Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Hi, Place, i stopped everything just now except vitamins a,c,d and the minerals.
I've not giving up on it completely since it's the only thing that had some effect on me. I'm just considering how to proceed with it next time. I might try switching to the inactive form of b12 in case the methylation cycle was being overdriven.
Hi, Paul.
I think it's very possible that your methylation cycle was being overdriven. I've seen this in several others now, based on lab tests, when they were taking sizeable dosages of methylfolate together with so-called "active" forms of B12. This combination bypasses the ability of the cells to control the rate of the methionine synthase reaction. It goes too high, using up too much homocysteine, and then there is not enough homocysteine left to enter the transsulfuration pathway to support the synthesis of glutathione. The glutathione depletion worsens, and the oxidative stress increases. One major effect of this is to worsen the mitochondrial dysfunction, lowering the production of ATP. Since ATP is what is needed to power the muscles, they get weak. So this approach does improve methylation, but it does so at the expense of glutathione. What is needed is a more balanced approach, in my opinion. This is one reason I suggest using hydroxocobalamin, at least at first, instead of methylcobalamin. That will preserve the supply of homocysteine to support glutathione synthesis. This does not work for everyone, and if it doesn't, I suggest switching to methylcobalamin, but limiting the dosage to about 2 milligrams per day, and limiting the methylfolate dosage to a few hundred micrograms. Starting at low dosages and working up as tolerated is a good idea, in my opinion.
Best regards,
Rich
@paul80
Glad I found this thread because I'm in same exact situation as you were. I tired adding potassium, increasing methylfolate and adding biotin, alongside with a bunch of other cofactors which I'm already taking but nothing seems to help. Could you give us an update and tell us if you found what's been missing for you?