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New to methylation tx, am I doing this right?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by chriswarren1, Jul 31, 2013.

  1. chriswarren1

    chriswarren1

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    Hi all, I did the 23andme thing and recently received my results. I would appreciate any feedback as to whether or not I am going about this the right way.

    +/+ for

    MTHFR A1298C
    MAO-A R297R
    MTRR A66G
    MTRR A664A
    SHMT1 C1420T

    +/- for

    COMT V158M
    COMT H62H
    VDR Bsm
    VDR Taq
    BHMT-02
    BHMT-04
    BHMT-08
    CBS A360A

    Due to my COMT +/-, I have only used 500mcg HB12 every other day for a few weeks to address the MTRR. Any more than that I start getting a sore throat, headache and tooth pain. I plan on titrating up when I can tolerate it.

    Methylfolate so far has made me irritable at 1000mcg doses. I have no other dose options available at the moment so I have quit taking it for the time being. I'm not so sure I need it anyway with the A1298 mutation. Homocysteine levels have been 6-7 for the last year.

    Started 100mg PS for the BHMT
    500mg L Carnitine and 200mg CoQ10 for energy and CBS

    For the CBS: I will test for ammonia levels and sulfate levels to confirm or rule out its involvement in my poor health. I have already started to take out sulfur foods from the diet to help if need be. I do eat a great deal of protein, 1g/lb of BW (200g), but will not lower that much if any until blood work is done for ammonia levels. I have activated charcoal on hand to take if need be and take magnesium everynight anyway.

    Any more tips? Criticism?
    Have I at least go a decent start?
    Thanks!!
  2. Valentijn

    Valentijn Activity Level: 3

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    I've crossed out the ones where there's no research at all indicating that they have any impact on gene function.

    The good news is that you probably don't have much need for folate. MTHFR A1298C is mostly relevant when combined with C677T. So a normal dose is probably more than enough.

    You might be a bit slow in breaking down neurotransmitters, due to COMT and MAOA - hence methyl groups in general may be a problem. VDR might cause slightly slowed production of neurotransmitters as well.

    MTRR indicates that you might need some B12. But due to your COMT and MAOA, hydroxoB12 is the safer form.

    SHMT1 is mostly relevant in connection with MTHFR C677T, but have an impact on folate levels by itself. Again, this is a relatively minor downregulation, so still no reason to think that a high dose of folate is needed.

    I've added in CBS C699T, because it's reported backwards by Yasko based on a somewhat humorous misunderstanding of the research. The slower version can result in raised homocysteine and lower cysteine and glutathione. The standard treatment for that is B6.

    BHMT might also be a bit slow, and phosphatidylcholine seems to be the generally recommended supplement for that.

    SUMMARY:
    A normal dose of methylfolate is probably sufficient, if any is needed at all. HydroxoB12 should also be helpful, as well as B6 and phosphatidylcholine.
  3. Bluebell

    Bluebell Senior Member

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    Vale, are you saying that the Yasko notation of "-/-" for CBS C699T is what you would call a "+/+"?

    Does she say GG is "-/-"? That's the majority result, right?
  4. Bluebell

    Bluebell Senior Member

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    Hi Chris,

    The MTHFR A1298C +/+ is not viewed as benign by everyone. It has been reported to cause problems for some people.

    In terms of learning more about MTHFR, I would suggest that you look at Dr. Benjamin Lynch's site mthfr.net, and also watch his video about MTHFR on his other site seekinghealth.com, which I link to in my big list of methylation links - hyperlink for that is below in my signature line.

    There are many other resources on my list that might be helpful.

    You can also see what "heartfixer" Dr. James Roberts has to say about your mutations, and what Dr. Amy Yasko has to say, plus look through other people's threads here where they have received recommendations in the past. I think now that it's high summer, not so many folks are participating on the forum, so you may not get as many instances of advice right now as other folks have received in the past.

    Good luck!
    LaurieL likes this.
  5. Valentijn

    Valentijn Activity Level: 3

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    Yes, having CBS slightly upregulated seems to be exclusively protective.
  6. LaurieL

    LaurieL Senior Member

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    JV,

    I have kept my questions quiet thus far, but now I ask. You keep stating there is no relevant research, but I ask you....There isn't really much relevant published research into CFS/ME, and I think we can safely say it does exist. Based on the principles of Dr. Amy Yasko, despite your opinion which is becoming increasing clear, many in the ASD circles have used these genetic markers quite successfully. And if I am not mistaken, it is from these circles in which methylation treatments have been adopted in the CFS/ME family. These principles have been adopted in many circles to date, and why are you in the last few months, citing lack of research? There's a rampant lack of research in anything that pertains to us. If I personally was interested in what the researchers have officially published, I wouldn't be at this forum in the first place. I would be getting effective treatment. But what has drawn me and kept me here is patient experience despite what the officials claim. And I have had to rely on the experiences of treating doc's with their patients, and Dr. Yasko is at the fore front, despite whether you personally think she bunk. So, respectfully, I just don't get your new stance in recent times.

    Respectfully,

    LaurieL


    Actually, I don't think high summer is due to some of the lack of participation.....just saying and very concerned at where we might be headed.
  7. Valentijn

    Valentijn Activity Level: 3

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    I'm not saying that there isn't "much" research - I'm saying there is 0 published research supporting Yasko's statements about many of the SNPs. It does not exist.
    Experience is one thing, but she is implying that these SNPs are relevant - they are not. That's not to say that most autism patients don't have a certain problem for which her treatment is a successful one - but if someone is going to use science to support their statements, there should be some actual science supporting their statements :p

    As it is, her use of some of the SNPs implies support from an authority (scientific research) which does not exist.
  8. LaurieL

    LaurieL Senior Member

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    Quote...You keep saying there is no relevant research.....which refers to your statements concerning genetics.

    Quote....There isn't really much research....which refers to the CFS/ME research, and there for does not reflect your statement of no research on genetics.
  9. Valentijn

    Valentijn Activity Level: 3

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    I have no idea what you're trying to say.
  10. LaurieL

    LaurieL Senior Member

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    On the other side of the spectrum....lack of research does not constitute no effect, and clearly she has shown some effect despite lack of authority support. And it is this effect in which is being adopted in many circles, despite lack of published research. It is patient experiences in CFS/ME in which most CFS/ME is immersed in as well.

    I understand the Dr. Yasko lack of backing, but it is her results that have caused a widespread adoption despite the lack of "research". And it is her results with thousands of ASD patients, in which many of us come here to improve our condition. So in the end, it is not fair to those looking at this to say that they do absolutely have an effect or not. And legally, I wouldn't bind myself to either. There are just so many variables, that it will literally take years to prove or disprove genetic contributions "by professional research". And is why treating doc's and patient experiences become so very important. :)

    Sorry for the highjack, but necessary.

    Back to the original quest.

    LaurieL
  11. LaurieL

    LaurieL Senior Member

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    Since you edited your post, this one no longer applies.
  12. chriswarren1

    chriswarren1

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    Thank you Valantijn and Bluebell!!

    Before coming here, I went over a TON at Dr Lynch's, Heartfixer and Yasko's websites.

    It left me quite confused, and that is why I am here.....so much conflicting information regarding MTHFR 1298 and CBS. Dr Lynch doesn't really make it out to be a big deal (1298) unless combined with 677 but has stated CBS could be, but no details really.

    Heartfixer and Yasko mention it is. And I should be supplementing with methylfolate and decreasing exposure to ammonia foods. They too mention CBS as a big deal.

    I guess the only way to find out if I am full of ammonia and producing lots of sulfate is to test. If I am not, then I will assume the mutations are not a big deal. My homocysteine has never been high...in the 6-7 range for the last 18 months.

    If anyone has anything to add to provide any clarity, I will greatly appreciate it.
  13. Bluebell

    Bluebell Senior Member

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    Yes, I've seen places on his site where he says it doesn't affect much (A1298C being heterozygous without any other mutations), but I will quote from a post I made on a different thread a few days ago:

    "For what it's worth, I just read on Dr. Benjamin Lynch's site a minute ago a post in which he complains that some doctors dismiss being heterozygous for the MTHFR mutations, and he says they still can cause demonstrable and serious health problems, which he's seen with some of his patients.

    One person here - I forget her "handle" (her icon photo appears to be of her in an aircraft cockpit with headphones on) says that being heterozygous can express itself as being nearly completely fine to being nearly as bad as being homozygous, depending on the individual."
    http://forums.phoenixrising.me/inde...-i-have-18-of-30-mutations.24324/#post-373862

    I don't know where that Lynch statement appeared on his site - I tried to look for it just now, but his site search isn't the best.

    I'm not saying that I think it has a big effect on you - first of all, I don't know much about this area so I wouldn't know, and second of all, it seems most experts (but not all) are in agreement that it probably doesn't have a big effect on people when it is the only MTHFR mutation.

    Good luck with your investigations (ammonia etc.)!
  14. Bluebell

    Bluebell Senior Member

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    LaurieL, What do you think is happening? Are people going elsewhere for discussion, or just taking a break from discussion altogether? Do they not like some of the other views that are being stated?

    I noticed recently that someone who always gave great information (and whom I was hoping to ask a few questions of) went from being pretty active to being silent around April and there didn't seem to be a stated reason for it. One never knows why someone might take a break, perhaps personal crisis, etc.

    The moderator Mark made some comments about the evolution of the forum in this post:
    http://forums.phoenixrising.me/inde...hoenix-rising-forums.24350/page-2#post-373009
  15. chriswarren1

    chriswarren1

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    So I did the ammonia test and sulfate strips to confirm/rule out problems in that area.

    Sulfate consistently over the last week has been between 800 and the 1200 mark, with it looking closer to 1200 than anything (as best as I can tell).

    Ammonia blood test was 66 (27-102 ug/dl)

    So....the ammonia was not sky high, but is kinda mid range, but sulfates are high. I had already started to avoid high sulfur foods anyway, as well as high thiol foods (except coffee, and maybe that's why its still sky high) but haven't implemented molybdenum yet (except what is in my multivitamin).

    I guess I don't really know what else I should be doing, if anything.
  16. chriswarren1

    chriswarren1

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    What is considered a "normal" dose of Methylfolate? 1000 mcg???
  17. Valentijn

    Valentijn Activity Level: 3

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    400 typically.
  18. chriswarren1

    chriswarren1

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    Thanks again. I am unsure of how much B12 to take. Ranges vary greatly no matter where I look.
    Do I just keep titrating up as long as I am doing ok? Where to stop is the question.....
    What are your thoughts on adenosylcobalamin for someone like me...good also?
  19. Valentijn

    Valentijn Activity Level: 3

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    I do about 20mg of hydroxoB12 per day, though my doctor wanted me going up to 40mg per day. The high doses do seem to help with pain issues, but can be somewhat intense. So I think it really depends on what you're comfortable with.

    No idea about adenosylcobalamin.

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