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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. K

    Has anyone tried a garlic free diet?

    Has anyone tried garlic free (0 garlic) for at least 3 weeks? This means checking processed food labels because garlic is in a lot of processed foods. (edit: Actually after a bit of checking, this means NO processed foods because they don't have to list garlic on the label and it can be in...
  2. K

    Glycine/Serine ratio and under/over methylation?

    Could the Glycine/Serine ratio could tell us anything about whether a person is over/undermethlyated? I don't think it could be used all by itself, but along with other factors it might give evidence for a person to figure out if they are an over or under methylator. Here are the NutrEval...
  3. K

    Poll: rs11627387 MTHFD1

    Here is another study where rs11627387 was found to be involved in the probability of birth defects, in this case TD defects. So far I haven't found any other studies with this SNP. In this study the risk was only increased when folate intake was low. I feel this is actually significant, because...
  4. K

    Poll: rs11627387 MTHFD1

    I agree that the study is not very strong evidence, but it is some evidence that this SNP produces a mild down-regulation. But I disagree with your apparent assumption that a mild down-regulation is insignificant. I think for some people it can be the straw that breaks the camel's back when...
  5. K

    Poll: rs11627387 MTHFD1

    Choline can be changed into betaine and recycle methionine through BHMT but taking a methionine supplement should help avoid draining choline, unless the person has a problem in the transsulferation pathway.
  6. K

    Poll: rs11627387 MTHFD1

    Also, why do you think that it does not result in any loss of function? What other reason could there be for it to have any impact on birth defects?
  7. K

    Poll: rs11627387 MTHFD1

    Yes, by itself it wouldn't be significant, but in combination with other MTHFD1 mutations and with oxidative stress, it might add to the negative effect. Since it might only be significant in combination or with certain stress conditions, it would be less likely to be spotted as a loss of...
  8. K

    Poll: rs11627387 MTHFD1

    Yes, I had the wrong SNP in at first and I missed getting it changed in that one spot. It's supposed to be rs11627387. Sorry about that. This study found that it is associated with increased risk for heart defects (at least in hispanic women). I take this to be evidence that it is a loss of...
  9. K

    Poll: rs11627387 MTHFD1

    rs12939757 (edit: this is supposed to say rs11627387) is a loss of function variant of MTHFD1 which is fairly common with AA (the risk allele) being about 12% on OpenSNP. I think this allele may be significant only when a person is experiencing oxidative stress.
  10. K

    Methyl consumption by niacine/niacinamide

    I think in the rat studies they found that if they gave B6 the homocysteine levels came back down. Keep in mind that 100 grams of beef meat (not fat) has about 500 mg of methionine. This would be used up by 500 mg of niacinamide, but not niacin, since most of the niacin in a dose that size...
  11. K

    Methionine cycle

    Hello Hope78. We used to be on a vegan diet for years, with plenty of vegetable protein, and eventually we ran into problems from low methionine. I bet your low values are simply due to low methionine intake. Try eating some meat every day. Chicken is fine if that is what you wish to eat. The...
  12. K

    Taking niacin and flushing 3 hours later?

    How long it takes to flush depends on a number of factors, such as how much food is in your stomach and how much exposure to allergens you have at the moment if you have allergies. In our family 250 mg is a low dose (we don't have CFS/ME or sensitivity to supplements). My husband has sometimes...
  13. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    That's interesting. Has anyone here had any experiences with things that might affect thyroid also affecting their methylation such as selenium or iodine?
  14. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    B12 only does 2 things, as far as has been discovered. The other thing besides recycling folate and methionine is that it allows the branched chain amino acids to enter the TCA cycle at succinyl-CoA. Succinyl-CoA is also used to make heme, which is needed for the ETC in the TCA cycle and to make...
  15. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    Moreover, SAMe activates CBS and inhibits MTHFR. I am not sure if this is what you are referring to. Low B6 levels can also inhibit CBS, maybe low serine could, too, because CBS requires B6 and serine. We already concluded that your B6 levels are not too low, but I don't know what they were at...
  16. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    I have been studying these pathways from sources on the internet for 3 years, ever since I learned that my very fatigued son, who was 16 at that time, had the MTHFR 677 mutation and he started taking 5 mg of methylfolate a day, which cured his fatigue, but then he became depressed instead after...
  17. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    How is your zinc now? If it is still low, that could explain the fatigue and brain fog due to insufficient purine salvage. In that case as long as you are not getting symptoms from undermethylation of histones (such as depression, etc. ) then taking higher folate is probably OK, but the thing...
  18. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    So you have not tried methionine when you suspend B9 and B12? This should alleviate all of the symptoms you mention because it relieves the need to recycle methionine and raises the SAMe levels to activate CBS and take care of homocysteine through the transsulferation pathway and take care of...
  19. K

    Please help !! Desperate!!

    Sensitivity to light is one of the symptoms of Pyrrole disorder. You might need to take more zinc and/or P5P. When you say chronic fatigue, I am assuming that you mean fatigue all the time and not that you have crashes (PEM)? This happened to my son and his fatigue was from low zinc. Zinc...
  20. K

    High Dose Niacin not enough to quench mild overmethylation

    Try niacinamide instead. 500 mg of regular niacin will mostly be excreted without methylation by conjugation with glycine. Niacinamide will drain more SAMe and stays in your system longer. You might not need so much niacinamide, you might want to start with 100-250 mg. Or you could try some...
  21. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    I see from reading your past posts that you drain zinc and not so much B6, so it probably isn't B6. By the way, regarding other posts you have made, we have found that with pyrrole disorder taking folate makes zinc and B6 get drained more quickly, if one or both of them are being drained. Some...
  22. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    How long did it take for SAMe and niacinamide to "poop out"? Was the amount of time the same for both of them? In our family we have observed this often, and I believe that it is a result of the body adjusting the levels of the enzyme. Since SAMe and niacinamide have opposite effects on...
  23. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    Have you ever tried using niacin instead of niacinamide? It causes a bothersome flush, but it would not drain your SAMe so much.
  24. K

    Niacin vs. niacinamide - SAMe/SAH ratio

    It seems to me that as far as under-over methylation or the SAMe/SAH ratio is concerned, niacin and niacinamide are opposites, at least in larger doses. In a low dose of about 50 mg, most of the niacin gets changed to niacinamide before being excreted. GNMT, glycine N methyltransferase, keeps...
  25. K

    Over VS Under Methylation - the tug of war

    I think I am finally starting to really get a handle on this issue. Dr. William Walsh says that all the mutations a person has creates a type of tug of war, so no one mutation will tell you if you are over or under methylated (assuming you are one or the other and not in a normal state). Photo...
  26. K

    The myths of overmethylation

    OK, I have come to the conclusion that taking high doses of methylfolate can significantly inhibit GNMT and this is why it can cause overmethylation symptoms from high SAMe. Taking folinic acid would probably be a better choice for most people, unless they can't metabolize folinic acid. If a...
  27. K

    folinic acid vs methylfolate; how do they affect you?

    So you noticed some symptoms the first time you took it?
  28. K

    folinic acid vs methylfolate; how do they affect you?

    Did you feel the effects the same day or did it take a while to build up?
  29. K

    folinic acid vs methylfolate; how do they affect you?

    For those who have taken both, do any of you have anxiety type overmethylation symptoms with both? Or only with methylfolate and not folinic acid? Thanks, Kim
  30. K

    The myths of overmethylation

    Thanks for the data. Is the type of arthritic symptoms you get in hours from folate the same as from food items or does it seem different to you? Do you take P5P? How much do you take and how does it affect you? Does the b12 take days to make fatigue and PEM worse or is it the same as with too...