• 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.

I've mostly recovered, but I'm not quite 100% yet. Is the methylation cycle the key?

Messages
19
Hi all,

I'll try to keep this brief; as many of you know, it's very easy to get carried away when describing your experiences so I'll try to get to the point.

I'm a 28 year-old male; I've had health problems since I was 15. First, it was digestive, then, fatigue. I crashed 8 years ago and have been battling since then. A flurry of effective treatments - cold showers, pantethene and adrenal glandular extract (the last being the most important by far) - have more or less given me a normal life. I am studying full-time in Japan, going out with friends, and for the most part doing what I want to. I've viewed this as primarily an adrenal problem for several years now, and have seen a few physicians for it, but mostly self-treated.

However, the hallmark symptom that separates most of us from healthy people - exercise intolerance - is still there. I can't lift weights. I can't do Jiu-Jitsu. These things were important to me, but they're off the table now. Anything that gets me sweaty, blood pumping and gasping for air, causes a mild to moderate crash. I've made tons of progress but I just don't have enough in the tank for that.

I accepted this for years as just part of my life now, but having stumbled across the methylation protocol, I'm feeling hopeful in a way I haven't for years. It just makes sense for me in a way that the literal thousands of other explanations out there haven't. In fact, I remember that I was taking what appear to be the two main supplements - methylcobalamin and folate - in this supplement for years. I stopped taking it right before I crashed 8 years ago. I recognized that at some point, and I might have tried reintroducing it, but I don't think I stuck with it. All my supplements since then have had cyanocobalamin and folic acid, as far as I'm aware. I never really gave any thought to the idea that they were substantially different.

But now I'm onboard. I've ordered the B12 infusion and it's on its way now. I think I should give this a shot, but I also feel like I should ask for someone else's input first. Does it sound like I'm on the right track here? Can I safely proceed by simply trying some of the B12 and seeing how I respond to it or should I do some testing first? I've gained a lot of ground, and I don't want to risk losing it. But at the same time, the thought of recapturing something resembling my old life excites me in ways I can't quite put into words.
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
Hi. I'm sure you know, there are different approaches to methylation. Many people here have found success with methylation protocols involving various doses and types of B12. Personally, after 2-3 years of experimenting with different forms and doses of B12 and methylation, I was never able to find one where the benefits outweighed the side effects, no matter how slowly I titrated. That may be due to my specific genetic make-up. BUT, I did have success with Dr. Yasko's "short route" methylation supplements, which don't involve B12. The key supplement in "short route" methylation is PS/PC/PE - a complex of phospholipids. The more I read about phospholipids, particularly Phosphatidyl Choline (PC), the more I'm convinced they can be important to some subsets of ME/CFS patients. Something to consider if you have trouble with B12...
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
B12 is a good place to start. There are 3 docs in my signature explaining aspects of Freddd's Protocol, which is not the only approach to B12. Also a Dummies guide to methylation. good luck.