Anyone tried folic acid for overmethylation?

[Vanessa_M]

I would not consider it a scientific paper, because not enough information is given for it to be replicated or used by other researchers or clinicians. It really is just an advertisement for Walsh's clinic.
.

He doesn't have a clinic just a research institute, he is not treating or consulting with any patients directly. He trains physicians in his methods, and is certified to do so by the American Medical Association. I don't think anyone could do his protocols without working through a practitioner and getting the proper testing done. These powerpoints are definitely geared towards physicians who may be interested in doing his training, but maybe patients as well (so I imagine they would be simplified).

I am the kind of person that believes that clinical experience does count, not just the studies - and I trust the practitioners that I've consulted with, who have reported that they seen the benefits of this approach even in cases where all other mainstream interventions completely failed. I know there are other researchers out there who are studying the benefits of nutrients and mental health (Dr. Julia Rucklidge for ex.) I cannot argue with anyone here on quality of the studies it is not my area, but it seems like there are a lot of criticisms of his work here.

I have had to branch out into trying things like this, because many mainstream medical interventions (especially pyschoactive medications) have done an incredible amount of harm. I'm interested in things like functional medicine, diet, nutrients, and some alternative therapies because there just seem to be less of chance this will cause more harm. And I try these things under close supervision (not as experiments on my own).

I don't think anyone should be messing around with this kind of stuff unless they have an experienced practitioner to work with.

 

[Lolinda]

I suspect methylation is popular here because people with ME/CFS have nothing else to turn to and clutch at straws. Medicines that help nobody have been popular for centuries - like homeopathy

Homeopathy DOES help people. I think it is one of the most ingenious ways of harnessing the placebo effect.
It is side-effect free good (placebo-)medicine . It is cheaper to produce than your B12 injections
(- Ok, this comment was just for fun, I love bashing the prevailing diminuative view of placebo and would like to see serious research on comparing methods for evoking strong placebo effects)

However, with the methylation, I tend to think the popularity on PR is due to bona fide treatment effects. I can offer only my own "N=1 study" which was: At the very bottom, when nothing worked any more, the last straw I could grab was Rich van Konynenburgs methylation protocol. The effect was incredible: it switched me in 1 day from somebody barely able to vaguely do some thinking for half an hour per day to fully mentally present (albeit still fatigued in a bodily sense). My arguments against placebo and against imagining treatment effects:

• the change was overwhelmingly strong and sudden, not in the usual ballpark of placebo effects
• at the same time, there were strong bodily changes that I have never seen before and that cannot be imagined in any way: my bile started flowing so much that I had stool with large intensely green and with red bloody patches (I never knew one can have green-red stool, looks funny )
• (- I wont argue that on the back of my PhD certificate it is written in golden letters that I am certainly and absolutely free from any susceptibility to placebo )

Interestingly, neither folate nor of B12 produced any effect separately. The two together on the same day produced the effect, just as advised in the protocol.

Now, I think we share the argument that treatment success does not at all prove any theories. Also, the study by Rich van Konynenburg is not exactly on the niveau of the Lancet (I have attached the paper)

But there is one aspect of all this methylation theory about which I woüld like to ask you if it has merit or where exactly the nonsense is in it:
The core of it is that there is a methylation cycle. In this, methylfolate is needed to methylate B12 and methylated B12 is needed to methylate folate. Now, it seems plausible that such a system has a builtin failure potential: if it runs out of both methylated substances, it is difficult to restart it. Just like hens and eggs: if you run out of both, it will be difficult to restart the hen-egg system.
Now, this is what methylation proponents call the "partial methylation cycle block". Partial because the claim is that not all methylation everywhere gets blocked.
- where is the flaw in this, if any?

Thanks a lot in advance! I think clearificarion of this core point could help a lot in this discussion, because statements such as "it has no basis" just force people to either believe you or believe the "methylators".

To make it very clear, all the above has to do with your comment against methylation as a treatment (= straw to grab in desperation) and not with any concept of overmethylation.

 

[Valentijn]

Ok, this comment was just for fun, I love bashing the prevailing diminuative view of placebo and would like to see serious research on comparing methods for evoking strong placebo effects

The placebo effect has been researched. It can improve subjective self-reports of symptoms, but has no impact on objective measurements regarding the disease being studied. This has been specifically studied with asthma. People say they feel better, but their ability to breath has not improved.

I would classify the placebo effect as useless and potentially very harmful.

 

[loakley001]

Hey everyone! I by no means have any scientific or medical background.

I am a patient of DR Montoya.
I just got a letter from his PA that I have this MTHFR gene mutation. And she wants me to take Methylated B12 (methylcobalamin) and Methyl-Folate.

My question is....
If this isn't a real thing and is based on pseudo science, why would one of the leading CFS/ME researchers be wasting time on it?

I just found out about this today and know very little about it. I am just curious.

Thanks

 

[alicec]

If this isn't a real thing and is based on pseudo science

What people in the thread are questioning is the concept of over methylation, not the existence of MTHFR gene variants.

The gene variants certainly exist and some have an effect. Your doctor has identified at least one (presumably C677T) which slows the enzyme and is suggesting supplements which might be helpful.

 

[loakley001]

Ah ok. Thanks for clarifying. They said I have homozygous for A1298C mutation. Do you have any recommended reputable sites for helping me understand what this means?

 

[Lolinda]

What people in the thread are questioning is the concept of over methylation, not the existence of MTHFR gene variants.

Exactly. However, I am under the impression that @Jonathan Edwards also bashes all the popularity of methylation in general as he writes
"I suspect methylation is popular here because people with ME/CFS have nothing else to turn to and clutch at straws. Medicines that help nobody have been popular for centuries - like homeopathy".
This is what made me wonder - and as I respect his opinions a lot, it made me interested to know how come?

 

[Valentijn]

They said I have homozygous for A1298C mutation.

That's one pretty mild. From what I recall, being homozygous reduces enzyme function to about 70% of optimum. But since those MTHFR mutations are so common, 70% is quite average. At most, making sure you eat enough veggies or take a multi-vitamin with a normal amount of folate in it would be a good idea, especially during pregnancy.

It wouldn't indicate any need for B12, as far as I am aware. But many people find B12 to helpful anyhow (a mega dose of injected hydroxyB12 keeps my chronic pain away, for example). Though people often have trouble with methylB12 due to potassium or other issues, so hydroxoB12 can be a good alternative if methylB12 doesn't feel so nice.