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    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.

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Already taking b12 and folate

Messages
57
I recently learned about Freddd's Protocol and thought I should try it. I havr had the best success in the past with diet and supplements/detox. I also recently learned I have a MTHR mutation (can't remember which one). But I was looking at one of the supplements I take which I knew had some B-vitamins (among other things). It is called "Vessel Care" by Metagenics. It contains both the active b12 and the L-5 methylfolate...in high doses. I never noticed any benefit from it. Is it possible that it is because I did not start at the beginning of the protocol?
 

SwanRonson

Senior Member
Messages
300
Location
Alabama
Do you have symptoms that would require methylation treatment. If not, I really wouldn't recommend taking active b vitamins unless there was a good reason.
 
Messages
57
Can you provide a list of symptoms that would indicate it? I was given the supplement by my alt doc, so he thought I needed it for some reason or another. I can't remember back to the appointment to say his reason, which I am sure he mentioned. He is very thorough.
 

PeterPositive

Senior Member
Messages
1,426
Probably your doc gave you the "Vessel Care" to lower your homocysteine. The formulation seems specifically designed for that.

How long have you been taking it?

The dosage of B vitamins in it are moderately high.
 
Messages
57
Since approximately August. Can't remeber the exact date. I guess Freddd's Proticol wouldn't do anything for me then? It seems like I am out of options. I was hoping that would be a help to me.
 

PeterPositive

Senior Member
Messages
1,426
Freddd's protocol uses four main ingredients:
methyl-folate, methyl-cobalamin, adenosyl-cobalamin, l-carnitine fumarate. Plus a number of co-factors.

I would recommend to search his posts via the search function, you will find a lot of material to read about it.

cheers
 

aturtles

Senior Member
Messages
129
Location
Seattle, WA
Freddd's protocol uses four main ingredients:
methyl-folate, methyl-cobalamin, adenosyl-cobalamin, l-carnitine fumarate. Plus a number of co-factors.

I would recommend to search his posts via the search function, you will find a lot of material to read about it.

cheers

And potassium. If you are doing methylation work, you need to supplement with potassium. Being low on potassium can be life-threatening. Be sure you have it handy and use it. Learn the signals of low-potassium in your body.
 
Messages
57
Thank you. I have read about the potassium. I have searched around and I cannot seem to find a step by step protocol to follow. There are lots of discussions about various aspects of the protocol. I found one page/thread with what seemed at first like the protocol, but to me, seemed like more of a list of things used in it but no distinct way to use them. I think it started off saying something like, "Do x week 1," and then just went into information about the things used and no more step by step basics. I know individuals will have to vary it and tailor it because each person is different, but it would be nice to get a basic outline of what to take (and how much), for how long, when to add something new, etc. and then notes at the end about some possible common variances. Then discussions of more detail about specific ingredients and combinations, doseages, experiences, additions or substitions would make sense to me. But all the threads I read don't have a foundational context so it is hard to understand them. There are also a lot of abbreviations used and I don't know what they are. Is there a page that has a key to all of that? Like when someone says MTHFR, how would I figue out what they are taking about (I know what that one is, though...but it's just an example).
 

PeterPositive

Senior Member
Messages
1,426
And potassium. If you are doing methylation work, you need to supplement with potassium. Being low on potassium can be life-threatening. Be sure you have it handy and use it. Learn the signals of low-potassium in your body.
That's right.
Although the dealock-quartet is just those four components. Maybe, as you suggest, the deadlock-quartet should become a deadlock-quintet :)
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
Freddd's protocol uses four main ingredients:
methyl-folate, methyl-cobalamin, adenosyl-cobalamin, l-carnitine fumarate. Plus a number of co-factors.

I would recommend to search his posts via the search function, you will find a lot of material to read about it.

cheers

Thanks for the ingredients - have you done Fredd's protocol......
This seems similar to the late Rich Van Konynenburg's Simplified Protocol Methalytion August 2012
His 3 videos he did in Sweden in 2007 are on this site. He recommended that the Methyl folate be used with the
HydroxoCobalamin B12 and not the Methyl-cobalamin if used over 6/9 month period. He did not like the 2 methyls combined - sorry so overwhelmed I can't find the reaction some get from 2 methyls. He also added Lecithin.
Thanks everyone on here for making this site the Most informed ME/CFS people I have ever met :thumbsup:
 

PeterPositive

Senior Member
Messages
1,426
No, I haven't followed Freddd's protocol strictly.
I started with the protocol suggested by my doctor, and subsequently I have adjusted it by following advices here from Freddd and other posters.

I also spent an inordinate amount of time learning about MTHFR and other related mutations :( Unfortunately there is a lot of information to parse.

Whether you're being helped by a doctor or you're trying to figure this out by yourself you will need an extra dose of patience to experiment and take it one step at a time.

If you can handle methyl-folate without problems chances are methyl-B12 will work too.

Cheers
 
Messages
57
If you can handle methyl-folate without problems chances are methyl-B12 will work too.

Cheers

Since I take a supplement with both I think I would be alright. But increasing the dose may change that. I have a MTHFR mutation, but my dr only gave me the Vessel Care. I ask need high dose Vit C and D (which makes me need the other vitamins that aid absorption). All these vitamins/supplements are making my head spin!
 
Messages
57
Thanks for the ingredients - have you done Fredd's protocol......
This seems similar to the late Rich Van Konynenburg's Simplified Protocol Methalytion August 2012
His 3 videos he did in Sweden in 2007 are on this site. He recommended that the Methyl folate be used with the
HydroxoCobalamin B12 and not the Methyl-cobalamin if used over 6/9 month period. He did not like the 2 methyls combined - sorry so overwhelmed I can't find the reaction some get from 2 methyls. He also added Lecithin.
Thanks everyone on here for making this site the Most informed ME/CFS people I have ever met :thumbsup:

Do you have a link to the videos?
 

aturtles

Senior Member
Messages
129
Location
Seattle, WA
have you done Fredd's protocol......

Yes, some of us are doing Freddd's protocol pretty enthusiastically. I have been doing it since August 2014 and my health is significantly improved. I went in at the deep end, and while every day is an experiment, every day is better than it ever was before I started.

I sleep deeply. I have energy. I have focus. I feel good.

I am not selling anything. :)

In my experience (YMMV; see my famous disclaimer) methylation work -- Freddd's protocol in particular -- works. Brilliantly. Astonishingly. Profoundly.

Today I have my life back. Tomorrow, who knows? But today, and for many, many days now, I have my life back.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
Do you have a link to the videos?
To danceintherain - I got to his video thru this site. I went on "Forums" and put in Rich Van Konynenburg, hit Enter.
I got a forum on him - read a few, one guy had the URL for his Video.
BTW, I went to call Rich Van Konynenburg on Sunday. I was crying when I read he passed away in September 2012.
I had just read his "Revised Simplified Protocol for Methylation" on August 12, 2012. I called Amy Yasko's online place - they have all 5 supplements for Rich's protocol (folinic acid, FolaPro, etc).

Rich had revised how to take supplements - he lists which one to start with, and end with. With his clinical trial he ran in 2007 he saw die off in first 2 weeks. I suppose that is why in 8/2012 he revised how to take supplements.
 
Messages
57
Thank you. I appreciate that very much. Btw, do you know what happened to him? How did he die? I'm thankful for all the work he did. Very sad to hear he is gone.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
Thank you. I appreciate that very much. Btw, do you know what happened to him? How did he die? I'm thankful for all the work he did. Very sad to hear he is gone.
He passed away in his sleep from a heart attack according to his wife Diana - in September 2012. He worked at Natn'l Laboratories of Univ/California 30 years, then spent 15 years devoted to ME/CFS. His work was for the drs. treating ME/CFS. He did not run the clinical trials MDs did that work. Dr. Rich Van had a gentle humor, and a fierce dedication to finding something to cure us. He never gave up - I wish I had met him. I wish I met Dr. Jay A. Goldstein. I talked to him by phone, as did my internist to try to treat me.