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Extreme reaction to methylfolate

Messages
15,786
@Gingergrrl - A diet with a decent amount of veggies corrects for MTHFR mutations as well as supplementation does. If you're able to eat vegetables, that might help sufficiently.

It's also possible that your low folate levels and elevated homocysteine are due to low B12, rather than MTHFR mutations. Hence the folate levels might come up due to your B12 supplementation.
 

Gingergrrl

Senior Member
Messages
16,171
@Valentijn Are there certain veggies that you would recommend? My MCAS doctor does not want me to eat red tomato, spinach, and a few others (even though I think it's very possible that I can now and it's almost two years since I was near death from allergic reactions) but I am following his advice religiously.

I did not know that someone could bring up their Folate level (and bring down homocysteine level) just by bringing up their B-12 level, that is very interesting and helpful!

Is it possible to be allergic to Folate or Folic Acid itself or would it have to be one of the fillers? Am still debating trying a toothpick dose of my first M-Folate (Pure Encapsulations brand) vs. stopping all attempts at Folate and just taking the B-12. I emailed my doctor to see what he thinks and haven't heard back yet.
 

Gingergrrl

Senior Member
Messages
16,171
Thank you and I eat tons of foods on that list like romaine lettuce, broccoli, asparagus, cauliflower, citrus fruits, garbanzo beans (chick peas), nuts, celery, carrots, corn, etc. So it's weird my folate was so low on blood test.
 
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15,786
Thank you and I eat tons of foods on that list like romaine lettuce, broccoli, asparagus, cauliflower, citrus fruits, garbanzo beans (chick peas), nuts, celery, carrots, corn, etc. So it's weird my folate was so low on blood test.
Has it been tested since you started supplementing B12?
 

Gingergrrl

Senior Member
Messages
16,171
Has it been tested since you started supplementing B12?

Not yet. My doctor discovered the low B-12, Folate, high homocysteine, and other weird things while we were doing some other important tests that we needed to deal with first (in long journey to try to get a treatment approved w/insurance).

But he felt the B-12 & Folate were crucial to address so he wants to repeat the blood work after I have been on B-12 & Folate (or Folic Acid) for 4 wks. The problem is that I have not found a Folate I can tolerate yet!

The Methyl-Folate gave me extreme overmethylation reaction and the Folic Acid I had a minor allergic reaction to one of the fillers. He told me last night NOT to take the one w/fillers and to re-try the other one (which was 400 mcg) at toothpick dose. I have empty pill capsules so will divide one pill into 1/8's or smaller and try over the weekend.

I have something the next two nights where I can't risk an over methylation reaction but don't care if it happens on weekend!
 

vortex

Senior Member
Messages
162
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

(A few years earlier I was diagnosed and treated for Lyme).

IL4R)

I also have heard that people with lyme have issues with methylation startup, I think rich van k mentioned something like that. You said you were treated, but didnt really elaborate. Most lyme is very difficult to treat and years and years of antibiotics still dont cure it. Are you sure you are completely clear of all lyme?

Dr Nathan Q&A

Q: Would the Methylation Protocol be of any benefit for individuals with Lyme disease? Would the vitamin B-12 and folic acid be good for it? My girlfriend has had Lyme disease for the past 7 years. She was diagnosed 5 years ago and has been on antibiotics for the past 4 years as of June 2011. Do you have any suggestions or directions regarding the continued use of antibiotics for the treatment of chronic Lyme disease? Any help would be much appreciated. She has been through hell and is better but not cured of the Lyme.

A: We treat a large number of patients with Lyme disease, and we have found that most of them (as with patients chronically ill with virtually any condition) do not methylate properly. Many of them do respond to a methylation protocol, but again, I must warn you that most of our Lyme patients wrestle with problems of toxicity and are at high risk of reacting to the protocol, initially. So I would go VERY slowly and carefully, work with someone who understands this.
http://www.prohealth.com/library/showArticle.cfm?libid=16338
 

vortex

Senior Member
Messages
162
If lyme is definitely not the problem, then have you looked at richvank trouble shooting

Treatment Course
After this treatment is begun, you can expect the patient to feel worse initially, and I think it would be proper and wise to make the patient aware of this before the treatment is begun. It is necessary to determine whether this feeling is occurring because the treatment is working and the patient’s body is beginning to detox and kill viruses, or whether it is occurring because the patient does in fact have upregulation polymorphisms in their CBS (cystathionine beta synthase) enzyme, in which case you will have to move on to the more complicated complete treatment regimen. Which of these is the case can be determined by taking spot urine samples for a urine toxic metals test and a urine amino acids test from Doctor’s Data Laboratories. These can be ordered through Dr. Yasko (at http://www.testing4health.com) if you would like to receive her interpretation of the results, or they can be ordered directly from Doctor’s Data Laboratories (http://www.doctorsdata.com).

If the toxic metals are elevated on the urine toxic metals test, this will indicate that the patient has begun to detox, which is desirable. If taurine and ammonia are elevated on the urine amino acids test, this will suggest that the patient does have CBS upregulation polymorphisms, in which case you will have to stop this treatment and move to the more complicated approach described below. It would be best to do this treatment for a week or two before doing the urine tests, so that meaningful results can be obtained on these tests, unless the patient cannot tolerate it. If the latter is the case, then you will have to go on to the more complicated treatment approach described below.

to trouble shoot scroll down to "treatment issues"
http://phoenixrising.me/treating-cf...r-the-pathogenesis-of-cfs-the-simple-approach
 
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... or whether it is occurring because the patient does in fact have upregulation polymorphisms in their CBS (cystathionine beta synthase) enzyme ....
Unfortunately this is based on misinformation originating from Yasko. There are no problematic CBS upregulations.
 

vortex

Senior Member
Messages
162
CBS upregulations werent my issue, but I thought I would share that in case it applies.
 

vortex

Senior Member
Messages
162
I will share my personal experience and what did apply for me and how I got around startup problems.

I had an extreme reaction initially also. It took me several attempts and failures of restarting methylation. After alot of reading, I concluded that I was just up against too much trying to startup methylation. Since methylation increases glutathione, your body has to address all of the functions glutathione was supposed to take care of all of this time, sometimes it is just an overwhelming load to take on all at once, they say just go slow and they will all resolve
over time, but clearly this isnt working for some people like @Tina030

I grew up in an area where there were frequent power failures, when they tried to restore
the power, it would come on for a few seconds but then fail again. They would repeatedly try to restart it, but the load was too much. Not many people are aware that starting an electrical device like a motor requires much more power to startup than to run. So since everyones air conditioner uses a motor, it was trying to restart everyones motor at once and it was just
too much. So everyone would get up and run to their thermostat and turn off their a/c and
then they power company would re-attempt and then the load was light enough that the power could come back on. I see our bodies may be experiencing something similar.

Since most of the methylation startup is caused by starting up glutathione, I figured out how to lessen the load on glutathione. So if you study the functions of glutathione and then emulate them with other supplements then you should be able to work through some of the backlog and then re-attempt methylation protocol with a smaller load. I did this and eventually it worked.

The functions of glutathione are many, so it could be any or all of these. One of them is glutathione acts as a chelator. So you could have a buildup of heavy metals in your system
and therefore when glutathione starts, it starts liberating metals and sometimes they dont get flushed out, just stirred up. Sometimes they get sent out through the urine which is fine, but they also exit the other excretory system. the problem is that it sends all those heavy metals down the gi tract. Sometimes candida grabs them and flares that up, sometimes it flares other bowel conditions like ibs, sometimes it gets de-conjugated and re-absorbed. I think this is why people get this stir up phenomenon and have issues with the heavy metals leaving. So I took edta orally for lead and chlorella for mercury. I initially tried andy cutler protocol but that didnt work, it is designed to remove things through the kidneys not the gut. edta and chlorella chelate stuff out of the gut. I tried both, this works better. I know yasko uses low dose oral edta too.

Second thing glutathione does is inhibit viruses, so you may be loaded with viruses and when you start turning glutathione back on, you get all kinds of herxes. So my solution was to take anti-virals. You may need to take lysine for a while or even valtrex or something until viral loads come back down.
Glutathione also does general detox stuff, so I did bentonite and charcoal and liver flushes.
Also the chlorella is a great de-toxer too.
So periodically I tried to re-start the methylation protocol, and eventually I went from not being able to tolerate 100mcg to being able to quickly scale to 5mg methylfolate with no startup reaction other than some low potassium which I can tell the difference if it is herx or low potassium.
Once I was able to get through bad reactions on startup, I felt great. But I wasnt able to completely stop the other supportive things and then just go solo on methylation supplements only. I tried, but after a few months I started hitting a wall and started to regress. So I went back and started taking chelation stuff like edta and chlorella and that fixed that. I guess there was another wave of heavy metals that came out once glutathione started to come back up. So the lesson was just because I was able to startup easily, didnt mean I was completely out of the woods and able to go solo with just methylation supplements. I still needed to support heavy metal detox and antivirals. The data seems to show it takes about 9-12 months for glutathione to reach normal levels on the methylation protocol so I am not sure what the future holds in terms of being able to go totally solo. My latest labs indicate I am at the bottom end of the range for reduced glutathione 3.8 where the range is 3.8-5.5 So I might have to keep supporting glutathione functions until I get up to high 4s or 5s.
Overall I feel better than I ever have and while this has been really tricky and problematic I am gladd I stuck with it and eventually figured it out. Hopefully this helps others that were stuck and just abandoned the methylation protocol all together and are suffering needlessly.
 

grapes

Senior Member
Messages
362
This string makes me curious. For 3 1/2 weeks, I've been having a pounding and fast heartrate off and on all day. It's especially noticeable and bad at bedtime. I am having to control it with taurine 1000 mg three times a day...but it's a struggle.

I assumed it was due to a bad reaction to the antibiotic augmentin I had to take a month ago....but I now wonder if it has to do with the rising doses of folate. I started to raise folate after being on 400 mcg when I was having a constant headache after improving my glutathione levels. Freddd stated my issues may be due to needing more folate. Sure enough, I raised it, and away the headache went. If the headache came back, I'd raise again, and it would go away again. I finally settled at 3200 mcg.

Am I over-methylating??
 
Messages
1,478
This string makes me curious. For 3 1/2 weeks, I've been having a pounding and fast heartrate off and on all day. It's especially noticeable and bad at bedtime. I am having to control it with taurine 1000 mg three times a day...but it's a struggle.

I assumed it was due to a bad reaction to the antibiotic augmentin I had to take a month ago....but I now wonder if it has to do with the rising doses of folate. I started to raise folate after being on 400 mcg when I was having a constant headache after improving my glutathione levels. Freddd stated my issues may be due to needing more folate. Sure enough, I raised it, and away the headache went. If the headache came back, I'd raise again, and it would go away again. I finally settled at 3200 mcg.

Am I over-methylating??
Are you ok with potassium? One of my symptoms when I was doing this was heart palpitations. These went away when I upped my potassium dose.
 

grapes

Senior Member
Messages
362
Are you ok with potassium? One of my symptoms when I was doing this was heart palpitations. These went away when I upped my potassium dose.

Yes, I'm okay with potassium. In fact, I started higher amounts of potassium via V8 juice on the 5th day of raising my folate in early April. i.e. I was getting SO tired, then started 4 cups of V8 juice and bingo, the fatigue went away by the second day. But there was never any pounding heartrate in April.

Three weeks later, after getting an upper respiratory infection and while taking that antibiotic, here comes the pounding heartrate...except that it didn't go away even after I stopped that nasty antibiotic on the 5th day.

And here it is three weeks later, and I'm STILL having that pounding heartrate and palps. I do still consume the V8 juice, but less than in April i.e approx 1 - 1 1/2 cups instead of 4. And I take less folate--1600 mg--half of what I was on in April and early May. So it dawned on me--what if this isn't from that antibiotic but the folate??

I'll drink some more potassium and see what happens. If I'm still having this heart issue, I'll try staying off folate for a good week and see.
 
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1,478
Yes, I'm okay with potassium. In fact, I started higher amounts of potassium via V8 juice on the 5th day of raising my folate in early April. i.e. I was getting SO tired, then started 4 cups of V8 juice and bingo, the fatigue went away by the second day. But there was never any pounding heartrate in April.

Three weeks later, after getting an upper respiratory infection and while taking that antibiotic, here comes the pounding heartrate...except that it didn't go away even after I stopped that nasty antibiotic on the 5th day.

And here it is three weeks later, and I'm STILL having that pounding heartrate and palps. I do still consume the V8 juice, but less than in April i.e approx 1 - 1 1/2 cups instead of 4. And I take less folate--1600 mg--half of what I was on in April and early May. So it dawned on me--what if this isn't from that antibiotic but the folate??

I'll drink some more potassium and see what happens. If I'm still having this heart issue, I'll try staying off folate for a good week and see.
Good luck, I ended up with about 1200mcg (3x400) of Methylfolate and take potassium chloride tablets 3x 200mg. My heart palpitations just disappeared once everything settled down. I get them occasionally now when I have an infection, so perhaps this was a combination of things?
 

grapes

Senior Member
Messages
362
Good luck, I ended up with about 1200mcg (3x400) of Methylfolate and take potassium chloride tablets 3x 200mg. My heart palpitations just disappeared once everything settled down. I get them occasionally now when I have an infection, so perhaps this was a combination of things?

Good question. I have no idea. I went ahead and took a 50 mg slow release Niacin tab, and drank two more cups of low sodium V8, which is about 800+ of potassium on top of the one cup I drank this morning at 400+. It seems like things have calmed down a bit...but I'd have to give myself more time to see. ALL these three weeks I assumed it was a reaction to the antibiotic, since the antibiotic did cause a pounding heartrate too...but it really dawned on me this morning that this COULD be the folate.
 

Oberon

Senior Member
Messages
214
For this with good kidneys potassium supplementation and increases should be fine but if your adrenals are weak you may also need some sodium too. It's more likely low potassium causing the palpitations but I would try tasting some salt and see if your body craves it at all. If you find it extremely tasty then try adding in a 1/8 to 1/4 teaspoon to some water and drink it throughout the day along with the potassium.
 

grapes

Senior Member
Messages
362
Well....this is interesting. As stated above, I took Niacin two days ago, took it again that night, and took it again yesterday morning. And voila, no more pounding heartrate. I may have been over-methylating. I have done a post about this on my string about my journey with raising folate to improve my methylation---something which seemed to start going haywire last Fall when I was seeing my iron go up, and my B12 do the same. http://forums.phoenixrising.me/inde...-hydroxy-b12-starting-methyl-b12.50562/page-3
 
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5
Tina,

You mention in your sig that you are homozygous for your TCN2 gene? I assume you mean homozygous GG? If so, I carry the same mutation, and also cannot tolerate methylfolate.

Recent research has shown that those with TCN2 776C→G polymorphism are prone to peripheral neuropathies and nerve damage when exposed to greater than 800mcg of folate per day. (See: https://www.ncbi.nlm.nih.gov/pubmed/27733392)

People with this polymorphism are also more likely to have "significantly lower" concentrations of holotranscobalamin (basically the cell-ready B12-complex formed in the body). (See: https://www.ncbi.nlm.nih.gov/pubmed/28814397).

Folate deficiency and B12 deficiency have also been observed to occur more frequently in this group (See: https://www.ncbi.nlm.nih.gov/pubmed/27545030). Perhaps Freddd is right that the negative reactions really are indications of deficiency?

I wonder often if further research will show other folate-related intolerances and/or issues with this genetic particularity, or perhaps even when this polymorphism occurs in conjunction with others.

Would love to know if there is a higher predominance of negative MF-reactions in those with this mutation.

I've also had serious negative reactions to methylfolate, with two ER visits last year due to a 7-day trial of high MF intake (15mg). Nine months later, I am still experiencing symptoms from that misguided trial. MF is powerful, powerful stuff.
 
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5
I'm really grateful for everyone taking the effect to respond! And I'm really sorry I didn't reply sooner...
A few days after my last message, my husband told me he wanted a divorce and he left the same day.
So that sucked up all my energy for a while.

In June I tried taking as much folate in food as I could. I assumed that would be the best way to increase my folate intake. But I was wrong...
I didn't expect any negative reactions and it took a while before I realized, but I got the same reaction as to methylfolate. Extreme exhaustion, again.
That's when I decided I had nothing to lose and started Fred's protocol and the paradoxal theory.
The first weeks were the worst, with many new symptoms. Headaches, stomach problems, pain in my upper arms, insomnia and irritability/anger (like PMS x 1000, I think my husband left me just in time ;)).

After a few weeks I took 10 methylfolate tablets of 1000 mcg out of frustration (my dose at that time was 8000 mcg a day). To my surprise I felt better after that. Three hours later I took another 10000 mcg and that improved my symptoms even more.
So I assumed I needed a really high dose and started taking 50000 mcg a day, but had to cut back a bit because of severe headaches.
It has been 4 months now, but feeling great turned out to be a one-time thing and I have no idea why. I take every supplement on the protocol. Tried potassium for a while, but felt worse and it made me dizzy. A month ago I did a test and my potassium levels were fine.

I've probably tried every dose of folate so far, but nothing seems to work. I still get irritated/aggressive sometimes (overmethylation?) but that also happens when I take just 6000 mcg a day. If overmethylation is a problem, is it better to take less, of keep going on a high dose + niacin?
I was already feeling miserable when I started the protocol, that probably made it harder to find a 'perfect' dose.
For me the biggest problem is not being able to think clearly. Concentration is worse than it's ever been. It's so hard to process information.

When I started the protocol I've read Caledonia's Roadblocks, but I don't think it has a solution for me.
For years I've been in treatment with prof.dr. De Meirleir (Brussels) and the last 3 years with a (orthomolecular) doctor specialized in Lyme.
They both tested and treated everything they could (which was a LOT!).
But I could ask my doctor to read Caledonia's document to see if there's anything we missed.

Is there anyone who can advise me what to do? I really considered giving up, but I don't want to have suffered for 4 months for nothing. Could it take more than 4 months to get any relief/improvement? I don't want to be impatient, but I don't want to be foolish either ;)