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How do you break a folate trap?

Busson

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I suspect I am experiencing a folate trap.

(a) I've been taking a 3mg methylfolate for a year and felt very ill throughout. Occasionally I would also take folic acid in my multivitamin. I usually got a good but short-lived response after taking folate.

(b) Recently I stopped taking all folate supplements and felt very much better after a week although far from healed.

If I do still have trapped folate then how do I break the trap?

I increased my B12 by using frequent injections, which should help convey methyl groups away from the folate cycle.

I've seen Freddd's recommendation to break a folate trap by taking huge amounts of methyl folate, however I don't feel comfortable with attempting that.

Are there other ways? Will trapped folate disspate in time (what period?) if I don't take more methyl folate or folic acid?
 
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junkcrap50

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I've seen Freddd's recommendation to break a folate trap by taking huge amounts of methyl folate, however I don't feel comfortable with attempting that.
That's how I got out of the trap. I took HUGE amounts of folate. Bordering toxic levels of methylfolate (if that's even possible). Note: I was taking it intranasally and orally, which is ~4x-5x as potent (absorbed) as orally because much, much more is absorbed. See my post here: https://forums.phoenixrising.me/thr...iciency-or-just-screwed-up.43918/#post-715165

More here: https://forums.phoenixrising.me/thr...e-dose-for-freddds-protocol.60812/post-989732

I think that by taking more B12, you are doing the opposite of what you need. You are requiring more and more folate with every additional B12. I would stop the B12 and just concentrate on folate to get yourself out of the "hole".

In the end, I found the Freddd Protocol not helpful and actually harmful to me (permanently so far). I do not believe in the "traps" and "holes" etc. What feels like traps and holes is actually inflammation. Pushing the methylation cycle is pushing against a broken system, which leads to an output of high inflammation. More methylation - more inflammation (b/c our systems are broken). My doctor and naturopath both would describe it every time I wanted to do methylation support. And it wasn't until I saw a video of Nancy Klimas saying the exact same thing, "methylation can lead to too much inflammation." (I'll try to find the video).
 

ljimbo423

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(a) I've been taking a 3mg methylfolate for a year and felt very ill throughout. Occasionally I would also take folic acid in my multivitamin. I usually got a good but short-lived response after taking folate.
I struggled with methylation for a long time. I finally found a post here that said they increased their dose of methylfolate every 2-3 days, which minimized any side effects. So I tried going up, 100-200 mcgs every 2-3 days and had no more issues with feeling miserable from the dosage increase.

After a few weeks I was taking 6.4 milligrams a day and felt a huge increase in energy. Like some kind of switch got turned on. Unfortunately that energy slowly faded. Even though I still take 3-4 mg a day of both methylfolate and methylcobalamin, it doesn't do a lot to overcome symptoms.

My feeling is, the methylation issues in CFS are secondary to other issues, like high oxidative stress, immune activation, etc.
 

Eastman

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@Busson

A folate trap has to be treated by B12, but how do you know you have folate trap?

Have you seen these articles by Dr Ben Lynch?

Methylfolate Side Effects

Preventing Methylfolate Side Effects

Freddd's recommendation to take huge amounts of methylfolate is to treat paradoxical folate deficiency, a different problem whereby a small increase in folate intake increases processes that consume folate in excess of the increased intake, resulting in a deficiency, hence the term "paradoxical".

Paradoxical folate deficiency is an unproven concept as far as I am aware. It is simply Freddd's theory of what he experienced.
 
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Hi, as said by @Eastman , you should be sure it's really a folate trap.. if you increased your b12 intake, and especially if you have had frequent b12 injections, it's not sure you're dealing with a folate trap. In any case, if it were a folate trap, in would dissipate in maximum 4 days, but not taking folate for four days if you took huge amounts of b12, probably won't make you feel good.. that's why I do not recommend excessive B12 doses.. it puts your body to become dependent on excessive doses of other cofactors, with an almost unpredictable pharmacokinetics, and consequent slavery of (random) megadoses of what is going to miss, and consequent further imbalance..
 
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Busson

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Freddd's recommendation to take huge amounts of methylfolate is to treat paradoxical folate deficiency, a different problem whereby a small increase in folate intake increases processes that consume folate in excess of the increased intake, resulting in a deficiency, hence the term "paradoxical".
@Eastman

I have tried to carefully decode the terms Fredd uses and thought Freddd's "paradoxical folate deficiency" was his name for a folate trap.

As I understand it, trapping occurs when a person takes more folate than can be processed by B12/methionine synthase activity, with the result that folate accumulates and then (according to the hypothesis) the sheer quantity of it somehow causes it to be dumped out of the cell where it was needed. The folate ends up lying trapped in a non-usable location/state.

The result is lots of folate but paradoxically it's non-functional. The person's symptoms are those of folate deficiency.

Does Freddd mean something different to that by "paradoxical folate deficiency"? I have never read about incremental increases in dose.
 

Busson

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@junkcrap50 @ljimbo423

You both found increased methylfolate worked but how does that happen? Is there any theory, here or elsewhere, which explains why huge doses of methylfolate break the trap?

I am very wary of taking more of what made me ill. Some old posts by Rick suggest taking folinic acid but it seems worryingly similar to folic acid and methylfolate.
 

ljimbo423

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@junkcrap50 @ljimbo423

You both found increased methylfolate worked but how does that happen? Is there any theory, here or elsewhere, which explains why huge doses of methylfolate break the trap?
I don't know why the high dose methyfolate "turned on" my methylation cycle like it did. I think some of the enzymes in the cycle are dysfunctional, from high levels of oxidative stress.

They are probably only partially impaired and the high doses of MF compensates for the enzyme impairment.

My guess, from the research I've done, would be that it overrides the enzymes that are not working right in the methylation cycle.

I am very wary of taking more of what made me ill. Some old posts by Rick suggest taking folinic acid but it seems worryingly similar to folic acid and methylfolate.
I would say to do what you feel is most likely to work for you and I understand that's often not a very easy decision to make.
 

junkcrap50

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You both found increased methylfolate worked but how does that happen? Is there any theory, here or elsewhere, which explains why huge doses of methylfolate break the trap?
I don't know. I don't believe Fredd's stuff is necessarily applicable for ME/CFS parients (just him who was in severe B12 defiecnecy) or even true to begin with. I think his protocol is dangerous.

The best explanation I can give you is that these methylation supplements (Fredd's quadtro) PUSH the methylation cycle and the chemical reaction pathways by having excess reagents. If you don't have cofactors or other parts to support the methylatoin cycle, having excess reagents or "pushers" of the cycle can cause a build up. This will drive inflammation very high by having broken methylation/biochemical pathways. Adding methylfolate will relieve this chemical reaction/pathway pressure build up by excess "PUSHING."

The methylfolate alone won't hurt. It will just "use" up the excess / build up of B12 and other cofactors. If you take huge methylfolate with B12 and other cofactors, then you will just build upon the problem. Once you "run" the methylation cycle to relieve any buildup or blockages or relieve the pathway pressure -- by taking large doses of methylfolate -- you can stop or taper down the methylfolate.

Note, that because I took 53mg of methlyfolate SUBLINGUALLY and INTRANASALLY. This equates to taking ~250+mg orally. (A HUGE NUMBER!) I don't remember the exact absorption rates, but oral ingestion absorption of methylation supplements is something like 20%. Intranasal and sublingual is something like 85%-90+% absorbed. So orally 53.4mg = 10.68mg absorbed. 53.4mg sublingual = 48.06mg absorbed. ~5x absorption.

After ~2 weeks of mega doses of mfolate, I was able to stop all methylfolate and methylation supplements.
 
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Eastman

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Does Freddd mean something different to that by "paradoxical folate deficiency"? I have never read about incremental increases in dose.
You may want to read this post by Freddd, and specifically, this statement:

Let’s say a person starts with a 200mcg dose of Metafolin with sufficient MeCbl-AdoCbl to start healing. In about three days frequently occur low potassium and/or donut hole folate insufficiency as a set of symptoms often called “detox”. The folate insufficiency symptoms can be relieved by taking enough Metafolin. If a person titrates at 200mcg per day they likely will not resolve the symptoms. That is because the additional folate generates additional need and plenty of time to start even more healing.
Also, here is a post by another member giving her take on paradoxical folate deficiency.

Finally, a post by Freddd suggesting that alleviating a folate trap with B12 can induce a folate deficiency.

This also expands the definition of Paradoxical Folate Deficiency to include an induced methylfolate deficiency by mb12 and low dose methylfolate.
 

Busson

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@Eastman Thank you for looking up those links for me. I appreciate it. Even after boiling down Freddd's posts and those by others, there doesn't seem much tangible science I can get my teeth into to use in my own situation. After all his theory, many of his new ideas seem to remain largely conjectures.

As I see it, Freddd was largely confirming existing B12 and folate science while, importantly, bringing a patient's perspective to it. But I don't think there is anything radically new in what he says, although his definitions can be hard to get to grips with.

I am currently seeking some simple fact-based theory I can put into practise and can watch with existing theory about methylation, trapping and fucntional deficiency.

My purpose is to haul myself out of a exceedingly bad methyl trap and consequent folate dumping leading to functional folate deficiency, which I have been in and out of for over a year. I am only able to write this because I stopped all folate 2 weeks ago and it has made a huge difference. I want to complete the healing and also not to ever get into that bad state again.
 
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junkcrap50

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In the end, I found the Freddd Protocol not helpful and actually harmful to me (permanently so far). I do not believe in the "traps" and "holes" etc. What feels like traps and holes is actually inflammation. Pushing the methylation cycle is pushing against a broken system, which leads to an output of high inflammation. More methylation - more inflammation (b/c our systems are broken). My doctor and naturopath both would describe it every time I wanted to do methylation support. And it wasn't until I saw a video of Nancy Klimas saying the exact same thing, "methylation can lead to too much inflammation." (I'll try to find the video).
I found the video! Been looking for a while. But I don't know when/where in the video she says it. She doesn't expand on it and is very short. But it's an answer to an audience question (I think). Timestamp: 35:41-36:31
https://sharkmedia.nova.edu/media/MECFS+Broward+Support+Group+08+21+2018/1_um15n6ib
[Klimas previously talking about B12 and 23andme] Now I will say this about energy. When you drive the energy system with B12 and folate, you better have taken care of the antioxidant side. Because it's messed up. Don't turn on energy, without fixing the free radical problem. Okay? Because part of the reason why you shut down and you got less mitochondria and less energy is because you've got so much of a mess of oxidative stress out there. That if you turn more on, you just start killing cells. So you want to really clean up with antioxidants, umm, before you start using things like B12 and folate to drive on more energy. Okay? And if you're using Ritalin or Adderall or any of that, holy shit. You better be on a really solid antioxidant regimen. Because you will get sick. It makes you feel, it feels like you just did too much physically, when you overdrive the energy pathways in your cells, without... [Someone asks a question about CoQ10.]
 
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I found the video! Been looking for a while. But I don't know when/where in the video she says it. She doesn't expand on it and is very short. But it's an answer to an audience question (I think). Timestamp: 35:41-36:31
https://sharkmedia.nova.edu/media/MECFS+Broward+Support+Group+08+21+2018/1_um15n6ib
Very interesting but meaning of antioxidants is so wide and suppose with many of us what is the cause of free radical damage.

I totally agree with her, as this occurred with me starting meth b12, took months to recovery after stopping. I only did 5000mcg for the first week and then dropped to 100 mcg week after. That 2 week course somewhat ruined my life for at least 2-3 months.

I wonder if there is some testing for free radical damage and antioxidants body levels.
 

HABS93

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Okay I'm in a confused state learning this stuff. My integrative doctor I see once a month so theres lots of stuff I need to get of my chest.
My B12 is well above the reference normal. All my blood test always come back normal. Two years ago I became sick with fatigue , brain fog. , Vertigo , vision Abnormalities ..etc. Found sarcoidosis and assumed whatever caused that caused my symptom's? My integrative doctor has put my on Ortho multi men , active folate , D3&K2 (low vit D in Canada) , vit C , NAC(Pre cursor to glutathione) . Thinks toxins caused this but how do you know if you have a B12 problem or something related ? Can you have normal b12 blood test but have a problem ? This is extremely confusing...
 
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Okay I'm in a confused state learning this stuff. My integrative doctor I see once a month so theres lots of stuff I need to get of my chest.
My B12 is well above the reference normal. All my blood test always come back normal. Two years ago I became sick with fatigue , brain fog. , Vertigo , vision Abnormalities ..etc. Found sarcoidosis and assumed whatever caused that caused my symptom's? My integrative doctor has put my on Ortho multi men , active folate , D3&K2 (low vit D in Canada) , vit C , NAC(Pre cursor to glutathione) . Thinks toxins caused this but how do you know if you have a B12 problem or something related ? Can you have normal b12 blood test but have a problem ? This is extremely confusing...
Did your stool movements change after getting sick? Have you done a complete microbiome of your gut and tested for parasites using PCR test?

Hows your anxiety levels, panic attacks?

Seems the only accurate way to get B12 is bloods plus OAT test (urine).

I would advise agaist just throwing things at your body to see if they will help without proper testing.
 

Pyrrhus

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Very interesting but meaning of antioxidants is so wide
I believe Nancy Klimas was referring to the antioxidant glutathione. This is the body's antioxidant that is "in charge" of protecting B12 from oxidative stress:
https://pubmed.ncbi.nlm.nih.gov/15606130/

Can you have normal b12 blood test but have a problem ?
Yes, for a number of reasons. To give just one example, a study found normal blood levels of B12 in autism and schizophrenia. But when they looked in the brain, there was a B12 deficiency:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0146797#abstract0

(Oh, and here's a related post: https://forums.phoenixrising.me/threads/homocysteine-testing.81231/#post-2295551 )

Hope this helps.
 

Eastman

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... how do you know if you have a B12 problem or something related ? Can you have normal b12 blood test but have a problem ?
Yes, you can have a normal B12 blood test but still have a problem. From this site:
The most common test is serum B12 - The reference range can be set as low as <110 - 900 ng/l in some parts of the UK. This is a problem as the test often misses desperately deficient people.
The serum B12 test, records all B12 in the blood, active and inactive (B12 Analogues), it does not record what is happening at cellular level.
The body cannot access inactive B12 and this can represent as much as 80% of the level showing in serum.
There are documented problems with the accuracy of this test, however many health professionals are not aware of this. Click here to read the NEQAS B12 alert.
Other tests that can confirm a B12 deficiency are:

- methylmalonic acid
- homocysteine
- holotranscobalamin

For details, see here or here.
 

Wishful

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I would advise agaist just throwing things at your body to see if they will help without proper testing.
Since we don't know how ME works, we don't know what theories are or aren't valid, so we don't know what theories to apply for interpreting test results. I don't think any test results would have led to a prescription for cumin or T2 for me, but those were the things that had the most significant results. Thus, I'm a supporter of the 'throw things at your body and see if they will help' method. :thumbsup:
 

HABS93

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Did your stool movements change after getting sick? Have you done a complete microbiome of your gut and tested for parasites using PCR test?

Hows your anxiety levels, panic attacks?

Seems the only accurate way to get B12 is bloods plus OAT test (urine).

I would advise agaist just throwing things at your body to see if they will help without proper testing.
They aren't random. I have a deficiency in vit D so I take d3&k2. NAC is because I worked around some dangerous toxins. At the same time you have to try something and take risks.
I have not tested for parasites though. I'll look into that. Is this a common thing ? I haven't noticed any symptoms from my stool that would indicate parasite.

Anxiety was bad when I first got sick but I got use to being sick it calmed down alot.