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Extreme reaction to methylfolate

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arewenearlythereyet

Senior Member
Messages
1,478
Gingergrrl said:
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!
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I think go low on folate is probably the answer. I don't think everyone has a bad reaction to folic acid so it might be worth a try with this also. There are other co factors as well (b2 etc) It might be worth looking at a b complex which often have lower levels of folate in them? That way you will also get the other b vitamins you need?

I took Niacinamide, but i don't think it matters which form of b3 you take. I've dropped this down by half recently and not noticed a difference. I take potassium for the heart palpitations.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
arewenearlythereyet said:
I think go low on folate is probably the answer. I don't think everyone has a bad reaction to folic acid so it might be worth a try with this also. There are other co factors as well (b2 etc) It might be worth looking at a b complex which often have lower levels of folate in them? That way you will also get the other b vitamins you need?
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Thanks and this reaction was horrible (although better than the one in 2014). I am stopping the Folate for a week like Sushi said and then resuming with a literal toothpick dose. I do not take a B-complex at this time (but have in the past). This attempt was per my doctor b/c my blood work so low on B-12 & Folate and he wanted me to do this for four weeks and then re-test.

arewenearlythereyet said:
I took Niacinamide, but i don't think it matters which form of b3 you take. I've dropped this down by half recently and not noticed a difference. I take potassium for the heart palpitations.
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When I Google, have found different opinions re: the Niacin. I don't want to take anything that could raise histamine (this would be very bad for me) and so far my regular Atenolol and some Klonipin reduced the reaction last night. I can get Tachy into the 160's (sinus tachy but still very uncomfortable) and this got it down. I already take a prescription Potassium (20 MEQ) every night since 2014.

Am going to try again (in a week) with the toothpick dose of M-Folate and if I can't tolerate this, will try regular old Folic Acid (which I know is not great but might be my only option).
 
A

arewenearlythereyet

Senior Member
Messages
1,478
I had a weird histamine response with Niacinamide. I was taking 500 mg before starting methylation. I got myself up to 10mg methylcobalbamin sublingual and 1200mcg Methylfolate OK. When I switched to the subdermal oils which are a lot more potent I had a strong reaction ....mainly as a raised lumpy skin rash where I applied the oil.

I halved the Niacinamide and the rash/ reaction went away ...eventually . I wasn't eating anything particularly different at the time and it was clearly a localised reaction to the oil since you could see my finger marks where I applied the oil and it happened on the various parts of my body I tried. I guess it's the combination with the high methylcobalbamin that causes the reaction?

On that basis I would recommend going low with the b3 if you try it. Perhaps a second toothpick?

Good luck with the micro doses. Hopefully you can get your b12 and folate levels up.
 
T

Tina030

Messages
5
Thanks for all your messages, I really appreciate that!
I think it's really helpful, but I'm still trying to read it all. I can hardly concentrate and process information, which is really frustrating. It literally takes me days to write a message.
Reading and communicating in English makes it even more difficult.

@Mary I built up to 1000 mg a day and took that for +3 months. This was the 4th time I tried folate and I was really hoping it would be different with potassium. I still got worse after a few weeks, so I assumed potassium wasn't the problem.
You asking this question made me realize I was probably wrong. I feel much worse this time without potassium. I didn't have this extreme weakness back then (when I even took a much higher dose of folate). I guess I was wrong to think there would be just one problem...

@lakesarecool I eat green smoothies every day, so my intake of natural folate is probably quite high. Which is also why I don't understand my reaction to methylfolate. I will add B2 to my supplements again.

@Victronix I hope it's not rude to say, but I'm so glad I'm not the only one having so much trouble with folate. I always had people doubting my illness but this made it even worse. How do you explain a 'simple' vitamin causing this debilitating situation? Even my doctor didn't think folate could be the cause. Your husbands idea of something being wrong with mfolate sounds convincing. I didn't seem to have a problem taking folic acid though, I remember taking it in a multivitamin for about 2 years a little while before mfolate.
I think I'll stick with natural folate for now.

@caledonia Wow, that's an impressive document you've made! I'll try to read it thoroughly in the next days. Thanks for sharing!

@Grimace92 I remember reading about the paradoxical folate deficiency. Interesting! I feel much worse now with 50-70mcg than I did 1.5 year ago when I took 800mcg. It may be worth a try, but I don't think I have the courage right now. The last time I tried folate I didn't think I could get worse than I already was. Boy was I wrong...
Have you considered taking a much higher dose? I think it's really brave that you kept taking methylfolate that long while feeling so miserable! Tnx for your encouragement!
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
arewenearlythereyet said:
I had a weird histamine response with Niacinamide.
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I have heard this a lot and it scared me enough not to try the Niacin and to white knuckle it through the reaction which I did.

arewenearlythereyet said:
I guess it's the combination with the high methylcobalbamin that causes the reaction?
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After discussing w/my doctor today he does not feel I should even try the toothpick dose of M-Folate again and to try regular Folic Acid instead. I do believe it is the combination of the two like you said b/c I tolerate the Methyl B-12 (1000 mcg) with no problems and even took it today. I have stopped the M-Folate and ordered regular Folic Acid. We are hoping this will avoid the reaction. Truthfully I don't want to do this at all but my homocysteine blood level was extremely high combined with B-12 & Folate extremely low so I know it is necessary to bring the blood levels closer to normal.

arewenearlythereyet said:
Good luck with the micro doses. Hopefully you can get your b12 and folate levels up.
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Thanks and I really appreciate all of your feedback (everyone in the thread)!

Tina030 said:
I hope it's not rude to say, but I'm so glad I'm not the only one having so much trouble with folate.
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Tina, I am sorry you are having so much trouble w/the folate, too, and it was not rude at all what you said! You are definitely not the only one and this seems to be a common problem for us. Best wishes that you figure out the answer for you.
 
N

niki

Messages
16
Just wanted to add I'm having the same issues- been a year of trying to absorb b12 (any form)/folinic but I went 6 months without barely sleeping and every night I was having a heart attack. I aged so much and am more burnt out for it. My ND thought I was just over sensitive... until many months past and I was having panic attacks daily from exhaustion and deprived neurotransmitters. If anyone figures it out - please share. I recently learned b2 def may play a big role so I'm taking that as of today and seeing how things go. My heart is already pounding just from the b2...
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
I am tolerating the Methyl B12 with no problems now but have stopped the Folate per my doctor. I ordered a different kind of Folic Acid but it has not arrived yet. Once it does and I try it, I will report back here. No idea how or if I will tolerate this and only doing it b/c my blood tests were so off.
 
N

niki

Messages
16
Thanks! It may be the folate then ...as they are always together in my treatment protocols. Thanks! I welcome any updates as it's a mystery to all why I react this way. I have some theories but that's all.
Best of lucj with the new folic acid (folinic).
 
dannybex

dannybex

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caledonia

caledonia

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dannybex

dannybex

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caledonia

caledonia

Senior Member
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Where the land is hilly and they eat hot chili
dannybex said:
I was wondering if there was something independent of Walsh? I think I've seen the video, but can't remember if he offers an explanation for why Deplin works, not to mention much lower doses, as an anti-depressant.

But when you say 'yes' -- is that a yes for 'different forms of folate'?
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Yes, for there is a reference. No, for different forms of folate making any difference.

The other reference I could find was Pfeiffer's "salad bowl depression". Walsh is a protege of Pfeiffer.

http://www.orthomolecular.org/library/jom/1999/articles/1999-v14n01-p028.shtml
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
@caledonia What are your thoughts re: someone who cannot tolerate Methyl-Folate (but blood tests are dangerously low for folic acid/folate) taking regular Folic Acid instead? I know it is not ideal or recommended by most on this board but would it be better than nothing to bring up the blood test to normal values?
 
caledonia

caledonia

Senior Member
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Gingergrrl said:
@caledonia What are your thoughts re: someone who cannot tolerate Methyl-Folate (but blood tests are dangerously low for folic acid/folate) taking regular Folic Acid instead? I know it is not ideal or recommended by most on this board but would it be better than nothing to bring up the blood test to normal values?
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I would say, for long term supplementation, only if you don't have MTHFR and other options (such as getting it from diet) aren't helping. For a short term experiment, I don't think it would hurt. Any unmetabolized folic acid would be out of your system in a few months.

You may want to go through some debugging and figure out why you don't tolerate methylfolate - what is your reaction to it? Are you getting the same reaction from folic acid? From folate in food?

You may also want to see if you're taking any medications that deplete folate or B vitamins in general (such as methotrexate, birth control, or antidepressants). If that's the case, consider discontinuing or switching to something else.

If you're looking to pump the brakes on overmethylation or mood swings, you may be able to tolerate it by taking some niacin along with it, and keep the folate doses very low (under 50mcg).

It could also be that there is some underlying issue like mercury toxicity, and you wouldn't tolerate folic acid either. For example, if I get more than a few mcgs, I feel good at first, but then crash with PEM type symptoms the next day, whether it's methylfolate, folic acid or food sources. I'm hoping mercury chelation will fix this in the long run. On Cutler mercury chelation message boards, it's common for people not to tolerate B vitamin supplements.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
caledonia said:
I would say, for long term supplementation, only if you don't have MTHFR and other options (such as getting it from diet) aren't helping. For a short term experiment, I don't think it would hurt. Any unmetabolized folic acid would be out of your system in a few months.
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Thank you so much @caledonia for all of this great info and you helped me immensely in 2014 when I had the severe over-methylation reaction (and not sure if you even remember this)! I was new to the board at that time and didn't have a clue what I was doing.

I am compound heterozygous for MTHFR (on all tests plus on 23andMe) so I know that actual Methyl-Folate is the better option but I just do not tolerate it. I have been taking 1000 mg of Methyl B-12 daily for several weeks now (without Folate) and tolerate it without any problems. So I either do not tolerate Folate or do not tolerate the two in combination (but the B-12 alone is fine).

When you said any un-metabolized Folic Acid would be out of my system in a few months, is this a good thing or a bad thing? Sorry for my confusion!

caledonia said:
You may want to go through some debugging and figure out why you don't tolerate methylfolate - what is your reaction to it? Are you getting the same reaction from folic acid? From folate in food?
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My reaction is complete insomnia (which is normally not an issue for me), tachycardia (I do have POTS but this was regardless of orthostatic change), and worst part is severe agitation. In 2014 it was so extreme it was probably true akathisia (I could still walk at that time) and I knocked over a small book case and was breaking things. This time it was nothing so extreme but I felt very agitated and uncomfortable. I had taken a MUCH higher dose in 2014 and did not make that mistake this time.

I have no issues w/folic acid that has been added to food (like certain cereals, etc).

caledonia said:
You may also want to see if you're taking any medications that deplete folate or B vitamins in general (such as methotrexate, birth control, or antidepressants). If that's the case, consider discontinuing or switching to something else.
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I have never taken methotrexate or AD's but I took BCP's when I was much younger. But the last time I took the BCP was literally about 10 years ago in my mid 30's so I wouldn't think it would be relevant now?

caledonia said:
If you're looking to pump the brakes on overmethylation or mood swings, you may be able to tolerate it by taking some niacin along with it, and keep the folate doses very low (under 50mcg).
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Do you recommend a certain type or brand of niacin? In 2014 I had printed out your entire methylation guide (prior to losing everything we owned to mold) and I no longer have it.

caledonia said:
It could also be that there is some underlying issue like mercury toxicity, and you wouldn't tolerate folic acid either. For example, if I get more than a few mcgs, I feel good at first, but then crash with PEM type symptoms the next day, whether it's methylfolate, folic acid or food sources. I'm hoping mercury chelation will fix this in the long run. On Cutler mercury chelation message boards, it's common for people not to tolerate B vitamin supplements.
Click to expand...

I truly do not believe that I have a mercury issue and I have never had an amalgam filling in my entire life. It's one of the few triggers that I do not have.

I was going to start the folic acid today at 400 mcg but after reading your post, I cut the tablet into quarters and started with 100 mcg. I am really hoping I can tolerate it. My doctor wants to re-test my blood levels of B-12, Folate, and homocysteine after I have been taking both products for four weeks but I just started the folic acid today so it will be a while (if I can even tolerate it)! He told me NOT to try the Folate again even at a toothpick dose b/c too risky. I actually think I might end up tolerating Rituximab better than the B-12 & Folate combo! (half joking and half not LOL)

Thank you again @caledonia!
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Am back (a few hours later... :D) after having a weird allergic reaction that can only be due to the Folic Acid or one of the fillers in it b/c I did nothing else different. Can someone be allergic to Folic Acid itself? I have not had an allergic reaction in about 9-10 months since starting IVIG. I took a Zyrtec and it seems to be turning it around but do not plan to take another folic acid!

I was not allergic to the Methyl-Folate (Pure Encapsulations brand) and wondering if better to go back to that one with toothpick dose? I would truly not even be doing this if my blood test for Folate was not so damn low. The normal range was 5.4 and mine was 2.5! Also my homocysteine was 19.6 and the top of the range was 10.4. My B-12 was also abnormally low.

It is so hard to find supplements without dyes & fillers (although the methylation reaction to M-Folate was not an allergic reaction). I am doing great with the M-B12 alone (1000 mcg per day) and will just stick with this unless my doctor advises me otherwise. Maybe I am a weird freak who just cannot tolerate Folate or Folic Acid (unless I try to get it compounded).

Am not having any reactions to food (which was my nemesis prior to IVIG) so it has to be to the Folic Acid or one of the fillers.
 
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