Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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New Here. Need Help Please

Discussion in 'Genetic Testing and SNPs' started by TBrown2, Mar 30, 2015.

  1. TBrown2

    TBrown2

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    After getting my 23 and me results and then plugging that into genetic genie, I have learned that my methylation path way is compromised. The supplements that are suggested from Amy Yasko are very overwhelming as there are tons of products. Are we expected to take all of those? Also it says that to correct my methyl mutations I have to take methyl vitamin B12, however another one of my mutations says I wont tolerate Mb12... it also says to use hydroxy version of b12 but then I read elsewhere that the hb12 does nothing to correct this and isnt the active form the body needs. Is there someone I can talk to to help with this? Here is a list of my mutations


    Here are your homozygous mutations as indicated in your SNP gene table above (not including MTHFR):

    • MAO-A R297R
    • MTRR A66G
    • BHMT-08
    • CBS A360A
    Here are your heterozygous mutations as indicated in your SNP gene table above (not including MTHFR):

    • COMT V158M
    • COMT H62H
    • VDR Bsm
    • VDR Taq
    • AHCY-01
    • AHCY-19
     
  2. Valentijn

    Valentijn Senior Member

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    MAOA R297R probably isn't having any impact. At most it might indicate that methyl groups are more or less tolerated, but even that is just a theory.

    MTRR A66G +/+ means that the gene is running at about 30% of the normal speed. It's involved in recycling B12 in the enzyme produced by the MTR gene, so supplementing B12 might be helpful. Some people do better with hydroxoB12, and others do better with methylB12.

    If you're +/+ for BHMT-08, that means you have the better version. Yasko got that one backwards, and Genetic Genie just reports the same way as Yasko.

    CBS A360A doesn't do anything, as far the existing research shows. So that can also be ignored.

    Similarly, the heterozygous genotypes which you've listed shouldn't be having any real impact.

    So if interested, you could probably buy methylB12 from a local source, or get hydroxoB12 online a lot cheaper than Yasko sells it for, and give it a try.
     
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  3. TBrown2

    TBrown2

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    Thank you for the reply. When you say shouldnt be having any impact what does that mean?

    I probably should have disclosed that in the last 2 years I have had a rapid decline of health. A lot of issues have randomly come on such as anxiety, chest pain, dizziness, alcohol intolerance, and fatigue. I also was diagnosed with lyme disease and heavily treated for 18 months with no improvement so I am thinking fixing my methylation cycle is the key.
     
  4. Valentijn

    Valentijn Senior Member

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    Not all SNPs change something in the human body. Basically, they're meaningless at this point in time, unless/until research proves otherwise.
    Have you been assessed or treated for orthostatic intolerance?
     
  5. TBrown2

    TBrown2

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    Ive never heard of it.

    Sorry for the confusion but are you saying that my all mutations shouldnt be causing problems or just some of them?

    Basically when I consulted someone about them they said that the lower half of my methylation cycle was compromised and that it indicated a major deficiency
     
  6. Valentijn

    Valentijn Senior Member

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    Only MTRR A66G, out of the list above, is having a significant impact.
    I'd contend that they don't know what they're talking about. Unfortunately this is very common regarding methylation, where Yasko has managed to widely disseminate a lot of disinformation.
     
  7. TBrown2

    TBrown2

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    It was actually someone on a yasko forum on her site that said this to me.

    Please bare with me and be patient as I am new to this and know next to nothing besides the ever conflicting things that I have been reading up on.

    As far as the MTRR A66G goes how would you suggest I fix that? Yasko has a list of 20 different suppliments surely she cant mean take them all?

    It says that I wont tolerate Methyl Bs because of COMT V158M (COMT H62H) +- VDR / Taq Tt. It says that I should only use Hydroxy or Adensoyl versions of Bs.

    Also it says avoid folic acid?
     
  8. Valentijn

    Valentijn Senior Member

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    B12 alone should be sufficient for dealing with that gene. Though some need to take potassium if taking a high dose of methylB12.
    That's all very theoretical. In reality, COMT and VDR mutations seem to have very little to do with who tolerates methylB12 and who doesn't. Also, VDR Taq has little impact on VDR gene function, and probably none when heterozygous, so isn't going to be a useful indication of methylB12 tolerance even if the underlying hypothesis is correct.
    Maybe not a bad idea in general, but low/normal doses probably aren't a problem if you don't have a significant MTHFR mutation. You didn't list any, so presumably you don't have any? And even if you do have MTHFR mutations, eating a decent amount of veggies on a regular basis works as well as methylfolate supplementation.
     
  9. TBrown2

    TBrown2

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    I'm sorry for all the questions.

    Which form of b12? Meth? Ad? Both? What about all the stuff that goes with it?

    If I suppliment with b12 will it fix the mutation so next time I take the 23 and me it won't show up? Or will it just treat the symptoms?

    How long will that take?

    How do I no if I can't tolerate the methyl b12?
     
  10. Valentijn

    Valentijn Senior Member

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    I don't know. No one does. People make guesses. MethylB12 is the easiest good form to get, so might be the easiest to try first. If you react poorly to it, then hydroxoB12 is a good alternative to try. AdenoB12 isn't involved in methylation.
    Your genes won't change. So if B12 helps, you'll probably need to keep taking it.
    You'll probably feel over-stimulated. People in the B12 subforum might have more information about that, and how to counteract it quickly if needed.
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The mutations, or variations, in the genes are something you are born with and do not change. I would agree with Valentijn that it would be wise to be sceptical about a lot of the information put out about methylation. I have been trying to find out from people on Phoenix Rising what reason there really is to link methylation to ME/CFS and have not had much joy. I does not make sense to me as someone with a medical training. And part of the rules of PR is that we are not supposed to advise people on personal medical treatment - partly because that might lead to delay in investigating something that has a completely different cause.
     
  12. Valentijn

    Valentijn Senior Member

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    Some practitioners have made some overstated claims with regard to the frequency of some mutations on genes involved in methylation. We do have higher rates for a few SNPs on peripheral genes connected to methylation, but for the major players (MTHFR, MTR, MTRR) we're quite normal compared to controls. And I think there's only one research paper thus far showing that, so there's nothing that's been replicated.

    I also have 23andMe data for 31 ME patients, and for 31 random people on the internet who at least haven't reported having fatigue issues (from openSNP.org). I've matched those "controls" up with the ME patients based on maternal haplogroup, since that's the easiest way to make sure we don't get a lot of odd results based solely on ethnic differences.

    Looking at all SNPs on the relevant genes, we're quite normal compared to controls. Even when taking into account the approximate reduction in gene functions, it's pretty much a wash. Patients have a 30.8% average reduction of MTHFR gene functionality, compared to a 31.8% reduction for controls. Patients have a 2.5% reduction in MTR function, compared to a 2.7% reduction for controls. And we have a 40.2% reduction in MTRR function, compared to a 38% reduction for controls. And we actually do better than the controls regarding BHMT SNPs.

    Basically patients and certain practitioners get all excited because they see "a lot" of certain mutations ... but those same mutations are just as common in the general population. Some people get lucky and have MTRR and MTHFR running at optimal speed, but 70% and 60% of that speed actually seems to be a lot more typical.

    So I don't think methylation has anything to do with developing ME/SEID, especially since many of us are near-optimal methylators, based on the limited genetic data available. But it's still useful to know that folic acid isn't going to be useful for someone with MTHFR C677T +/+, or that a vegan diet without B12 supplementation might be a really bad idea for someone with MTRR A66G +/+.
     
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  13. TBrown2

    TBrown2

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    what do you think of this? ive seen this article everywhere on here and wouldnt mind trying it

    B12 Treatment Plan

    FREDDD on B-12 Treatment
    I have divided up the vitamins and supplements in several categories. When brands are mentioned, they are essential as we have performed effectiveness tests and some brands don't work at all, a few work very well and most are mediocre. Some products are unique. These are for trying to maximize the probability of healing.

    Absolutely critical minimums for basic healing.

    • Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
    • Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
    • Solgar Metafolin 800mcg
    • Jarrow B-Right b-complex, 1 capsule twice a day
    • Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.
    • Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.
    Essential, usually needs supplementing

    • Zinc - 50 mg
    • Calcium/magnesium supplement
    • D - 3000-5000 IU total
    • A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
    • Vitamin E, NOW Foods Gamma E complex
    • Vitamin C – 4000+mg/day

    Possibly Critical Showstopper Cofactors - add after initial stages, any number of these in any combination may be required for maximum effectiveness or in some cases to work at all.

    • SAM-e - 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood
    • TMG - enhances SAM-e, methylb12, l-carnitine
    • L-carnitine fumarate (acetyl might work better for some), works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood
    • Alpha Lipoic Acid - enhances l-carnitine and adenosylb12
    • D-Ribose - enhances adenosylb12, l-carnitine, alpha lipoic acid, improves exercise recovery and energy

    Additional possibly helpful cofactors

    • Selenium
    • Lecithin
    • Chromium GTF
    • many other supplements

    THINGS TO AVOID

    Glutathione and glutathione precursors such as NAC and glutamine, undenatured whey. The glutathione induces immediate active b12 deficiencies, apparently by converting active methylb12 to inactive glutathionylb12 and rapidly excreting it.

    DEEP NEUROLOGICAL HEALING

    The most frequent neurological problems are peripheral neuropathies, often characteristic in stacking-glove distribution. Sublingual methylb12 and adenosylb12 appear quite satisfactory in healing these in a sizable percentage of the time. There exists a class of more severe neurological damage. This is sometimes identified as subacute combined degeneration and takes place in the brain and spinal cord. This can occur in people severely deprived of active b12s by diet or lack of absorbtion by other reasons.

    Another hypothetical cause may occur in people who for unknown reasons have a depressed Cerebral Spinal Fluid cobalamin level compared to their blood serum levels. In addition there may be mood and personality changes, hallucinations, sensory changes, psychosis and an abundance of neuropsychiatric changes. Some of these changes can be corrected with sublingual active b12s but some require much higher levels of active b12s than are usually achieved with sublingual tablets. In these situations usually only injections will help.

    "
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The problem for me is how anyone could possibly know this is the best mixture? You would have to do a hundred trials each costing a few hundred thousand to get the evidence. Surely this is just made up?
     
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  15. TBrown2

    TBrown2

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    If the founder of the site was the one who posted this wouldnt it have some credability?

    Is there a way to find a doctor to help me with this? So far ive gotten no where. I still have no idea what to take, how much, and when. Every article ive read on here seems to say the exact opposite of the previous one.
     
  16. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    Hi @TBrown2

    First - Are you sick or having unpleasant symptoms?

    If so, check out the Sustained Release Methylation Protocol to get some ideas that might inspire you to discover your own individual treatment.

    It's very simple and manageable with only 6 supplements. It was specifically designed to correct my MAO A R297R (which needs Vitamin B2 to work) and MTRR A66G (may need extended release B12 oil or injections) - after much trial and errors.

    For my MTRR A66G problem I have had great luck with B12 Oils that are rubbed into the skin. The sublingals don't even come close to being effective, in my experience.

    Best,

    Sherpa
     
    Last edited: Mar 30, 2015
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  17. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    @TBrown2 I'm one of those who has returned to the land of the living by using Freddd's Protocol. Others have had benefits from Rich VanK's SMP (Simplified Methylation Protocol). There are a couple links in my signature for FP. The first is a very simplified plan. The second contains Fred's comments on the many aspects of the plan. There's also a link to Methylation for Dummies, a helpful explanation. Caledonia has just created a blog with her many methylation links. aturtles has just posted a blog with some of Fred's more recent comments. pr member Eric has a very useful blog outlining aspects of both the SMP and FP, here. You'll have to make your way forward through getting a bit of understanding, and then be prepared for some trial and error. All of us have drawers of supps that haven't worked out for us. But working your way through may change your life.
     
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  18. adreno

    adreno PR activist

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    I generally agree, but there could still be functional deficits, not traced to genes. Anecdotally, many PWMEs seem to react well to a good vitamin B complex, as these vitamins are involved in energy creation, and the synthesis of intracellular antioxidants. However, I don't believe that the mega doses that some people advocate are helpful.
     
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  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I don't think who posted it makes much difference. I simply cannot see how anyone can come to know this sort of recipe is the best, or even helpful to a group of people who may not even have the same illness.

    I doubt that any honest doctor is going to be able to help since nobody has any idea about any of this - which may be why everybody is saying something different.
     
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  20. adreno

    adreno PR activist

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    It seems everyone is coming up with "protocols" these days. Putting together a list of supplements is not a protocol - it's a regimen.

    After you've had extensive clinical experience with patients, and preferably done trials, you might tentatively call your treatment plan a protocol.
     
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