fibromyalgia

[Guest guest]

Everyone who I know who has Fibromyalgia has CFS so this may be worth

reading.

-Lana

---------- Forwarded message ----------

Date: Jul 18, 2007 7:10 PM

Subject: [sulfurstories] Update on MCB treatment for CFS--WITH ADVERSE

EFFECTS

sulfurstories

July 18, 2007

Simplified Treatment Approach Based on the Glutathione Depletion-

Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue

Syndrome (CFS)

by

Rich Van Konynenburg, Ph.D.

I first want to note that I am a researcher, not a clinician, and

that what I have to say here should not be interpreted as medical

advice.

In January, 2007, in an effort to shed light on the validity of the

Glutathione Depletion-Methylation Cycle Block (GD-MCB) Pathogenesis

Hypothesis for Chronic Fatigue Syndrome (CFS), and to help clinicians

to develop a practical treatment based on this Hypothesis, I

suggested a simplified treatment approach. This approach is designed

to lift the hypothesized methylation cycle block and to restore

glutathione levels to normal. It was derived from a complete

treatment program developed by Dr. Amy Yasko, N.D., Ph.D., for autism

and other disorders that are also thought to involve methylation

cycle block and glutathione depletion.

A fairly large number of people with chronic fatigue syndrome (PWCs)

have since voluntarily chosen to try this treatment approach, many

with the help of their physicians. It now appears to be working well

for many of these PWCs, but some serious adverse effects have also

been reported in a few cases. Controlled testing of this treatment

approach has not yet been done, but early results from these

volunteers suggest that this would not only be worthwhile in view of

indications of the efficacy of this approach, but also necessary to

ensure its safe application.

I would like to describe the history of the Glutathione Depletion-

Methylation Cycle Block (GD-MCB) Hypothesis and the simplified

treatment approach that is based upon it, and point out what I think

the early treatment results mean with regard to this Hypothesis. But

before I do so, I want to emphasize the following cautionary

statements:

While in the past I have stated that PWCs should cooperate with their

physicians in trying the simplified treatment approach, as a result

of experiences with this treatment approach that have been reported

to me recently, I have concluded that it must be entered upon only

under the supervision of a licensed physician, to make sure that if

there are individual issues that arise, they can be taken care of

immediately. The treatment approach itself consists only of

nonprescription nutritional supplements that are normally found

naturally in the body and are necessary for normal biochemistry to

take place. It would thus appear to be fairly benign on its surface.

However, it is now clear to me that restarting the methylation cycle

after it has been blocked for extended periods, particularly in those

PWCs whose general health has become quite debilitated, or those who

have certain respiratory, cardiac, endocrine or autoimmune

conditions, can present some serious challenges and hazards. I

suspect that there is still much more to be learned about possible

adverse effects of applying this treatment approach among the very

heterogeneous CFS population, and this work properly lies in the

province of clinicians. I believe that I have now carried this work

as far as a nonclinical researcher can appropriately carry it. I am

hopeful that clinicians will apply and test this treatment approach

in order to learn how it may be safely, effectively, and practically

utilized to treat PWCs, and it appears that this is now beginning to

occur.

As some readers will probably be aware, I presented a poster paper

describing the above-mentioned Hypothesis at the most recent IACFS

conference in Florida last January. It can be found on the internet

on Cort 's website:

http://phoenix-cfs.org/GSH%20Methylation%20Van%20Konynenburg.htm

This Hypothesis has not yet been published in the peer-reviewed

literature. My emphasis up to now has instead been upon addressing

questions that remained to be answered before this Hypothesis could

be considered for clinical testing and application in the form of a

practical treatment approach.

The history of the development of this Hypothesis is as follows:

In 1999, I first learned from two public talks presented by Dr.

Cheney that many PWCs are depleted in glutathione, and that taking

steps to build glutathione can be helpful to many. Dr.

Enlander has since reported to me that he began injecting glutathione

as part of a complex into CFS patients as early as 1991. I also

found that Dr. Salvato had reported in early 1998 on her use

of intramuscular injection of glutathione in 276 patients. Over the

years, quite a few CFS doctors have incorporated means of building

glutathione into their protocols, either by administration of

glutathione itself by various routes, or by oral supplementation with

glutathione precursors, such as whey protein products.

What is glutathione, and what does it do?

Glutathione is technically a tripeptide, which can be thought of as

being like a very small protein, as it is made up of only three amino

acids (while proteins are made up of many more). It is present

naturally in every cell of the body, as well as in the blood, the

bile and the fluid lining the lungs. The liver is normally the main

producer of glutathione in the body. Glutathione plays many

important roles in the body. Probably the best known are its

protection against oxidative stress produced by oxidizing free

radicals and other reactive oxygen species, its support for the

immune system, and its role in removing a variety of toxic substances

from the body.

When glutathione becomes somewhat depleted, as it does in many cases

of CFS, its normal functions are simply not performed well. Many of

the symptoms of CFS as well as observed abnormal results on

specialized lab tests can be traced directly to glutathione

depletion, as I described in an earlier AACFS poster paper in 2004.

It can be found on Cort 's website:

http://phoenix-cfs.org/GluAACFS04.htm

As I noted in that paper, while direct efforts to build glutathione

are helpful to many PWCs, for most they provide only temporary

improvement and do not result in permanent restoration of glutathione

levels or a cure for CFS. I suspected that a vicious circle

mechanism must be involved in holding down the glutathione levels in

CFS.

Then, later in 2004, an important paper was published involving

research into autism by S. Jill and her coworkers: " Metabolic

biomarkers of increased oxidative stress and impaired methylation

capacity in children with autism "

(Am J Clin Nutr. 2004 Dec;80(6):1611-7). The study they reported

showed that glutathione is depleted also in autism, and that this

depletion is associated with a block in what is known as the

methylation cycle (or methionine cycle).

Before discussing this further, I want to address the question " What

is the methylation cycle, and what does it do? "

The methylation cycle is part of the basic biochemistry of the body,

and is believed to operate in every cell. This cycle includes the

amino acid methionine as well as S-adenosylmethionine (SAMe, used as

a supplement by some PWCs), S-adenosylhomocysteine, and

homocysteine. Some homocysteine is converted back to methionine,

thus completing the cycle. There are two parallel pathways from

homocysteine to methionine. They are the methionine synthase pathway

and the BHMT (betaine homocysteine methionine transferase) pathway.

The methylation cycle is directly linked to the folate metabolism and

to the transsulfuration pathway.

The methylation cycle performs many vital roles in the body. First,

by means of SAMe, it supplies methyl (CH3) groups to many different

biochemical reactions. Some of them produce substances such as

coenzyme Q-10 and carnitine, which have been found to be depleted in

many PWCs. Methylation also plays an important role in " silencing "

certain DNA to prevent its expression, and in producing myelin for

the brain and nervous system.

The methylation cycle also controls the body's response to oxidative

stress, by governing how much homocysteine is diverted into the

transsulfuration pathway, which contributes to determining the rate

of synthesis of glutathione.

A third important role of the methylation cycle is to control the

overall sulfur metabolism of the body. In this role, besides

controlling glutathione synthesis, it exerts control over synthesis

of several other important substances, including cysteine, taurine

and sulfate.

When the methylation cycle is blocked at the enzyme methionine

synthase, these important roles are not carried out properly. In

addition, a methylation cycle block necessarily causes a block in the

folate metabolism, to which it is intimately linked, and this

interferes with synthesis of new DNA and RNA, among other important

effects.

Two of the most significant effects of a methylation cycle block are

that neither the immune system nor the detox system can operate

properly. If the methylation cycle remains blocked for an extended

period of time, infections and toxins can be expected to build up in

the body.

After I read the paper by S. Jill and her coworkers (referred

to above), I began to suspect that the genetic factors and

biochemical mechanism they had found in autism are the same or

similar to those important in CFS. A block earlier than glutathione

in the sulfur metabolism, at the methylation cycle, could explain the

persistent glutathione depletion in CFS. It began to dawn on me that

other aspects of CFS that did not appear to be explained by

glutathione depletion per se could be explained by a methylation

cycle block.

It was difficult for me initially to believe that there was a

connection between autism and CFS, given the profoundly different

symptoms and different affected population groups (primarily boys in

autism, compared to primarily adult women in CFS). However, I knew

of others who had publicly suggested such a connection in the past

(Dr. Goldberg in the U.S. and Prof. Malcolm Hooper in the

UK), and this new study seemed to provide more detailed evidence of

this connection at the genetic and biochemical levels.

I began to look into autism in more detail, and I attended the Long

Beach conference of the Defeat Autism Now! (DAN!) project in October

of 2005. The more I learned about autism, the more I became

convinced that are dealing in CFS with many of the same issues at the

genetic and biochemical levels. The book by Drs. Jon Pangborn and

Sidney Baker entitled " Autism: Effective Biomedical Treatments "

(Autism Research Institute, September, 2005) provides excellent

explanations of the biochemistry of autism, and the parallels with

CFS can be seen there.

I want to emphasize that I did not develop the Glutathione Depletion--

Methylation Cycle Block Hypothesis out of thin air. The autism

researchers had already provided a convincing basis for this model in

that disorder. S. Jill and coworkers did much of the clinical

work that underlies it. Deth and his coworkers had worked

out much of the theory of the methylation cycle block and had applied

it to autism. Professors and Deth had been presenting talks on

their work at autism conferences. The physicians in the DAN! project

(as well as Dr. Amy Yasko, though I had not yet learned of her work

when I began to understand the importance of the methylation cycle

block) had already been treating autism cases by measures intended to

lift the methylation cycle block. What I did was to apply the

results of their work to CFS, and to present a detailed biochemical

and symptomological case to support the proposition that this model

also applies to CFS.

What is the essence of the Glutathione Depletion-Methylation Cycle

Block Hypothesis for the Pathogenesis of CFS?

This hypothesis proposes first that in order to develop CFS, a person

must have inherited genetic variations (also called SNPs or single-

nucleotide polymorphisms) in a combination of certain genes that code

for enzymes and other proteins associated with the methylation cycle

and related pathways.

The hypothesis further proposes that the person must also be

subjected to some combination of a variety of long-term physical,

chemical, biological or psychological/emotional stressors that lowers

glutathione levels to the point that a block occurs in the enzyme

methionine synthase in the methylation cycle, in response to the

oxidative stress that is inherent in glutathione depletion. The

formation of this block is aided by the presence of the inherited

genetic polymorphisms. This lowering of glutathione levels also

simultaneously removes the normal protection that glutathione

provides to vitamin B12 and allows the accumulation in the body of

toxins that can interfere with the utilization of vitamin B12,

mercury perhaps being the dominant one.

This hypothesis further proposes that the result of the above is that

the level of methylcobalamin is held too low to support the

methionine synthase reaction, and it therefore becomes chronically

blocked. This produces a vicious circle mechanism that causes CFS to

become a chronic condition.

Finally, this hypothesis proposes that all the features of CFS can be

shown to originate from this root cause. While I have not yet

demonstrated this for every feature of CFS, the first paper cited in

this article explains a large number of them in detail on this basis.

Previous treatments for CFS have dealt with downstream issues in the

pathogenesis, but they have not completely addressed this root cause,

and, in my opinion, that is we have not seen many completely cured

CFS cases up to now. Note that when I refer to cured cases, I do not

mean that the genetic predisposition has been removed, but that that

the PWCs are healthy from the symptomatic point of view.

As I became more convinced of the parallels between autism and CFS, I

began to point out this connection to some clinicians directly and to

others via the internet, as well as to PWCs in internet groups, and I

began encouraging them to consider the treatments that were being

used by the Defeat Autism Now! project to treat autism, focusing on

unblocking the methylation cycle. A small number of PWCs tried this

approach, and while some initial benefits were observed from this, it

did not seem to be an effective approach over the long term, at least

in the way I was suggesting that it be applied.

I then learned of the work of Dr. Amy Yasko, N.D., Ph.D. in autism.

I studied her materials, including the book written by her and Dr.

Garry Gordon entitled " The Puzzle of Autism, " joined her discussion

forum at

http://www.ch3nutrigenomics.com

and eventually attended her teaching seminar in Boston in October of

2006. After considering all of this, I concluded that it was likely

that her treatment approach could help many PWCs, so I decided to

emphasize it. An important feature of her work is her effort to tie

the genetics of individuals to the biochemistry and to do tailored

treatment based on genetics, again directed toward correcting the

methylation cycle block, but also incorporating support for a variety

of body systems and organs. I also learned that Dr. Yasko had had

some experience in using her approach in cases of CFS as well as a

variety of adult neurological disorders, but that she was currently

focusing primarily on autism.

I wrote a short article pointing out the connection I was seeing

between autism and CFS and pointing to these treatments, and it was

published in the October 2006 issue of the Townsend Letter. This can

be found at the following url:

http://findarticles.com/p/articles/mi_m0ISW/is_279/ai_n16865315

Quite a few PWCs acted on my suggestion to try Dr. Yasko's full

treatment approach, and they are currently continuing with it. Many

of them participate in the cfs_yasko internet group, a group

that was specifically formed for them, which can be found at

CFS_Yasko/

Most of them are currently in the first step of this treatment

approach, and they are generally reporting that this treatment is

producing considerable detoxification of their bodies, as monitored

by urine testing. The full Yasko treatment approach involves

detailed genetic and biochemical testing, and is rather expensive and

complex. While some PWCs are in a position to pursue this treatment

and appear to be doing so successfully, it seemed to me that there

are many others for whom this approach is beyond reach, either for

economic or cognitive reasons or both. Practicing physicians have

generally also found this treatment to be somewhat cumbersome to

incorporate into their practices because of the complexity and the

considerable time and expense required to tailor the treatment to

each individual patient.

In response to these issues and to requests from clinicians for a

written description of practical CFS treatment based on this

hypothesis, I wrote an article that outlined the full Yasko treatment

approach, but also described a simplified treatment approach that

incorporated nutritional supplements that form the core of Dr.

Yasko's so-called " step 2. " This is the step in her treatment

program that involves actually lifting the block in the methylation

cycle. This article can be found on Cort 's website:

http://phoenix-cfs.org/GSH%20Methylation%20Treatment%20Konynenburg.htm

When I proposed this approach, I did not know what fraction of the

PWC population would be able to tolerate the resulting die-off of

pathogens and mobilization of toxins that would result from the

consequent ramp-up of the immune system and the detox system after

they had been dysfunctional for such long times during the long

illness duration of many PWCs. As can be seen in the above-cited

article, I was not very optimistic. However, I still thought it was

worth a try, since the existing full Yasko approach did not seem to

have the characteristics necessary for wide use in the CFS community,

and it appeared that lifting the methylation cycle block was the key

to recovery for many PWCs. With the help of a woman (name omitted to

protect her privacy) who is currently receiving the full Yasko

treatment herself, I selected a basic set of seven supplements from

Dr. Yasko's step 2, as discussed in the above-mentioned article.

After this article was presented on the internet, another woman (name

omitted to protect privacy) decided to try this simplified treatment

approach. As a result of benefits that occurred almost immediately,

she reported her experience on the ImmuneSupport.com CFS discussion

board. In response to her reports, others began to try this

approach. This began in February of 2007, and the number of people

on this treatment has continued to grow, the longest duration of

treatment now being somewhat more than four months, ranging down to

some as short as a few days.

As experience has been gained, I have shortened the initial list of

seven supplements in the suggested simplified treatment approach to

five, as described below. The cost of the basic five supplements is

somewhat more that two dollars per day.

After suggesting this treatment approach, I initially attempted to

maintain a list of those who were trying it, based on reports I

received from physicians and individual PWCs. However, when the

number of people I was aware of grew past 60, I no longer felt that I

could maintain a complete count. Many have been reporting their

progress periodically to the ImmuneSupport board, and a new

group also has been established recently for PWCs trying this

approach, at the following url:

simplified_protocol_support/

I will now describe the current version of the simplified treatment

approach based on the Glutathione Depletion--Methylation Cycle Block

Hypothesis.

All the supplements used in this approach can be obtained from the

http://www.holisticheal.com site, or all but the Complete Vitamin and

Neurological Health Formula can be obtained elsewhere. Please note

that I have no financial interest in any of the supplements that I

have suggested in the simplified treatment approach.

As I mentioned above, 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 it is wise to start with

smaller dosages than those given below, and it is also wise to start

with one supplement at a time and work up to the total of five

supplements, to test carefully for adverse effects. It will take

somewhat longer to reach the suggested combination and dosages by

this route, but early experience has shown that this is prudent.

As I also mentioned above, this treatment approach should be

attempted only under the supervision of a licensed physician, so that

any individual issues that arise can be properly dealt with. It's

important to " listen to one's body " when doing this treatment. If the

detox becomes too intense to tolerate, or if significant adverse

effects appear, as described below, the supplements should be

discontinued, and the situation should be evaluated immediately by a

licensed physician. This treatment will produce die-off and detox

symptoms as the immune system and detox system come back to normal

operation and begin ridding the body of accumulated infections and

toxins. This appears to be inevitable, if health is to be restored.

It may require considerable judgment and clinical experience on the

part of the physician to distinguish between inevitable die-off and

detox symptoms and possible adverse effects.

While die-off and detox symptoms are occurring, there will also

likely be improvement in CFS symptoms over time. The intensity of the

expected die-off and detox symptoms can be decreased by lowering the

dosages of the supplements. These symptoms probably result from the

body's limited rates of excretion of toxins. If toxins are mobilized

more rapidly than they can be excreted, their levels will rise in the

blood, and it is likely that this will produce more severe die-off

and detox symptoms. By lowering the dosages, and thus slowing the

rate of mobilization of toxins, their levels in the blood can be

lowered, thus ameliorating the symptoms.

The temptation to try to get better faster by increasing the dosages

suggested by Dr. Yasko must be resisted. In particular, the suggested

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

should not be exceeded. 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 improvements in energy level and cognition occur, it is tempting

for PWCs to overdo activities, which, early in the treatment, can

still result in " crashing. " It is wise to resist this temptation as

well, because complete recovery will not occur overnight with this

treatment approach.

I am not aware of negative interactions between the five basic

supplements and prescription medications used by physicians in

treating CFS. However, this treatment approach should not be

attempted without considering together with a licensed physician

possible interactions between the supplements included in it and any

prescription medications that are being taken. This is particularly

important if addition of SAMe to the basic five supplements is

contemplated.

When this treatment approach is used together with prescription

medications, a licensed physician must be consulted before

discontinuing any prescription medications. Some of them can cause

very serious withdrawal symptoms if stopped too abruptly.

If this treatment approach is begun by a PWC who is taking a thyroid

hormone supplement for a hypothyroid condition, the PWC and the

supervising physician should be alert to the possibility that

HYPERthyroid symptoms, such as palpitations and sweats, can occur,

even very soon after starting this treatment. The physician should

be consulted about possibly adjusting or eliminating the thyroid

hormone supplementation if this occurs.

Here are the five supplements, as found in Dr. Yasko's book " The

Puzzle of Autism, " (p. 49) and as described in detail on her website

http://www.holisticheal.com :

1. One-quarter tablet (200 micrograms) Folapro (Folapro is 5-methyl

tetrahydrofolate, an active form of folate, which is sold by

Metagenics with a license from Merck, which holds the patent on

synthesis).

2. One-quarter tablet Intrinsic B12/folate (This includes 200

micrograms of folate as a combination of folic acid, 5-methyl

tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as

folinic acid or leucovorin (another active form of folate), 125

micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of

calcium, 17.25 milligrams of phosphorus, and 5 milligrams of

intrinsic factor)

3. Up to two tablets (It's best to start with one-quarter tablet and

work up as tolerated) Complete Vitamin and Ultra-Antioxidant

Neurological Health Formula from Holistic Health Consultants (This is

a multivitamin, multimineral supplement with some additional

ingredients. It does not contain iron or copper, and it has a high

ratio of magnesium to calcium. It contains antioxidants, some

trimethylglycine, some nucleotides, and several supplements to

support the sulfur metabolism.)

4. One softgel capsule Phosphatidyl Serine Complex (This includes

the phospholipids and some fatty acids)

5. One sublingual lozenge Perque B12 (2,000 micrograms

hydroxocobalamin with some mannitol, sucanat, magnesium and cherry

extract)

The first two supplement tablets are difficult to break into

quarters. One of the PWCs who is following the simplified treatment

approach has suggested that an alternative approach is to crush them

into powders, mix the powders together, and divide the powders into

quarters using a knife or single-edged razor blade 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 this is not an issue, they can be taken at

any time of the day, with or without food.

Since some questions have been asked about which components of this

treatment approach are essential, and since some PWCs appear to be

taking augmented versions of the simplified GD-MCB treatment approach

that I wrote about in my January treatment paper (cited above), I

want to offer some comments to help PWCs and their physicians to

evaluate which supplements to include in treatment.

FolaPro--This is included because many PWCs have a genetic

polymorphism in their MTHFR (methylene tetrahydrofolate reductase)

enzyme that affects the production of 5-methyltetrahydrofolate (which

is identical to the product FolaPro). This form of folate is the one

used by the methionine synthase enzyme, which is the enzyme that

appears to be blocked in many cases of CFS. If PWCs were to have

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

would know for sure whether they needed this supplement, but in the

simplified approach I suggest simply giving it to everyone. This

should not present problems, because the total folate dose, including

the FolaPro and the folates in the Intrinsi/B12/folate supplement,

amounts to 400 micrograms per day, which is within the upper limit

for folate supplementation for adults and for children four years of

age and older, as recommended by the Institute for Medicine of the

U.S. National Academy of Sciences.

Intrinsi/B12/folate--This supplement contains three forms of folate--

FolaPro, folinic acid (identical to the drug leucovorin) and folic

acid (the most common commercial folate supplement). It also has some

cyanocobalamin (the most common commercial vitamin B12 supplement)

and some intrinsic factor (identical to that normally secreted by the

stomach to enable vitamin B12 absorption by the gut) as well as some

other things. The folinic acid 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,

until this is corrected. This enzyme normally converts 5-

methytetrahydrofolate to tetrahydrofolate, which is needed in other

reactions. This supplement also has some intrinsic factor and some

cyano-B12 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. Vitamin B12 is

needed by the enzyme 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 Neurological Health Formula--

This is Dr. Amy Yasko's basic high-potency general nutritional

supplement. This is a general foundation for the biochemistry of the

body. I suspect that this supplement is better for PWCs trying the

simplified treatment approach than other high-potency general

nutritional 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 in

magnesium and low in calcium, and has no iron or copper. As far as I

know, there are no other supplements with all these characteristics.

I therefore believe that this supplement is important for use in the

treatment approach. The TMG helps to stimulate the BHMT pathway in

the methylation cycle, and that helps to build SAMe, which is needed

by the parallel methionine synthase pathway. The nucleotides will

help to supply RNA and DNA for making new cells until the folate

cycle is operating normally again.

Phosphatidylserine complex—This contains various phosphatidyls and

fatty acids, which will help to 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 stimulate the BHMT

pathway.

Perque B12--This is sublingual hydroxocobalamin. The dosage is

fairly large, in order to overcome the blocking of B12 by toxins such

as mercury in CFS. As I mentioned above, B12 is needed to stimulate

the activity of methionine synthase. Methylcobalamin is actually the

form needed, but some people cannot tolerate supplementing 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 is known to be able to methylate mercury.

(Note that methylcobalamin is the substance used by bacteria to

perform methylation on environmental mercury, and the resulting

methylmercury is concentrated in the food chain up to the large

predatory fish and enters the human diet.) Methylmercury can readily

cross the blood-brain barrier. Methylation of mercury by

methylcobalamin has been reported in the literature to occur within

the bodies of guinea pigs in laboratory experiments. Perque B12 is

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

people.

There are also two other supplements that were included 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 PWCs can't tolerate

much of this, and some need more. If PWCs can't tolerate this, they

should leave it out, because stimulating the BHMT pathway, using TMG

and choline in the other supplements, will probably make enough SAMe

for them naturally. For people who can tolerate SAMe, a dosage of

400 mg per day is suggested.

Methylation Support RNA 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 if people can afford it. Dr. Amy

Yasko has since advised me that if a PWC desires to take only one of

her RNA Products, she would suggest choosing either the Health

Foundation RNA Formula or the Stress Foundation RNA Formula, rather

than the Methylation Support RNA Formula, as being most helpful to

take the edge off the detox.

The above suggested list of supplements may not be optimum, and

future clinical studies may produce an improved protocol. I think

that the forms of folate and B12 are probably essential, because they

target what I believe is the root issue in the abnormal biochemistry

of CFS. I think the Complete supplement is important to support the

general biochemistry and to correct deficiencies that might be

present in essential nutrients, as well as to support the methylation

cycle and the rest of the sulfur metabolism. I think that some way

of stimulating the BHMT pathway is important, also, to bring up SAMe,

and the phosphatidyl serine complex provides this, as does the TMG

included in the Complete supplement.

With regard to possible interactions between the supplements in the

simplified treatment approach and other supplements that PWCs may be

taking, I am aware of two: (1) 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, as mentioned above, 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. (2) I would also

not recommend taking additional trimethylglycine (TMG, also called

betaine) or additional forms of choline, such as phosphatidylcholine

or lecithin, since that may stimulate the BHMT pathway too much at

the expense of the methionine synthase pathway. The betaine-HCl used

to augment stomach acid is something that may have to be omitted

while doing this treatment, too, since it will contribute to this

stimulation.

Adding glutathione support will help some people, as will adding

molybdenum.

As more things are added, though, one is moving toward the full Yasko

approach, which is more complicated and expensive. If this is done,

I recommend that it be done with the guidance of Dr. Yasko and under

the supervision of a personal physician. The simplified treatment

approach appears to work well by itself for many PWCs, but others may

find that the die-off and detox (or even adverse effects) from this

approach used by itself are too severe. In those cases, the PWCs

could consult " The Puzzle of Autism, " sold on Amazon.com<http://amazon.com/>,

to consider

together with their doctors what else discussed there might help

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

captures one's attention for that reason, but it still either does

not accomplish all that is desired, or it is not tolerated, then

perhaps the next step would be to consider the full Yasko treatment.

At least then there would be stronger motivation to look into it.

Otherwise, it can appear very daunting to many PWCs.

The reported responses to this treatment approach have mainly

involved a combination of two categories of effects: (1)

improvements in some of the common CFS symptoms (some of them quite

rapid and profound), and (2) intensification or initial appearance of

a variety of symptoms that appear to result from increased

detoxification and immune system attack on infections. The former

are most welcome, and they are what continue to motivate the people

on this treatment, in the face of the detox and die-off symptoms,

which are unpleasant but appear to be inevitable, given the large

body burdens of toxins and infections that many PWCs have accumulated

during their illness, lacking adequate detox capability and cell-

mediated immune response during that time.

In addition to these main responses, a few PWCs have reported adverse

effects, some of them quite serious. These are discussed below. A

few of those who have started the treatment have stopped it for

various reasons, including adverse effects. Some have taken breaks

from the treatment and have then returned to it or are planning to do

so.

While this informal testing of the simplified treatment approach

currently is not being carried out in a controlled fashion, and while

not all the PWCs trying it are using the complete suggested

complement of supplements, it is nevertheless possible to state that

the treatment appears to be working for quite a few PWCs, though not

all.

The following symptoms of CFS have been reported to have been

corrected by various PWCs on this treatment. Note that these are

gathered from reports from many PWCs, so that not all have been

reported by a single person.

1. Improvement in sleep (though a few have reported increased

difficulty in sleeping initially).

2. Ending of the need for and intolerance of continued thyroid

hormone supplementation.

3. Termination of excessive urination and night-time urination.

4. Restoration of normal body temperature from lower values.

5. Restoration of normal blood pressure from lower values.

6. Initiation of attack by immune system on longstanding infections.

7. Increased energy and ability to carry on higher levels of

activity without post-exertional fatigue or malaise. Termination

of " crashing. "

8. Lifting of brain fog, increase in cognitive ability, return of

memory.

9. Relief from hypoglycemia symptoms

10. Improvement in alcohol tolerance

11. Decrease in pain (though some have experienced increases in pain

temporarily, as well as increased headaches, presumably as a result

of detoxing).

12. Notice of and remarking by friends and therapists on improvements

in the PWC's condition.

13. Necessity to adjust relationship with spouse, because not as much

caregiving is needed. Need to work out more balanced

responsibilities in relationship in view of improved health and

improved desire and ability to be assertive.

14. Return of ability to read and retain what has been read.

15. Return of ability to take a shower standing up.

16. Return of ability to sit up for long times.

17. Return of ability to drive for long distances.

18. Improved tolerance for heat.

18. Feeling unusually calm.

19. Feeling " more normal and part of the world. "

20. Ability to stop steroid hormone support without experiencing

problems from doing it.

21. Lowered sensation of being under stress.

22. Loss of excess weight.

The following reported symptoms, also gathered from various PWCs

trying this simplified treatment approach, are those that I suspect

result from die-off and detox:

1. Headaches, " heavy head, " " heavy-feeling headaches "

2. Alternated periods of mental " fuzziness " and greater mental

clarity

3. Feeling " muggy-headed " or " blah " or sick in the morning

4. Transient malaise, flu-like symptoms

5. Transiently increased fatigue, waxing and waning fatigue, feeling

more tired and sluggish, weakness

6. Dizziness

7. Irritability

8. Sensation of " brain firing: bing, bong, bing, bong, " " brain

moving very fast "

9. Depression, feeling overwhelmed, strong emotions

10. Greater need for " healing naps. "

11. Swollen or painful lymph nodes

12. Mild fevers

13. Runny nose, low grade " sniffles, " sneezing, coughing

14. Sore throat

15. Rashes

16. Itching

17. Increased perspiration, unusual smelling perspiration

18. " Metallic " taste in mouth

19. Transient nausea, " sick to stomach "

20. Abdominal cramping/pain

21. Increased bowel movements

22. Diarrhea, loose stools, urgency

23. Unusual color of stools, e.g. green

24. Temporarily increased urination

25. Transiently increased thirst

26. Clear urine

27. Unusual smelling urine

28. Transient increased muscle pain

Finally, the responses reported below are more serious, and I would

classify them as adverse effects of the treatment. This list

includes all the adverse effects of which I am aware at the time of

writing this article, but I suspect that as more PWCs try this

treatment with the assistance of their physicians, this list will

grow. I am describing these as they have been reported on the

ImmuneSupport CFS discussion board by the PWCs who experienced them.

Though this information may be incomplete, and cause—effect

relationships are difficult to determine exactly from the available

information, I'm hopeful that it will be helpful to clinicians and

other PWCs:

1. One person had had a history of severe pesticide exposure and

also autonomous multi-nodular goiter, which she described as

follows: " Gradually the right lobe grew to over 4 cm x 4cm, and

had to have right lobe out. . . This same surgeon made the decision

to leave the left lobe in, as I had always had trouble with thyroid

med back then too. So, they restarted my Synthroid and I stayed on

that for [a] few more years. I ALWAYS had shortness of breath and

became VERY tachycardic upon ANY activity. . . " This person started

the simplified treatment approach on March 21, 2007 (actually using

higher dosages than suggested for FolaPro and Intrinsi/B12/folate).

On May 19, she went to an emergency room with tachycardia, chest

pain, trouble breathing, trouble sleeping, elevated blood pressure

and fever of 100.7 F. She was admitted to the hospital and released

the next day. No evidence was found for heart attack. This person

later reported the following: " I followed up with my PCP and had CT

scan of neck and chest and my goiter is causing tracheal compression,

again, and breathing is VERY hard. . . My area hospitals can't do

this surgery because my goiter grows substernal, deep in my chest. "

This person has expressed a desire to continue the simplified

treatment approach, but is currently exploring the possibility of

first having additional surgery on the multinodular goiter.

2. A second person had a history of lung problems due to both carbon

monoxide exposure and exposure to molds, as well as heart-related

symptoms. She started part of the simplified treatment approach on

May 27, 2007. After having been nearly homebound for ten years, she

was able to begin riding a bicycle. However, in early July, 2007,

she went to an emergency room twice with severe breathing problems

(shortness of breath), a fever of 99.8 to 100.1 F. that eventually

lasted for sixteen days, and severe chest and left arm pain. No

evidence was found for heart attack. She was diagnosed with an

enlarged left atrium and diastolic dysfunction. She has currently

discontinued the simplified treatment approach and is under the care

of cardiologists.

3. A third person had a history of autoimmune disease, including

Sjogren's syndrome. After her fourth dosage of combined FolaPro and

Intrinsi/B12/folate, she experienced " a moderately severe autoimmune

flare, with numerous joint and soft tissue issues, fatigue, pain,

etc. " She also experienced a severe flare of Sjogren's syndrome,

with " very dry mouth, dry eyes, and severe eye pain. " Six days after

discontinuing the supplements, she had a thorough ophthalmology

workup and was diagnosed with autoimmune scleritis. She has been

given topical steroids and has reported that her eyes are greatly

improved.

4. At least two persons experienced a temporary termination of

peristalsis of the gut and consequent constipation after beginning

the simplified treatment approach. In these two cases, induction of

diarrhea cleared material from the gut, but did not restore the

peristalsis. In both cases, peristalsis restarted twelve days after

terminating the folate-containing supplements. One of these persons

had a history of treatment with psychotropic drugs, including

Klonopin. About 18 hours after starting to get relief from the

constipation, she became very sick, with " vomiting, vise-like

headache, and shaking. " She had many bowel movements over a ten-hour

period, and then began to feel better. The other had a history of

autoimmune diseases, including Sjogren's syndrome and Autoimmune

Ovaritis, as well as diastolic dysfunction.

There are many questions remaining to be answered about this

treatment approach, including the following:

1. For which PWCs would this be an appropriate treatment approach?

2. For what fraction of the entire PWC population will this treatment

approach be beneficial?

3. How can PWCs who are likely to experience adverse effects from

this treatment approach be identified beforehand, so that these

effects can be avoided?

4. Are there PWCs who are too debilitated to be able to tolerate the

detoxing and die-off processes that result from this treatment

approach, and if so, will the full Yasko treatment approach be

suitable for them?

5. Will the simplified treatment approach actually lead to continuing

improvements over longer times for those who find it beneficial, all

the way to cured cases?

6. Will the simplified treatment approach be effective in cases

of " pure fibromyalgia " as it appears to be in many cases of CFS?

7. How can this treatment approach be further improved?

And many more.

However, the results to date seem encouraging. I suspect that many

PWCs can be helped by this treatment approach or something similar to

it. I also believe that the appearance of improvement in such a wide

range of CFS symptoms when this treatment approach is used provides

evidence that a block in the methylation cycle does in fact lie at

the root of the biochemical and physiological derangements found in

many PWCs, or very near to it. The wide range of symptoms that

appear to be associated with die-off and detox appear to give

evidence that this treatment is in fact stimulating more normal

operation of the immune and detox systems.

I want to reiterate what I wrote near the beginning of this article:

This treatment approach must be entered upon only under the

supervision of a licensed physician, to make sure that if there are

individual issues that arise, they can be taken care of immediately.

The treatment approach itself consists only of nonprescription

supplements that are normally found naturally in the body and are

necessary for normal biochemistry to take place. It would thus

appear to be fairly benign on its surface. However, it must be

pointed out that restarting the methylation cycle after it has been

blocked for extended periods, particularly in those PWCs whose

general health has become quite debilitated, or those who have

certain respiratory, cardiac, endocrine or autoimmune conditions, can

present some serious challenges. I believe that there is still much

more to be learned about the possible hazards of applying this

treatment approach to the very heterogeneous CFS population, and this

work properly lies in the province of clinicians. I am not a

licensed physician, but a researcher. I believe that I have carried

this work as far as a researcher can appropriately carry it. I am

hopeful that clinicians will further test this treatment approach in

order to learn how it may be safely, effectively, and practically

utilized to treat PWCs, and it appears that this is now beginning to

occur.

I also hope that physicians or their patients who decide to try this

treatment approach will let me know how it works for them, though I

may not be able to answer all the emails I receive, as their volume

is growing.

Rich Van Konynenburg, Ph.D.

Independent Researcher and Consultant

richvank@... <richvank%40aol.com>

[Guest guest]

I have fibromyalgia. I recommend he get the book Fatigued to Fantastic by Dr.

Teitelbaum. He also has a website at www.endfatigue.com (I think, it might be a

..net or .org). There are a lot of supplements listed in the book and the

newsletter from his website has recently been talking about the role of yeast

overgrowth in FMS, so he may want to start reading up on that right away.

Good luck,

fibromyalgia

I just made a new friend who has severely debilitating fibromyalgia.

Anyone have any experience with this and knows what supplements a

person needs to take. So far, I've heard that hypothyroid may be a

major factor. Of course, I'll be educating him thoroughly on WAP

foods. I feel so much anger about this --- it's so unnecessary that

anyone has to be cut down in the prime of their lives this way, all

because of the crap that's passed off as food in our country and the

ignorant medical establishment. Okay, just had to vent!

Any help will be ever so greatly appreciated. I did read the articles

on the WAP site but would like to hear from someone with personal

experience who has had success in healing.

TIA!

Laree

Messages in this topic ( 1 ) Reply (via web post) | Start a new topic

Messages | Database | Polls | Members

Change settings via the Web ( ID required)

Change settings via email: Switch delivery to Daily Digest | Switch format to

Traditional

Visit Your Group | Terms of Use | Unsubscribe

Recent Activity

•

  14

New Members

Visit Your Group

Meditation and

Lovingkindness

A Group

to share and learn.

Health

Heartburn or Worse

What symptoms

are most serious?

New business?

Get new customers.

List your web site

in Search.

..

[Guest guest]

Lyme disease causes fibromyalgia. I didn't get that per se, tho had

lots of the symptoms before I knew that's what fibro. was, and was

pretty much cured by the salt/c protocol plus probiotics plus

changing to the WAP diet. For more information on the lyme/fibro.

connection see www.canlyme.com

--- In , " Laree " <lareekline@...>

wrote:

>

> I just made a new friend who has severely debilitating

fibromyalgia.

> Anyone have any experience with this and knows what supplements a

> person needs to take. So far, I've heard that hypothyroid may be a

> major factor. Of course, I'll be educating him thoroughly on WAP

> foods. I feel so much anger about this --- it's so unnecessary

that

> anyone has to be cut down in the prime of their lives this way, all

> because of the crap that's passed off as food in our country and

the

> ignorant medical establishment. Okay, just had to vent!

>

> Any help will be ever so greatly appreciated. I did read the

articles

> on the WAP site but would like to hear from someone with personal

> experience who has had success in healing.

>

> TIA!

>

> Laree

>

[Guest guest]

--- Laree <lareekline@...> wrote:

> I just made a new friend who has severely debilitating fibromyalgia.

> Anyone have any experience with this and knows what supplements a

> person needs to take.

Laree,

Here's another point of view about CFS, which may be closely related

to firbromyalgia:

http://blog.plantpoisonsandrottenstuff.info/2008/01/31/the-genetics-of-chronic-f\

atigue-syndrome/

[Guest guest]

This site is written by a fibro sufferer: http://ctds.info/ and is

quite extensive. Click the site map to lead you to the fibro info. She

lumps it in with muscoskeletal and orthopedic conditions related to

connective tissue disorders, and recommends magnesium and bone broth,

lays out a diet for many different such diseases which is very WAPish.

Seems to be one of those diseases where genetics, and diet, and impaired

digestion, and history of infection can all play a part.

I read some of Yasko's work when researching chelation for us, and it did

seem that she had some things right, but not necessarily the whole

picture (which is obviously immense).

Desh

____________________________________________________________

Looking for insurance? Click to compare and save big.

http://thirdpartyoffers.juno.com/TGL2141/fc/Ioyw6i3m275atpXyx1tMLkzFjhRMY6CNOFC9\

e01Oy8QoXG2VjQEfbg/

[Guest guest]

good info! thanks, Desh!

Re: fibromyalgia

Posted by: " De Bell-Frantz " deshabell@... bllfrntz

Mon Oct 27, 2008 8:39 am (PDT)

This site is written by a fibro sufferer: http://ctds.info/ and isquite

extensive. Click the site map to lead you to the fibro info. She lumps it in

with muscoskeletal and orthopedic conditions related to connective tissue

disorders, and recommends magnesium and bone broth, lays out a diet for many

different such diseases which is very WAPish. Seems to be one of those diseases

where genetics, and diet, and impaired digestion, and history of infection can

all play a part. I read some of Yasko's work when researching chelation for us,

and it did seem that she had some things right, but not necessarily the whole

picture (which is obviously immense). Desh

[Guest guest]

Tell them to go to www.drrind.com

Adrenals and thyroid are usually

intertwined and co-problematic.

>

> I just made a new friend who has severely debilitating fibromyalgia.

> Anyone have any experience with this and knows what supplements a

> person needs to take. So far, I've heard that hypothyroid may be a

> major factor. Of course, I'll be educating him thoroughly on WAP

> foods. I feel so much anger about this --- it's so unnecessary that

> anyone has to be cut down in the prime of their lives this way, all

> because of the crap that's passed off as food in our country and the

> ignorant medical establishment. Okay, just had to vent!

>

> Any help will be ever so greatly appreciated. I did read the articles

> on the WAP site but would like to hear from someone with personal

> experience who has had success in healing.

>

> TIA!

>

> Laree

>

[Guest guest]

yeah, the thyroid and adrenals will be messed up by various deficiencies,

whether they are dietary (mg or iodine) or resulting from

undermethylation (sp?). but imo adrenal and thyroid deficiencies can't

be isolated from all of the fluoride and caffeine we consume, or from

electricity allowing us to easily exhaust our adrenals. . . .

d

____________________________________________________________

Are you safe? Click for quotes on a home security system.

http://thirdpartyoffers.juno.com/TGL2141/fc/Ioyw6i3ni3cvThX5Cmt2trv25A3afzlTygI3\

aeStlVfGGFtMzitQwu/