research comparing methyl-hydroxy in patients with ME?

[Sundancer]

well, title says it I think.

I wonder whether there has been research comparing the use of B12 as methylcobalamine or hydroxy in patients with ME.
I know I have once seen a small study that made note of observed differences whereby methyl seemed to do the better job. ( interestingly, the use of benzo's seemed to reduce the effectivity, which smacks of methylation-problems)

But that was just asking patients what they used and what reactions they had.But cannot find that study anymore plus I do wonder if there is more?

Reason is i found a specialist who wants me to change to hydroxyshots, I do like the idea, ( costs, insurance will pay for it when he orders it, yay!) and I will try the hydroxy nosedrops to experience what happens to my body. ( if it works and if I have side-effects like from the methyl lozenges)

so I hope someone here knows more then I do

 

[Sundancer]

well, seeing that I got no reaction until now my hope is low.
but still hope that someone will come up with something.

If not, it is something that ought to be researched, seeing how much of us use B12 with varying results.

 

[ljimbo423]

well, seeing that I got no reaction until now my hope is low.
but still hope that someone will come up with something.

If not, it is something that ought to be researched, seeing how much of us use B12 with varying results.

I agree, I think it should be researched. Like so many supplements, from what I've read here and at the Prohealth forums, results vary greatly from person to person.

I don't notice any difference with either form of B-12 but I take the methylcobalamin form every day because I also take methylfolate and they should be taken together.



I hope the hydroxy nose drops work for you!

 

[Sundancer]

I agree, I think it should be researched. Like so many supplements, from what I've read here and at the Prohealth forums, results vary greatly from person to person.

I don't notice any difference with either form of B-12 but I take the methylcobalamin form every day because I also take methylfolate and they should be taken together.



I hope the hydroxy nose drops work for you!

thanks I hope so too, I'll see whether I can find the small explorative study that I've read and post it here. I react very well on the methyl and tend to think "never change a winning team", on the other hand, if hydroxy would work as well, it would be better for my meagre financial assets. ( and my GP has to start believing that there ...really is something physically wrong with me...goddammit!)

there also was a study about methylation-problems in ME patients recently... that also points to the need of helping out in the methylation-department.

anyway, I'm happy I've found something that helps, that's more then a lot of people have.
As in your case, I'm sorry that in your case methyl does not seem to really help.
every sup I try is sort of, will it help, sometimes it does, sometimes it makes one more ill, sometimes nothing seems to happen.

frigging illness.

 

[Sundancer]

I think it was this one, now too tired to read but at least have found it

Abstract
Background
Patients with myalgic encephalomyelitis (ME, also called chronic fatigue syndrome) may respond most favorably to frequent vitamin B12 injections, in vital combination with oral folic acid. However, there is no established algorithm for individualized optimal dosages, and rate of improvement may differ considerably between responders.

Objective
To evaluate clinical data from patients with ME, with or without fibromyalgia, who had been on B12 injections at least once a week for six months and up to several years.

Methods
38 patients were included in a cross-sectional survey. Based on a validated observer’s rating scale, they were divided into Good (n = 15) and Mild (n = 23) responders, and the two groups were compared from various clinical aspects.

Results
Good responders had used significantly more frequent injections (p<0.03) and higher doses of B12 (p<0.03) for a longer time (p<0.0005), higher daily amounts of oral folic acid (p<0.003) in good relation with the individual MTHFR genotype, more often thyroid hormones (p<0.02), and no strong analgesics at all, while 70% of Mild responders (p<0.0005) used analgesics such as opioids, duloxetine or pregabalin on a daily basis. In addition to ME, the higher number of patients with fibromyalgia among Mild responders was bordering on significance (p<0.09). Good responders rated themselves as “very much” or “much” improved, while Mild responders rated “much” or “minimally” improved.

Conclusions
Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia. It’s important to be alert on co-existing thyroid dysfunction, and we suspect a risk of counteracting interference between B12/folic acid and certain opioid analgesics and other drugs that have to be demethylated as part of their metabolism. These issues should be considered when controlled trials for ME and fibromyalgia are to be designed.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124648

 

[ljimbo423]

there also was a study about methylation-problems in ME patients recently... that also points to the need of helping out in the methylation-department.

The reading and research I've done shows that many, if not most people with ME/CFS have impaired methylation. It makes sense to me given the many dysfunctions in ME/CFS and the high levels of oxidative stress found consistently.

High levels of oxidative stress alone, is enough to impair methylation and cause a need for much higher doses of B-12, methylfolate, etc.

As in your case, I'm sorry that in your case methyl does not seem to really help.

Although I didn't notice any effects from the methylcobalamin or hydroxycobalamin I took. When I added in methylfolate, I had a dramatic increase in energy when I reached 6.4 mg a day of it!

So improving methylation has definitely helped me and I continue to take 4 mg of methylcobalamin a day and 4.9 mg a day of methylfolate.

 

[Sundancer]

So improving methylation has definitely helped me and I continue to take 4 mg of methylcobalamin a day and 4.9 mg a day of methylfolate.

ah, that's good to hear.
in my case the effect of methyl became clear at 400mcg of folate...so, were all different. Still I'm slowly taking more methyl because I think there is neurological damage which I would very much like to reverse.

I've only been looking and reading since last winter...all the shit about the pacetrial etc. and all the knowledge that is found already, but not used.

If doctors had given me B12 and carnitine from the first day I would have been less sick. I've found out I've sibo...for many, many years, interndoctors have always told me there's nothing wrong with me, that I needed to se a psychatrist. duh...

sometimes I get angry about it again...

thanks for responding

 

[Moof]

I've only got my own experience, which is that it makes no difference. I injected hydroxocobalamin for the first four months; I then decided to try methylcobalamin and injected that for just short of five months; when I ran out again, I went back to hydroxocobalamin. I didn't notice anything at all, so I stuck to the latter – it's easier and cheaper to buy here.

However, I definitely do better on methylfolate. No, I've no idea why either!