Boosting methylation has not helped me - here is my theory

[Katy131]

Long post, but hopefully my experience will help others:

I’m not a doctor but I have been working on my recovery from CFS/ME for 16 years with the help of Dr Myhill's Protocol and my functional medicine doctors, and on methylation itself for over two years now. I have come to the conclusion that boosting my methylation has not helped me. In fact, by adding another layer of symptoms which have to be interpreted and treated moment by moment, and which change daily, sometimes hourly, it has actually made my health and wellbeing a lot worse. I haven’t noticed any benefits at all. I’m having to take approx 1400 mg potassium a day just to try to stay on an even keel, and even minor changes in other supplements means days and disturbed nights spent adjusting to calm symptoms.

My theory is this. I think that PWME can be loosely divided into two groups – those who have an underactive immune system (who catch every virus out there) and those with an overactive immune system (eg who have allergies and sensitivities to chemicals, fumes, foods etc). For those with an underactive immune system, boosting methylation makes sense but perhaps not for people like me, who have a twitchy overactive immune system. Unfortunately, there seems to be no way back for me now.

As I said, I’m not a doctor, but I am a very experienced patient with some training in nutrition and anatomy and physiology, and I hope this will help others to not have to go through what I have over the last two years.

 

[pamojja]

I have come to the conclusion that boosting my methylation has not helped me. In fact, by adding another layer of symptoms which have to be interpreted and treated moment by moment, and which change daily, sometimes hourly, it has actually made my health and wellbeing a lot worse.

How do you ascertain, that this was not just a correlation?

I belong to a 3rd group. I take lots of methylating supplements, have allergies and an anaphylactic episode, no bad effects, but for me in the long run (9 years; and mild only) it lead to remission of PEMs.

How do I ascertain, that this was not just a correlation? Honestly, I have no way to entangle all the strategies (pacing..), comprehensive supplementation, or for example LDN or the only root-canal threaded tooth extracted.

 

[Katy131]

You're right, of course, it could be just a correlation, but for example I certainly didn't need all this potassium before I started on the methylation protocol - that only became clear when I started to get the alarming night time palpitations which I learned on this forum was lack of potassium. The need for potassium has meant having to balance my magnesium and sodium intake to go with it, too, and the symptoms I get from too little or too much of those also affect my general wellbeing and health. After a very long journey (which I can elaborate on if necessary) I am now only taking a methylated multi vit and still need 1400 mg potassium daily to balance the alarming and painful symptoms.

I'm very pleased to know that you have seen some improvement though. I just wish it had worked for me.

 

[Viala]

There are different types of methylation protocols and approaches, some of them or just one of them can be good for people with ME. If a simple methylation protocol actually worked, we would have loads of cured people on this forum, but we don't.

Then, even if you have a very good methylation protocol, you are still you and some things may not work for you that will work for others or for the majority. One thing that you supplement can make a protocol ineffective or even harmful. Methylation protocols should be tailored to each individual depending on their SNPs, diet and country they live in, the ability to detox and stage of a disease, and other factors.

Maybe at some point there will be one protocol that will work for most, but we're still not there.

 

[pamojja]

but for example I certainly didn't need all this potassium before I started on the methylation protocol - that only became clear when I started to get the alarming night time palpitations which I learned on this forum was lack of potassium. The need for potassium has meant having to balance my magnesium and sodium intake to go with it, too, and the symptoms I get from too little or too much of those also affect my general wellbeing and health.

My worst deficiency from comprehensive supplementation was a severe magnesium deficiency, only explainable by the increased metabolic need with high vitamin D intake, and a formerly subclinical deficiency, pushed to severe. Frequent severe painful muscle-cramps, not alleviated by 1.9 g/d elemental oral magnesium for average the last 16 years. Only additional 32 Mg-sulfate IVs did cease the cramps. While whole-blood magnesium still deficient. Therefore, I continue with such high Mg-intake.

Additionally, 6.6 g/d bicarbonate, 1.9 g/d sodium, 1.5 g/d potassium. All in average for 16 years. Now, I don't think this is a specific methylation issue only (correct me, if wrong), but just reflects the unawareness, how much nutritional needs increase with chronic diseases. Or increasing helpful nutrients without enough cofactors at the same time. For its repair mechanisms.

some things may not work for you that will work for others or for the majority.

As my long-time electrolytes intakes, probably harmful for others.

Never give up hope and persistence against this enemy. But at ease with a cup of coffee at the same time.

 

[Wishful]

It's also possible that methylation is not a general influence on ME. A methylation protocol might work for a few people, possibly from some mechanism far removed from the ME one. A single protocol might affect some genes in a way that reduces ME symptoms, and also some genes that increases ME symptoms. I doubt that ME is caused by a single methyl group reaction (ie. one specific gene in one type of cell), so a protocol that might affect thousands of genes is going to have highly individualistic responses.