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Help! I can't take folate without terrible over-methylation symptoms and need it for pre-pregnancy

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by josephinegolightly, Aug 5, 2015.

  1. josephinegolightly

    josephinegolightly

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    Hi,

    I am hoping someone will help me with this question. My husband and I are wanting to start a family, and I have what seems to be awful over-methylation symptoms, whenever I take methyl-folate or folic acid for pre-pregnancy. I have had cfs for a number of years and I have tried to get started with Methylation a number of times but each time I get terrible over-methylation and have to stop.

    I have tried:
    First time: 1mg Methyl-Folate (As part of Thorne's basic nutrients V) - 450 mcg Methyl B12
    Second time: 800mcg Folic Acid (As part of pre-natal vitamins)

    I think this might be related to my MAO-A and COMT defects

    My symptoms are: completely unable to sleep, wired, anxiety, hear palpations. It's just a nightmare.

    I really need some help in working out how I can take the folate I need without causing over-methylation, or how to successfully start the methylation process. Because otherwise we can't get pregnant and we don't have all the time in the world either.

    Please please please can someone help, I live in NZ and there are no doctors here looking into this and legally we can't import Amy Yasko's supplements into the country.

    Homozygous:
    MAO-A R297R (Amy Yasko's interpretation)
    MTRR A664A

    Heterozygous:
    COMT V158M
    COMT H62H
    VDR Bsm
    VDR Taq
    ACAT1-02
    MTHFR A1298C
    MTRR A66G
    BHMT-02
    BHMT-04
    BHMT-08
     
  2. PeterPositive

    PeterPositive Senior Member

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    Does methyl-B12 give you any side effects?
    If not, try taking B12 alone for 2-4 weeks and then reintroduce the folate in small amounts, such as 100mcg and see if you can tolerate it. If you can then you should keep going with that dosage for a while and eventually try to increase it.

    Lots of people have side effects starting with a high dose. Starting low and building it up gradually may help.
    I had similar issues with methyl donors and I went from unable to tolerate them to perfectly able to take them.

    good luck
     
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  3. whodathunkit

    whodathunkit Senior Member

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    I second @PeterPositive's suggestions. It sounds like you're starting too high with the folate and possibly don't have enough mB12 relative to the folate you're taking. They work synergistically and if there's not enough of one or the other, problems ensue. I believe your homo MTRR mutation gives you some problems utilizing B12, but don't quote me on that. I tend to go on my symptoms less than my snps, even though I did finally get my genes tested. But snps aren't my forte.

    Another thing to remember is that folic acid is NOT folate and in fact has been shown to be harmful. Stay away from folic acid and go for an actual folate supplement. The folic acid might be part of the problem with your sides, not just an imbalanced folate/B12 ratio. I like Solgar's Metafolin, but there are others. Not sure what you can get in NZ.

    Methylation has proven to be one of the most valuable things I've ever done for my health. It's a foundation of my current healing, and worth trying to see it through, if you can tolerate the side effects. I like Freddd's more aggressive approach but you might also read up on RichVanK's gentler approach, if you haven't already. You can read about both here on PR. Methylation is a complex topic but if you can just keep reading and don't give up you eventually start to understand some things. LOL

    Good luck! :)
     
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  4. dannybex

    dannybex Senior Member

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    Is your M.E. mild? I only ask because I can't imagine starting a family if one is very ill, unless one has a LOT of help.

    Having said that, I second the other's recommendations, to start first with B12, and start with a low dose for 2-3 weeks, then consider adding in methylfolate or folinic.
     
    Last edited: Aug 5, 2015
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    My thought would be that if you want to get pregnant go ahead and try. Having looked after many people with chronic illness who put off having children because things do not seem right I came to learn that there is rarely a good reason for delay. I am not sure why you need to take folate before pregnancy. The extra demand for cell growth does not really get significant until well into the pregnancy. I am also unclear on why you want to bother with methylation at all since there seems to be no good evidence for it having anything to do with ME/CFS or that 'methylation protocols' improve it. I personally wouldn't worry about folate and methylation at all with regard to ME/CFS. Having a baby is much more important!!
     
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  6. Valentijn

    Valentijn WE ARE KINA

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    You don't seem to have any MTHFR mutations, so extra folate might not be necessary at all. One thing you might try is an even lower dose of folate or folic acid - 400mcg is pretty typical. Alternatively, studies have shown that even for people with MTHFR issues, eating a diet with a good amount of vegetables during pregnancy is as effective as supplementing, when it comes to reducing the rate of birth defects.

    So if even a small dose of folate isn't tolerable, it should help to just be conscientious about eating enough veggies. And pregnancy might be a bad time to screw around with a methylation protocol. People do report bad reactions event under normal circumstances, and it doesn't make sense to complicate the situation.
     
    Last edited: Aug 6, 2015
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  7. brenda

    brenda Senior Member

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    Josephine

    I think you are very wise to plan improving your health before conception. Pregnancy and childcare is hard enough on our physical resources without taxing them further with nutritional deficiencies. I have found that improving overall nutritional levels allowed me to take methylated vitamins albeit in small doses but it is better than none. I could not take mb12 for a long time till l did this.

    Folate deficiency can cause neural tube defects which occurres early on and l thought any doctor would know that but then again, they are very ignorant regarding nutrition and a male doctor cannot know how exhausting pregnancy can be especially with deficiencies.

    So l would start by packing nutrients into your diet via diet and wait a couple of weeks to try methyl b's again. You can buy dried super foods that are great for this like green barley grass. Natural foods are better to increase nutritional levels.
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I just think it is a great shame for people to suggest without any reason that josephine should do anything more than, as Valentijn says, eat some veg. Its a darn sight easier and tastier - as well as being just as good.
     
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  9. Victronix

    Victronix Senior Member

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    Actually a lot of people on here report being significantly helped by the protocol.

    But I too was unable to move forward with methylfolate, despite over 1 year of trying very hard (and being able to manage methyl B-12), even taking mfolate in miniscule dosages, very gradually, with large amounts of potassium. I also have the MAO and COMT gene polymorphisms.

    I finally resolved to just have a high folate diet -- romaine lettuce, black eyed peas, chickpeas, artichoke hearts, asparagus, etc. The fact is, folic acid is added to all of the breads and flours specifically for the purpose of protecting pregnant mothers. So, between a focused diet and what you already get, I would imagine you would not end up deficient.

    I've been tested for folate and have been in the normal range while not supplementing it at all and on a gluten free diet (so none in my breads or other foods). When I was supplementing it as folic acid in my multi-vitamin (before I knew about folate), my folate blood levels were through the roof -- I have the polymorphisms and probably it was backing up in my system. That corrected once I stopped.

    This could not be the case for B-12 for me -- I had a significant B-12 deficiency even on a high B-12 diet, and it is absolutely required for me to function.

    Good luck on your decision!
     
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  10. Valentijn

    Valentijn WE ARE KINA

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    Is there any reason to believe she has a folate deficiency? Her SNPs don't indicate one. Though I suppose getting blood homocysteine tested should be a very cheap and easy way to find out. I also haven't heard of methylation being researched for safety or efficacy in pregnancy, so it might be an unnecessary risk without any known benefit.
     
  11. dannybex

    dannybex Senior Member

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    Have you looked after any patients with ME/CFS who are pregnant @Jonathan Edwards?

    Dr. David Bell M.D., who came to specialize in treating patients with ME/CFS after an outbreak in his hometown of Lyndonville and was in practice for more than 35 years, found that blood volume in ME/CFS patients was typically 80% of normal, and sometimes may be as low as 60% of normal.

    http://www.ncf-net.org/library/Bell-StreetenJCFS1998.htm

    Considering that blood loss is common during pregnancy, the possibility that an ME/CFS patient with already low blood volume could lose more of that precious blood, just may be something to consider, don't you think?
     
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  12. whodathunkit

    whodathunkit Senior Member

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    She isn't pregnant yet. She just said she wanted to get pregnant. She thinks methylation may help her with that. Since a healthy methylation cycle is necessary to overall health, that's not a bad deduction.

    The reason we suggest Josephine do this or that to address methylation is because that's what she asked about. She didn't ask for instructions on how to live her life in other ways. Presumably she is a responsible adult who will take a look at all options and act in a way that she thinks best for herself and any children she may conceive. I know some people don't give others credit for having that much sense, but I generally do.

    I think it's a great shame for educated people to think that just because there haven't been any double-blind controlled studies on a thing, it isn't a valid therapy. A lack of research proves ONLY a lack of research. One would think that fact is self-evident.

    But there *has* been a lot of research done about what factors existing pre-conception can positively or negatively affect fetal development, and lack of B12 in the mother is definitely a negative. Dunno about folate, but that's because I haven't looked.
     
    Last edited: Aug 5, 2015
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  13. brenda

    brenda Senior Member

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    Pregnant women in the UK are given folic acid for this very reason - to prevent NTD. It's a bit late but there is advice to start preconception.
     
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  14. TheChosenOne

    TheChosenOne Senior Member

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    Yes. My experience is that stimulating the methylation cycle, can fix anxiety partially. So, against common sense, taking low amount of methyl donors might be a good thing.
    I don't think that you need to be too worried about possible folate deficiencies and most of your problems can come from these two mutations.
    You don't have the C677T mutation, hence there is no need for supplementing methylfolate. I had success with low doses of methylcobalamin (< 50 mcg is a low dose) and hydroxycobalamin. Otherwise, you can look into fixing your shortcut route (BHMT) with either TMG or phosphatidylcholine.
    As far as anxiety goes, it is important to adress this issue. A lot of studies have shown that anxiety and stress during pregnancy can negatively affect your child. Things that work for me are GABA, magnesium and lithium orotate (especially the last one).
    Good luck.
     
  15. caledonia

    caledonia

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    You have MTHFR A1298C +/-. This is the minor mutation which would only block folic acid about 20%. It's possible that you don't need 800-1000mcg of folate. A smaller amount or simply eating more green leafy vegetables may be sufficient.

    In any case, you should avoid synthetic folic acid, such as in the pre-natal.

    Genetically, it looks like B12 is a bigger issue for you (two MTRR mutations). Unless you have glutathione mutations or environmental stressors such as mercury. You can pull your detox SNPs from the Genetic Genie detox panel. GSTM and GSTP are the ones that affect glutathione.

    Also, if you take more folate than B12, it can cause methyl trapping which can cause various negative symptoms. The rule of thumb is to take more B12 than folate to avoid this. Some people use a ratio of 5 to 1.

    It's also possible that raising methylation is causing potassium deficiency. (The sleep issues, anxiety and heart palps especially are making me think this.) In this case, some potassium supplementation such as NOW potassium gluconate should solve this problem rapidly.

    It's also possible that COMT is an issue. In this case, adding a low amount of niacin may be helpful, as well as using hydroxycobalamin instead of methylcobalamin.

    CBS issues are also possible, but I think less so than the other things I mentioned.

    Ben Lynch has good info on preparing for conception and pregnancy.
    http://mthfr.net/prenatal-supplementation-optimizing-your-future-child/2012/01/20/

    Then more good info on what to do if you don't tolerate methylfolate:
    http://mthfr.net/methylfolate-side-effects/2012/03/01/
    http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/

    Check out the methylation info in my signature link below. Especially check out Roadblocks to Successful Methylation Treatment.
     
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  16. Sea

    Sea Senior Member

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    It is not without reason. While it probably is true that eating a good diet is the best advice, in Australia it is a standard medical recommendation for women to take a folic acid supplement pre-conception and to continue throughout pregnancy. It probably doesn't make sense now that so many of our foods are fortified anyway, but Josephine is just following the latest medical "wisdom" in believing she needs to take it.
     
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  17. TheChosenOne

    TheChosenOne Senior Member

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    I would personally advice against the use of niacin. I know that it is adviced a lot in case of anxiety, but personally it made me depressed. Niacin slows down methylation.
     
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  18. barbc56

    barbc56 Senior Member

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    While I can't speak for @Jonathan Edwards, my take was that he was saying there is no need to take it before pregnancy, not that you don't take it during pregnancy. But he will need to address that.

    Diet as well as other measures are important so you are as healthy as possible when you do get pregnant.

    I think taking all the other supplements during pregnancy would have a greater possibility of harm. I do remember taking a prenatal vitamin during my pregnancies but they were prescribed which was reassuring since they aren't regulated in the states. With prescriptions you at least get some quality control. Otherwise you are taking a chance that there may be dangerous ingredients or that the supplements been diluted.

    In many ways we are a pill popping civilization, whether supplements or prescriptions. That's not saying avoid all prescription medications at all cost nor a supplement if you have a deficiency. I do take vitamin D it's low but I asked for the prescription form.

    But if you don’t know, the opposite could be true. Actually there have been studies that show some supplements can be harmful. Basing health decisions on a dna test that is not validated as far as what it means and then determining a therapy on this, in my opinion, is fraught with possible negative outcomes and that's what I think is self evident..

    But that's just me.
     
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  19. whodathunkit

    whodathunkit Senior Member

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    @barbc56

    I was addressing this quote specifically
    not disputing that some supplements can be harmful to some people. I know that they can. And FWIW, I agree with you to a great extent about basing supplement intake on DNA tests. IMO symptoms are a better guide to supplement intake, if you can monitor yourself well.

    But I stand by my contention that a lack of evidence means exactly that: that there is a lack of evidence. Further, and most importantly, a lack of evidence regarding the efficacy of a therapy in no way implies the therapy has no therapeutic value for a given subset of people. It just means it hasn't been investigated.

    When speaking of evidence we are trying to deal in known sureties, not conjectural possibilities such as "But you don't know, the opposite could be true."
     
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    No, I think it would be completely irrelevant to be honest. This sounds like pseudophysiology to me.
     
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