Methylation

[jenbooks]

Thanks for the report, Rich. A two year followup is very interesting.

As a bystander I have benefitted from watching and waiting this entire time, concluding that the mainstays are active folate and hydroxy b12, most likely, and figuring that I will need very tiny doses.

For me it could only be a piece of the puzzle given chronic lyme. We need a better way to treat that. There seem to be small stepwise strides in understanding--as to why there is antibiotic resistance (biofilm communities which have been demonstrated in the lab) for instance. It would be nice to know why Luft's (Stonybrook scientist) virulent strain *is* virulent as opposed to mild nonprogressing strains.

But every puzzle piece is worth it.

 

[Dreambirdie]

Question for Rich

Hi Rich,

I appreciate your report and input about this.

I'm glad someone has a scientific explanation for what I already know. Yes, I AM having adverse heavy metal detox effects from the adB12!

I was not on the PH forum, so I'd like to know what your "simplified treatment approach is," and how it differs from Freddd's?

~Dreambirdie

 

[lebowski]

"I felt nearly suicidal with the reaction. Despite Fredds' advice that I should continue with scant regard for the problems I was having I have to say, I stopped the B12 and things have settled down now. I consider that no-one should be advising people who are extremely sick online to be taking high doses of anything just because it worked for them."


yes if u r about to kill urself for anything u swollow u shouldnt keep on taking it .. but dont take this one as a medical advice just like u shouldnt have freddds ideas ( so my only advice about this is u have to ask it to a dr if u shall kill ursevle or not ).. as far as i read he s just telling ppl here his expriences as u did with ur wonderfull vegetable exp. in ur last post .. and it s everyones own responsibity to make their desicions ..

of course some ppl will push their chances of recovery to the limit and hurt themselves but what now , shouldnt i read any other of his (or someone elses) very interesting ideas just because there r ppl in the world using internet and not capable of taking their own responsiblity of life ??

and i know it is really a very hardly defendable situation unless u strickly point out that this (or any treatment suggestions) should be tried onyl under medical supervision .. he made a mistake as thinking he was talking only to grown up ppl who accept life as a choice but not a push ..

and i wonder what can happen to me if someone who is very close to killing himself reads this post and feel a bit worse and do it ..
" he pushed someone to suicide , no one must criticise anyone in internet anymore " ??? ..

 

[jenbooks]

Lebowski

First of all I'm very grateful Dreambirdie, Klutzo, Sushi and Brenda reported their side effects and exactly how horrible they were. Including feeling suicidal. This shows me exactly how bad they were. How would I know otherwise?

Secondly, in terms of critiquing sick desperate people on the internet, yeah, I think you should err on the side of consideration and gentleness. People are very vulnerable.

 

[Jody]

"I felt nearly suicidal with the reaction. Despite Fredds' advice that I should continue with scant regard for the problems I was having I have to say, I stopped the B12 and things have settled down now. I consider that no-one should be advising people who are extremely sick online to be taking high doses of anything just because it worked for them."


yes if u r about to kill urself for anything u swollow u shouldnt keep on taking it .. but dont take this one as a medical advice just like u shouldnt have freddds ideas ( so my only advice about this is u have to ask it to a dr if u shall kill ursevle or not ).. as far as i read he s just telling ppl here his expriences as u did with ur wonderfull vegetable exp. in ur last post .. and it s everyones own responsibity to make their desicions ..

of course some ppl will push their chances of recovery to the limit and hurt themselves but what now , shouldnt i read any other of his (or someone elses) very interesting ideas just because there r ppl in the world using internet and not capable of taking their own responsiblity of life ??

and i know it is really a very hardly defendable situation unless u strickly point out that this (or any treatment suggestions) should be tried onyl under medical supervision .. he made a mistake as thinking he was talking only to grown up ppl who accept life as a choice but not a push ..

and i wonder what can happen to me if someone who is very close to killing himself reads this post and feel a bit worse and do it ..
" he pushed someone to suicide , no one must criticise anyone in internet anymore " ??? ..

Lebowski,

This thread is a great place for discussion. It's not meant to be a place for put-downs and rudeness.

It has been often discussed here that some people have strong adverse reactions, and since they were very sick people to start with, the reactions can be quite intense and frightening. And for all they know, dangerous.

If your point is, that we must each evaluate for ourselves what treatments we will or will not try, then your point is well-taken.

As to the rest of your post, it reads to me like a dismissal of these people's distress and concerns. I for one would really rather not see this kind of slam on this thread or any other. Please avoid posting these kinds of comments again.

 

[Dreambirdie]

of course some ppl will push their chances of recovery to the limit and hurt themselves but what now , shouldnt i read any other of his (or someone elses) very interesting ideas just because there r ppl in the world using internet and not capable of taking their own responsiblity of life ??

and i know it is really a very hardly defendable situation unless u strickly point out that this (or any treatment suggestions) should be tried onyl under medical supervision .. he made a mistake as thinking he was talking only to grown up ppl who accept life as a choice but not a push ...

Hey Lebowski--Point well taken. We are all adults here, albeit chronically ill adults. Still, I don't have a problem with the criticism, AND neither should Freddd. We, who have chosen to experiment with his protocol for the sake of improving our health status, are after all providing REAL HUMAN DATA and a REALITY CHECK for his theory. He needs to see and hear this. I think it is a good education for all involved.

I do not hold anyone but myself responsible for what I choose to ingest. But I also feel it would be IR-responsible to remain silent about the adverse effects that I experienced. That is THE mistake I would not be willing to make.

 

[richvank]

To dreambirdie re: simplified treatment approach

Hi, dreambirdie.

In response to your request, the updated protocol for the simplified treatment approach to lifting the methylation cycle block is posted below.

Please note that I am not claiming that this is the optimum treatment. I (together with the help of a person on the Yasko treatment) extracted it from the full Yasko treatment program. I did this for two reasons: to test the Glutathione Depletion--Methylation Cycle Block hypothesis for CFS, and to provide a treatment protocol that was simpler and less expensive than the full Yasko program. I first proposed it in January, 2007.

The main parts of it are hydroxocobalamin and the active forms of folate (5-methyltetrahydrofolate and folinic acid). There is also a multi to supply vitamins and essential minerals as well as other supplements to support the sulfur metabolism and the antioxidant system. There is also a phosphatidylserine complex to support the damaged cellular membranes and to help clear out toxins from the membranes.

From what I can tell, there are many similarities between it and freddd's suggested treatment, but there are also some differences. Freddd emphasizes the importance of taking both the methyl and the adenosylcobalamin forms of B12, and he suggests higher dosages. He also recommends taking cofactors, perhaps in higher dosages than are in the Yasko multi.

Most of the people who have tried the protocol below have benefited from it, though some have not noticed any effect. In the latter cases, some apparently did not have high enough levels of the cofactors or of the esssential amino acids, such as methionine and serine. These are important to support and feed the methylation and transsulfuration pathways.

I acknowledge that I still have a lot to learn about treatment, but experience so far, including an open-label cliinical study, has convinced me that lifting the methylation cycle block, which allows glutathione to come up to normal, is an important part of the treatment for CFS.

People seem to differ a lot in terms of the dosages that work best for them. Some take only a "sprinkle" of the folates and/or B12, in order to avoid major unpleasant symptoms. Others require fairly large dosages to see effects. I think it depends to a large degree on the set of genomic polymorphisms that a person has inherited. For example, Dr. Yasko has found that people who have polymorphisms in methionine synthase and methionine synthase reductase require much higher dosages of B12.

I hope this is helpful, and I will note again that my position is that a person must be working with a licensed physician while on this treatment, to make sure it is appropriate for them, and to detect and deal with any adverse effects that may arise.

Best regards,

Rich

April 18, 2009


SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME (Revised)

(Extracted from the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

1. FolaPro [2]: tablet (200mcg) daily
2. Actifolate [3]: tablet daily
3. General Vitamin Neurological Health Formula [4]: start with tablet and work up dosage as tolerated to 2 tablets daily
4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
5. Activated B12 Guard [6]: 1 sublingual lozenge daily

All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


[1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
[2] FolaPro is a registered trademark of Metagenics, Inc.
[3] Actifolate is a registered trademark of Metagenics, Inc.
[4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
[6] Activated B12 Guard is a registered trademark of Perque LLC.

 

[klutzo]

a kvetch about doctors

Dear Rich,
Thank you so much for posting the simplified protocol supplements and where to find them. I also understand that you have to issue a disclaimer.

I just want to comment that for many of us, finding, let alone being able to afford, or travel to see a doctor who knows zip about any of this is harder than winning the lottery when you haven't even bought a ticket. In my area, if you want someone who knows anything about nutritional medicine, you must see a CAM provider and pay out of pocket. I did this for many years when funds were less tight, trying 5 different practitioners. Some claimed to know about CFS and FMS but really did not, and none really knew about Lyme. All I have to show for it is an empty wallet. All of the natural products I've found that have actually helped me have been found on my own.

I've always wondered why, when I'd try to discuss the latest research, my doctor's eyes would glaze over. I figured they just were not interested in such a complicated illness and wanted my ten minutes to be over with, ASAP.

Then I read recently about a survey of doctors which showed that only 3% of doctors even know what a Natural Killer cell is! Now I see that my doctor's eyes glaze over because they are clueless as to what I'm talking about and don't want to admit it. I know more than they do, a truly scary situation. I have told my PCP, one of my four regular doctors, that I am doing this protocol. She had no comments. I understand that I am in a "use at own risk" situtation, and will not complain if bad things happen. I will be sure to post them for others as a caution, however.

Meanwhile, I'm still getting over the effects of starting with too much too quickly. I got a total of 3 hrs. sleep last night and feel like I've swallowed some sort of long-acting speed.

klutzo

 

[Dreambirdie]

Thanks and questions for Rich

Thank you so much, Rich, for posting this, and for your input on this discussion.
A few questions for you, regarding the simplified treatment:

"There is also a phosphatidylserine complex to support the damaged cellular membranes and to help clear out toxins from the membranes."

Are all brands of the PS created equal? I have used a couple different ones and felt absolutely nothing from them. Also, does it make a difference in effectiveness if PS is taken with or without food?

"lifting the methylation cycle block, which allows glutathione to come up to normal, is an important part of the treatment for CFS."

What helped me to get through the worst of the metal detox (that came up as a result of Freddd's protocol), was the N-A-C. It is PHENOMENAL, for me, in the detox assistance it provides my poor overwhelmed liver. I took 3-4 gm/day for 3 days, and feel SO much better now. Is the N-A-C "forbidden" on the simplified protocol, as it is on Freddd's protocol? Does it interfere with lifting the methylation block?

Also, I like to start with one supplement at a time, so which order would I go in, if I were to use this treatment? Do I begin with the B12 or the folates? And which folate would be best to take first?

And lastly, why is the hydroxy being used instead of the adB12? What is the difference, if any, in how they function? And can abB12 be used in place of it?

And one more thing, regarding the denatured whey... Freddd's got this on his NO-NO list as well. I just bought a whey protein powder (not sure if it's denatured) and was holding off using it. Would it work in your protocol to include it or not?


Thanks in advance, Dreambirdie

 

[klutzo]

One question for Rich.....

I would like to add to Dreambirdie's questions above whether or not ALA can be used instead of NAC? I have a lot of ALA in my multivitamin and it has some extra benefits I can really use that NAC does not, like helping insulin resistance.

Thank you,
klutzo

 

[jenbooks]

DB I think hydroxy is a precursor which your body can convert as needed to more active forms both ad and methyl. This is always the safest route as it doesn't push your body as much as flooding it from top down. OTOH Sushi has had reactions to hydroxy so it's strong too.

I never tolerated whey just fyi. Made me nauseous and toxic.

 

[lebowski]

"I consider that no-one should be advising people who are extremely sick online to be taking high doses of anything just because it worked for them."

hi jody ,

my point is , i must have the right to know if something in high doses can work for some people and ,online, cause i dont dont think i can use any other sources for this info nor i have any leftover energy for this ..

and the right to give such info out must be very well protected against suggestions to ban , phorbite , jugde socially, accuse of irresponsiblty of putin ill ppl at risk whatever ..

and i m very sure now the above quote did not mean this .. if it did then i d written what i had to ..

they will one day use the argument of " putting desperate ppls health with experimental treatment suggestions " for banning all these online activities and free selling of supplements .. and i think this is a prosedure already began .. i dont know how u react this or if u do or not , or anyone there care or not .. but i hope u all do ..

and if u guys dont erase the post about it , it s good enough for me .. i was not here to share ideas or interaction of any kind , i d wanted to thank freddd for his efforts that s it ..
and one more thing , thanks to everyone joining these boards and writing their expr of any kind which i appreciate deeply ..

 

[Jody]

Lebowski,

I agree with you that you need to have access to this information.

As it happens, I take methylcobalamin and it works for me. We want you and everyone else to be able to find what will work for you.

The issue I had with your post was that it came across as harsh and disrespecting of some of our other posters. You may not have intended this, but I need you to know, that's how it reads.

And that's what I'd like you to avoid doing in anything that you post.

I'm glad to see that the other parties didn't seem to get too knocked down by what you said. They are a feisty bunch.

But you don't know how somebody may react to something you write. Someone who is more fragile could be devastated by something they read here.

This is what I want to guard against.

Don't worry. We won't be deleting threads or posts or censoring anything.

We have the same goal -- to learn everything we can so that we can heal up from cfs and go on with our lives again.

 

[jenbooks]

Nicely put, Jody.

 

[Dreambirdie]

Jody dear

Who me, feisty?

Thanks for watching out for us.

 

[brenda]

lebowski

My post was not about wanting to stop people from giving information about their experiences and whether they were to do with large doses of anything or not. And of course it is our own responsibility if we want to try out ourselves what they have done. They cannot be held responsible for that. It is our choice and we are all adults. I agree that there should be no restrictions on what they share.

as far as i read he s just telling ppl here his expriences as u did with ur wonderfull vegetable exp. in ur last post .. and it s everyones own responsibity to make their desicions .

My point is that a number of us here were having bad reactions when we tried out the protocol, but Fredd was encouraging us to continue, in my case he said I wrong regarding my feelings that my thyroid and adrenals were being stressed and they are in no state to cope with any further stress. My hair was falling out quite rapidly but Fredd did not seem to think that his was something to be concerned about. He is actually acting as a teacher here, not just giving his experiences. He is giving people advise about what to take and what not to take.

I appreciate it is with good intentions, he is not trying to sell anything and has not interest in the products he is advisiing people to take, or so he tells us. He just wants to help others and that is commendable. But people on here are very seriously ill and very desperate to find cures, and are vulnerable to listen to someone who seems to have an answer for them. I don't think that Fredd is understanding just how ill some are and how the smallest thing can put them into a deep relapse and he is seems to be taking no notice that people are reacting badly or at least is not interested.

At least he should be warning people that they should go very carefully and say that others may not respond like he did to the treatment. I agree with rich that it is advisable to have a doctor involved when doing the protocol and granted many will not be able to afford this, but Fredd should be advising it anyway imo.

I thought that it is important to say how bad I felt ie near suicidal for others to understand how the protocol is affecting others.

I think you have totally misunderstood me.

Thanks Jody.

Brenda

 

[Jody]

Jen, dreambirdie and brenda,

Y'all know you are made of tough stuff.

All three of you have been through hell and are still standing. (so to speak. )

But tough as you are ... I couldn't help myself for a minute there.

I know we all understand where Lebowski is coming from. We all know this is a pretty intense issue and it provokes strong feelings on all sides.

As long as everyone is able to be respectful of each other, ... we're golden.

Now. You people are all way over my head. I am backing out of this thread again.

Carry on.

 

[Sushi]

I say thanks Jody too!

Your words, tone, and humor keep this forum rocking!

Sushi

 

[Jody]

Sushi,

Thanks.

But, I think that may be the vertigo.

 

[Dreambirdie]

sick w cold

Hello all--

As it turns out, the intense detox drained my energy and now I am sick with a cold. So I'm off the computer and back to my nice warm bed.

Thanks again Jody for your support, and Jen, Sushi, Brenda for your input.

Nighty night ~DB