CFS hypothesis development news

[Guest guest]

Hi, all.

Here's a response I just sent to Marcia on the cfsfmresearch list,

in response to her request to be kept informed of what I've been

doing in CFS research lately:

Hi, Marcia.

Thanks for your interest in what I'm up to!

These days I'm doing more thinking and writing than posting. I've

agreed to coauthor a paper on mitochondrial dysfunction in CFS with

Dr. Myhill and am working on that. Don't worry, if I come up with

anything I think is significant, I'll post it here as well.

The glutathione depletion hypothesis does seem to fit quite a few

PWCs, and a few are able to raise glutathione by direct approaches,

using glutathione itself in various forms, or its precursor amino

acids, or both. Many, however, do not seem to be able to do this,

probably because of a vicious circle mechanism involving the earlier

parts of the sulfur metabolism, which is holding down the

glutathione and making CFS a chronic disorder.

The autism--CFS pathogenesis parallel that I started emphasizing

last fall seems to be proving out. Quite a few PWCs who have low

glutathione have ordered the polymorphisms panel recommended by Dr.

Yasko, from http://www.testing4health.com. The early ones seem to

be coming back with the same polymorphisms as are seen in autism.

Some even have the CBS polymorphisms, characteristic of the most

seriously ill kids with autism. So I think that this vicious circle

hypothesis is going to cover a pretty big subset of PWCs. It

remains to be seen if the autism treatments to compensate for the

polymorphisms will break the vicious circle for these PWCs as well,

and allow their glutathione to come back up, as they do in autism.

It's still too early to comment much on that, though early signs are

good in the very few people I know of who are trying this, and

biochemical theory would seem to predict that it will work.

I'm also tracking the results coming back, mostly to PWCs in the

U.K., from the ATP Profile test and the ATP/ADP translocator protein

test offered by BioLab Medical Unit (or Acumen) in the U.K. These

test results are clearly showing mitochondrial dysfunction in PWCs,

and the degree of it appears to correlate with the degree of

disability, according to Dr. Myhill's and Dr. McLaren 's

work.

I'm toying with an " umbrella " hypothesis for CFS and Lyme disease

now that involves mitochondrial dysfunction as the common

denominator for different subsets. Many PWCs do appear to have

glutathione depletion and a vicious circle involving the methylation

cycle or other earlier parts of the sulfur metabolism, as studied by

the autism people, as I've been emphasizing. Others may not have

this vicious circle, but may have ongoing mitochondrial dysfunction

for other reasons. Dr. wrote me that he sees many cases of

mitochondrial dysfunction that do not involve glutathione depletion.

All the cells in the body (except red blood cells, type 2 skeletal

muscle cells and a few other cell types) have mitochondria. Dr.

's test on neutrophils shows that the mitochondria of

neutrophils show dysfunction in CFS. If the neutrophils show this

problem (they have a lifetime of only a few days), then it must be a

problem for other, longer-lived cell types as well, since they will

have a longer time to accumulate toxins.

In many cases in which there is mitochondrial dysfunction but not

glutathione depletion, I think the problem is chemical toxicity.

These people have polymorphisms in their detox system, as shown by

the Genovations Detoxigenomic profile. I think that polymorphisms

in the glutathione transferase enzymes are part of this, allowing

the glutathione level to stay up, but making the glutathione largely

unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are

involved in many cases as well. Then these people were exposed to

significant amounts of any of a variety of chemical toxins,

including pharmaceuticals. Their bodies were not able to shed the

toxins because of their detox system polymorphisms, and the toxins

therefore built up. As the ATP Profile test is showing, a variety

of toxins can block enzymes in the mitochondria, producing

mitochondrial dysfunction. That's what I believe leads to the

symptoms of fatigue and many of the other symptoms of CFS. So again

we have a combination of a genetic predisposition

and " environmental " factors, but in these cases, the genetic

predisposition involves the detox system rather than the methylation

cycle.

Borrelia have been found to deplete cysteine and glutathione, as I

posted last January, and I think that's the tie-in between CFS and

Lyme disease and the reason the symptom sets are so similar between

Lyme disease and CFS caused by other factors. Once you produce

ongoing mitochondrial dysfunction, by whatever mechanism, I think

you are going to have chronic fatigue, chronic pain and the rest of

the symptoms of CFS.

It would be very interesting to see what the immune system

polymorphisms are in people with Lyme disease. This might answer

the question we have been kicking around for years, i.e. whether

some people are particularly susceptible to chronic Lyme disease

because of their genetic makeup. I don't currently know the answer

to this question.

Some people unfortunately were born with significant polymorphisms

in both their detox system and their methylation cycle. This is a

bad combination.

I've been happy to see the funded researchers reporting work on

polymorphisms lately. I hope this continues, and that they look at

the polymorphisms in the detox system and in the methylation cycle,

as well as in other systems involved in the early part of the

pathogenesis of CFS, including the stress response and

neurotransmitter systems (which the CDC has reported on lately), the

antioxidant enzyme system (including the glutathione system), and

the immune system.

The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney has

been emphasizing lately stem directly from mitochondrial

dysfunction, in my opinion. The viral infection in the heart in the

cases studied by Dr. Lerner results from immune suppression, which

is probably a result of glutathione depletion and methylation

cycle/folate metabolism block. Low cardiac output from either of

these causes leads to a lot of other problems, including poor

perfusion of the brain.

I think the above basic framework will explain what's going on in

the bulk of the cases. There are probably some subsets that are

still not explained by the above, however. I guess that's " job

security " for us researhers, not that I need that at this point in

my life!

Treating the people with the detox polymorphisms may be more

difficult than treating the ones with the autism-like polymorphisms

involving the methylation cycle and folate metabolism, etc. I think

it's important first to identify the toxins that are present. Then,

how do you get the toxins out, if you don't have a detox system that

can function properly? I think lowering the input of toxins is

number one, using clean air and water and organic foods, and

avoiding sources of toxins. Then I think building up the normal

detox system as much as possible is next, putting in sulfur-

containing substances as tolerated, starting with sulfate and

taurine if they are low. Then I think that passing substances

through the gut that will bind the specific types of toxins that are

present may help, including activated charcoal, cholestyramine,

bentonite, indigestible fiber, as appropriate to the toxins

present. Then careful use of saunas, making sure to replace

minerals and water. If the problem is metals, perhaps elevated (but

nontoxic) doses of the essential minerals will help to flush them

out. Then careful chelation for heavy metals, if needed, making sure

that the glutathione level is up before doing so. This process

might take quite a while, if the body burdens of

toxins are high.

Rich

[Guest guest]

" rvankonynen " wrote:

> Some people unfortunately were born with significant polymorphisms

> in both their detox system and their methylation cycle. This is a

> bad combination.

Rich, obviously, it is ridiculous to accuse autistic infants of

having their illness result from an inordinate burden of emotional

stress which is not present in undue or sometimes nonexistent

amounts.

If an autistic child has any incapacity to deal with normal levels

of emotional stress, it would be the result of the illness and not

the cause.

Everytime someone reverses the cause-effect relationship and

asserts that the cart is driving the horse, they are missing the

point that just because two factors are associated - one is not

simply free to reverse the order.

A cart can only push the horse if something ELSE is seriously wrong

and the horse loses control.

-

[Guest guest]

What you said below is new and interesting. When you say high doses of

essential minerals will flush metals out, do you mean out of the cells ?

** Ive tried to flush them out via minerals - it didnt work for me!

Regards

CS

[Guest guest]

>

> Hi, all.

>

> These days I'm doing more thinking and writing than posting. I've

> agreed to coauthor a paper on mitochondrial dysfunction in CFS with

> Dr. Myhill and am working on that. Don't worry, if I come up with

> anything I think is significant, I'll post it here as well.

>

> The glutathione depletion hypothesis does seem to fit quite a few

> PWCs, and a few are able to raise glutathione by direct approaches,

> using glutathione itself in various forms, or its precursor amino

> acids, or both. Many, however, do not seem to be able to do this,

> probably because of a vicious circle mechanism involving the

earlier

> parts of the sulfur metabolism, which is holding down the

> glutathione and making CFS a chronic disorder.

>

> The autism--CFS pathogenesis parallel that I started emphasizing

> last fall seems to be proving out. Quite a few PWCs who have low

> glutathione have ordered the polymorphisms panel recommended by Dr.

> Yasko, from http://www.testing4health.com. The early ones seem to

> be coming back with the same polymorphisms as are seen in autism.

> Some even have the CBS polymorphisms, characteristic of the most

> seriously ill kids with autism. So I think that this vicious circle

> hypothesis is going to cover a pretty big subset of PWCs. It

> remains to be seen if the autism treatments to compensate for the

> polymorphisms will break the vicious circle for these PWCs as well,

> and allow their glutathione to come back up, as they do in autism.

> It's still too early to comment much on that, though early signs

are

> good in the very few people I know of who are trying this, and

> biochemical theory would seem to predict that it will work.

>

> I'm also tracking the results coming back, mostly to PWCs in the

> U.K., from the ATP Profile test and the ATP/ADP translocator

protein

> test offered by BioLab Medical Unit (or Acumen) in the U.K. These

> test results are clearly showing mitochondrial dysfunction in PWCs,

> and the degree of it appears to correlate with the degree of

> disability, according to Dr. Myhill's and Dr. McLaren 's

> work.

>

> I'm toying with an " umbrella " hypothesis for CFS and Lyme disease

> now that involves mitochondrial dysfunction as the common

> denominator for different subsets. Many PWCs do appear to have

> glutathione depletion and a vicious circle involving the

methylation

> cycle or other earlier parts of the sulfur metabolism, as studied

by

> the autism people, as I've been emphasizing. Others may not have

> this vicious circle, but may have ongoing mitochondrial dysfunction

> for other reasons. Dr. wrote me that he sees many cases of

> mitochondrial dysfunction that do not involve glutathione

depletion.

>

> All the cells in the body (except red blood cells, type 2 skeletal

> muscle cells and a few other cell types) have mitochondria. Dr.

> 's test on neutrophils shows that the mitochondria of

> neutrophils show dysfunction in CFS. If the neutrophils show this

> problem (they have a lifetime of only a few days), then it must be

a

> problem for other, longer-lived cell types as well, since they will

> have a longer time to accumulate toxins.

>

> In many cases in which there is mitochondrial dysfunction but not

> glutathione depletion, I think the problem is chemical toxicity.

> These people have polymorphisms in their detox system, as shown by

> the Genovations Detoxigenomic profile. I think that polymorphisms

> in the glutathione transferase enzymes are part of this, allowing

> the glutathione level to stay up, but making the glutathione

largely

> unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are

> involved in many cases as well. Then these people were exposed to

> significant amounts of any of a variety of chemical toxins,

> including pharmaceuticals. Their bodies were not able to shed the

> toxins because of their detox system polymorphisms, and the toxins

> therefore built up. As the ATP Profile test is showing, a variety

> of toxins can block enzymes in the mitochondria, producing

> mitochondrial dysfunction. That's what I believe leads to the

> symptoms of fatigue and many of the other symptoms of CFS. So again

> we have a combination of a genetic predisposition

> and " environmental " factors, but in these cases, the genetic

> predisposition involves the detox system rather than the

methylation

> cycle.

>

> Borrelia have been found to deplete cysteine and glutathione, as I

> posted last January, and I think that's the tie-in between CFS and

> Lyme disease and the reason the symptom sets are so similar between

> Lyme disease and CFS caused by other factors. Once you produce

> ongoing mitochondrial dysfunction, by whatever mechanism, I think

> you are going to have chronic fatigue, chronic pain and the rest of

> the symptoms of CFS.

>

> It would be very interesting to see what the immune system

> polymorphisms are in people with Lyme disease. This might answer

> the question we have been kicking around for years, i.e. whether

> some people are particularly susceptible to chronic Lyme disease

> because of their genetic makeup. I don't currently know the answer

> to this question.

>

> Some people unfortunately were born with significant polymorphisms

> in both their detox system and their methylation cycle. This is a

> bad combination.

>

> I've been happy to see the funded researchers reporting work on

> polymorphisms lately. I hope this continues, and that they look at

> the polymorphisms in the detox system and in the methylation cycle,

> as well as in other systems involved in the early part of the

> pathogenesis of CFS, including the stress response and

> neurotransmitter systems (which the CDC has reported on lately),

the

> antioxidant enzyme system (including the glutathione system), and

> the immune system.

>

> The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney

has

> been emphasizing lately stem directly from mitochondrial

> dysfunction, in my opinion. The viral infection in the heart in the

> cases studied by Dr. Lerner results from immune suppression, which

> is probably a result of glutathione depletion and methylation

> cycle/folate metabolism block. Low cardiac output from either of

> these causes leads to a lot of other problems, including poor

> perfusion of the brain.

>

> I think the above basic framework will explain what's going on in

> the bulk of the cases. There are probably some subsets that are

> still not explained by the above, however. I guess that's " job

> security " for us researhers, not that I need that at this point in

> my life!

>

> Treating the people with the detox polymorphisms may be more

> difficult than treating the ones with the autism-like polymorphisms

> involving the methylation cycle and folate metabolism, etc. I think

> it's important first to identify the toxins that are present. Then,

> how do you get the toxins out, if you don't have a detox system

that

> can function properly? I think lowering the input of toxins is

> number one, using clean air and water and organic foods, and

> avoiding sources of toxins. Then I think building up the normal

> detox system as much as possible is next, putting in sulfur-

> containing substances as tolerated, starting with sulfate and

> taurine if they are low. Then I think that passing substances

> through the gut that will bind the specific types of toxins that

are

> present may help, including activated charcoal, cholestyramine,

> bentonite, indigestible fiber, as appropriate to the toxins

> present. Then careful use of saunas, making sure to replace

> minerals and water. If the problem is metals, perhaps elevated (but

> nontoxic) doses of the essential minerals will help to flush them

> out. Then careful chelation for heavy metals, if needed, making

sure

> that the glutathione level is up before doing so. This process

> might take quite a while, if the body burdens of

> toxins are high.

>

> Rich

>

Hi Rich

Thanks for keeping us up-to-date with the good work you are doing.

As my Translactor Study just showed up with a trace of lindane but

high DNA/RNA presumably I won't have the polymorphisms that you

mention? Of course I did have mercury poisoning showing up 4 years

ago but after safely removing all my amalgams and chelation with

alpha lipoic acid it looks like that is no longer a problem for me.

You might be interested to know that I am 2 weeks in to being

treated with various herbs (which I make into a tea and take twice

daily) by a Chinese medical doctor, he also knows about my diagnosis

of borrelia plus this other problem that has shown up. Both he and

Dr think that I have viral issues too and since starting the

herbs I have been suffering with quite a swollen, red sore throat.

It comes and goes but I don't feel ill and nothing seems to be

developing - its been there on and off for around 10 days. My

Chinese doctor was delighted when I told him about this effect

saying that he is trying to get my immune system to start working

better and that the sore throat is a good sign.

Of course only time will tell but keep up with all the good work you

are doing. I am still not sure whether I should be taking

glutathione in some form because I tested normal for rbc glutathione.

BW

Pam

[Guest guest]

Hi Rich,

Thank you for posting this excellent explanation of what most likely

is going on within some of our disabled and dyfunctional bodies

ravaged by this horrible disease that has robbed us of a normal life.

I believe that my case of 18 years of being primarily bedridden,

using a wheelchair, being able to walk only a few feet at a time,

able to leave the house maybe one day a week if I'm lucky, weak,

shaky, exhausted and in constant pain, fits the list of underlying

causes that you discuss below. I wonder at this point if I will ever

improve. I've gotten even weaker in the last two years, even though

I'm doing what I can to help myself.

Like so many here, over the years I've tried many doctors who were

following the latest theories in how to help PWC's, but nothing has

helped. Now we are finally getting to the deeper issues that have

blocked any success for some of us.

The tests that I've taken so far show problems with phase 2 liver

detoxing, very high levels of mercury, viruses, very low blood flow

suggesting heart output difficulties, dysfunction of most organs and

systems, and inability to tolerate glutathione or whey suggesting

methylation problems. And, now, there are a new group of tests that

could be taken but no one knows whether PWC's with these complex

problems can be helped.

And, as you state below - how does one detox mercury without a detox

system that works? That is a question that I asked on this group

months ago. Your suggestions at the end of your letter are helpful

and I will try them.

I'm very glad that you are continuing to study CFIDS and report to

us. Your letters about the research and results help tremendously.

I was going to phone a new CFS doctor today and start another round

of efforts to make some improvements but now I will want to ask first

whether he is working on the problems below that you have discussed.

Or, perhaps I should begin on my own by following your suggestions

about eliminating mercury by building minerals, using a sauna and

detoxing products before trying chelation. You've given more to

consider.

Thank you again,

Olson

" rvankonynen " wrote:

> Here's a response I just sent to Marcia on the cfsfmresearch list,

> in response to her request to be kept informed of what I've been

> doing in CFS research lately:

>

> Hi, Marcia.

>

> Thanks for your interest in what I'm up to!

>

> These days I'm doing more thinking and writing than posting. I've

> agreed to coauthor a paper on mitochondrial dysfunction in CFS with

> Dr. Myhill and am working on that. Don't worry, if I come up with

> anything I think is significant, I'll post it here as well.

>

> The glutathione depletion hypothesis does seem to fit quite a few

> PWCs, and a few are able to raise glutathione by direct approaches,

> using glutathione itself in various forms, or its precursor amino

> acids, or both. Many, however, do not seem to be able to do this,

> probably because of a vicious circle mechanism involving the

earlier

> parts of the sulfur metabolism, which is holding down the

> glutathione and making CFS a chronic disorder.

>

> The autism--CFS pathogenesis parallel that I started emphasizing

> last fall seems to be proving out. Quite a few PWCs who have low

> glutathione have ordered the polymorphisms panel recommended by Dr.

> Yasko, from http://www.testing4health.com. The early ones seem to

> be coming back with the same polymorphisms as are seen in autism.

> Some even have the CBS polymorphisms, characteristic of the most

> seriously ill kids with autism. So I think that this vicious circle

> hypothesis is going to cover a pretty big subset of PWCs. It

> remains to be seen if the autism treatments to compensate for the

> polymorphisms will break the vicious circle for these PWCs as well,

> and allow their glutathione to come back up, as they do in autism.

> It's still too early to comment much on that, though early signs

are

> good in the very few people I know of who are trying this, and

> biochemical theory would seem to predict that it will work.

>

> I'm also tracking the results coming back, mostly to PWCs in the

> U.K., from the ATP Profile test and the ATP/ADP translocator

protein

> test offered by BioLab Medical Unit (or Acumen) in the U.K. These

> test results are clearly showing mitochondrial dysfunction in PWCs,

> and the degree of it appears to correlate with the degree of

> disability, according to Dr. Myhill's and Dr. McLaren 's

> work.

>

> I'm toying with an " umbrella " hypothesis for CFS and Lyme disease

> now that involves mitochondrial dysfunction as the common

> denominator for different subsets. Many PWCs do appear to have

> glutathione depletion and a vicious circle involving the

methylation

> cycle or other earlier parts of the sulfur metabolism, as studied

by

> the autism people, as I've been emphasizing. Others may not have

> this vicious circle, but may have ongoing mitochondrial dysfunction

> for other reasons. Dr. wrote me that he sees many cases of

> mitochondrial dysfunction that do not involve glutathione

depletion.

>

> All the cells in the body (except red blood cells, type 2 skeletal

> muscle cells and a few other cell types) have mitochondria. Dr.

> 's test on neutrophils shows that the mitochondria of

> neutrophils show dysfunction in CFS. If the neutrophils show this

> problem (they have a lifetime of only a few days), then it must be

a

> problem for other, longer-lived cell types as well, since they will

> have a longer time to accumulate toxins.

>

> In many cases in which there is mitochondrial dysfunction but not

> glutathione depletion, I think the problem is chemical toxicity.

> These people have polymorphisms in their detox system, as shown by

> the Genovations Detoxigenomic profile. I think that polymorphisms

> in the glutathione transferase enzymes are part of this, allowing

> the glutathione level to stay up, but making the glutathione

largely

> unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are

> involved in many cases as well. Then these people were exposed to

> significant amounts of any of a variety of chemical toxins,

> including pharmaceuticals. Their bodies were not able to shed the

> toxins because of their detox system polymorphisms, and the toxins

> therefore built up. As the ATP Profile test is showing, a variety

> of toxins can block enzymes in the mitochondria, producing

> mitochondrial dysfunction. That's what I believe leads to the

> symptoms of fatigue and many of the other symptoms of CFS. So again

> we have a combination of a genetic predisposition

> and " environmental " factors, but in these cases, the genetic

> predisposition involves the detox system rather than the

methylation

> cycle.

>

> Borrelia have been found to deplete cysteine and glutathione, as I

> posted last January, and I think that's the tie-in between CFS and

> Lyme disease and the reason the symptom sets are so similar between

> Lyme disease and CFS caused by other factors. Once you produce

> ongoing mitochondrial dysfunction, by whatever mechanism, I think

> you are going to have chronic fatigue, chronic pain and the rest of

> the symptoms of CFS.

>

> It would be very interesting to see what the immune system

> polymorphisms are in people with Lyme disease. This might answer

> the question we have been kicking around for years, i.e. whether

> some people are particularly susceptible to chronic Lyme disease

> because of their genetic makeup. I don't currently know the answer

> to this question.

>

> Some people unfortunately were born with significant polymorphisms

> in both their detox system and their methylation cycle. This is a

> bad combination.

>

> I've been happy to see the funded researchers reporting work on

> polymorphisms lately. I hope this continues, and that they look at

> the polymorphisms in the detox system and in the methylation cycle,

> as well as in other systems involved in the early part of the

> pathogenesis of CFS, including the stress response and

> neurotransmitter systems (which the CDC has reported on lately),

the

> antioxidant enzyme system (including the glutathione system), and

> the immune system.

>

> The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney

has

> been emphasizing lately stem directly from mitochondrial

> dysfunction, in my opinion. The viral infection in the heart in the

> cases studied by Dr. Lerner results from immune suppression, which

> is probably a result of glutathione depletion and methylation

> cycle/folate metabolism block. Low cardiac output from either of

> these causes leads to a lot of other problems, including poor

> perfusion of the brain.

>

> I think the above basic framework will explain what's going on in

> the bulk of the cases. There are probably some subsets that are

> still not explained by the above, however. I guess that's " job

> security " for us researhers, not that I need that at this point in

> my life!

>

> Treating the people with the detox polymorphisms may be more

> difficult than treating the ones with the autism-like polymorphisms

> involving the methylation cycle and folate metabolism, etc. I think

> it's important first to identify the toxins that are present. Then,

> how do you get the toxins out, if you don't have a detox system

that

> can function properly? I think lowering the input of toxins is

> number one, using clean air and water and organic foods, and

> avoiding sources of toxins. Then I think building up the normal

> detox system as much as possible is next, putting in sulfur-

> containing substances as tolerated, starting with sulfate and

> taurine if they are low. Then I think that passing substances

> through the gut that will bind the specific types of toxins that

are

> present may help, including activated charcoal, cholestyramine,

> bentonite, indigestible fiber, as appropriate to the toxins

> present. Then careful use of saunas, making sure to replace

> minerals and water. If the problem is metals, perhaps elevated (but

> nontoxic) doses of the essential minerals will help to flush them

> out. Then careful chelation for heavy metals, if needed, making

sure

> that the glutathione level is up before doing so. This process

> might take quite a while, if the body burdens of

> toxins are high.

>

> Rich

>

[Guest guest]

Rich this is very interesting and a more complete hypothesis that

makes sense.

In terms of testing for detox--is that genova's detoxigomics (which I

can't get unless I go to a new jersey doc...)...? What tests the p450

enzymes--?

Anyway, I think I should add a few thoughts:

1) Chronic lyme is not just borrelia. Burdorfer (borrelia burgdorferi)

discovered not only the spirochete but five other bugs in the tickgut,

and that is being confirmed now by work by Eva Sapi, a biologist, in

southern Connecticut. Therefore, to me, chronic lyme is chronic

tickborne infection, multiple bugs, maybe multiple bites, and yes,

then you get the downstream effects and they are bad.

2) Mitochondrial dysfunction is a big one, and I think its so in my

case, which is why hyperbaric oxygen has been crucial to me, and

helpful to others. I think babesia is a big bad one in this case.

>

> Hi, all.

>

> Here's a response I just sent to Marcia on the cfsfmresearch list,

> in response to her request to be kept informed of what I've been

> doing in CFS research lately:

>

> Hi, Marcia.

>

> Thanks for your interest in what I'm up to!

>

> These days I'm doing more thinking and writing than posting. I've

> agreed to coauthor a paper on mitochondrial dysfunction in CFS with

> Dr. Myhill and am working on that. Don't worry, if I come up with

> anything I think is significant, I'll post it here as well.

>

> The glutathione depletion hypothesis does seem to fit quite a few

> PWCs, and a few are able to raise glutathione by direct approaches,

> using glutathione itself in various forms, or its precursor amino

> acids, or both. Many, however, do not seem to be able to do this,

> probably because of a vicious circle mechanism involving the earlier

> parts of the sulfur metabolism, which is holding down the

> glutathione and making CFS a chronic disorder.

>

> The autism--CFS pathogenesis parallel that I started emphasizing

> last fall seems to be proving out. Quite a few PWCs who have low

> glutathione have ordered the polymorphisms panel recommended by Dr.

> Yasko, from http://www.testing4health.com. The early ones seem to

> be coming back with the same polymorphisms as are seen in autism.

> Some even have the CBS polymorphisms, characteristic of the most

> seriously ill kids with autism. So I think that this vicious circle

> hypothesis is going to cover a pretty big subset of PWCs. It

> remains to be seen if the autism treatments to compensate for the

> polymorphisms will break the vicious circle for these PWCs as well,

> and allow their glutathione to come back up, as they do in autism.

> It's still too early to comment much on that, though early signs are

> good in the very few people I know of who are trying this, and

> biochemical theory would seem to predict that it will work.

>

> I'm also tracking the results coming back, mostly to PWCs in the

> U.K., from the ATP Profile test and the ATP/ADP translocator protein

> test offered by BioLab Medical Unit (or Acumen) in the U.K. These

> test results are clearly showing mitochondrial dysfunction in PWCs,

> and the degree of it appears to correlate with the degree of

> disability, according to Dr. Myhill's and Dr. McLaren 's

> work.

>

> I'm toying with an " umbrella " hypothesis for CFS and Lyme disease

> now that involves mitochondrial dysfunction as the common

> denominator for different subsets. Many PWCs do appear to have

> glutathione depletion and a vicious circle involving the methylation

> cycle or other earlier parts of the sulfur metabolism, as studied by

> the autism people, as I've been emphasizing. Others may not have

> this vicious circle, but may have ongoing mitochondrial dysfunction

> for other reasons. Dr. wrote me that he sees many cases of

> mitochondrial dysfunction that do not involve glutathione depletion.

>

> All the cells in the body (except red blood cells, type 2 skeletal

> muscle cells and a few other cell types) have mitochondria. Dr.

> 's test on neutrophils shows that the mitochondria of

> neutrophils show dysfunction in CFS. If the neutrophils show this

> problem (they have a lifetime of only a few days), then it must be a

> problem for other, longer-lived cell types as well, since they will

> have a longer time to accumulate toxins.

>

> In many cases in which there is mitochondrial dysfunction but not

> glutathione depletion, I think the problem is chemical toxicity.

> These people have polymorphisms in their detox system, as shown by

> the Genovations Detoxigenomic profile. I think that polymorphisms

> in the glutathione transferase enzymes are part of this, allowing

> the glutathione level to stay up, but making the glutathione largely

> unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are

> involved in many cases as well. Then these people were exposed to

> significant amounts of any of a variety of chemical toxins,

> including pharmaceuticals. Their bodies were not able to shed the

> toxins because of their detox system polymorphisms, and the toxins

> therefore built up. As the ATP Profile test is showing, a variety

> of toxins can block enzymes in the mitochondria, producing

> mitochondrial dysfunction. That's what I believe leads to the

> symptoms of fatigue and many of the other symptoms of CFS. So again

> we have a combination of a genetic predisposition

> and " environmental " factors, but in these cases, the genetic

> predisposition involves the detox system rather than the methylation

> cycle.

>

> Borrelia have been found to deplete cysteine and glutathione, as I

> posted last January, and I think that's the tie-in between CFS and

> Lyme disease and the reason the symptom sets are so similar between

> Lyme disease and CFS caused by other factors. Once you produce

> ongoing mitochondrial dysfunction, by whatever mechanism, I think

> you are going to have chronic fatigue, chronic pain and the rest of

> the symptoms of CFS.

>

> It would be very interesting to see what the immune system

> polymorphisms are in people with Lyme disease. This might answer

> the question we have been kicking around for years, i.e. whether

> some people are particularly susceptible to chronic Lyme disease

> because of their genetic makeup. I don't currently know the answer

> to this question.

>

> Some people unfortunately were born with significant polymorphisms

> in both their detox system and their methylation cycle. This is a

> bad combination.

>

> I've been happy to see the funded researchers reporting work on

> polymorphisms lately. I hope this continues, and that they look at

> the polymorphisms in the detox system and in the methylation cycle,

> as well as in other systems involved in the early part of the

> pathogenesis of CFS, including the stress response and

> neurotransmitter systems (which the CDC has reported on lately), the

> antioxidant enzyme system (including the glutathione system), and

> the immune system.

>

> The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney has

> been emphasizing lately stem directly from mitochondrial

> dysfunction, in my opinion. The viral infection in the heart in the

> cases studied by Dr. Lerner results from immune suppression, which

> is probably a result of glutathione depletion and methylation

> cycle/folate metabolism block. Low cardiac output from either of

> these causes leads to a lot of other problems, including poor

> perfusion of the brain.

>

> I think the above basic framework will explain what's going on in

> the bulk of the cases. There are probably some subsets that are

> still not explained by the above, however. I guess that's " job

> security " for us researhers, not that I need that at this point in

> my life!

>

> Treating the people with the detox polymorphisms may be more

> difficult than treating the ones with the autism-like polymorphisms

> involving the methylation cycle and folate metabolism, etc. I think

> it's important first to identify the toxins that are present. Then,

> how do you get the toxins out, if you don't have a detox system that

> can function properly? I think lowering the input of toxins is

> number one, using clean air and water and organic foods, and

> avoiding sources of toxins. Then I think building up the normal

> detox system as much as possible is next, putting in sulfur-

> containing substances as tolerated, starting with sulfate and

> taurine if they are low. Then I think that passing substances

> through the gut that will bind the specific types of toxins that are

> present may help, including activated charcoal, cholestyramine,

> bentonite, indigestible fiber, as appropriate to the toxins

> present. Then careful use of saunas, making sure to replace

> minerals and water. If the problem is metals, perhaps elevated (but

> nontoxic) doses of the essential minerals will help to flush them

> out. Then careful chelation for heavy metals, if needed, making sure

> that the glutathione level is up before doing so. This process

> might take quite a while, if the body burdens of

> toxins are high.

>

> Rich

>

[Guest guest]

Jill, I've been doing the hyperbaric for 4 months now and even tho I still feel

about the same, I've noticed maybe a 5% increase in energy. For me that's

something. From about 15% to 20% is a big change for me.

jill1313 <jenbooks13@...> wrote: Rich this is very interesting

and a more complete hypothesis that

makes sense.

In terms of testing for detox--is that genova's detoxigomics (which I

can't get unless I go to a new jersey doc...)...? What tests the p450

enzymes--?

Anyway, I think I should add a few thoughts:

1) Chronic lyme is not just borrelia. Burdorfer (borrelia burgdorferi)

discovered not only the spirochete but five other bugs in the tickgut,

and that is being confirmed now by work by Eva Sapi, a biologist, in

southern Connecticut. Therefore, to me, chronic lyme is chronic

tickborne infection, multiple bugs, maybe multiple bites, and yes,

then you get the downstream effects and they are bad.

2) Mitochondrial dysfunction is a big one, and I think its so in my

case, which is why hyperbaric oxygen has been crucial to me, and

helpful to others. I think babesia is a big bad one in this case.

>

> Hi, all.

>

> Here's a response I just sent to Marcia on the cfsfmresearch list,

> in response to her request to be kept informed of what I've been

> doing in CFS research lately:

>

> Hi, Marcia.

>

> Thanks for your interest in what I'm up to!

>

> These days I'm doing more thinking and writing than posting. I've

> agreed to coauthor a paper on mitochondrial dysfunction in CFS with

> Dr. Myhill and am working on that. Don't worry, if I come up with

> anything I think is significant, I'll post it here as well.

>

> The glutathione depletion hypothesis does seem to fit quite a few

> PWCs, and a few are able to raise glutathione by direct approaches,

> using glutathione itself in various forms, or its precursor amino

> acids, or both. Many, however, do not seem to be able to do this,

> probably because of a vicious circle mechanism involving the earlier

> parts of the sulfur metabolism, which is holding down the

> glutathione and making CFS a chronic disorder.

>

> The autism--CFS pathogenesis parallel that I started emphasizing

> last fall seems to be proving out. Quite a few PWCs who have low

> glutathione have ordered the polymorphisms panel recommended by Dr.

> Yasko, from http://www.testing4health.com. The early ones seem to

> be coming back with the same polymorphisms as are seen in autism.

> Some even have the CBS polymorphisms, characteristic of the most

> seriously ill kids with autism. So I think that this vicious circle

> hypothesis is going to cover a pretty big subset of PWCs. It

> remains to be seen if the autism treatments to compensate for the

> polymorphisms will break the vicious circle for these PWCs as well,

> and allow their glutathione to come back up, as they do in autism.

> It's still too early to comment much on that, though early signs are

> good in the very few people I know of who are trying this, and

> biochemical theory would seem to predict that it will work.

>

> I'm also tracking the results coming back, mostly to PWCs in the

> U.K., from the ATP Profile test and the ATP/ADP translocator protein

> test offered by BioLab Medical Unit (or Acumen) in the U.K. These

> test results are clearly showing mitochondrial dysfunction in PWCs,

> and the degree of it appears to correlate with the degree of

> disability, according to Dr. Myhill's and Dr. McLaren 's

> work.

>

> I'm toying with an " umbrella " hypothesis for CFS and Lyme disease

> now that involves mitochondrial dysfunction as the common

> denominator for different subsets. Many PWCs do appear to have

> glutathione depletion and a vicious circle involving the methylation

> cycle or other earlier parts of the sulfur metabolism, as studied by

> the autism people, as I've been emphasizing. Others may not have

> this vicious circle, but may have ongoing mitochondrial dysfunction

> for other reasons. Dr. wrote me that he sees many cases of

> mitochondrial dysfunction that do not involve glutathione depletion.

>

> All the cells in the body (except red blood cells, type 2 skeletal

> muscle cells and a few other cell types) have mitochondria. Dr.

> 's test on neutrophils shows that the mitochondria of

> neutrophils show dysfunction in CFS. If the neutrophils show this

> problem (they have a lifetime of only a few days), then it must be a

> problem for other, longer-lived cell types as well, since they will

> have a longer time to accumulate toxins.

>

> In many cases in which there is mitochondrial dysfunction but not

> glutathione depletion, I think the problem is chemical toxicity.

> These people have polymorphisms in their detox system, as shown by

> the Genovations Detoxigenomic profile. I think that polymorphisms

> in the glutathione transferase enzymes are part of this, allowing

> the glutathione level to stay up, but making the glutathione largely

> unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are

> involved in many cases as well. Then these people were exposed to

> significant amounts of any of a variety of chemical toxins,

> including pharmaceuticals. Their bodies were not able to shed the

> toxins because of their detox system polymorphisms, and the toxins

> therefore built up. As the ATP Profile test is showing, a variety

> of toxins can block enzymes in the mitochondria, producing

> mitochondrial dysfunction. That's what I believe leads to the

> symptoms of fatigue and many of the other symptoms of CFS. So again

> we have a combination of a genetic predisposition

> and " environmental " factors, but in these cases, the genetic

> predisposition involves the detox system rather than the methylation

> cycle.

>

> Borrelia have been found to deplete cysteine and glutathione, as I

> posted last January, and I think that's the tie-in between CFS and

> Lyme disease and the reason the symptom sets are so similar between

> Lyme disease and CFS caused by other factors. Once you produce

> ongoing mitochondrial dysfunction, by whatever mechanism, I think

> you are going to have chronic fatigue, chronic pain and the rest of

> the symptoms of CFS.

>

> It would be very interesting to see what the immune system

> polymorphisms are in people with Lyme disease. This might answer

> the question we have been kicking around for years, i.e. whether

> some people are particularly susceptible to chronic Lyme disease

> because of their genetic makeup. I don't currently know the answer

> to this question.

>

> Some people unfortunately were born with significant polymorphisms

> in both their detox system and their methylation cycle. This is a

> bad combination.

>

> I've been happy to see the funded researchers reporting work on

> polymorphisms lately. I hope this continues, and that they look at

> the polymorphisms in the detox system and in the methylation cycle,

> as well as in other systems involved in the early part of the

> pathogenesis of CFS, including the stress response and

> neurotransmitter systems (which the CDC has reported on lately), the

> antioxidant enzyme system (including the glutathione system), and

> the immune system.

>

> The diastolic dysfunction cardiac aspects in CFS that Dr. Cheney has

> been emphasizing lately stem directly from mitochondrial

> dysfunction, in my opinion. The viral infection in the heart in the

> cases studied by Dr. Lerner results from immune suppression, which

> is probably a result of glutathione depletion and methylation

> cycle/folate metabolism block. Low cardiac output from either of

> these causes leads to a lot of other problems, including poor

> perfusion of the brain.

>

> I think the above basic framework will explain what's going on in

> the bulk of the cases. There are probably some subsets that are

> still not explained by the above, however. I guess that's " job

> security " for us researhers, not that I need that at this point in

> my life!

>

> Treating the people with the detox polymorphisms may be more

> difficult than treating the ones with the autism-like polymorphisms

> involving the methylation cycle and folate metabolism, etc. I think

> it's important first to identify the toxins that are present. Then,

> how do you get the toxins out, if you don't have a detox system that

> can function properly? I think lowering the input of toxins is

> number one, using clean air and water and organic foods, and

> avoiding sources of toxins. Then I think building up the normal

> detox system as much as possible is next, putting in sulfur-

> containing substances as tolerated, starting with sulfate and

> taurine if they are low. Then I think that passing substances

> through the gut that will bind the specific types of toxins that are

> present may help, including activated charcoal, cholestyramine,

> bentonite, indigestible fiber, as appropriate to the toxins

> present. Then careful use of saunas, making sure to replace

> minerals and water. If the problem is metals, perhaps elevated (but

> nontoxic) doses of the essential minerals will help to flush them

> out. Then careful chelation for heavy metals, if needed, making sure

> that the glutathione level is up before doing so. This process

> might take quite a while, if the body burdens of

> toxins are high.

>

> Rich

>

[Guest guest]

Rich,

Glad to hear you are still at work on this. You might be interested in the

following study

and see if it clicks with any of the research you are doing:

" _After microwave irradiation, the changes of pathological ultrastructure of rat

cerebral

cortex and hippocampus were observed by electron microscope, and mitochondrial

transcription factor A (mtTFA) mRNA expression level were determined by RT-PCR.

RESULTS: After 3 mW/cm(2) microwave irradiation for 0, 3, 24 h, mitochondrial

ultrastructure and mtTFA mRNA expression level didn't significantly change in

rat cerebral

cortex and hippocampus. After 30 mW/cm(2) microwave irradiation for 0, 3, 24 h,

mitochondrial ultrastructure obviously changed, mtTFA mRNA expression in rat

hippocampus significantly increased by 67.00%, 80.00%, 30.00% respectively, and

in rat

cerebral cortex by 133.00%, 86.00%, 233.00% respectively._ "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

db=pubmed & cmd=Retrieve & dopt=Abstract & list_uids=15130438 & query_hl=3 & itool=pub

med_docsum

regards,

paul

> >

> > Hi, all.

> >

> > Here's a response I just sent to Marcia on the cfsfmresearch list,

> > in response to her request to be kept informed of what I've been

> > doing in CFS research lately:

> >

> > I've agreed to coauthor a paper on mitochondrial dysfunction in CFS with

> > Dr. Myhill and am working on that.

> > I'm toying with an " umbrella " hypothesis for CFS and Lyme disease

> > now that involves mitochondrial dysfunction as the common

> > denominator for different subsets. Many PWCs do appear to have

> > glutathione depletion and a vicious circle involving the methylation

> > cycle or other earlier parts of the sulfur metabolism, as studied by

> > the autism people, as I've been emphasizing. Others may not have

> > this vicious circle, but may have ongoing mitochondrial dysfunction

> > for other reasons. Dr. wrote me that he sees many cases of

> > mitochondrial dysfunction that do not involve glutathione depletion.

> >

> > All the cells in the body (except red blood cells, type 2 skeletal

> > muscle cells and a few other cell types) have mitochondria. Dr.

> > 's test on neutrophils shows that the mitochondria of

> > neutrophils show dysfunction in CFS. If the neutrophils show this

> > problem (they have a lifetime of only a few days), then it must be a

> > problem for other, longer-lived cell types as well, since they will

> > have a longer time to accumulate toxins.

> >

> > In many cases in which there is mitochondrial dysfunction but not

> > glutathione depletion, I think the problem is chemical toxicity.

> > These people have polymorphisms in their detox system, as shown by

> > the Genovations Detoxigenomic profile. I think that polymorphisms

> > in the glutathione transferase enzymes are part of this, allowing

> > the glutathione level to stay up, but making the glutathione largely

> > unuseable. Polymorphisms in Phase I cytochrome P450 enzymes are

> > involved in many cases as well. Then these people were exposed to

> > significant amounts of any of a variety of chemical toxins,

> > including pharmaceuticals. Their bodies were not able to shed the

> > toxins because of their detox system polymorphisms, and the toxins

> > therefore built up. As the ATP Profile test is showing, a variety

> > of toxins can block enzymes in the mitochondria, producing

> > mitochondrial dysfunction. That's what I believe leads to the

> > symptoms of fatigue and many of the other symptoms of CFS. So again

> > we have a combination of a genetic predisposition

> > and " environmental " factors, but in these cases, the genetic

> > predisposition involves the detox system rather than the methylation

> > cycle.

> >

> > Once you produce

> > ongoing mitochondrial dysfunction, by whatever mechanism, I think

> > you are going to have chronic fatigue, chronic pain and the rest of

> > the symptoms of CFS.> >

> > Rich

> >

>

[Guest guest]

Hi, .

I don't think I mentioned emotional stress in connection with

autistic infants. As far as I have been able to find out, the main

demands on glutathione in these children have been due to toxins

such as mercury and to live viruses in vaccines. However, if an

infant is not properly cared for, as in being fed, or being held and

having human contact, or being kept at a comfortable temperature, I

can imagine that it could experience what we could call emotional

stress as well. I recall the stories from the orphanages in Romania

about the babies who were not held by adults, and it apparently did

some emotional damage to them. So I think that's possible in infants

as well as in adults.

In adults who develop CFS, I think there is a wider range of factors

that can place demands on glutathione than there is in the autistic

children. We've been through that many times before, but if you

want to review what I've said about it, I would refer you to my

paper, which gives all the references to the published work on which

I based my discussion of this. The paper can be found at the

following url:

http://www.cfsresearch.org/cfs/research/treatment/15.htm

From the standpoint of the resulting biochemistry, it doesn't matter

what causes the glutathione level to go down. Once it does, it

triggers the vicious circle mechanism involving the genetic

variations in enzymes higher up in the sulfur metabolism, and the

person becomes trapped in a chronic illness. If the person is under

about 3 years of age when this happens, he or she has autism. If he

or she is older, it's CFS. The main difference is that in autism

the brain has not yet fully developed, so there is an additional set

of symptoms associated with autism, which is very debilitating and

characteristic. But beyond these characteristic symptoms of autism,

the rest appears to be pretty much the same between these two

disorders. This is really a pretty remarkable thing, which is not

yet widely known.

Rich

>

> > Some people unfortunately were born with significant

polymorphisms

> > in both their detox system and their methylation cycle. This is a

> > bad combination.

>

>

> Rich, obviously, it is ridiculous to accuse autistic infants of

> having their illness result from an inordinate burden of emotional

> stress which is not present in undue or sometimes nonexistent

> amounts.

>

> If an autistic child has any incapacity to deal with normal

levels

> of emotional stress, it would be the result of the illness and not

> the cause.

>

> Everytime someone reverses the cause-effect relationship and

> asserts that the cart is driving the horse, they are missing the

> point that just because two factors are associated - one is not

> simply free to reverse the order.

>

> A cart can only push the horse if something ELSE is seriously

wrong

> and the horse loses control.

> -

>

[Guest guest]

Hi, Pam.

Given that your glutathione level is normal, I don't think you have

serious polymorphisms associated with the methylation cycle. You

may have some in your detox system, though. That might explain why

the mercury was able to build up in your body. To look at them, you

could get a Genovations Detoxigenomic profile done.

Thanks for the information about your Chinese herbal treatments. I

hope they will be able to jump-start your immune system.

Rich

> Hi Rich

>

> Thanks for keeping us up-to-date with the good work you are

doing.

> As my Translactor Study just showed up with a trace of lindane but

> high DNA/RNA presumably I won't have the polymorphisms that you

> mention? Of course I did have mercury poisoning showing up 4

years

> ago but after safely removing all my amalgams and chelation with

> alpha lipoic acid it looks like that is no longer a problem for me.

>

> You might be interested to know that I am 2 weeks in to being

> treated with various herbs (which I make into a tea and take twice

> daily) by a Chinese medical doctor, he also knows about my

diagnosis

> of borrelia plus this other problem that has shown up. Both he

and

> Dr think that I have viral issues too and since starting

the

> herbs I have been suffering with quite a swollen, red sore

throat.

> It comes and goes but I don't feel ill and nothing seems to be

> developing - its been there on and off for around 10 days. My

> Chinese doctor was delighted when I told him about this effect

> saying that he is trying to get my immune system to start working

> better and that the sore throat is a good sign.

>

> Of course only time will tell but keep up with all the good work

you

> are doing. I am still not sure whether I should be taking

> glutathione in some form because I tested normal for rbc

glutathione.

>

> BW

> Pam

>

[Guest guest]

Hi, Sandy.

It's good to hear from you. I really hope that something will work

to get the toxins out of your body. I think that's your central

issue.

Rich

>

> Hi Rich,

>

> Thank you for posting this excellent explanation of what most

likely

> is going on within some of our disabled and dyfunctional bodies

> ravaged by this horrible disease that has robbed us of a normal

life.

>

> I believe that my case of 18 years of being primarily bedridden,

> using a wheelchair, being able to walk only a few feet at a time,

> able to leave the house maybe one day a week if I'm lucky, weak,

> shaky, exhausted and in constant pain, fits the list of underlying

> causes that you discuss below. I wonder at this point if I will

ever

> improve. I've gotten even weaker in the last two years, even

though

> I'm doing what I can to help myself.

>

> Like so many here, over the years I've tried many doctors who were

> following the latest theories in how to help PWC's, but nothing has

> helped. Now we are finally getting to the deeper issues that have

> blocked any success for some of us.

>

> The tests that I've taken so far show problems with phase 2 liver

> detoxing, very high levels of mercury, viruses, very low blood

flow

> suggesting heart output difficulties, dysfunction of most organs

and

> systems, and inability to tolerate glutathione or whey suggesting

> methylation problems. And, now, there are a new group of tests

that

> could be taken but no one knows whether PWC's with these complex

> problems can be helped.

>

> And, as you state below - how does one detox mercury without a

detox

> system that works? That is a question that I asked on this group

> months ago. Your suggestions at the end of your letter are

helpful

> and I will try them.

>

> I'm very glad that you are continuing to study CFIDS and report to

> us. Your letters about the research and results help tremendously.

> I was going to phone a new CFS doctor today and start another

round

> of efforts to make some improvements but now I will want to ask

first

> whether he is working on the problems below that you have

discussed.

> Or, perhaps I should begin on my own by following your suggestions

> about eliminating mercury by building minerals, using a sauna and

> detoxing products before trying chelation. You've given more to

> consider.

>

> Thank you again,

> Olson

[Guest guest]

Hi, Jill.

Yes, the cytochrome P450 enzyme polymorphisms are on the Genovations

Detoxigenomic profile. I'm sorry that you have to go out of state

for it.

Thanks for sharing your thoughts.

Rich

>

> Rich this is very interesting and a more complete hypothesis that

> makes sense.

>

> In terms of testing for detox--is that genova's detoxigomics

(which I

> can't get unless I go to a new jersey doc...)...? What tests the

p450

> enzymes--?

>

> Anyway, I think I should add a few thoughts:

>

> 1) Chronic lyme is not just borrelia. Burdorfer (borrelia

burgdorferi)

> discovered not only the spirochete but five other bugs in the

tickgut,

> and that is being confirmed now by work by Eva Sapi, a biologist,

in

> southern Connecticut. Therefore, to me, chronic lyme is chronic

> tickborne infection, multiple bugs, maybe multiple bites, and yes,

> then you get the downstream effects and they are bad.

>

> 2) Mitochondrial dysfunction is a big one, and I think its so in my

> case, which is why hyperbaric oxygen has been crucial to me, and

> helpful to others. I think babesia is a big bad one in this case.

>

>

[Guest guest]

>

> Hi, Pam.

>

> Given that your glutathione level is normal, I don't think you have

> serious polymorphisms associated with the methylation cycle. You

> may have some in your detox system, though. That might explain why

> the mercury was able to build up in your body. > Rich

>

>

>

Let's not forget that " RNase dysfunction impairs Mercury clearance "

which was presented at a past AACFS conference, (It's on Cort's

website). How many people know this? very few.

Al

[Guest guest]

" rvankonynen " <richvank@...> wrote:

>

> Hi, .

However, if an infant is not properly cared for, as in being fed, or

being held and having human contact, or being kept at a comfortable

temperature, I can imagine that it could experience what we could call

emotional stress as well. I recall the stories from the orphanages

in Romania about the babies who were not held by adults, and it

apparently did some emotional damage to them. So I think that's

possible in infants as well as in adults.

>

When you take a healthy - happy baby in for the MMR and come home

with an autistic child - emotional factors played no part in the onset

and cannot be implicated.

Why do you always have to throw in a little jab about stress playing

a part even though it is only an associative variable that many of us

didnt' have?

Don't you know what we've been through with this?

It's like having the ER doc write in your chart that " Bad driving is a

factor " and you say " But not in my case. I was sitting at a stoplight

and got blindsided by a drunk driver " .

And the ER doc says " You cannot ignore that bad driving is a factor

in most accidents, so it goes into the official report as a possible

cause "

If lack of stress doesn't ward off the illness, then the illness just

plain doesn't care if the victim is stressed or not.

Might as well say that being left-handed is a factor except for those

people who are right-handed, in which case, being right-handed is the

more important factor.

-

[Guest guest]

Cort,

I went to school in a Redwood Forest too - UCSC. I finally graduated

in 1988. I don't think they had cell phone towers on campus back

then.

paul

[Guest guest]

Just to be sure I understand correctly, Rich: If I get the RBC test for

glutathione and there is no deficiency, I skip the genetic testing for the SNPS

related to autism and instead test for detox polymorphisms. And that would be

done by Genovations?

Adrienne

[Guest guest]

On Jul 11, 2006, at 12:04 AM, Doyon wrote:

> Cort,

>

> I went to school in a Redwood Forest too - UCSC. I finally graduated

> in 1988. I don't think they had cell phone towers on campus back

> then.

My husband's a Slug, too. BA in Computer Science, 1983. And, yes,

he's wified the house from attic to basement. An ubergeek can do no

less.

Sara

[Guest guest]

Hi, .

Sorry, I'm not trying to irritate you. I'm just trying to keep my

mind open to possibilities. In both CFS and autism, the population of

patients is heterogeneous. Not all have the same experiences or the

same causes for their glutathione depletion, if it is indeed

depleted.

As I've said in past, I'm willing to believe that emotional stress was

not a factor in your onset of CFS. You have reported lots of evidence

for mold sensitivity in your case. However, I also have files full of

reports from PWCs who meet the Fukuda et al. definition for CFS and

who have written me that emotional stress was a very big factor in

their CFS onset. There have also been many reports about that on this

list from people here. I understand that you don't believe these folks

have the same disorder that you do, but under the current case

definition, they are PWCs nevertheless, and I am trying to help all of

them and you as well, so I need to keep my mind open to the bigger

picture.

, we have interacted on various lists for a long time, and though

we don't always agree on everything, I consider myself to be your

friend. I hope that at some point you will be able to put some of the

unpleasant things that have happened to you in the past behind you,

count the blessings that you do have today, broaden your perspective

to include others with different problems, and look toward the

future. I don't say this to minimize what you've been through, which

I agree was pretty abysmal. I say it because I think it would be in

your best interest. Believe it or not, the person who suffers most

over these past wrongs that you continue to review is you, not those

you hold responsible for them. If you could bring yourself to forgive

and get on with your life, I think you would personally benefit a

great deal, both in terms of personal happiness and your long-term

health as well. And you might even be able to win people more easily

to your point of view about the uniqueness of the original disorder at

Incline Village and how it differs from what is included in the

current case definition.

Rich

> Why do you always have to throw in a little jab about stress

playing

> a part even though it is only an associative variable that many of

us

> didnt' have?

> Don't you know what we've been through with this?

[Guest guest]

Hey guys, I'm in Santa Cruz, too. For 35 years now. Are you still here?

Mercuria <mercuria@...> wrote:

On Jul 11, 2006, at 12:04 AM, Doyon wrote:

> Cort,

>

> I went to school in a Redwood Forest too - UCSC. I finally graduated

> in 1988. I don't think they had cell phone towers on campus back

> then.

My husband's a Slug, too. BA in Computer Science, 1983. And, yes,

he's wified the house from attic to basement. An ubergeek can do no

less.

Sara

[Guest guest]

Hi, Adrienne.

Yes, that's what I would suggest. If your glutathione is normal, I

would not suspect that you have serious polymorphism issues involving

your methylation cycle.

If you turn out to have detox polymorphisms, and if you have other

reasons to believe that chemical toxins are a problem for you, such as

known exposures just prior to the onset of your illness, or multiple

chemical sensitivities, or past sensitivities to pharmaceuticals, then

you might benefit from trying to figure out what toxins you have in

your body. Depending on what they are, you might be able to use

specific methods to pull them out. For heavy metals, I recommend the

DMSA-provoked 6-hour urine collection offered by Doctors Data Labs

(but make sure your glutathione level is up before you run this

test). For organic toxins, I suggest the tests offered by

http://www.nmslab.com in Pennsylvania. You can talk to them about

which tests would be most appropriate, depending on your known or

suspected exposures. If it's feasible for you to FedEx blood samples

to BioLab Medical Unit in London, then the Translocator Protein test

would be helpful in finding out what toxins are blocking your

mitochondria. I think it would be best to run the ATP Profile test,

also, to measure different aspects of your mitochondrial function.

The samples must get to Biolab within 48 hours, and they must not be

allowed to freeze on the way over, as in the cargo hold of an airliner

at altitude. You can contact Biolab and FedEx for more details.

Rich

>

> Just to be sure I understand correctly, Rich: If I get the RBC test

for glutathione and there is no deficiency, I skip the genetic testing

for the SNPS related to autism and instead test for detox

polymorphisms. And that would be done by Genovations?

> Adrienne

>

>

[Guest guest]

On Jul 11, 2006, at 8:23 AM, Edy Rayfield wrote:

> Hey guys, I'm in Santa Cruz, too. For 35 years now. Are you

> still here?

>

> Mercuria <mercuria@...> wrote:

> On Jul 11, 2006, at 12:04 AM, Doyon wrote:

>

>> Cort,

>>

>> I went to school in a Redwood Forest too - UCSC. I finally graduated

>> in 1988. I don't think they had cell phone towers on campus back

>> then.

>

> My husband's a Slug, too. BA in Computer Science, 1983. And, yes,

> he's wified the house from attic to basement. An ubergeek can do no

> less.

We settled in Half Moon Bay for 18 years, but moved to Vancouver, BC

two and a half years ago.

Sara

[Guest guest]

Interesting! A lot of people from SC - the liberal capital of the US

- on this list it seems. I left in 88 for Japan and have been here

for over 18 years.

paul

>

> > Cort,

> >

> > I went to school in a Redwood Forest too - UCSC. I finally

graduated

> > in 1988. I don't think they had cell phone towers on campus back

> > then.

>

> My husband's a Slug, too. BA in Computer Science, 1983. And, yes,

> he's wified the house from attic to basement. An ubergeek can do no

> less.

>

> Sara

>

>

>

>

>

>

[Guest guest]

Sara,

My son lives in Vancouver when he is not in China or NYC. There is an

excellent doctor there should you need one. Email me off list if you want

the name or if I haven't already sent you it. I have such a good memory!!!

a Carnes

Pj7@...

[Guest guest]

Rich,

I should mind my own business but..

I don't think meant his comment in any way as personal. He is angry at

any mention of stress as a cause, and so am I. Yes, stress may be a

trigger. A trigger is very different from a cause. If you shoot a gun the

trigger is only the thing that sets the bullet going. The bullet is the

cause. I can accept genetic issues, mold issues, toxin issues and you know I

accept certain types of infection, but stress? Nope, it's no more than the

trigger.

a

[Guest guest]

On Jul 11, 2006, at 10:08 AM, a Carnes wrote:

> Sara,

>

> My son lives in Vancouver when he is not in China or NYC. There is an

> excellent doctor there should you need one. Email me off list if

> you want

> the name or if I haven't already sent you it. I have such a good

> memory!!!

You have, thanks. He's a naturopath....I think I've still got it on

file.

Sara