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Extreme reaction to methylfolate

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Tina030, Mar 21, 2017.

  1. Tina030

    Tina030

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    Methylation has been a huge struggle for me for more than 2 years now.
    I've tried taking methylfolate several times, but something goes horribly wrong. Not immediately, but very slowly I start to feel worse. Until I'm almost completely bedridden, totally exhausted, like all strength and energy is sucked out of me (which also affects my brains, it's really hard to think clearly).
    It takes a couple of weeks after I start with folate before it gets this bad. And it takes even longer after I stop taking folate before I get some strength back.

    I have no problems taking b12. Before I did the 23andme test I took lozenges of 500mcg L-methylfolate and 1500mcg b12 (adeno+methyl) for a few months, which caused the first massive setback in my health.
    I stopped taking those tablets and started with both forms of b12 10mg twice a day. It took a few weeks, but the change was remarkable. I felt better than I had in years! (A few years earlier I was diagnosed and treated for Lyme).
    That changed when my doctor advised me to slowly add folate again (from 100 to 800mcg). This was Sept 2015 and I haven't felt that good ever since.
    Last January I tried folate for the fifth time, with only 50-75mcg every other day. The results are just as bad, apparently I don't tolerate any folate.

    I've tried potassium, Niacin and other b vitamins, different kinds of folate (Quetrefolic and L-methylfolate), but nothing changed.
    My doctor has no idea what causes my extreme reaction to folate.
    I've searched a LOT but haven't found anything useful so far.
    Anyone who knows what the problem might be? Any advice would be greatly appreciated!

    My SNPs:

    Homozygous AGT, GAD1, MTHFR C677T, MTRR, PEMT, SOD3, TCN2 (MAO A R297R, VDR Taq, ITGB3, CYP1B1, CYP2C9, NAT2, IFIH1, IRF5, TRAF1, C3, FCGR2A, NDUFS7, SLC19A1, HLA-DRB1)

    Heterozygous BHMT, BHMT-02, BHMT-08, CBS, CBS A360A, COMT H62H, COMT V158M, DAO, DHFR, FOLR2, GIF, MTHFD1, MTHFD1L, MTRR A664A, NOS2 NOS3, SOD2 (C11orf30, HLA-DQB1, IRF6, PVT1, CYP4V2, F10 F11 F12, CYP1A2, CYP1B1, GSTP1, NAT2, IGF1R, PSMB8, CD14, FCER1A, IL5, RAD50, RAG1, CCL2, COX5A, COX6C, APOE, ATG16L1, IL4R)
     
    vortex likes this.
  2. Mary

    Mary Senior Member

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    @Tina030 - how much potassium did you take?
     
  3. Oberon

    Oberon Senior Member

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    Do you have issues with foods that contain natural folate i.e. leafy greens? It's possible that you really just don't need the extra methyfolate and even small quantities are overdriving your methylation cycle.

    You can also try taking B2 instead of taking methylfolate directly and see if that helps.
     
    Cheesus likes this.
  4. Victronix

    Victronix Senior Member

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    I also had an extreme reaction to tiny tiny amounts of mfolate and potassium could only do so much to help that. It was like walking a tightrope all the time and consuming massive amounts of potassium in several forms, including potassium gluconate. Eventually I was forced to stop.

    My husband had a less extreme but similarly negative response to mfolate. He has tried many many supplements and other types of substances (mostly years ago) and he is convinced that there is something structurally wrong with methylfolate in it's currently available form, that some amount of wrong-oriented versions are mixed in, and that the process of synthesizing it is simply not fully correct yet.

    So we both stopped taking it, and moved on. I just try to get enough folate from foods that are high in it, and when I was tested, my levels were normal. I avoid taking any non-food folate at all, and am on a gluten free diet, so do not get it in "enriched" wheat products.

    Neither of us had that type of trouble with mB-12, even as we both need potassium with enough B-12 (and exertion, etc.) -- nothing as bad as mfolate.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    I am going to be attempting MB12 and MFolate again (after a horrible reaction in 2014) but at a much lower dose this time. Was not planning to do this but my blood tests came back very low on B12 and Folate and we need to bring them up. Most of my blood work was really off this time and not sure why. I already take a prescription Potassium so I don't think this part will be an issue.

    There are so many threads on B12 & Folate, I had no idea where to post this but this seemed like a good place. It seems like so many people do not tolerate this protocol at all (and I think I might be one of them) but am going to give it another attempt since it is several years after my first one and at a much lower dose. :nervous:
     
  6. Eian Mcneely

    Eian Mcneely

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    Have you tried reducing the dosage, or with your physician consultation you can use Hydroxy or Adenosyl B12....
     
  7. Oberon

    Oberon Senior Member

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    This is the advice I wish I followed before I made everything a whole lot worse. I would deeply consider moving on if you aren't reacting well and focus on the things that are helping.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    I searched for hours online yesterday for hydroxy B12 (and the non methyl forms) but they all seem to come in a lozenge or sub-q form with ingredients like "cherry flavor" or things I suspect I'd be allergic to and didn't want to risk it. I do very poorly with unknown dyes, colors, & flavors. I finally found a brand called "Pure encapsulations" which didn't have any bad additives. So am going to start w/very low dose and hope for the best!
     
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  9. caledonia

    caledonia

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    My suggestion would be to look through my document Roadblocks to Successful Methylation Treatment (click on the link in my signature).

    Some people don't tolerate folate and do better with SAMe, as the folate ends up depleting serotonin (according to William Walsh). This is more of a mental health issue.

    I don't tolerate folate - At first I get some energy, but then I start crashing as if I had PEM - achy, fatigued, etc. Even eating too many leafy greens does the same. Your case sounds more like mine.

    I have toxicity from mercury, lead and arsenic and am chelating them out with the Cutler frequent dose chelation procotol. The connection is that mercury and lead inhibit the methylation cycle at methionine synthase, where B12 is a co-factor with folate to create methyl groups. But I don't know an exact mechanism at this time.

    I haven't gotten far enough along to see if I'm tolerating folate better after some time chelating, although I would expect that to happen at some point.
     
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  10. Grimace92

    Grimace92

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    Sorry to hear about your suffering. I am far from an expert, so I hope you get the help that you need with this thread. I see you are +/+ for MTHFR C677T so I believe according to Dr Ben Lynch your MTHFR enzyme is working at only 30% effectiveness. So you clearly need methylfolate. I guess the things we need the most, and are the most deficient in, also tend to be the most troublesome things to correct.

    Methylfolate can be a real pain in the butt to get started, it certainly has been for me. I'm only up to 200mcg. It took me 6 months to get that far.

    I started at micro doses as well, and have worked my way up, feeling pretty miserable the whole time. I have wanted to give up many times. I don't know why I haven't. I guess reading the stories on this site have kept me going to some extent. Plus at 43, I am completely fed up with a lifetime of poor physical and mental health. It feels like do or die time.

    Recently I have gotten all 4 pieces of the deadlock quartet at least minimally online (750mcg mb12, 30mcg Adb12, 200mcg methylfolate, and 40mg LCF), I am finding that I feel pretty fantastic for about 5 hours after taking them! This is very unusual for me. I am not used to feeling fantastic, in any way shape or form. I believe things take a dive after in the early evening because of folate deficiency symptoms creeping up. 200mcg per day isn't enough to maintain folate levels for proper methylation. I believe Freddd has said that low methylfolate intake, for those who critically need this nutrient, can be a very painful place to be (paradoxical folate deficiency). With low doses, processes which need methylfolate to run properly have been turned on, after barely functioning for decades, and they want more folate now! Relief only comes at higher doses (ideally spread throughout the day) which better keep the "machinery" running. (I hope I have interpreted Freddd's words correctly).

    Anyway, hang in there. I just wanted to post some words of encouragement. I hope you get some good advice.
     
  11. lnester7

    lnester7 Seven

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    Oh My it sounds like me!!! I cannot do mfolate. I do well on parque hb12 (sublingual). If anybody finds a way let me know. At this point I have given up trying mfolate since my brains swells so bad and basically I loose consciousness. I have had some by mistake (my Doctor recommended iron that had it in it) and I was gone for 3 days.

    So since I react so bad I just do not take it, I am +- for the A1298C
     
  12. Hyperflux

    Hyperflux

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    I'm the same as you, can't tolerate methylfolate no matter the dose. I respond very well to SAM-e though but it's so expensive. I'm only hetero for A1298C and hetero for MTR/MTRR so it's no big deal. Both my COMT's on genetic genie are hetero though. I'm thinking of just using one cap of Jarrow B-Right once a week Monday morning so my system at least has some methylB12 and methylfolate, and I really don't think I need to take any of the B-vitamins daily.
     
  13. Hugo

    Hugo Senior Member

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    Me to, I had no idea that vitamins could damage me that much. I still havent recovered from brainfog and have a brainfog state off and on. Something I didnt have often before.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    I've never had brain fog but I had an overmethylation reaction (when I attempted a methylation protocol in 2014). It gave me severe tachycardia, insomnia, agitation, flushing, and was absolutely horrific. But I tried 10 mg methyl B12 injections and 2.5 mg of Folate which was just way too high.

    This time am going to be doing it b/c my blood test results for B-12 and Folate were extremely low to the point my doctor was very concerned they were dangerous and could cause neurological symptoms. I was going to do hydroxy B12 but all I could find were lozenges or sublinguals (not pills) w/ingredients I'd most likely be allergic to.

    So I ordered methyl B12 and Folate but instead of the 10 mg B12 I did last time as injections 3x/wk, I ordered 1 mg (1000 mcg) and will cut in half or even quarters to start. And instead of starting with 2.5 mg Folate, I ordered 400 mcg and will also divide into halves or quarters and will start as low as needed.

    And I may learn that I do not tolerate M-B12 or Folate period at any dose. But since I am compound heterozygous on MTHFR tests and my B12 & folate were so low on blood tests, am willing to give it another try. My body may be different from when I tried in 2014 and also starting w/a much lower dose.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    I started my 1 mg of Methyl B-12 today and so far so good. Am going to wait a few days before adding the Folate so I don't start two new things at once.

    I have a question for everyone. Is B-12 always a red or pink color no matter if inside of a pill, in an injection etc? I want to confirm it does not have any added dyes (even though the bottle says it is pure and no added flavors or colors, etc). If it does have something, I am not allergic to it. But am still curious!
     
  16. Hugo

    Hugo Senior Member

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    I think its cobalt in B12 that give B!2 its red color. My B12 shots of methyl for example had an intense red color.
     
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  17. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    My transdermal oils are bright red (scarlet)
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    I wanted to post an update and grateful for any feedback in advance. In 2014 I had a HORRIFIC over-methylation reaction to M-B12 and M-Folate but I took a very high dose. At the time I ended up taking Niacin to help reduce the reaction (along with Atenolol and Klonipin) b/c it was so incredibly severe and close to akathisia.

    I never intended three yrs later to attempt M-B12 and M-Folate again but my labs were very low on both. The bottom of the M-Folate range was around 5.4 and mine was like 1.5 or some crazy low number and the B-12 number was not much better.

    It turns out (this time) that after about a week on M-B12 (1000 mcg) I actually did quite well. However, as soon as I added the M-Folate (400 mcg) I had a horrible reaction today although it was not as bad as 2014 b/c the dose was not nearly as high. So I am not sure if I simply do not tolerate M-Folate, period, at any dose or if it is the combination of these two supplements that opens up methylation (and regardless which one is taken first or second, the second one will cause the reaction)?

    I did not get actual akathisia (thank God) but I got very agitated with flushing, tachycardia, confusion, shaking, etc. It absolutely was not an allergic or histamine reaction and I knew immediately it was over-methylation but too late to do anything at that point (and I did not have any Niacin at home this time).

    My questions are:

    1) Which type of Niacin works for over-methylation reactions? Is it the flushing or non-flushing type and does it have a certain name? I had this info back in 2014 but do not recall it now.

    2) Is my reaction to the M-Folate or is it to the two in combo (regardless of the order)?

    3) My doctor said that if I cannot tolerate M-Folate (which is the superior form) at this point it is better to take plain old folic acid than nothing b/c we need to bring up my blood levels. Does anyone recommend a version that is not M-Folate and also does not contain any artificial dyes/colors?

    Thank you in advance. I am truly more hesitant to mess with methylation than to try Rituximab (as weird as this sounds) but am going to keep trying for now!
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I tried adding 400 mcg of M folate and also had a very bad reaction. I was too high a dose. After stopping for a week I crushed a tab and dipped a wet toothpick into it--that I tolerated and worked up from there.
    I'd say that it is most likely that the combo revs up methylation--not that you would react to the folate on its own.
    In my experience, the combo. I can now take 800 mcg of M-Folate with 1 mg of B12, but it took months to work up to that.
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    I literally might have to try the toothpick approach and did this w/mold binders in 2015. Am not opposed to it at all and would love to be able to tolerate M-folate without the incredible agitation/tachycardia etc reaction.

    Thank you and that was my guess. That it is the combo that causes the reaction vs. the order you take them in.

    Do you happen to know which type of Niacin to have on hand for over-methylation reactions? No worries if you do not!
     

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