Exciting news! Cohort trying the simplified GD-MCB treatment growing fast

[Guest guest]

Hi, all.

I realise that not everyone here is ecstatic about my approach to

treating CFS, but I like you nevertheless, and I don't want anyone to

be left out. So here's the big news:

As of this afternoon, the number of PWCs who have notified me that

they are trying the new simplified treatment approach based on the

glutathione depletion--methylation cycle block hypothesis for CFS has

reached twenty-four, and several more have informed me that they are

planning to start at various times in the future.

This has developed from a standing start in late January, 2007. Most

of these people

have been on it for only a few weeks or a few days, the longest being

a little over three months now. Because the pioneers on this

treatment have been posting such good early reports on CFS internet

boards (especially the ImmuneSupport FM/CFS board), there appears to

be an avalanche effect going on in terms of new people starting it

over

the past few days. I find it quite exciting!

One of the first things several have noticed is better sleep. There

are also reports of memory returning, less pain, more energy, brain

fog lifting, improved thyroid function, vulvodynia going away, and

more. I think we are finally hitting the root cause in the

biochemistry for many PWCs.

I don't yet know whether this treatment will work for " pure

fibromyalgia. " I haven't been pushing it for that, because I don't

know how FM develops at the biochemical level. I do think I

understand how many cases of CFS develop now, though, and I believe

that the science is in place to support this treatment for CFS. I

presented

it in a poster paper at the IACFS conference in January.

As many of you may know, I've been trying to figure out CFS for over

ten

years. Thanks to the work of others, including Dr. Cheney and the

autism people, I think we are finally there, at least for a major

subset, and perhaps for the majority of cases.

Is there a downside to this treatment? Yes, it doesn't bring a cure

overnight, and there is unavoidable detox to go through, because the

body accumulates toxins and infections while a person has CFS. Their

detox system and their immune system are not operating properly

during

this time. And the rates of excretion of toxins from the body are

limited. So

the more that has accumulated, the longer it will likely take to work

off the backlog and clear it all out, so that the person can be

healthy again. But I'm convinced that it will happen, if the person

hangs in there with the treatment.

So far very few who have started this treatment have quit. Several

find that they need to take breaks to let the detox settle down to a

tolerable level, but because they begin experiencing improvement in

CFS

symptoms almost immediately, they are motivated to continue.

For those interested in the details of this treatment and its

history, here's a reprint of something I posted on the ImmuneSupport

board:

Simplified Treatment Approach--Current Version 05/22/07 09:58 AM

Here is the current version of the simplified treatment approach

based on the glutathione depletion--methylation cycle block

hypothesis.

All the supplements can be obtained from http://www.holisticheal.com,

or you can obtain them elsewhere. The cost is a little over $2.00

per day for all the supplements at the dosages suggested below.

These supplements and dosages have been selected by Dr. Amy Yasko as

part of her complete treatment approach, as described in her

book " The Puzzle of Autism. " Substitutions or changes in dosages may

not have the same effect as the combination of supplements and

dosages suggested. It's not wise to raise the dosages, at least for

a few weeks, because this can bring on detox at an intensity that is

difficult to tolerate. Please be patient and take it easy!

Here are the five supplements:

1. one-quarter tablet (200 micrograms) Folapro (Metagenics)

2. one-quarter tablet Intrinsic B12/folate (Metagenics)

3. (up to) 2 tablets (It's best to start with ¼ tablet and work up as

tolerated) Complete Vitamin and Neurological Health Formula (Holistic

Health Consultants)

4. one softgel capsule Phosphatidyl Serine Complex

5. one sublingual lozenge Perque B12

The first two supplement tablets can be difficult to break into

quarters. An alternative is to crush them into powders, mix the

powders together, and divide the powders into quarters using a knife

and a flat surface. The powders can be taken orally with water, with

or without food, and do not taste bad.

Since some questions have been asked about what ingredients are

essential, and since some of the people appear to be taking

augmented versions of the simplified GD-MCB treatment approach that I

wrote about in my January treatment paper, I want to give you some

history and some comments about that to help you with your own

choices about what to take. There's nothing proprietary about what

I've written. I would just like to see people get healthy.

I have been trying to figure out CFS for about 10 years, since a

friend of my wife and myself developed it and wasn't given any hope

by

her doctor. I started studying biochemistry and physiology, joined

some CFS internet lists, started using PubMed to study the published

literature, went to the conferences, got Dr. Cheney's tapes, etc. In

1999 I picked up on Dr. Cheney's observation that many of his

patients were depleted in glutathione. When I learned of all the

things that glutathione normally does, and saw that many of these

tied in with the symptoms of CFS, I became convinced that this is a

fairly fundamental aspect of the pathophysiology of CFS. So for

several years I encouraged PWCs to build their glutathione by various

means. This helped quite a few, but it was not a cure for most. It

was just a temporary help. Some couldn't tolerate it at all. In the

fall of 2004 I reported this at the AACFS conference in Madison, WI.

You can find that poster paper at the phoenix-cfs.com site, under

research.

Then in late 2004, a paper came out by S. Jill et al. on

autism. I learned for the first time that glutathione was depleted in

autistic kids, and that this was tied to problem earlier in the

sulfur metabolism, in the methylation cycle. This was a big BINGO for

me. It looked as though the same thing was happening in CFS, and now

I knew why PWCs could not build up their glutathione levels on a

permanent basis by the methods I had been advocating.

I went to the Long Beach DAN! conference and learned more about

autism, and I became more convinced that we were dealing with the

same mechanism.

I started suggesting some DAN! treatments to the PWCs, using the

Pangborn and Baker book, which is an excellent background book on

this, by the way, and I recommend it. Well, the people who

tried this felt somewhat better at first, but then things turned

south for them. Meanwhile, I learned about Amy Yasko's approach in

autism, and I decided that I liked it better, because it started at

the genetic level, and built the biochemistry on top of that, dealing

with people individually based on their genetic variations. So about

a year ago I started encouraging PWCs to try Amy's approach.

Amy's approach is not simple, easy, quick or cheap, and it has not

been easy for PWCs to do it, but the people doing it have experienced

benefit and are continuing with it.

For the 2007 IACFS conference, I decided to submit another paper,

this time giving the rationale for a methylation block in CFS,

connected to the glutathione depletion. It was accepted, but again

only as a poster paper, so I printed up a lot of copies of it and did

a personal sales job on as many people at the conference as I was

able. One clinician asked me to write up a

description of treatment based on this hypothesis. Later in January I

emailed him a treatment writeup, which is what is on the internet

(also at www.phoenix-cfs.com, under Research). In

writing this, I knew that the full Yasko treatment approach is

probably not going to be practical for most clinicians. Amy has

written me that she has not been able to interest many in doing what

it takes to get up to speed on it and to apply it in individual

cases. They just don't have the time, and frankly,

many have told me that they do not find biochemistry very easy to

assimilate.

So I decided to try including a simpler approach in addition to

describing the full Yasko treatment approach. In doing so, I asked

Trina in the cfs_yasko internet group for help, since she is very

knowledgeable about the Yasko treatment approach and is using it

herself. She pointed out some problems with what I had in my draft,

and then

suggested a better approach, which I adopted substantially. The

simplified approach I put in my treatment article is essentilly what

Trina suggested, because it made a lot of sense to me. So I must give

the credit for this to her. She also suggested including nucleotides,

but I left them out because there are some in the complete multi (now

called the General multi).

O.K., so now what do each of the ingredients do, and how important is

each one?

FolaPro--This is in there because a lot of PWCs have a SNP in their

MTHFR enzyme that affects the production of 5-methyltetrahydrofolate,

which is the same as FolaPro. This form of folate is the one used by

the methionine synthase enzyme, and that's the enzyme that appears to

be blocked in many or most cases of CFS. If a person had their

genetics characterized, as in the full Yasko approach, they would

know for sure whether they needed this one, but in the simplified

approach we just suggest giving to everyone.

Intrinsic B12/folate--This one has 3 forms of folate--FolaPro,

folinic acid and folic acid. It also has some cyano-B12 and some

intrinsic factor as well as some other things. The folinic is helpful

because some people can't use ordinary folic acid well, as a result

of genetic issues. Also, this helps to supply forms of folate that

will make up for the low tetrahydrofolate resulting from the block in

methionine synthase. This enzyme normally converts 5-

methytetrahydrofolate to tetrahydrofolate, which is needed in other

reactions. This supplement also has some intrinsic factor and some

ordinary B12 supplement to help those who have a type of pernicious

anemia that results from low production of intrinsic factor in the

stomach and which prevents them from absorbing B12 in the gut. B12 is

also needed by methionine synthase, in the form of methylcobalamin,

but this supplement has cyanocobalamin, which must be converted in

the body by glutathione and SAMe to form methylcobalamin. As

glutathione and SAMe come up, this should become more effective.

Complete vitamin and ultra-antioxidant (now called the General

Vitamin and Neurological Health Formula)--This is Amy Yasko's basic

high-

potency general nutritional supplement. This is kind of a foundation

for the biochemistry in general. However, I think it's better for

PWCs than other general supplements, because it has particular things

needed for dealing with a methylation cycle block, including some TMG

and sulfur metabolism supplements as well as nucleotides. It is also

high on magnesium and low on calcium, and has no iron or copper. So I

don't think other general supplements do everything this one does,

and I think it's important in the treatment.

The TMG helps to get the shortcut pathway in the methylation cycle

going, and that helps to build SAMe, which is needed to get the

methionine synthase reaction going. The nucleotides will help to

supply RNA and DNA for new cells until the folate cycle is working

right again.

Phosphatidylserine complex--This has various phosphatidyls in it,

which will help repair damaged membranes, including those in cells of

the brain and nervous system. It also has some choline, which can be

converted to TMG (betaine) in the body, to help start the shortcut

pathway.

Perque B12--This is a hefty dose of sublingual hydroxocobalamin. As I

said above, B12 is needed to get methionine synthase going.

Methylcobalamin is actually the form needed, but some people cannot

tolerate it for genetic reasons, and I'm also concerned that people

with high body burdens of mercury could move mercury into the brain

if they take too much methylcobalamin. Methylcobalamin is the only

substance in biological systems that can methylate mercury, and

methylmercury can cross the blood-brain barrier. This supplement is

sublingual to compensate for poor B12 absorption in the gut of many

people.

There are also two others that were in the earlier version of the

simplified approach:

SAMe--This is normally part of the methylation cycle. Depending on

genetic variations (SNPs or polymorphisms) some people can't tolerate

much of this, and some need more. The dosage is a compromise. If

people can't tolerate this, they should leave it out, because

stimulating the shortcut pathway, using TMG and choline in the other

supplements) will probably make enough for them.

Methylation Support Nutriswitch Formula--This is a mixture of RNAs

that is designed to help the methylation cycle. It is somewhat

expensive, and is not essential, but is helpful and worthwhile if

people can afford it.

I do think that the forms of

folate and B12 are probably essential, because they go after the

basic problem in CFS, in my opinion. I think the General supplement

is important, and, and I think that some way to stimulate the

shortcut is important, also. SAMe will help some people but perhaps

not be tolerated by others, and if not, can be left out. The

Methylation Support formula is helpful, but could be left out.

Adding glutathione support will help some people, as will adding

molybdenum. As more things are added, though, we are moving toward

the full Yasko approach, which is fine, but it is more complicated

and expensive, too. Maybe we should view this simplified approach as

the front door to the full Yasko approach. It might work fine by

itself for some people, but for others, maybe they should look at The

Puzzle of Autism, sold on www.Amazon.com, to see what else there

might

help them. If the simplified approach seems to help to some degree,

and it catches your attention for that reason, but it still doesn't

do the whole job for you, then you could look further at the the full

Yasko treatment. At least then you would have some reason to dig into

it. Otherwise, it looks pretty daunting to a lot of PWCs.

Rich