Re: How's the simplified glut. depletion--methylation cycle block treatment doing?

July 1, 2007

Rich, this is really impressive. It's hard for me to not get overly excited

about this. Can you direct me where I can read about how the treatment is done?

How's the simplified glut. depletion--methylation

cycle block treatment doing?

Hi, all.

Here's a repost from the cfs_yasko group in response to an expression

of difficulty in getting a good picture from trying to read the

ImmuneSupport discussion board about what's going on with the

simplified treatment approach based on the glutathione depletion--

methylation cycle block hypothesis for CFS. People here might be

interested in this, also:

I agree that it's difficult to get a clear picture of the experiences

people are having with the simplified treatment approach by trying to

read the posts on the ImmuneSupport board. The way that board works

is that threads are constantly being swept down the board, so that it

isn't obvious where the reports are. Also, some of the people are

just reporting to me off-line.

I really need to collate all these data and post a summary, but I am

pretty seriously stretched for time right now. From my reading of

the reports, I would say that this treatment is working surprisingly

well, a whole lot better than I expected that it would when I put it

together, with Trina's help, from Dr. Amy's step 2, back in late

January.

The first changes are observed right away by some of the people,

while others have to build up their B12 and folates for a while

before things start happening.

What happens is a combination of improvement in several CFS symptoms

of long standing, together with increase in detox symptoms. I think

this is to be expected, because the methylation cycle block appears

to be the root cause of all or nearly all aspects of CFS in many of

the cases. That means that the same treatment that is fixing a lot

of the deficiencies in the biochemistry is simultaneously re-starting

the detox system and the immune system. So while obvious

improvements are happening, there is also a major detox and die-off

of pathogens going on, and the rate at which the latter can be

tolerated is limited by the rate the body can excrete the toxins that

are mobilized. I liken this to the first line in the Dickens

novel, Tale of Two Cities: " It was the best of times, it was the

worst of times. "

The kinds of improvements people are reporting are as follows:

Sleeping through the night for the first time in years.

Having to drop thyroid hormone supplementation, because improved

thyroid function made them HYPERthyroid with the supplement.

Having the body temperature come up to normal. Some have brief, low

fevers before this occurs, presumably because the immune system is

fighting infections, probably viral, given that they are low fevers.

Experiencing slight pain in areas where sinus infections have been

chronic.

Brain fog lifting.

Muscle pain decreasing.

Daily urine volume and thirst normalizing. Some actually have more

thirst and more urination for a while, presumably because of detoxing.

More energy and ability to do many more things without getting

exhausted. Post-exertional malaise going away.

Ability to take a shower standing up.

Ability to tolerate drinking alcohol restored.

Ability to remember faces and names and to read without becoming

exhausted restored.

Blood pressure coming up from being below normal.

These are just some of the things I recall from posts I've seen in

the past few days. Together with these reported improvements, there

are simultaneous graphic accounts of all sorts of detox responses,

from more frequent, smelly, and strange-colored stools, to smelly

perspiration, increased urination, headaches, runny noses, temporary

rashes, strange taste sensations, unusual emotions, and a lot more.

There are relational things going on, as people see the need to

adjust relationships with spouses as they become more capable and

more assertive.

As far as I know, only one person has stopped the treatment, and she

plans to restart after she is able to resolve what to do about a

goiter that she has had for some time. The others have found that

the pluses outweigh the minuses for them. I think there are at least

50 people doing this, and I keep hearing from others who have been

doing it for a while, so I suspect that there may be quite a few out

there whom I don't know about.

The longest anyone has been on this treatment is about four months,

and that person is Louella on this board. The factors that appear to

be limiting in how soon we can expect cures are the limited rate of

excretion for toxins compared to the large inventories some people

appear to have built up over many years of being ill, and the rate at

which myelin repair can be carried out in the brain once the

methylation capacity is restored and myelin basic protein can be

synthesized. I still fully expect this treatment to produce cures,

but it will take time to test my expection and see whether it will in

fact turn out to be true.

That's sort of a summary, at least the best I have time to do right

now. I realize that this is a little helter skelter, but that's how

scientific revolutions are, and I think we are in the middle of one!

Rich

July 1, 2007

Hi, .

Here is a repost from the ImmuneSupport CFS discussion 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 the holisticheal site, or

you can obtain all but the Complete Vitamin and Neurological Health

Formula elsewhere.

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, although some people do better if they start with

smaller dosages than those given below. It's important to " listen to

your body " when doing this treatment. If the detox becomes too

intense to tolerate, or if you begin to have significant cardiac or

respiratory symptoms, back off on the dosages or take a break for a

while. It would be best to do this treatment in cooperation with your

doctor, just so that any individual issues you have can be taken care

of.

This treatment will produce die-off and detox symptoms as your immune

system and detox system come back to normal operation and begin

ridding your body of accumulated infections and toxins. This is

inevitable, and has to be endured. However, while you experience

detox symptoms, you should also experience improvement in your CFS

symptoms over time. You can control the intensity of the detox

symptoms by adjusting the dosages.

Please resist the temptation to try to get better faster by

increasing the suggested dosages. In particular, do not exceed the

suggested dosages for the FolaPro and the Intrinsi/B12/folate

supplements, at least until you have been detoxing for several weeks.

Some who have done this have experienced very unpleasant levels of

detox symptoms that had momentum and did not decrease rapidly when

the supplements were stopped.

As far as I know, there are no negative interactions between these

supplements and the prescription medications used by physicians in

treating CFS. However, I urge you to discuss this issue with your

doctor if you are taking prescription medications.

If you are taking prescription medications, I expect that you will

need them less and less as you are on this treatment. However, be

sure to consult with your doctor before stopping the use of

prescription medications. Some of them can cause serious withdrawal

symptoms if stopped too abruptly.

Several people have reported that they no longer needed thyroid

hormone supplementation shortly after starting this treatment. If you

are taking thyroid hormones, be alert to the possibility that you may

experience HYPER thyroid symptoms after starting this treatment, such

as palpitations and sweats. Consult with your doctor about decreasing

thyroid supplementation if this occurs.

Here are the five supplements:

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

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

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

tolerated) Complete vitamin and antioxidant 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.

Some people have asked what time of the day to take the supplements.

A few have reported that the supplements make them sleepy, so they

take them at bedtime. If they don't make you sleepy, I don't think it

matters when you take them.

Since some questions have been asked about what ingredients are

essential, and since some of the people here 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 site, under

research. It's also posted below.

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 a 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 the

biochemistry of both autism and CFS, in my opinion, 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 the

approach of Amy Yasko, N.D., Ph.D., 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 who was interested was Dr. Bell, who is chairman of

the federal CFS Advisory Committee. He 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. 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, in my opinion,

many of them 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.

Intrinsi/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 cyano-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 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 should help with the cortisol

response. 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 mercuric 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.

O.K., now you know about as much as I do about the ingredients in the

simplified GD-MCB treatment approach. 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.

I don't think there is a problem with taking other supplements

together with these basic supplements, for the most part. One

exception is that I would not recommend taking additional folate

beyond what is suggested above, since the various forms of folate

compete with each other for absorption, and it is important to get

enough of the active forms into the body. Also, it is important not

to take too much folate, because this can cause the detox to develop

a momentum, so that it will take some time to slow it down if you

want to do that.

I would also not recommend taking additional trimethylglycine (TMG,

also called betaine) or additional forms of choline, such as

phosphatidylcholine or lecithin, since that will speed up the BHMT

pathway too much at the expense of the methionine synthase pathway.

The betaine-HCl used to augment stomach acid is something you may

have to drop while doing this treatment, too, since it will

contribute to this problem.

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 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

>

> Rich, this is really impressive. It's hard for me to not get

overly excited about this. Can you direct me where I can read about

how the treatment is done?

>

July 1, 2007

Rich

Thank You. I read the paper before but my foggy brain didn't get it. What you

have just posted makes it seem do-able.

I wonder though how much of what I am using to maintain the place I'm in right

now would interfere....Would you suggest just discontinuing everything to use

the simplified plan? I know you said that need not be done, but rather than

miss something that shouldn't be duplicated I'm inclined to think that 'd be the

way to go.

With much appreciation.

Diane in MI

July 1, 2007

Hi Rich,

It's great that you have developed this simplified methylation plan

and that it's working for some PWC's. I would appreciate your

thoughts on a few of my questions. You had written in one of your

messages that if a person has high levels of toxins, and/or if he/she

is in a very debilitated condition, you believed that the person

would have to do the full Yasko treatment in order to build up their

bodies before starting the detox phase. Do you still believe that's

true or have some of the PWC's following the simplified program been

very debilitated and highly toxic, yet are improving anyway?

Regarding the preparation for detox, you wrote something to the

effect that it involves a well-functioning gastrointestinal system

that can absorb nutrients & dispose of toxins; a healthy nervous

system which includes normal magnesium levels, good blood flow, &

enough glutathione; also a healthy nutritional status, plus organs

and systems functioning well, and no bacterial infections.

I want very much to try this plan, but it seems that the areas that I

need to improve in way of preparation are areas that I've been trying

to improve for years, but with little success. Have you found that

Dr. Yasko's supplements improve these areas better than what has been

offered by most doctors in the past?

If those of us who have high levels of heavy metals, poor digestion

and liver function, low magnesium, poor blood flow, and who have been

sick for 15 years [or more] and are debilitated did prepare by

following Yasko's plan to improve these areas, how would we know when

we have improved enough to begin the repair of the methylation

blocks? Would we need to do testing regularly to see how the liver is

working plus test the level of magnesium? Would the GS Detox Panel be

used to check the liver every few months? Would we also test for

glutathione levels? If so, how often?

Sorry for all of the questions. I sincerely would like to try this

program. I read Yasko's site in detail when I first heard about it in

this group, but that was quite a while ago and now I've forgotten the

details. I read the CFS_Yasko site every few days but haven't found

the answers to these questions. I realized in the beginning that

Yasko's full plan was too expensive for me to do and required more

supplements than my digestive system could tolerate, but with your

simplified methylation block treatment plan, maybe there's a chance

for me to try it and gain some improvement. It would be helpful to

have a simplified preparation plan, a " low priced, few supplements "

step one phase. I'm hoping to develop one for myself that I can

physically digest & afford. I'll begin again to study the Yasko

supplements that will improve my liver phase 2 function, build

magnesium, balance gaba/glutamate, etc. In the meantime, I would be

grateful for any guidance in these areas.

Sandy Olson

" rvankonynen " wrote:

>Here is a repost from the ImmuneSupport CFS discussion board:

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

> Here are the five supplements:

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

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

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

as tolerated) Complete vitamin and antioxidant neurological health

> formula (Holistic Health Consultants)

> 4. one softgel capsule Phosphatidyl Serine Complex

> 5. one sublingual lozenge Perque B12

July 1, 2007

Hi, Sandy.

Thanks for your emails. I understand what you're asking. The reason

I hadn't answered your earlier one is that I've been thinking about

what to say. Yes, I certainly do remember our appointment with Dr.

Len Saputo a few years ago. I think I have a better understanding of

what to do for CFS now than I did then, and I hope you will be able

to take advantage of it, but it's a tricky business to deal with

advanced cases of CFS. My responses to your second email are at the

asterisks below.

>

> Hi Rich,

>

> It's great that you have developed this simplified methylation plan

> and that it's working for some PWC's. I would appreciate your

> thoughts on a few of my questions. You had written in one of your

> messages that if a person has high levels of toxins, and/or if

he/she

> is in a very debilitated condition, you believed that the person

> would have to do the full Yasko treatment in order to build up

their

> bodies before starting the detox phase. Do you still believe that's

> true or have some of the PWC's following the simplified program

been

> very debilitated and highly toxic, yet are improving anyway?

***I wish I could give you a good answer to this question. I've

tried to be very cautious about recommending the simplified treatment

to people who are very debilitated, because I don't want to hurt

anyone. As a result, there aren't many people like this who have

tried it, as far as I know. There is one person on ImmuneSupport who

had a bad experience that she thinks was associated with trying this

treatment. She ended up having to go to the ER with cardiac and

respiratory symptoms. It turned out that it wasn't an M.I., and it

seems now that it was related to a large goiter that she has, called

an autonomous multinodular goiter. We are guessing that what

happened was the treatment got her thyroid working more normally

again, as has occurred for others, but in her case, this apparently

stirred up her autonomous goiter, which expanded and compressed her

windpipe even more than it had been in the past, making it even

harder for her to breathe. She stopped the treatment, and is now

trying to figure out what to do about her goiter so she can resume

the treatment, because she's convinced that it was helping in other

ways. As she puts it, she believes it's the road to " wellsville. "

She doesn't want to have surgery on her goiter again. So I guess

this was kind of a special case. She's been asking me some very

tough questions, too, and I've been trying to understand how this

type of goiter responds to things. Apparently the medical community

doesn't understand autonomous goiters very well. They're kind of

unpredictable, and they try to whack them out, I guess. But they

aren't in a very nice place, so that can be difficult.

>

> Regarding the preparation for detox, you wrote something to the

> effect that it involves a well-functioning gastrointestinal system

> that can absorb nutrients & dispose of toxins; a healthy nervous

> system which includes normal magnesium levels, good blood flow, &

> enough glutathione; also a healthy nutritional status, plus organs

> and systems functioning well, and no bacterial infections.

>

> I want very much to try this plan, but it seems that the areas that

I

> need to improve in way of preparation are areas that I've been

trying

> to improve for years, but with little success.

***Right. That's a wonderful wish list, isn't it? But there seems

to be kind of a " you can't get there from here " quality about it for

some PWCs, like yourself. The crazy thing about this is the vicious

circle nature of it. All these things should improve if you lift the

methylation cycle block and allow glutathione to come up, but to do

that, you also have to endure a lot of detox and die-off, and can you

do that before these things are fixed? I think that once you " got

over the hump, " if you could, this treatment would start

bootstrapping itself and you would experience lift-off, so to speak

(how do you like all the mixed metaphors?) (:-) Hopefully you get my

drift. For a while, it would be like trying to drain the swamp while

you're up to your ears in alligators, but ultimately you should win,

if you can fend off the alligators long enough to get the pumps

running. Can you tell that I'm really an engineer?

Have you found that

> Dr. Yasko's supplements improve these areas better than what has

been

> offered by most doctors in the past?

***I really don't know. Perhaps people on the cfs_yasko list would

be able to answer that better than I could. Some of them have been

on Step 1 of Dr. Amy's program for several months.

>

> If those of us who have high levels of heavy metals, poor digestion

> and liver function, low magnesium, poor blood flow, and who have

been

> sick for 15 years [or more] and are debilitated did prepare by

> following Yasko's plan to improve these areas, how would we know

when

> we have improved enough to begin the repair of the methylation

> blocks?

***Another very good question. I wish I had a very good answer to go

with it, but I don't. I think we are in uncharted waters.

Would we need to do testing regularly to see how the liver is

> working plus test the level of magnesium? Would the GS Detox Panel

be

> used to check the liver every few months? Would we also test for

> glutathione levels? If so, how often?

***I think that if it were me, I would probably proceed cautiously on

the dosages and start with Dr. Amy's multi, working up on the dosage

slowly as I could tolerate it. That supplement should build up a lot

of the organs and systems, because of its comprehensive makeup. Then

I think I would add the phosphatidylserine complex for a while, and

see how that goes. After building myself up for a while with these,

I would then add the two folate-containing supplements at very low

dosages, and the sublingual hydroxocobalamin. I think the key would

be patience and avoiding the temptation to crank up the dosages too

fast. In this way, I think you would have the best chance to avoid

runaway detox and die-off that would be too intense for you to bear

and that might knock you down further in your condition. I think you

would just have to proceed very slowly and carefully. I think it

would be important to help your excretion as well as you could,

drinking a lot of water to help your kidneys flush out the small

molecule toxins, and taking enough vitamin C or magnesium or both to

keep your digestive tract moving well enough to carry out what is

dumped into the bile by the liver.

>

> Sorry for all of the questions. I sincerely would like to try this

> program. I read Yasko's site in detail when I first heard about it

in

> this group, but that was quite a while ago and now I've forgotten

the

> details. I read the CFS_Yasko site every few days but haven't found

> the answers to these questions.

***I don't think anyone knows the answers for sure. I don't think

anyone has been there.

I realized in the beginning that

> Yasko's full plan was too expensive for me to do and required more

> supplements than my digestive system could tolerate, but with your

> simplified methylation block treatment plan, maybe there's a chance

> for me to try it and gain some improvement. It would be helpful to

> have a simplified preparation plan, a " low priced, few supplements "

> step one phase. I'm hoping to develop one for myself that I can

> physically digest & afford. I'll begin again to study the Yasko

> supplements that will improve my liver phase 2 function, build

> magnesium, balance gaba/glutamate, etc. In the meantime, I would

be

> grateful for any guidance in these areas.

***Those would probably be good things to do, also. I just don't

know how much preparation you would have to do to be able to tolerate

what amounts to step 2, using the simplified approach.

***One thing that has occurred to me is that Dr. Amy's program was

designed primarily for autistic kids. I think that anyone who has

experience with kids (or anyone who remembers how it was to be one)

knows that kids will not accept treatments that taste bad or seem to

make them feel worse rather than better. I think that a lot of what

Dr. Amy has put together for her step one has been put in there in

response to this problem. I think she has had to make the treatment

more " palatable " in order to convince the kids to do it. Adults, on

the other hand, are often able to take the longer view. If they can

be intellectually convinced that it is going to pay off for them in

the long term, they may be more willing to sacrifice their present

ability to feel good for a hoped-for future that will be better. To

the degree that this is what is involved, as opposed to actual

physiological barriers to doing the treatment, it may be possible to

forego a lot of the step 1 stuff for adults, and just ask them

to " gut it out " until they get through the rocky period. The big

question is whether the barriers to doing this are psychological or

whether they are physiological, and I just don't know the answer to

that. I'm hoping that one could guard against the possibility that

there are major physiological barriers by doing what I suggested

above. But I'm only guessing, Sandy.

***Sandy, I don't want to surrender anyone to CFS. I very much want

for there to be a way out of this quagmire for you and other PWCs who

are in the more debilitated category, but at the same time, I don't

want to kill you off in the attempt, either. So it's a major

dilemma. Of course, you know better than I that taking no action

will have its consequences, too. I guess that if I were in your

position I would do what I said above, and I would pray hard while I

was doing it!

>

> Sandy Olson

***Rich

July 1, 2007

Hi Rich

I don't think I've ever heard you address this, but isn't there a

risk with the slowly-slowly approach of losing some folks, let's say

those with a lower toxin burden, because they don't see results soon

enough?

You made the point about the yasko protocol being tailored for

children. It seems reasonable to think that adults might be able to

tolerate higher doses of some of the detox supps IF they haven't

been ill all that long.

I'm not interested in some academic discussion. It's just that given

I was sick for 10 years, and was able to tolerate 4 times the

recommended dosage, I can't help wondering if the bar is too low for

some folks.

Having said which, it did put me back in bed and make me a whole lot

leess productive for a while, but I wasn't working, so it wasn't a

big deal.

Also, maybe mine isn't that complicated a case (wishful thinking??)

cos I haven't had the fevers or the burning skins or some of the

other unpleasant reactions reported by some others.

I suppose the proof is in the pudding, right? It doesn't seem like

anyone has quit yet because they weren't seeing results.

Just a thought.

L.

July 2, 2007

Thanks, Rich,

I appreciate your thoughtful answer. I'll create a plan based on your

suggestions below and more study of the Yasko supplements, then move

forward very slowly and see if I can make some progress. I'll let

you know about any improvements. I know it will take time and

endurance.

You must have seen my message on ImmuneSupport at just the right

moment last night because I later went back and deleted it, thinking

that I wanted to reconsider what I wrote. The message was there only

a couple hours.

It's exciting that you've put together more pieces of the CFIDS

puzzle since our meeting a few years ago. I admire your ongoing

passion in searching for ways to help PWC's. Hopefully, the mystery

will continue to unfold for more and more of us and we will all

improve.

Sandy

" rvankonynen " wrote:

> Hi, Sandy.

>Thanks for your emails. I understand what you're asking. The

reason I hadn't answered your earlier one is that I've been thinking

about what to say. Yes, I certainly do remember our appointment with

Dr. Len Saputo a few years ago. I think I have a better

understanding of what to do for CFS now than I did then, and I hope

you will be able to take advantage of it, but it's a tricky business

to deal with advanced cases of CFS. My responses to your second

email are at the asterisks below.

>

> Hi Rich,

> It's great that you have developed this simplified methylation

plan and that it's working for some PWC's. I would appreciate your

> > thoughts on a few of my questions. You had written in one of your

> > messages that if a person has high levels of toxins, and/or if

> he/she is in a very debilitated condition, you believed that the

person would have to do the full Yasko treatment in order to build up

> their bodies before starting the detox phase. Do you still believe

that's true or have some of the PWC's following the simplified

program been very debilitated and highly toxic, yet are improving

anyway?

> ***I wish I could give you a good answer to this question. I've

> tried to be very cautious about recommending the simplified

treatment to people who are very debilitated, because I don't want to

hurt anyone. As a result, there aren't many people like this who

have tried it, as far as I know. There is one person on

ImmuneSupport who had a bad experience that she thinks was associated

with trying this treatment. She ended up having to go to the ER with

cardiac and respiratory symptoms. It turned out that it wasn't an

M.I., and it seems now that it was related to a large goiter that she

has, called an autonomous multinodular goiter. We are guessing that

what happened was the treatment got her thyroid working more normally

> again, as has occurred for others, but in her case, this apparently

> stirred up her autonomous goiter, which expanded and compressed her

> windpipe even more than it had been in the past, making it even

> harder for her to breathe. She stopped the treatment, and is now

> trying to figure out what to do about her goiter so she can resume

> the treatment, because she's convinced that it was helping in other

> ways. As she puts it, she believes it's the road to " wellsville. "

> She doesn't want to have surgery on her goiter again. So I guess

> this was kind of a special case. She's been asking me some very

> tough questions, too, and I've been trying to understand how this

> type of goiter responds to things. Apparently the medical

community doesn't understand autonomous goiters very well. They're

kind of unpredictable, and they try to whack them out, I guess. But

they aren't in a very nice place, so that can be difficult.

> >

> > Regarding the preparation for detox, you wrote something to the

> > effect that it involves a well-functioning gastrointestinal

system

> > that can absorb nutrients & dispose of toxins; a healthy nervous

> > system which includes normal magnesium levels, good blood flow, &

> > enough glutathione; also a healthy nutritional status, plus

organs

> > and systems functioning well, and no bacterial infections.

> >

> > I want very much to try this plan, but it seems that the areas

that

> I need to improve in way of preparation are areas that I've been

> trying

> > to improve for years, but with little success.

>

> ***Right. That's a wonderful wish list, isn't it? But there seems

> to be kind of a " you can't get there from here " quality about it

for some PWCs, like yourself. The crazy thing about this is the

vicious circle nature of it. All these things should improve if you

lift the methylation cycle block and allow glutathione to come up,

but to do that, you also have to endure a lot of detox and die-off,

and can you do that before these things are fixed? I think that once

you " got over the hump, " if you could, this treatment would start

> bootstrapping itself and you would experience lift-off, so to speak

> (how do you like all the mixed metaphors?) (:-) Hopefully you get

my drift. For a while, it would be like trying to drain the swamp

while you're up to your ears in alligators, but ultimately you should

win, if you can fend off the alligators long enough to get the pumps

> running. Can you tell that I'm really an engineer?

>

> Have you found that Dr. Yasko's supplements improve these areas

better than what has been offered by most doctors in the past?

>

> ***I really don't know. Perhaps people on the cfs_yasko list would

> be able to answer that better than I could. Some of them have been

> on Step 1 of Dr. Amy's program for several months.

> >

> > If those of us who have high levels of heavy metals, poor

digestion and liver function, low magnesium, poor blood flow, and who

have been sick for 15 years [or more] and are debilitated did prepare

by following Yasko's plan to improve these areas, how would we know

> when we have improved enough to begin the repair of the methylation

> > blocks?

>

> ***Another very good question. I wish I had a very good answer to

go with it, but I don't. I think we are in uncharted waters.

>

> Would we need to do testing regularly to see how the liver is

> > working plus test the level of magnesium? Would the GS Detox

Panel be used to check the liver every few months? Would we also test

for glutathione levels? If so, how often?

>

> ***I think that if it were me, I would probably proceed cautiously

on the dosages and start with Dr. Amy's multi, working up on the

dosage slowly as I could tolerate it. That supplement should build

up a lot of the organs and systems, because of its comprehensive

makeup. Then I think I would add the phosphatidylserine complex for

a while, and see how that goes. After building myself up for a while

with these, I would then add the two folate-containing supplements at

very low dosages, and the sublingual hydroxocobalamin. I think the

key would be patience and avoiding the temptation to crank up the

dosages too fast. In this way, I think you would have the best

chance to avoid runaway detox and die-off that would be too intense

for you to bear and that might knock you down further in your

condition. I think you would just have to proceed very slowly and

carefully. I think it would be important to help your excretion as

well as you could, drinking a lot of water to help your kidneys flush

out the small molecule toxins, and taking enough vitamin C or

magnesium or both to keep your digestive tract moving well enough to

carry out what is dumped into the bile by the liver.

> >

> > Sorry for all of the questions. I sincerely would like to try

this program. I read Yasko's site in detail when I first heard about

> > it in this group, but that was quite a while ago and now I've

forgotten the details. I read the CFS_Yasko site every few days but

haven't found the answers to these questions.

>

> ***I don't think anyone knows the answers for sure. I don't think

> anyone has been there.

>

> > I realized in the beginning that Yasko's full plan was too

>expensive for me to do and required more supplements than my

digestive system could tolerate, but with your simplified methylation

block treatment plan, maybe there's a chance for me to try it and

gain some improvement. It would be helpful to have a simplified

preparation plan, a " low priced, few supplements "

> > step one phase. I'm hoping to develop one for myself that I can

> > physically digest & afford. I'll begin again to study the Yasko

> > supplements that will improve my liver phase 2 function, build

> > magnesium, balance gaba/glutamate, etc. In the meantime, I would

> be grateful for any guidance in these areas.

>

> ***Those would probably be good things to do, also. I just don't

> know how much preparation you would have to do to be able to

tolerate what amounts to step 2, using the simplified approach.

>

> ***One thing that has occurred to me is that Dr. Amy's program was

> designed primarily for autistic kids. I think that anyone who has

> experience with kids (or anyone who remembers how it was to be one)

> knows that kids will not accept treatments that taste bad or seem

to make them feel worse rather than better. I think that a lot of

what Dr. Amy has put together for her step one has been put in there

in response to this problem. I think she has had to make the

treatment more " palatable " in order to convince the kids to do it.

Adults, on the other hand, are often able to take the longer view.

If they can be intellectually convinced that it is going to pay off

for them in the long term, they may be more willing to sacrifice

their present ability to feel good for a hoped-for future that will

be better. To the degree that this is what is involved, as opposed

to actual physiological barriers to doing the treatment, it may be

possible to forego a lot of the step 1 stuff for adults, and just ask

them to " gut it out " until they get through the rocky period. The

big question is whether the barriers to doing this are psychological

or whether they are physiological, and I just don't know the answer

to that. I'm hoping that one could guard against the possibility

that there are major physiological barriers by doing what I suggested

> above. But I'm only guessing, Sandy.

>

> ***Sandy, I don't want to surrender anyone to CFS. I very much

want for there to be a way out of this quagmire for you and other

PWCs who are in the more debilitated category, but at the same time,

I don't want to kill you off in the attempt, either. So it's a major

> dilemma. Of course, you know better than I that taking no action

> will have its consequences, too. I guess that if I were in your

> position I would do what I said above, and I would pray hard while

I was doing it!

>

> ***Rich

>

July 2, 2007

Hi, Louella.

You may be right. It's hard for me to judge that. I know that there

are some PWCs who are in pretty tough condition, and I don't know how

much they can take. I'm concerned about Sandy taking on a rigorous

treatment, because I'm somewhat familiar with her case, and I know

that she is not exceedingly robust at this point. I don't know how to

compare one person's situation to another's, especially since I've

only actually set eyes on a very small number of the people on the

lists.

I do know that I don't like to lose people. I would especially not

like to lose someone as a result of something I suggested that they

do.

In the eleven years I've been working on CFS and have been on the

internet lists, there are four PWCs I used to communicate with who

are no longer with us. One died of a heart attack after a

cardiologist told him his heart was fine, one died of cancer, one

died trying to withdraw from a prescription drug so he could start a

new treatment that he thought was promising, and one died by

suicide.

On the other hand, I don't want anyone with CFS to have to live with

it any longer when we have a treatment that looks like it can be a

cure. I know what you've said about how you feel about the time in

your life that's been lost to CFS, and I certainly don't blame you

for that. It's just a real dilemma, and I guess the best we can do

is to carefully establish what we know and what we don't know, get

the information out there, and give people the opportunity to choose

what they want to do.

Rich

>

> Hi Rich

>

> I don't think I've ever heard you address this, but isn't there a

> risk with the slowly-slowly approach of losing some folks, let's

say

> those with a lower toxin burden, because they don't see results

soon

> enough?

>

> You made the point about the yasko protocol being tailored for

> children. It seems reasonable to think that adults might be able to

> tolerate higher doses of some of the detox supps IF they haven't

> been ill all that long.

>

> I'm not interested in some academic discussion. It's just that

given

> I was sick for 10 years, and was able to tolerate 4 times the

> recommended dosage, I can't help wondering if the bar is too low

for

> some folks.

>

> Having said which, it did put me back in bed and make me a whole

lot

> leess productive for a while, but I wasn't working, so it wasn't a

> big deal.

>

> Also, maybe mine isn't that complicated a case (wishful thinking??)

> cos I haven't had the fevers or the burning skins or some of the

> other unpleasant reactions reported by some others.

>

> I suppose the proof is in the pudding, right? It doesn't seem like

> anyone has quit yet because they weren't seeing results.

>

> Just a thought.

> L.

>

July 2, 2007

Hi Sandy,

I have a file in the files section that gives some suggestions on basic Step 1

things. The usual place to start is with GABA-glutamate balance. Dr. Amy

stresses this area and I think it's especially important for people with CFS,

especially if you have high heart rate as part of your illness, like me. I think

everyone, including those doing the simplified protocol, should at least have

grapeseed extract (not grapefruitseed), pycnogenol, and GABA (and preferably

Nerve Calm RNA) on hand for when detox symptoms hit. These will make the detox

more tolerable and, if you get an even higher pulse from detox like I do, safer.

Also, Rich, your reasoning makes sense, but the general consesus on Dr. Amy's

forum is that detox is even harder on adults than kids, rather than easier. I

think Dr. Amy would say Step 1 is necessary physiologically. A little

psychologically because the kids tend to get improvements on Step 1 which

encourages the parents to continue. But mainly to support the body so it can

handle the harsher detox of Step 2 (and the metals program that the kids go on

to do). I have not seen improvements on Step 1, but have had lots of detox.

Since I am pretty severe, I am hoping that the detox during Step 1 will lessen

the detox when I get all of Step 2 onboard. In terms of when to go from Step 1

to Step 2, it's based a little bit on testing and mostly on whether you have all

the things from Step 1 on board that you need. This can take a long time because

each thing can cause detox. I've been working on what I consider transitional

supplements (increasing B12 and BH4) since January and

will probably start the folapro/intrinsic/nucleotides in another month (but

could keep going for several more months working on strep first).

Trina

Olson <sanols02@...> wrote: