Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Methylation - another thing I need to try?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by SuzieSam, Nov 3, 2016.

  1. SuzieSam

    SuzieSam Constant companion

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    Wow. I thought I was totally up to date on all the treatments and investigations for ME I'm missing out on - anti-virals for herpes viruses, tick-bourne diseases, gut infections, SIBO, leaky gut... And now I come here and find I probably have a methylation problem because my B12 is low despite eating a high protein diet and taking methylcobalamin. This stuff is so much more complicated than anything else I've read. And I read EVERYTHING. My brain is stuck. You guys have had your genes tested for this? I've been sick for 8 years and had no proper testing at all, beyond the stupid mainstream medical. I really want a Functional Medicine doctor to take me in hand. I can't do it on my own any more. Please help me, someone.
     
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  2. erin

    erin Senior Member

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    Hi Suzie Sam, welcome to PR.
    Unfortunately, I have yet to find a functional medicine doctor to take me in hand. Even some doctors are great their hands are tied that they can't do much for ME sufferers because the system wouldn't allow them.
    You have to do it for yourself if you can, health systems all over the world will fail you, not help you and you are tired to deal with this on your own. I don't mean to sound so pessimistic but this is how it is at the moment.

    I didn't have the MTHFR test or other genetic tests. I take cyanocobalamin injections 2 monthly and which is not great but nothing else I can do about it. I supplement with sublingual methylcobalamin and some other supplements depending on my symptoms.
    Good luck I hope you find a way, maybe best to step back and digest the info a little.
     
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  3. ahmo

    ahmo Senior Member

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    Yes, it's a lot. I had genetic testing, but I don't think it's essential. If you're willing to proceed by trial and error. There's a link in my signature to Methylation for Dummies, which might help. Also 3 links to Freddd's Protocol, but that's a more specific approach. Caledonia has many excellent links to vids and text in her signature. Good luck, you've come to the right place for help. Correcting my methylation + detox has dramatically improved my quality of life. :balloons:
     
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  4. CCC

    CCC Senior Member

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    How are you taking the methylB12? A lot of us here found we need it sublingually (the Freddd approach) or as an oil (from Greg, the Australian B12 oil guy). We're using the oil now.

    You absorb only about 1% of what you swallow. We swallowed a lot of B12 for a year, and the blood levels didn't change. In fact, the active B12 in a blood test was borderline deficient. So I'm confident to say that swallowing B12 supplements did nothing for us.
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Dear SuzieSam,
    As far as I can see there is no scientific evidence for methylation having anything to do with ME or CFS. So it seems that genetic testing is irrelevant. As far as I can see it only seems complicated because nobody actually understands any of it - since there is nothing to understand in ME or CFS.
     
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  6. SuzieSam

    SuzieSam Constant companion

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    Thanks so much for the warm welcome, everyone :). #erin you're right, I need to take a deep breath and step back. I need some rest, then I'll dive in to the reading you all sent. I had a bad day. I had made an appointment with a doc who I thought could help, then read bad reviews online. Now I'm going to cancel. He'll have less info than I'll find here anyway! I guess I'll be ordering my own tests and doing my own doctoring. Do I have to be rude and dismissive to myself, too? :bang-head:
     
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  7. CCC

    CCC Senior Member

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    Would you care to rephrase that? I'm sure you don't mean it as written.
     
  8. Valentijn

    Valentijn The Diabolic Logic

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    I agree that there's no indication of methylation being particularly relevant to ME/CFS. But people often do find useful tidbits in their genetic data, such as impairment in creating or using certain vitamins, deafness resulting from certain antibiotics, and susceptibility to certain infections.
     
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  9. taniaaust1

    taniaaust1

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    For me though I knew already had a double mutation for the MTHFR mutation due to my doctor getting me tested for that, I still found gene testing useful to confirm other things I'd recently started to think I had issues with and with that also helped to confirm the things which had been found on my hair tests.

    The gene testing really helped tie everything together for me eg I had started to think sulphur foods were causing me issues so starting to think I had a mutation of a gene which causes that and sure enough I did. My gene tests also helped make sense of my low molybedum, my low selenium, my high copper all which showed on hair tests. It also showed me some drugs which could be deadly if I took.

    I also found the gene mutations which had caused other issues in my life

    i still got genetic data I want to go though to see if anything else interesting comes up with it which may be useful to. (I found out that Im a much higher risk of lung cancer through my gene testing, passive smoke is a risk to me, and also found out that I have a around a 40% risk of Alziemers (spelling?). So knowing stuff like that could save a persons life.

    Lots of us have found it to be useful
     
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  10. SuzieSam

    SuzieSam Constant companion

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    @Jonathan Edwards in your (extremely) educated opinion is all this talk of methylation rubbish? All these people with their 23&me results and serious talk of their SNPs? It does seem like it could be a useful tool in pointing out weaknesses we can work round and compensate for.
     
  11. taniaaust1

    taniaaust1

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    Suzie, I think as science learns more and more about things, gene testing will probably become even more important. As really its still a rather recent area in the field of medicine so its no wonder that some doctors do not seem comfortable with it. I think you really need to go by the ME/CFS community itself and if people are finding it has been helpful or not. Some I guess wont find it helpful, it all depends on what you find in it.
     
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  12. SuzieSam

    SuzieSam Constant companion

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    Sublingual Methylcobalamin 1mg twice a week. Gonna do it daily now. You're right - when I had monthly injections a couple of years ago, it went from low to mid normal, but this year when it fell v low again sub-lingual hasn't raised it much. The B12 shots in my butt were very painful, but effective. I'll see about this oil :thumbsup:.
     
  13. SuzieSam

    SuzieSam Constant companion

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    @taniaaust1 yeah, your experience shows that it can be very useful :). Even my dog would have benefitted - We didn't know why she was such a misery and so snappy till she was 4 and started peeing blood. Every year the vet had said she's physically fine, it's cos she's a rescue dog, who knows what happened to her as a puppy. Turned out she had a rock in her bladder made of calcium, potassium and other minerals she has a genetic problem digesting! She's a different dog now she's on a special diet. I'd have gladly paid for genetic testing to save her all that suffering, so doing it for my human family should be a no brainer...
     
  14. Valentijn

    Valentijn The Diabolic Logic

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    I don't think he knows anything about methylation, and is just a bit of an habitual skeptic :nerd:

    But significant methylation mutations are no more common in ME patients than they are in everyone else, so it seems unlikely that they have anything to do with ME. The most common significant MTHFR mutations are easily compensated for by eating a decent amount of vegetables, or taking a normal multivitamin instead. And most SNPs focused upon by Yasko and reported by Genetic Genie are completely irrelevant - many are well-established as having no impact or a mild beneficial impact, despite being labeled +/+.

    Richard Van Konyenburg (RichVanK) co-authored a proper scientific research trial of methylation support, and there weren't sustained benefits after some initial improvements. So it's not looking too good from that angle either. I suspect many people find B12 or folate to be beneficial in their own right, unrelated to methylation.

    Very high doses of injected hydroxoB12 help with my pain quite a bit, for example, and I don't know if that has anything to do with being +/+ for MTRR A66G (30% of normal enzyme activity). I suspect it doesn't, because the dose is much larger than would be necessary to correct for a deficiency, and I should be getting plenty of B12 in my diet due to being a meat-lover.
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Valentijn is right to call me a sceptic - in the sense that being a sceptic is essential to being a scientist. But I am not a cynic - which is often confused with the sceptic. If something makes sense I can get very interested indeed. (It is not as if I have a reputation for not trying new things - like rituximab for instance.)

    I know a reasonable amount about methylation from spending several hours reading background literature flagged up by PR members - enough to understand the arguments that might be made in relation to ME/CFS. And here I agree with Valentijn again; there is so far no evidence that problems with methylation have anything to do with ME/CFS. Moreover, most of the talk about treating methylation makes no sense. A lot of it seems to stem from a Dr Yasko and from what I have read of her views again they appear to be unfounded nonsense.

    Genetic testing would be useful in ME if we knew of any genetic factors that contribute to ME and we don't so far. I am pretty sure it is a complete waste of time.
     
  16. erin

    erin Senior Member

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    Very interesting to hear your opinion @Jonathan Edwards, I was trying to save money for genetic testing. Although I didn't understand the mechanism well and confused about it, I kind of felt it was necessary somehow. I felt kind of relieved and revise my decision about it.
     
  17. SuzieSam

    SuzieSam Constant companion

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    Very interesting, thank you @Valentijn and @Jonathan Edwards. I definitely have a strange problem getting B12 from my chicken, dairy and eggs heavy diet, which is most likely to do with lack of intrinsic factor to absorb B12 from food. I eat plenty of it. It will be more useful to see if I've got Pernicious Anemia from:
    • Weakened stomach lining (atrophic gastritis)
    • An autoimmune condition in which the body's immune system attacks the actual intrinsic factor protein or the cells in the lining of your stomach that make it. (MedlinePlus)
    Another thing - I need to take plenty of folic acid to balance the B12? How much? Not sure, if Itaje 1000mg B12 sublingual daily and who knows what gets absorbed? Thanks for your help.
     

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