Anyone tried folic acid for overmethylation?

[jimells]

Ben Lynch and Walsh are supposed to get together at some point and have a meeting of the minds - it would be great if they could come up with some sort of universal hypothesis that encompasses both protocols.

It might be even better if they come up with a way to test it. I tend to regard all these constantly shifting theories and protocols the same way I regard the constantly shifting advice on diet and exercise promoted by the media: Where's the evidence?

 

[caledonia]

It might be even better if they come up with a way to test it. I tend to regard all these constantly shifting theories and protocols the same way I regard the constantly shifting advice on diet and exercise promoted by the media: Where's the evidence?

Both of them have plenty of evidence via patients that they've treated (Walsh in particular has a 30 year track record), but I agree, some studies would be great.

 

[caledonia]

I forgot to add (according to Walsh) that something like 70% of people are normal methylators (not either over or under methylators) and that your tendency towards, over, under or normal methylation is fixed from birth and doesn't change.

So you can see this is quite different from taking excessive methyl supps and overdriving the methylation cycle.

 

[GhostGum]

Most of them, but that is not what I was talking about. I am very happy that B12 may help some people and as AB says we may not know why and it might have nothing to do with methylation. That is quite different from people recommending treatments based on proposed mechanisms that do not seem to make sense. What I am suggesting people should be cautious about are theories of 'methylation treatment' that seem half baked. Particularly if they seem to involve the opposite of what makes any sense! The treatment may be fine (although I would like to see some reliable evidence) but not the explanation. The problem is assuming that we do know mechanisms, when as you say we often do not, and making recommendations based on theory rather than evidence.

Well I do not disagree with any of that, and I have already said I have found some of the information around the subject quite contradictory, but I also got to the point where I realised it is also far too complex for me to keep track of, let alone research and fact check.

The doctor mentioned is simply my GP, and ironically I believe I have got her involved in this field, she is probably a little in over her head but at least she has and is making some attempt to understand my situation and the subject. At the end of the day it was my initiative and choice which has lead me to this treatment, I am just doing the best I can to juggle the supplements and doses.

You said earlier it would be easy to do a B12 study with ME/CFS patients, but clearly it is far from straight forward, when you see how different people respond to different B12 forms, doses and cofactor supplements; let alone how long the treatment can potentially take to gain substantial improvements, and the many complications facing different ME/CFS sufferers.

The real studies that need to take place are ones based on genetic profiling combined with medical histories. I actually have a psychiatric (psychosis) history pre ME/CFS, and even though I clearly fit CCC throughout my condition and psychological symptoms were very much secondary, my biological and neurological 'breakdown' and predominate symptoms obviously related to this past, genes and predisposition.

I am quite cynical so I find aspects of this subject quite infuriating because this form of treatment can obviously help many in society suffering 'mental illness', who end up on questionable drugs for years, and then maybe some within the ME/CFS spectrum, but like so many things it is put aside for patented medications, research neglected or simply ignored. Hopefully the field continues to progress though and the science becomes more complete.

 

[Bdeep86]

@caledonia Your clearly informed on the Mensah ways for overmenthylators. Do you know what other agents they used for this other than folates?

 

[caledonia]

@caledonia Your clearly informed on the Mensah ways for overmenthylators. Do you know what other agents they used for this other than folates?

From my notes on Walsh's video - supps for overmethylated schizophrenia - the purpose is to support acetylation with folate (especially methylfolate) and niacinamide. Other supps possible are DMAE, zinc, selenium, chromium, B6, B12, vit C, D and E.

 

[Peyt]

From my notes on Walsh's video - supps for overmethylated schizophrenia - the purpose is to support acetylation with folate (especially methylfolate) and niacinamide. Other supps possible are DMAE, zinc, selenium, chromium, B6, B12, vit C, D and E.

Hi caledonia,
i had Dr. Mensah's test done 3 years ago and was shown to be an overmethylator based on their tests (Low Histamine, low zinc, high copper)

I originally tried folic acid, and it was amazing. My mood improved alot and I became someone I had never been before. I was positive and happy and making friends (which is the opposite of my anti social personality) .. this lasted for 2 weeks until I started getting real bad headaches and I had to stop.

after that i read Ben Lynch's stuff saying folic acid is not the good kind and one should use methylfolate. So i tried methylfolate. Well methylfolate gave me headaches from the get go without the happy mood improvement that folic acid was giving me so I stopped it on the 2nd day....

I just watched this video https://www.youtube.com/watch?feature=player_detailpage&v=W14kkO61Ano from Dr. Walsh, and he does touch on folates(as a general category) but nothing specific... IMO, He needs to be more specific as to which type of folate should be used by which type of overmethylator based on what findings....

Do you or anyone else know of a source of information that clearly explains the difference between different folates in relation to over/under methylation?

 

[caledonia]

Hi caledonia,
i had Dr. Mensah's test done 3 years ago and was shown to be an overmethylator based on their tests (Low Histamine, low zinc, high copper)

I originally tried folic acid, and it was amazing. My mood improved alot and I became someone I had never been before. I was positive and happy and making friends (which is the opposite of my anti social personality) .. this lasted for 2 weeks until I started getting real bad headaches and I had to stop.

after that i read Ben Lynch's stuff saying folic acid is not the good kind and one should use methylfolate. So i tried methylfolate. Well methylfolate gave me headaches from the get go without the happy mood improvement that folic acid was giving me so I stopped it on the 2nd day....

I just watched this video https://www.youtube.com/watch?feature=player_detailpage&v=W14kkO61Ano from Dr. Walsh, and he does touch on folates(as a general category) but nothing specific... IMO, He needs to be more specific as to which type of folate should be used by which type of overmethylator based on what findings....

Do you or anyone else know of a source of information that clearly explains the difference between different folates in relation to over/under methylation?

Dr. Walsh is the only one as far as I know. The idea of over and under methylation is his.

I seem to remember him saying somewhere that for the purposes of mental health and his protocol, folic acid and methylfolate would cause the same issues.

My suggestion would be to work with Dr. Mensah on why you're getting headaches and why their protocol isn't working for you.

 

[Vanessa_M]

The terms overmethylation and undermethylation come from Carl Pfeiffer (now deceased), and have been carried on by William Walsh (and his main practitioner Albert Mensah). These apply to mental health only and to the area of the methylation cycle containing SAMe only.

Many people also use the terms undermethylator and overmethylator to mean a slow running cycle with blocks, or that they took too many methyl supps so the cycle is overdriven, or that methyl supps are too much for their COMT mutation or it's making CBS express so they're getting negative symptoms.

Therefore, everyone is confused because the treatment for Walsh/Mensah under and over methylation is the opposite of the more recent understanding of under and over methylation.

This was a great response. I think a lot of people in other threads are confusing overmethylation with this methyl overburden issue that may result from taking too many supplements. They don't realize that there are a number of people who are overmethylated to start with (if we go with Walsh's stats, 8% of the population)

It would be great if Walsh got together with some of these other practitioners like Dr. Lynch to hash out some of these issues. It seems like there are a few different key people advising about methylation, and they all seem to have their own take on it and are not necessarily in agreement with everything. Walsh's work, as you say, is specifically in the context of mental disorders, I have not heard him not making any claims to cure CFS - though I have spoken with one psychiatrist who uses his protocols in her practice and she says she has noticed that some of her CFS/Fibromyalgia patients are improving by normalizing high copper levels. Though that was interesting.

 

[Vanessa_M]

Is there such a thing as overmethylation?

Hi Jonathan, I think this is a question a lot of people have. There are a lot of different perspectives out there on overmethylation /undermethylation and I think there are practitioners (who have gained a certain level of popularity and presence on the internet) who are exclusively focused on undermethyation and/or the MTHFR mutation.

If you want to find out more about overmethylation, I recommend the following video - or pretty much any material by Dr. William Walsh or Dr. Albert Mensah (at Mensah Medical). He is the one who has done extensive research on human populations, and his work is mainly in the context of mental disorders (not so much CFS/ME).

 

[Vanessa_M]

I don't dismiss anything but I would like to have some coherent explanation of what 'methylation treatment' really means. The stuff I have been able to dig out on the forum does not make a lot of sense to me in biochemical terms and nobody currently contributing to the forum seems to be able to explain why it might. Vitamin B12 was the stock in trade placebo to give patients to make it seem something was being done when I was a student forty years ago. Since there do not seem to be any good trials of B12 in ME/CFS and it would be the easiest of things to do I wonder if current physicians are just continuing old practice.

On the other hand B12 deficiency is a well recognised reality and B12 is involved in methylation so there is a germ of sense there. Overmethylation sounds much less plausible and it seems back to front to treat it with any sort of B12 or folate related preparation.

I agree there are a lot of methylation threads on this forum that are incredibly confusing, and completely unclear where people are getting their information. Seems like a lot of people are referencing this guy Fredd as a source, or Dr. Lynch. I also think there a lot of people are just getting 23andMe testing done, they don't really understand what methylation is, and go down a rabbit hole of confusion trying to interpret their results and develop a protocol on their own, or through advice of other members. I believe the video I posted above plus Walsh's book 'Nutrient Power' provides a coherent explanation of what Methylation is. Dr. Mensah has a few good explanatory videos on his website (Mensah Medical).

Also this podcast could be helpful, which explains the wide ranging implications of methylation pathways.

http://functionalforum.com/methylation-part-2-sustainable-solutions/

 

[Jonathan Edwards]

Hi Jonathan, I think this is a question a lot of people have. There are a lot of different perspectives out there on overmethylation /undermethylation and I think there are practitioners (who have gained a certain level of popularity and presence on the internet) who are exclusively focused on undermethyation and/or the MTHFR mutation.

If you want to find out more about overmethylation, I recommend the following video - or pretty much any material by Dr. William Walsh or Dr. Albert Mensah (at Mensah Medical). He is the one who has done extensive research on human populations, and his work is mainly in the context of mental disorders (not so much CFS/ME).

I have no idea who these people are but this is not serious science. As far as I can see this is the same rubbish as all the rest. Methylation has absolutely nothing to do with ME/CFS as far as I can establish. I wonder why you are recommending this and worry that this is some sort of soft sell advertising. I am afraid this particular granny needs no advice on sucking eggs!!

 

[Vanessa_M]

I have no idea who these people are but this is not serious science. As far as I can see this is the same rubbish as all the rest. Methylation has absolutely nothing to do with ME/CFS as far as I can establish. I wonder why you are recommending this and worry that this is some sort of soft sell advertising. I am afraid this particular granny needs no advice on sucking eggs!!

How do you know it is not serious science, please explain. It is something I am investigating for my own reasons (I have a complex chronic illness - with a mental health component) and was sharing because you had asked the question. Walsh Research Institute is a non-profit, so as far as I can tell they aren't selling anything, but I could be wrong. I was merely responding to your request for people to share their sources of information/explanations about overmethylation. If you don't want people to try and answer your questions or you've already decided its all garbage, then why bother asking? Are people not allowed to share information pertaining to treatment approaches that interest them, without it being completely suspect?

I think you are right methyaltion may not be of any benefit for people with ME/CFS unless they also suffer from a mental illness - Walsh's stuff is mainly in the context of mental health, which is relevant to me and maybe some others here. It seems like the methylation threads are quite popular on this site, so I wonder why that is if it is really helping no one. Maybe someone should do a site-wide poll or something to document how many people actually got better vs. worse following a methylation protocol.

Can you point to any studies or publications which debunk methylation treatments for CFS?

 

[Jonathan Edwards]

How do you know it is not serious science, please explain. It is something I am investigating for my own reasons (I have a complex chronic illness - with a mental health component) and was sharing because you had asked the question. Walsh Research Institute is a non-profit, so as far as I can tell they aren't selling anything, but I could be wrong. I was merely responding to your request for people to share their sources of information/explanations about overmethylation. If you don't want people to try and answer your questions or you've already decided its all garbage, then why bother asking? Are people not allowed to share information pertaining to treatment approaches that interest them, without it being completely suspect?

I think you are right methyaltion may not be of any benefit for people with ME/CFS unless they also suffer from a mental illness - Walsh's stuff is mainly in the context of mental health, which is relevant to me and maybe some others here. It seems like the methylation threads are quite popular on this site, so I wonder why that is if it is really helping no one. Maybe someone should do a site-wide poll or something to document how many people actually got better vs. worse following a methylation protocol.

Can you point to any studies or publications which debunk methylation treatments for CFS?

I know it is not serious science because I am a biomedical scientist and what Dr Walsh says is pseudoscience. It just makes no sense in terms of real biochemistry. There is no more one can say than that. It is a bit like someone who has played a few games of chess at school explaining how to beat Gary Kasparov. It is just absurd. Of course Walsjhe is selling stuff. He is selling his 'research' to gullible people and making a nice living.
I realise that you were responding to my query now - although it was months old I think. But your tone of response suggested you were knowledgeable about the area and that you were providing me with the right viewpoint. I am a member of the Board of Directors here and one of my concerns is that it is very easy for members to think that people who talk as if with authority know what they are talking about. That applies to me too, but at least I have forty years of biomedical science experience.

I am very ready to listen to answers to my question that have a scientific basis. I am pretty sure 'methylation' is garbage but I have been proved wrong before and am ready to be proved wrong again. But I am asking for some science not sounds-like-science make-believe. You are welcome to share information but please do not sound as if you are doing it from a position of knowledge.

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. Web site polls do not help because you need properly blinded and controlled trials - which is why we spend so much time criticising the PACE study.

I do not need to point to any studies that debunk methylation treatments for ME/CFS because there are no coherent theories out there and no studies that show benefit. There is nothing to debunk. All we really have is the old observation that vitamin B12 seems to make people feel perkier. I suspect even that is a spin off from the placebo effect of injections in the 1940s. When I was a medical resident we often gave patients a B12 placebo when we had no idea what else to do - so that they felt they were getting some treatment. It was a deliberate 'white lie' con-trick on our part.

 

[Vanessa_M]

@Jonathan Edwards From my perspective all I was doing here was sharing a resource that I felt was relevant to questions asked about over methylation - NOT pretending to be any kind of authority. I've seen far worse offeses in methylation threads on this site, where members are directly giving other members medical advice and posting their own protocols. I presented this as source that I felt explained what overmethylation was.

Nowhere did I say that that this was a cure for ME / CFs, I re-read my comments and I was clear about contextualizing this in relation to mental health - and did this more than once.

Are you going to write to every person on this site doing the exact same thing as me (sharing info), condescend them, and say they dont know anything because they don't have the same background as you? Because that is how your 'tone' comes across. I am not the only person who mentioned Walsh in this thread.

I also had every reason to believe this source was legit and science-based because I've spoken with medical professionals who have reviewed his work too, use his protocols in their clinical practice and see good results. Walsh also presents his work in peer review contexts, like the APA conferences and publications, which is again why I thought it was legitimate.

 

[Vanessa_M]

@Jonathan Edwards Here is an article written by a psychiatrist who has seen impressive results in her clinical practice using his protocols. She mentions that Walsh has trained 500 physicians already and is certified by American Medical Association to provide this training. The majority that he trains are medical doctors, but a few have had PhD's in medical research. His back-story includes working with Carl Pfeiffer for 18 years, one of the worlds leading nutrition experts.
http://www.courtneysnydermd.com/blo...eries-the-future-of-nutrient-based-psychiatry

If he is a quack, that is out to deceive and prey on the gullible, that includes a heck of a lot of people with rigorous science background...

 

[Jonathan Edwards]

@Jonathan Edwards Here is an article written by a psychiatrist who has seen impressive results in her clinical practice using his protocols. She mentions that Walsh has trained 500 physicians already and is certified by American Medical Association to provide this training. The majority that he trains are medical doctors, but a few have had PhD's in medical research. His back-story includes working with Carl Pfeiffer for 18 years, one of the worlds leading nutrition experts.
http://www.courtneysnydermd.com/blo...eries-the-future-of-nutrient-based-psychiatry

If he is a quack, that is out to deceive and prey on the gullible, that includes a heck of a lot of people with rigorous science background...

That is the sad truth, Vanessa. Or maybe he just he believes he is doing good. Your article is just an advert for one therapist by another. Scientific medicine does not look like this. I am sorry to sound condescending but this really is garbage and most people I think see that. I do not turn my nose up at any one without my background. There are patient members on PR with no practical science experience but who read carefully and are better critics of the papers than I am.

All I can find on William Walsh on PubMed that refers to methylation is a study that mentions it in passing of behavioural disorders treated with natural therapies. It is embarrassingly bad. So much so that one has to assume that it does not bother Dr Walsh that any medical trainee reading it would presume he is a complete fool. Unfortunately, although I assume almost all medical graduates get trained in critical appraisal of science as juniors a substantial minority drift off into pseudoscience once they get into private practice.

What seems quite spooky about Dr Walsh is that the only papers I can see on PubMed by him that look remotely scientific are to do with copper. And copper metabolism is associated with the name of John Walshe - who I met years ago over Wilson's disease patients and who became famous for introducing penicillamine. Wilson's disease produces neuropsychiatric problems if severe.

 

[Hip]

It's possible that cobalamin and folate are helpful for reasons unrelated to methylation.

Increased concentrations of homocysteine in the cerebrospinal fluid in patients with fibromyalgia and chronic fatigue syndrome

One hypothesis I have is that the elevated brain homocysteine in ME/CFS may be causing a proliferation of activated microglia, which homocysteine is apt to do, thus ramping up brain inflammation, and worsening symptoms.

Vitamin B12, folate and vitamin B6 all help in reducing homocysteine, so may thereby decrease brain inflammation in ME/CFS patients, thus improving ME/CFS symptoms.

So this could be the reason B12 and folate help some ME/CFS patients. It would be interesting to do a poll on patients who have tried B12 and folate, and see if those who found these supplements helpful have high homocysteine levels.

My hypothesis suggests that ME/CFS patients with high homocysteine would tend to be the ones that benefit from taking B12 and folate.

So I might set up a poll for this; but I am not sure how many patients actually know their homocysteine levels.



Other supplements that reduce homocysteine include: vitamin B2, zinc and trimethylglycine, 1 N-acetyl-cysteine, 1 phytic acid (inositol hexaphosphate), 1 choline and betaine. 1

 

[Vanessa_M]

@Jonathan Edwards Ok - If you have reviewed a number of his publications and it is not up to your standards, then fair enough. I trust the practitioners I work with, and if they are getting good results with his protocols then I think it is worth giving it a shot. My naturopath did reverse behavioral disorders in several children in her practice from a Walsh Program, but I guess you would probably consider that just anecdote.

I took an interest in his work mainly because of his observations about copper - I don't think anyone is really talking about this, or testing for it and as you say, it certainly can affect mental health (as well as sleep, nervous system etc...) I'm pretty sure his interest in copper comes from the fact that he was working with Carl Pfeiffer all of those years, who was certainly looking at copper as culprit in some mental disorders. I do believe they were on to something with that. I personally have tested positive for high copper/low zinc on more than one test, but don't have Wilson's disease. It seems like there are others in the forum who have reported high copper levels, and a very close friend of mine had also tested positive and she does have CFS. So I am curious anyway, why this is seeming to be a thing in some people with chronic illnesses.

There were a ton of articles on PubMed, including one meta-analysis, linking high copper/low zinc in those with Rheumatoid arthritis. And this D-Pennecillamine is interesting because apparently used as like a second tier DMARD (but which often only had benefits over a shorter term period of time). Although I may not have the same ability as you to evaluate these types of studies, I still think this was interesting. I have been diagnosed with RA and the rheumatologists that I've seen cannot provide any explanation as to why many patients develop 'secondary issues' like mental illness, or fibromyalgia. I don't think following a Walsh protocol will cure me of autoimmune disease or anything, but it may alleviate some of the other difficult symptoms I've experienced that are not responsive to other medical interventions.

 

[Valentijn]

My naturopath did reverse behavioral disorders in several children in her practice from a Walsh Program, but I guess you would probably consider that just anecdote.

Yes, everyone would consider it anecdote. Because it is anecdote.

And based on looking at his "research", it really is a joke. Most of the links are power points, with a few abstracts, and just a couple published papers.

One of those papers mixes very young children and adults (age 3-55, median 11.5) to draw conclusions, and mixes quite a few diagnoses. Improvement is entirely based on self-report (been assaulting people lately?) and most of the paper reads like an advertisement aimed at patients.

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.

Maybe his methods help people, and maybe they don't. But the data he gives isn't sufficient to indicate that it helps. Going to his clinic or using his protocol would very much be an act of faith that his claims are true.