Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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I think I got over-methylated?!!! Need help!

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Gingergrrl, Aug 26, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I started methylation a few weeks ago first with Methyl B-12 shots and then added in 5-MTHF (capsules.). I am compound heterozygous on MTHFR genes.

    I started the B-12 shots at 5 mg/ml and started the folate at 1/4 of a 2.5 capsule. All was fine for two wks so I upped the shots to 6 mg and the folate to 1/2 capsule and still fine.

    Well, today I upped the shot to 7 mg and the folate to the full capsule of 2.5 mg. I ate breakfast and took my other supplements.

    I started to feel wired, agitated, jittery and shakey. I was typing at computer and got sudden headache, felt like I could throw up (but didn't) and my HR went up to 140 bpm.

    Thank God my husband was home b/c my HR wouldn't go down and I started to panic. He gave me 1/2 Atenolol (which I have not needed in a week b/c no tachy) and gave me potassium, magnesium, salt tablets & Niacin which I knew from @caledonia can reverse over methylation.

    I have been laying down and feel much better now. Today was the first time I took the 2.5 mg of Folate and will not to that again!

    Does this sound like over methylation and did I handle it right? Is it okay if I go back down to the half capsule of Folate again? I'd love to hear any feedback and advice b/c I want to continue with the methylation supplements.
     
    Last edited: Aug 26, 2014
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  2. Mary

    Mary Senior Member

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    I think it sounds like overmethylation, and it sounds like you and your husband did the exact right things. I learned recently from Jim on another board (as you learned from Caledonia) that niacin can stop over methylation. Too much niacin can slow it down too much as well. Niacin is also helping me a lot with sleep. I've read it stimulates or enhances the GABA receptors in the brain.

    If I were you I would go back to the last dose you felt well on, stay on it for awhile, then maybe up it gradually. You doubled your dose of folate overnight from 1/2 capsule to a whole capsule which appears was too much too fast.

    I did something similar last June - I doubled my folate from 1600 mcg. (two 800 mcg. tablets) which I tolerated just fine, to 3200 mcg. My reaction was quite different from yours though - after a couple of days I developed quite strong mercury detox sympoms - was very spacey, felt like I was on a drug, difficult to concentrate. It was very strong. It took me a couple of days to figure out what was going on, then I cut out the folate altogether for a few days, then went back to my usual dose, but it took 2 weeks for the detoxing to stop. I was not prepared for that.

    About a week ago I again increased my folate but only by 25% (400 mcg.) instead of 1600 mcg. and am doing okay on this, and after another week or so will increase it again by 25% and see what happens.

    Good luck!

    Mary
     
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  3. sregan

    sregan Senior Member

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    @Gingergrrl

    I'm not sure what overmethylation is. Are we saying methylation is going to fast If that's it what exactly is causing those particular symptoms? Mary is implying a detox reaction.

    If it's instead potassium deficiency, can it come on that quick? If it is potassium deficiency does that go along with donut hole folate deficiency? Might have better for you to take the Potassium by itself first and see if that fixed your HR. Was that your only symptom btw?

    Did those supplements help and how long did it take and how much of each did you take?
     
  4. Mary

    Mary Senior Member

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    I wasn't implying a detox reaction for Gingergirl - I experienced a detox reaction when I doubled my folate, but from what I've read it sounds like Ginger experienced overmethylmation, a different phenomenom - I think it means too much methylation or too quickly, as opposed to not enough - but, I am only repeating what I read elsewhere and know there are many people out there much more knowledgable than me about this issue.

    Also, FWIW, I have experienced low potassium as well - when I first started the methylfolate - low potassium symptoms for me were severe fatigue and lethargy, which gradually abated once I started taking potassium and titrated up to a sufficient dose. But my heart rate did not shoot up.

    Mary
     
  5. adreno

    adreno PR activist

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    Right, that sounds like overmethylation and you handled it fine.
     
  6. sregan

    sregan Senior Member

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    Here's the result of some searching:

    From Caledonia:
    http://forums.phoenixrising.me/inde...ults-are-in-need-your-help.31848/#post-495972

    So overmethylated woud mean a surge or just having too many methyl groups in the system. COMT ++ people seem to be predisposed to that. What symptoms that would produce probably varies with the individual.

    I thought palpatations were related to low potassium which is why I mentioned that above. And from Freddds writings he urges that most problems with methylation can be fixed by upping your Mfolate (and mb12 with it).

    From Freddd:
    http://forums.phoenixrising.me/inde...hylation-urgent-help.27099/page-2#post-492714

     
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  7. Critterina

    Critterina Senior Member

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    Like your post, @sregan ! I've been thinking all morning about what SNPs may predispose one to "overmethylation". I may make new thread asking people who have experienced it about certain SNPs and the symptoms they attribute to overmethylation.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    I am typing my update to this thread in my on-going dedicated thread in the anti-viral section called "Gingergrrl's Journey with Famvir." The last three days since the over-methylation incident have been the worst since I started this entire journey and quite possibly of my life (illness-wise.) Once I am back to baseline, I promise to learn how to link the two threads together.
     
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  9. caledonia

    caledonia

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    I think you diagnosed the problem correctly and did the right thing. My suggestion would be to wait until you feel ok again, then go back to the original dose you were tolerating (or even lower, maybe much, much lower). Then hold for 6-8 weeks until you get through the honeymoon period where it seems like nothing is happening.

    When methylation kicks in, assuming no COMT mutations, you might experience potassium deficiency and/or metal or other detox.

    If things get too uncomfortable, stop the supps, do the niacin if necessary, and let it all settle out. Then restart at a much lower dose. Rinse and repeat until you find a dose you can tolerate long term.

    Muscle testing might be helpful to nail down the proper dose quicker.

    1/4 of 2.5mg is still 625mcg, which is still a high dose to start with. That's more like a final dose, unless you happen to be one of the people who need high dose methylfolate. And with the reaction you had, I would say that's not you.

    You can also try something like taking the methylfolate only two days a week. The methylation cycle will keep cranking with only a little input now and then.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @caledonia thank you for the info and this incident has made me realize how little I actually understood re: methylation and how dangerous it can be when someone experiences overmethylation. I do not know what would have happened if I did not have the beta blocker and Niacin on hand to counter-act it and may have ended up in the Emergency Room.

    I am now, per my doctor, off all methylation supps for two weeks and off my thyroid med, and will re-start everything after some blood tests and re-start it at a much slower pace. 2.5 mg of M-folate was way too much for me and I will start at like 600 or 800 mcg (or maybe even lower?) I will see what he advises.

    What dose would you advise for me? I also have another question, are "Metafolin" "5-MTHF" and "Methyl-Folate" all exactly the same product? Also, are there some people who just cannot handle methylation and try but just cannot tolerate it?
     
  11. caledonia

    caledonia

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    2.5mg = 2500mcg which is a huge dose. 400-800 mcg is a typical final dose for most people, a dose that you could aspire to very gradually work up to, not to start with.

    I suggest starting with 1/8 or lower of that dose. That way if you get overmethylated, it will only be 1/8 as bad.:) You should adjust your B12 to be in line with that. Most docs suggest 3 to 5 times higher on the B12 than the folate. Freddd suggests taking the same amount B12 as the folate.

    As an example, I tried doses like 50mcg methylfolate every day, but it was still too much. I wasn't overmethylating, but I was having metal detox symptoms which were uncomfortable. So now I'm taking something like 4mcg, two days a week to allow time for the metals to come out. I take about 16mcg of methylB12 per day (divided into 4 doses per day). I can get more B12 in, than if I do it in one big dose. Otherwise I get metal detox symptoms again.

    Once the metals are out, I should be able to increase up to "normal" type levels, unless there is some other roadblock awaiting me that I'm not aware of. :)

    Metafolin, 5-MTHF and methylfolate are all the same.

    As far as people trying methylation and not tolerating it - there are many roadblocks to successful methylation (19 or 20?), which is why I wrote the document with that title (which is linked in my signature links). People who haven't tolerated it have likely run into one or more of those roadblocks, but didn't understand how to solve it.

    So I think most, if not all people, if they go low and slow enough and understand how to fix roadblocks, should be able to tolerate methylation supps.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @caledonia Thank you so much and I have learned my lesson from this experience. For whatever reason, my CFS doctor endorses very high doses of methyl-folate and said that his patients tolerate them well (much higher than the 2.5 mg that I took) so this is confusing for me! But now we know that for me, that my body cannot tolerate it and I will never ever, ever make that mistake again!

    I am to be off all methylation supps for two weeks and then try at a slower pace. I wanted to ask you, where do you find the low dose 5-MTHF or methyl folate? I am thinking of starting around 400 mcg and building up to the 800 mcg (so my bottles of 2.5 mg will not work.) Do you buy a certain brand or have them made at a compounding pharmacy?
     
  13. caledonia

    caledonia

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    @Gingergrrl I just saw your other thread about how symptoms are continuing after the one day (or one dose?) of doing niacin. Methylation can keep cranking (even longer than a week). If you think these are still overmethylation symptoms, my suggestion would be to keep 50-100mg of the niacin every 4 hours until you feel settled back down. One time I got cranked up enough that I had to do this for a week. If I didn't have the niacin, I don't know how many weeks it would have been....

    Ben Lynch also suggests taking niacin every half hour to hour.

    Note: when my methylation started settling down, then I started getting the niacin flush - meaning all the methyl groups were sopped up. So you can use that as an indicator that you've done it enough.

    Those thoughts you're having are because neurotransmitters got stirred up. Rest assured, you can get this all to settle down and things will go back to baseline. Then when you're brave enough, you can cautiously restart.

    These are actually all good signs that methylation is going to work well for you - you just need to get things in balance and not over do it.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @caledonia Thank you for reading my other thread and that is my dedicated thread for my treatment journey with Famvir but I felt I needed to post this part in the methylation section so more people would see it.

    I only took one dose of the 2.5 mg folate and have not taken any folate or B-12 shots since the incident. It lasted Tues-Thurs but I do feel better today. I didn't realize that I could still benefit from Niacin the next day and now I know for next time (even though I do not intend for there to ever be a next time!)

    Thank you for letting me know that this means that methylation can work well for me in the future (b/c I interpretted it to be the exact opposite- that I just was not a candidate for methylation and another failed treatment on my part that works well for others.)

    Do you think the Methyl B-12 shots at 5 mg/ml (where I initially started and tolerated well) should be okay to resume in two weeks along with the much lower dose of folate?
     
  15. caledonia

    caledonia

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    Read my document Start Low and Go Slow linked in my signature for details. But basically, you start with a predetermined amount of methylfolate powder (whether that comes from a capsule, or you take a tablet and crush it into powder yourself). Then divide it into empty gel capsules.

    You can get it down as far as 1/256 of one capsule or tablet. So if you started with the 2.5mg capsule for example, you could get it as low as 9.76mcg. (2500 divided by 256)
     
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  16. Sushi

    Sushi Senior Member Albuquerque

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    I'm not caledonia but...FoloPro is 800 mcgs. You still have to cut or crush it to divide it--not difficult (there is even a thread on how to do it!).

    I had to start with about 50 mcgs but could slowly work up. The trick is, the effect of these supps is cumulative so that means you have to stay at one dose for a while before it is "safe" to increase.

    Sushi
     
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  17. caledonia

    caledonia

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    No, I would make the B12 track along with the methylfolate. 5mg is a huge amount. (5mg = 5000mcg) Typical final doses are 1000-2000mcg. That's a dose you should aspire to work up to, not start with.

    So let's say you started with 50mcg of methylfolate. Your methylcobalamin should be either the same (50mcg), or 3 to 5 times higher (150 - 250mcg), depending on whose theories you prescribe to. It sounds like your doc likes to have B12 2 times higher than methylfolate. So if you wanted to try that, it would be 100mcg.
     
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  18. caledonia

    caledonia

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    Yes, Folapro is a nice supp. It's a tablet which is easy to crush into powder. You could get this as low as 3.125 mcg if you divided it into 1/256.
     
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  19. Sushi

    Sushi Senior Member Albuquerque

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    @Gingergrrl We used to talk about a toothpick dose: crush a tab of FoloPro, wet the end of a toothpick and pick up as much FoloPro as the toothpick would carry--suck on toothpick!:lol:

    Sushi
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    I did read your guide "Start low and go slow" and we did buy empty gel caps but just trying to divide the powder into equal halves or quarters was difficult for us and I never felt that they were accurate. Can a compounding pharmacy do this for you? Also, how long would you recommend being on one dose before upping it to the next level? I realize now that I completely did not understand this the first go-round and am asking many more basic questions now.

    His initial recommendation was 10 mg/ml of B-12 shot and 15 mg of Folate. I knew this was too high based on my own body (even having never tried it before) so we lowered it to a much lower amount. If someone were to take B-12 shots in isolation (without folate) would 10 mg or 5 mg be reasonable or still too high? I realize this would not start methylation but just trying to understand. If I re-start at 5 mg/ml B-12 shot and 800 mcg Folate (and then just keep it there) would that be too high?

    @Sushi I clicked on the link for the FoloPro but it does not show any dose amount on the bottle. It shows you can buy 60 or 120 pills, etc, but I am missing where it says the dose. If you guys think this is a good brand, I will order it. Can you guide me to where it says the dose/amount on the bottle. Thanks!
     

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