if nobody knows what to do, which does seem to be the situation for ME at present, my feeling is that the other approach is worse. At the recent RSM meeting a psychiatrist complained that if we criticise the PACE CBT trial then we will end up with no treatment to offer patients and one has to have something to offer people even if it is no good. I personally prefer not to offer something if I have reason to think it is useless and admit I do not know.
     
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  13. twincity

    twincity

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    Just so I have this clear, you're saying there is nothing anyone can do about ME or ME-type symptoms at the moment, and that the best advice is to do nothing.

    That's a pretty bleak picture.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I realise that. The point of my contributing to PR is to try to learn how I might best advise colleagues to change that by doing the right sort of research. Not long ago a psychiatric colleague wrote a review article saying we had 'the right treatment', effectively poo-pooing the IoM suggestion that maybe we did not have very good treatment and needed to do some research. One of the problems about convincing oneself that one has treatments is that you do not look for something better. So I think it is best to look at how things really are. There is pretty little one can do about a lot of illnesses still. I do not want to discourage people from trying things that look at least plausible approaches and seem safe but all I see on the methylation and supplement front is pseudoscience garbage designed to make money for labs and fringe physicians. It doesn't actually make any biochemical sense most of it. And if these approaches have the power to heal, more or less by definition they have the power to do harm with toxicity.
     
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  15. pogoman

    pogoman Senior Member

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    from what I see your homozygous snp's don't really have to do with methylation.
    but have you done the usual tests involving pain or fatigue?

    CBC blood
    Liver function
    testosterone, SHBG, LH and FSH
    C-reactive protein
    ESR
    Rheumatoid Factor
    LDH
    Creatine Kinase

    plus there are other tests.
     
  16. AndyPandy

    AndyPandy Making the most of it

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    @twincity welcome!

    You might like to have a look at the information and references under @caledonia's blog about methylation, or under her signature. You may pick up some information about your SNPs from her Guide. While not strictly on point regarding your specific problem, it might help with understanding the SNPs and point you in the right direction for further research.

    Keep on trying to find answers. There are many of us here who have chosen to keep searching and experimenting in the absence of any mainstream cure for our health problems.

    Best wishes, Andy
     
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  17. caledonia

    caledonia

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    Cincinnati, OH, USA
    #1 I suggest starting with the 4R Gut Rebuilding program. Get as far as you can get with that. Then start methylation treatment. Normal B12 on a blood test doesn't mean anything. You could actually be deficient. I had the same results and I'm very deficient. Low B12 will also affect gut operation. You will likely need to do the CBS protocol prior to methylation so you can tolerate sulfur and also methyl supplements.

    If you have had any mercury fillings or other mercury exposure, symptoms of mercury toxicity or mercury or other toxic metals showing up on testing, consider the Cutler chelation protocol (after methylation supports are in place.) Prior to that I suggest doing a 24 hour cortisol saliva test and seeing how your adrenals are doing. If they are low, add adrenal supports. Adrenal issues can also contribute to gut issues, as can mercury toxicity. Methylation treatment may also help your adrenals.

    Also with the COMT mutations, you'll need to be careful with the type of B12. Methylcobalamin could cause severe mood swings. Hydroxycobalamin metabolizes slower and might be tolerated better. Or keep the amount of methylcobalamin very low.

    So to summarize:
    1. 4R Gut Rebuilding
    2. CBS
    3. Methylation
    4. Adrenals
    5. Cutler chelation (if indicated)

    See the link in my signature for info on the SNPs and more.
     
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  18. ahmo

    ahmo Senior Member

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    I have nothing to sell. Pursuing methylation corrections returned my life to me.


    @twincity I
    ve written a recent blog post that includes links to a thread re MAO/COMT. You might find some links that are helpful to you.
     
    Last edited: May 25, 2015
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  19. twincity

    twincity

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    That's great, thanks caledonia and ahmo.

    The urine test I had at the endocrinologist indicated that my adrenals were ok, but my physical symptoms indicate that my problems are more on the COMT/MAO side - twitching muscles (fasciculations), wired but exhausted, dark rings under eyes, hyper, inflamed sinuses and GI tract etc. I can have explosive bursts of energy one minute and be bedridden the next.

    And I can't tolerate foods like broccoli, peas or eggs at all. Brings on the full wired/twitchy/knackered symptoms every time.

    I went for a standard B12 shot before I got my DNA tests back, just for a boost to get me through a family holiday, and it completely floored me. I felt like I was losing my mind. I've asked which type of B12 it was, and I'm waiting to hear back. But wow. Unpleasant.

    caledonia - I had a mercury (inorganic and organic) sensitivity test last year and was a whopping 320 (100 is standard), so I had my fillings removed. Following 6 months on seagreens, NAC and glutathione (with selenium and molyb) the mercury sensitivity is now down to 220, and my previously low glutathione is back to normal levels. So I guess that's good. I'm not sure I should be on NAC and glutathione considering my newly-established COMT status though. So I'm going to discontinue them.

    Thanks for the recommendations re 4R Gut Rebuilding, CBS, Methylation. This sounds great. I'm less sure about the adrenals side - I tried adrenal support before and it again made me feel like I was going nuts. Perhaps I just need to relieve the COMT pressure rather than stimulating.

    Also it looks like my system is managing to rid itself of the mercury burden on it's own (my regular FIR sauna and exercise probably helps), not sure I want to go through Cutler chelation unless I have to..

    Finally - I'm considering having Skype consultations with Dr Rostenberg (of beyondmthr) to get some guidance going through this. Does anyone have any experience of working with him?

    Thanks again all - I actually agree with Dr Edwards above that there is a lot of garbage online around methylation, however I feel there is also a lot that is useful, a lot that is actually on the money, if you dig deep enough. It's just a matter of sorting the wheat from the chaff. Hopefully as more studies are done the genuinely useful approaches in this field will gain prominence and the snake oil salesmen will move on to something else. Thank you all for helping move this forward.
     
  20. Valentijn

    Valentijn Senior Member

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    The CBS SNPs have little or no impact. Hence it doesn't make any sense to "treat" them.
     
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