Has anyone here given up on methylation?

[lift]

I'm guessing unless methylation has a near 100% success rate, there are people like me who have tried many times over the years, a variety of protocols but ultimately do not end up progressing. I still read here from time to time to see how others are going.

 

[minkeygirl]

I gave up. When I was on low enough doses where I didn't have bad side effects I got zero benefit that I could tell. I never had the brightening, clarity, nothing. But as i increased doses i started having horrible side effects from MB12 or metafolin.

It's a fine balancing act and I just don't understand it enough to be able to do it and keep things in line.

I may go back and take low doses of some stuff and maybe it will help in some way? I don' know.

 

[Sasha]

I gave up - tried three different protocols and each time became more and more debilitated (not a lack of potassium) and had to stop.

 

[Mary]

@lift - I did poorly on the supplements in Richvank's protocol - I kept trying it for some 3-1/2 years off and on, but felt sick each time I did. And then I came across Freddd's B12 protocol and it was a completely different experience - none of the sick feelings I got with Rich's protocol so I'm guessing there was something in the supplements Rich recommended that I could not tolerate.

My potassium did tank on Freddd's protocol but that was easily fixed. About a year ago I tried to increase my metafolin from 1600 mcg. a day (two 800 mcg. tablets in divided doses) to 3200 and experienced severe mercury detox symptoms. It was a little bizarre, I bought a cell phone I didn't need, basically was a space cadet. When I dropped it back down to 1600 mcg. the symptoms went away. Sometime I am going to try to increase my metafolin again, but more gradually. I don't think I have the detox problems I had a year ago.

I know this whole subject can be so complex and we all react so differently - I wish we had competent readily available practitioners who could help us out!

 

[Gingergrrl]

Tried it twice, horrible over-methylation reaction and my Dr had me stop it. I cannot tolerate the supplements at all.

 

[Hip]

I'm guessing unless methylation has a near 100% success rate, there are people like me who have tried many times over the years, a variety of protocols but ultimately do not end up progressing. I still read here from time to time to see how others are going.

The success rate of the methylation protocol in terms of delivering major benefits is only around 1 in 4 patients, so most people will not see major improvements.

This poll found only 25% of patients had major improvements.

Rich's own informal study on 30 ME/CFS patients (see page 43 of this document) found a similar percentage (27%) of patients getting major improvements after three months on the methylation protocol.

 

[Sasha]

One in four PWME getting major benefits from anything sounds great to me! But I think it's important to define 'major improvement' (which that poll didn't). For me, a 'major improvement' would be being able to sit in a chair for a couple of hours every day, but that wouldn't even move me up a point on the Bell (?) scale.

 

[Sushi]

I tolerate Rich's protocol well, and have for years. Initially it gave me a boost, but I have sort of gotten used to the boost now. It certainly hasn't cured me, but I regard it as a support.

Sushi

 

[PennyIA]

I've had a lot of good days - no PEM for weeks and months at a time.

But I'm still not where I can tolerate the supplements long enough to get there more regularly... I take a modified dosage and stop/start intentionally. It's keeping me working full time which I don't think I'd be here without it.

So, not giving up on it yet. But, having to stop/restart on a scheduled basis has kept me in better shape than without.

 

[Hip]

But I think it's important to define 'major improvement' (which that poll didn't).

Yes that's true, it should be better defined.

 

[JPV]

I've tried both of the popular protocols on this site, several times over the years, and didn't really benefit from them. I would usually crash hard after a couple of months. Maybe it was a potassium issue, I have no idea.

Freddd's protocol is so convoluted and scattered all over the forum that it's virtually impossible to follow anymore.

I seem to be having better luck on the PHD with specific probiotics and RS. I'm pretty sure that gut microbiota is a big issue with my condition.

 

[Rand56]

I never had the brightening, clarity, nothing

Ditto. I'm glad it helps other people though.

 

[Gondwanaland]

Taking MeB12 was a life-changing experience. I am trying to tame my uric acid issues and will try again.