Re: Dr Cheney's keynote presentation at the 2007 IACFS Conference

January 14, 2007

,

So you think the heart wall will grow back together, much like a

dissected aortic aneurism. The trouble with this thought to me is

that hernias do not grow back together. Hernias are holes in muscles.

Holes in aortas do heal sometimes. I personally do not recall hearing

of a muscle healing. I could be wrong.

I gather you, , are taking some of Yasko's many treatments.

Which ones did she select for you?

I am also extremely curious to know what infections you have ever

been tested for and what were positive? I know Yasko suggests some

Lyme patients be treated for infection with antibiotics and samento.

Knowing that I have been treated for ten years and still test

positive with borrelia antigen showing up I am extremely doubtful

that any Yasko treatment will control borreliosis. It would be a

wonder if one could control the genetic issues that keep one unable

to control borrelia.

You know, the scientists know what is needed to control HIV. But with

cfs we don't even know all the infections we have, let alone what

genetic framework we need to control all of them - and most of us are

infected with SEVERAL, not just HIV.

Also, I have taken ImmunoPro for years. It certainly helps but does

not cure. I keep asking Rich if you cannot stop the chronic infection

then how will you heal the body? I don't disagree that some of us

genetically may be unable to control borrelia or mycoplasma or

babesia or ehrlichia, but I don't see Yasko is anywhere close to

fixing us.

Please tell me I am wrong.

a Carnes

>

> Hi, all.

>

> I just talked to my healthy friend, Potter, who attended

> Thursday nights 2007 IACFS conference banquet on my behalf(nice to

> have friends living near the vacinity of important conferences like

> this to get the early scoop!). Anyway, he actually got the keynote

> presention at this banquet featuring Dr Cheney, M.D., Ph.D.,

> video taped for me(I haven't reviewed it yet), but was able to

> communicate fairly effectively the gist of what happened in this

> presentation.

>

> This communication allows me to offer you my impression of what the

> hole in the heart issue(called a PFO) is all about in CFS and how to

> heal or totally eliminate its possible negative impact, something I

> think many of you might appreciate. Of course it should be noted

that

> the physician's and researcher's section of the 2007 IACFS

conference

> is still proceding up through Sunday and my complete review of Dr

> Cheney's presentation may yield more insight, but that said, follows

> is what I'm gathering cuts to the chase on the state of the art in

CFS.

>

> One, Dr Cheney has further deepened his understanding about the

> details of the mechanisms following the acquired diastolic heart

> dysfunction that happens in many PWCs, with the finding that

possibly

> all PWCs have a PFO(hole in the heart like that found in roughly

> 20-30% of the normal population). And this finding of PFOs in PWCs

> Dr Cheney believes, probably accurately so from my layman's point of

> view, worsens or increases in size as result of the underlying

> pathology of CFS and not the other way around.

>

> Two, Dr Cheney still has not yet solved in his own mind the cause of

> the energy deficit within the cells of PWCs hearts that leads to CFS

> diastolic heart dysfunction and the noted downstream

> PFO size expansion. Apparently this remaining gap in his knowledge

> left several attendees, including fellow CFS researcher, Rich Van

> Konynenburg, Ph.D., and others, in a state of befuddlement following

> his presentation, as the solution to this heart cell energy deficit

in

> CFS seems rather apparent to them at this point.

>

> As many of you know, Rich stands clear that it is the glutathione

> depletion-methylation block issue in PWCs that is the cause of their

> heart cell energy deficit, their diastolic heart dysfunction and all

> other known CFS related symptoms they may have. FWIW and in my own

> experience given some good quantifiable improvements in my own case

> from doing treatments consistent with this hypothesis, I think Rich

> has nailed the pathogenesis or root cause of CFS.

>

> More details need to be learned and further duplication of findings

> needs to be done for everything from CFS pathogenesis to end-stage

> pathophysiology, diastolic cardiomyopathy being an example of this,

in

> the research community. Nevertheless, it appears this so far

> unshakeable hypothesis of cause by Rich is the CFS ringer!

>

> This naturally suggests treatment paths, several that have been

> discussed on this list and others, with the Yasko treatment approach

> being one of the lastest and possibly most comprehensive plan

> available to date. I think following this approach or other

treatment

> paths consistent with Rich's glutathione depletion-methylation block

> hypothesis will eliminate the CFS heart cell energy deficit, the

> diastolic heart dysfunction that follows and in result reduce to

> benign size if not complete closure the PFOs currently being found

in

> PWCs.

>

> This is the state of the art in CFS.

>

January 14, 2007

Hi, a.

" pjeanneus " <pj7@...> wrote:

>

> ,

> So you think the heart wall will grow back together, much like a

> dissected aortic aneurism. The trouble with this thought to me is

> that hernias do not grow back together. Hernias are holes in muscles.

> Holes in aortas do heal sometimes. I personally do not recall hearing

> of a muscle healing. I could be wrong.

***I think restoring cellular energy through effectively treating the

glutathione depletion-methylation blocks will eliminate the pressure

caused by the diastolic cardiomyopathy in PWCs, which is forcing

increased PFO size and the shunting of blood deleteriously from one

side to the other.

***I'm not sure if the specific tissue with the PFO is muscle tissue

( I suspect not), but either way I think the problem with the shunting

will be eliminated or reduced to a benign state as a result of

treating the precipitating issue.

>

> I gather you, , are taking some of Yasko's many treatments.

> Which ones did she select for you?

***I'm not on the Yasko protocol as of yet, so I've had no

consultation from her. I've only experimented with a few narrowly

focused suggestions from her overall comprehensive model at this

point, with some surprising benefits, but I haven't got to the major

parts of her program that may accelerate my progress at this point(I

sense stage III may fit my case along with some dietary adjustments

suggested for further balancing GABA/glutatmate microglial activation

and inflammation).

>

> I am also extremely curious to know what infections you have ever

> been tested for and what were positive?

***Lyme, ebv, c. neumoniae, staph a., m. fermentans, and it's likely

there may be dozens if not hundreds of infections and many metals,

which these infections appear to use to protect themselves, that are

riddling mine and other PWCs brains, other tissues and organs.

I know Yasko suggests some Lyme patients be treated for infection with

antibiotics and samento.

> Knowing that I have been treated for ten years and still test

> positive with borrelia antigen showing up I am extremely doubtful

> that any Yasko treatment will control borreliosis. It would be a

> wonder if one could control the genetic issues that keep one unable

> to control borrelia.

***I think more specifically it is mastering the genetics in each

individual case as they relate to methylation that will set us free

from the grip of the infections and toxins in us.

>

> You know, the scientists know what is needed to control HIV. But with

> cfs we don't even know all the infections we have, let alone what

> genetic framework we need to control all of them - and most of us are

> infected with SEVERAL, not just HIV.

***I know I and I don't think many are arguing with you on this point,

just perhaps disagreeing with the traditional model you may be

adhering to too tightly, which says one must know what each and every

individual infection is and specifically attack it according to its

unique vulnerabilities, rather than pull the rug out from underneath

all of the them by optimizing methylation according to how that needs

to be done in each individual PWC.

>

> Also, I have taken ImmunoPro for years. It certainly helps but does

> not cure. I keep asking Rich if you cannot stop the chronic infection

> then how will you heal the body?

***He's answered you several times on this I've seen. And as far as

ImmunePro goes it may be helping more than you think, particularly if

you haven't gotten quantitative testing to show how these improvements

in status.

***More to the point, the gap for you in restoring your core health

and well-being may be in successfully addressing more of the specific

methylation blocks you have that ImmunePro alone can't do.

I don't disagree that some of us

> genetically may be unable to control borrelia or mycoplasma or

> babesia or ehrlichia, but I don't see Yasko is anywhere close to

> fixing us.

>

> Please tell me I am wrong.

***Okay, you're wrong! Obviously the Yasko model needs to be born

out as far as CFS and Lyme goes, and there is no way to avoid the gap

in proof that only time and focused treatment can show, but I do think

you've not done your homework enough on her approach to draw this

conclusion you seem to have drawn.

***Her book, The Puzzle of Autism(2006 version), through amazon.com is

probably the best single thing to read in order to effectively get

what she's talking about. From there and from perhaps checking in on

PWCs already doing her program, I think anyone can then make their

best judgement as to whether this path is suited for their individual

case or not.

>

> a Carnes

***

January 14, 2007

If I may toss in a $0.02

worth here.

The PFO is not completely closed in 20% of the general population. Yet

these people are mostly asymptomatic. They might have a fainting spell

or weakness when straining in a particular way, as when lifting a heavy

object or straining to poop ... however, for the most part it's not a

practical issue and they are functional.

We've been told (and now we are into theoretical territory I'm sure)

that the PFO can be further / more frequently opened due to (1) the

additional atrial pressure that Cheney reports he has found in CFS

patients and (2) by any condition that promotes circulatory spasms,

such as infection of the vagus nerve, parsympathetic nervous system

derangement, and aggravating conditions such as hiatal hernia. If all

this is true, then correction of any of the above conditions may

plausibly improve or correct a symptomatic PFO. Lastly, it's plausible

that the unoxygenated / unfiltered blood that can leak through a PFO is

more of a problem for a CFS patient, who is likely to have cerebral

hypoperfusion already, and for an MCS patient who is just much more

sensitive to anything that disturbs the stability of the internal

terrain. So the PFO plausibly is a problem that feeds on itself in

such persons in ways it would not in a relatively healthy individual.

Put another way, a relatively healthy person has reserves and

resilience that carries the day for them.

To fit with the discussion prevalent on this list, one could also

theorize that PFOs can be exacerbated by inflammation, particularly if

the heart and/or its supporting structures and nerves are directly

infected. That is strictly my theory, and totally speculative, but I

think those on this list would agree it's plausible and if so, then

directly addressing infection may be helpful and arguably more

important than focusing on the PFO, which is not directly treatable in

any meaningful way in any case, with our current medical technology.

Whether you chose to buy into Yasko's approach or stick with a more

traditional antibiotic assault on chronic infection, an important

missing link is how to deal with herxing, especially in the presence of

impaired detox pathways. In both camps, all they really have to offer

is a couple of supplements that might help some, and other than that,

just tough it out. That's grand if you can do so. However, some

patients are so badly impaired in this area that you are just asking

them to go through a living hell which they can't endure, and may

permanently damage them, if not kill them. Even in the best case

scenario you are talking months or years of "feeling worse so you can

feel better". This requires tremendous faith on the part of the

patient, who in turn generally gets little real support and is pretty

much on their own. In other words, in the real world it ain't gonna

work.

A final comment. At this stage of the game I don't think either abx

therapies or Yasko's protocol are sufficiently advanced for the simple

reason that I don't see people lining up to testify how they

unambiguously have their lives back. The closest Yasko comes is a few

autistic miracles that happen from time to time that she (maybe

legitimately) takes credit for and may or may not be somewhat

transferable to CFIDS cases. And the closest the abx camp comes is a

few turnaround / remission stories that happen from time to time that

they (maybe legitimately) take credit for. This does not impress me.

It isn't a cure. It isn't even very helpful most of the time.

--Bob

davidhall2020 wrote:

Hi, a.

"pjeanneus" <pj7@...> wrote:

>

> ,

> So you think the heart wall will grow back together, much like a

> dissected aortic aneurism. The trouble with this thought to me is

> that hernias do not grow back together. Hernias are holes in

muscles.

> Holes in aortas do heal sometimes. I personally do not recall

hearing

> of a muscle healing. I could be wrong.

***I think restoring cellular energy through effectively treating the

glutathione depletion-methylation blocks will eliminate the

pressure

caused by the diastolic cardiomyopathy in PWCs, which is forcing

increased PFO size and the shunting of blood deleteriously from one

side to the other.

***I'm not sure if the specific tissue with the PFO is muscle tissue

( I suspect not), but either way I think the problem with the shunting

will be eliminated or reduced to a benign state as a result of

treating the precipitating issue.

>

> I gather you, , are taking some of Yasko's many treatments.

> Which ones did she select for you?

***I'm not on the Yasko protocol as of yet, so I've had no

consultation from her. I've only experimented with a few narrowly

focused suggestions from her overall comprehensive model at this

point, with some surprising benefits, but I haven't got to the major

parts of her program that may accelerate my progress at this point(I

sense stage III may fit my case along with some dietary adjustments

suggested for further balancing GABA/glutatmate microglial activation

and inflammation).

>

> I am also extremely curious to know what infections you have ever

> been tested for and what were positive?

***Lyme, ebv, c. neumoniae, staph a., m. fermentans, and it's likely

there may be dozens if not hundreds of infections and many metals,

which these infections appear to use to protect themselves, that are

riddling mine and other PWCs brains, other tissues and organs.

I know Yasko suggests some Lyme patients be treated for infection with

antibiotics and samento.

> Knowing that I have been treated for ten years and still test

> positive with borrelia antigen showing up I am extremely doubtful

> that any Yasko treatment will control borreliosis. It would be a

> wonder if one could control the genetic issues that keep one

unable

> to control borrelia.

***I think more specifically it is mastering the genetics in each

individual case as they relate to methylation that will set us free

from the grip of the infections and toxins in us.

>

> You know, the scientists know what is needed to control HIV. But

with

> cfs we don't even know all the infections we have, let alone what

> genetic framework we need to control all of them - and most of us

are

> infected with SEVERAL, not just HIV.

***I know I and I don't think many are arguing with you on this point,

just perhaps disagreeing with the traditional model you may be

adhering to too tightly, which says one must know what each and every

individual infection is and specifically attack it according to its

unique vulnerabilities, rather than pull the rug out from underneath

all of the them by optimizing methylation according to how that needs

to be done in each individual PWC.

>

> Also, I have taken ImmunoPro for years. It certainly helps but

does

> not cure. I keep asking Rich if you cannot stop the chronic

infection

> then how will you heal the body?

***He's answered you several times on this I've seen. And as far as

ImmunePro goes it may be helping more than you think, particularly if

you haven't gotten quantitative testing to show how these improvements

in status.

***More to the point, the gap for you in restoring your core health

and well-being may be in successfully addressing more of the specific

methylation blocks you have that ImmunePro alone can't do.

I don't disagree that some of us

> genetically may be unable to control borrelia or mycoplasma or

> babesia or ehrlichia, but I don't see Yasko is anywhere close to

> fixing us.

>

> Please tell me I am wrong.

***Okay, you're wrong! Obviously the Yasko model needs to be born

out as far as CFS and Lyme goes, and there is no way to avoid the gap

in proof that only time and focused treatment can show, but I do think

you've not done your homework enough on her approach to draw this

conclusion you seem to have drawn.

***Her book, The Puzzle of Autism(2006 version), through amazon.com is

probably the best single thing to read in order to effectively get

what she's talking about. From there and from perhaps checking in on

PWCs already doing her program, I think anyone can then make their

best judgement as to whether this path is suited for their individual

case or not.

>

> a Carnes

***

January 14, 2007

****And the closest the abx camp comes is a

> few turnaround / remission stories that happen from time to time

that

> they (maybe legitimately) take credit for. This does not impress

me.

> It isn't a cure. It isn't even very helpful most of the time.

**********

Bob

When you go out to treat an infection you take into account the

terrain your dealing with. In Tubercuosis the granular tissue in the

lungs that houses the infection takes a long time to clear infection

from. Many on these forums have cysts and even undiagnosed abscesses

that are being missed. So to sit there and throw a few pills at a

terrain that needs better evaluation-ain't going to get the result

you or anyone is wishing for.

You also need to take into account that all treatment being offered

to lymies and the like is pathetic.Often people have a pseudomonal

aspect to there co infection which is getting larger with every

antibiotic taken.Your virtually creating a bigger infection by

stimulating the bacteria into multiplication.

So you really want to join a camp that addresses your problems with a

bit of follow up science, not the CRAP SHOOT TREATMENTS everyone

seems to offer.. It's also another day of listening to some fuckwit

telling us that glutathione depletion is the BUZZ diagnosis. I think

Ken from the experimental site warned them six months ago that this

has been going on for TEN YEARS and it should stopped being thrashed

as it never lived up to anyones expecations,which was a priority on

talking about issues on cfs experimental that actually benefitted

people as a treatment.

> > >

> > > ,

> > > So you think the heart wall will grow back together, much like a

> > > dissected aortic aneurism. The trouble with this thought to me

is

> > > that hernias do not grow back together. Hernias are holes in

muscles.

> > > Holes in aortas do heal sometimes. I personally do not recall

hearing

> > > of a muscle healing. I could be wrong.

> >

> > ***I think restoring cellular energy through effectively treating

the

> > glutathione depletion-methylation blocks will eliminate the

pressure

> > caused by the diastolic cardiomyopathy in PWCs, which is forcing

> > increased PFO size and the shunting of blood deleteriously from

one

> > side to the other.

> >

> > ***I'm not sure if the specific tissue with the PFO is muscle

tissue

> > ( I suspect not), but either way I think the problem with the

shunting

> > will be eliminated or reduced to a benign state as a result of

> > treating the precipitating issue.

> >

> > >

> > > I gather you, , are taking some of Yasko's many treatments.

> > > Which ones did she select for you?

> >

> > ***I'm not on the Yasko protocol as of yet, so I've had no

> > consultation from her. I've only experimented with a few narrowly

> > focused suggestions from her overall comprehensive model at this

> > point, with some surprising benefits, but I haven't got to the

major

> > parts of her program that may accelerate my progress at this point

(I

> > sense stage III may fit my case along with some dietary

adjustments

> > suggested for further balancing GABA/glutatmate microglial

activation

> > and inflammation).

> >

> > >

> > > I am also extremely curious to know what infections you have

ever

> > > been tested for and what were positive?

> >

> > ***Lyme, ebv, c. neumoniae, staph a., m. fermentans, and it's

likely

> > there may be dozens if not hundreds of infections and many metals,

> > which these infections appear to use to protect themselves, that

are

> > riddling mine and other PWCs brains, other tissues and organs.

> >

> > I know Yasko suggests some Lyme patients be treated for infection

with

> > antibiotics and samento.

> > > Knowing that I have been treated for ten years and still test

> > > positive with borrelia antigen showing up I am extremely

doubtful

> > > that any Yasko treatment will control borreliosis. It would be a

> > > wonder if one could control the genetic issues that keep one

unable

> > > to control borrelia.

> >

> > ***I think more specifically it is mastering the genetics in each

> > individual case as they relate to methylation that will set us

free

> > from the grip of the infections and toxins in us.

> >

> > >

> > > You know, the scientists know what is needed to control HIV.

But with

> > > cfs we don't even know all the infections we have, let alone

what

> > > genetic framework we need to control all of them - and most of

us are

> > > infected with SEVERAL, not just HIV.

> >

> > ***I know I and I don't think many are arguing with you on this

point,

> > just perhaps disagreeing with the traditional model you may be

> > adhering to too tightly, which says one must know what each and

every

> > individual infection is and specifically attack it according to

its

> > unique vulnerabilities, rather than pull the rug out from

underneath

> > all of the them by optimizing methylation according to how that

needs

> > to be done in each individual PWC.

> >

> > >

> > > Also, I have taken ImmunoPro for years. It certainly helps but

does

> > > not cure. I keep asking Rich if you cannot stop the chronic

infection

> > > then how will you heal the body?

> >

> > ***He's answered you several times on this I've seen. And as far

as

> > ImmunePro goes it may be helping more than you think,

particularly if

> > you haven't gotten quantitative testing to show how these

improvements

> > in status.

> >

> > ***More to the point, the gap for you in restoring your core

health

> > and well-being may be in successfully addressing more of the

specific

> > methylation blocks you have that ImmunePro alone can't do.

> >

> > I don't disagree that some of us

> > > genetically may be unable to control borrelia or mycoplasma or

> > > babesia or ehrlichia, but I don't see Yasko is anywhere close to

> > > fixing us.

> > >

> > > Please tell me I am wrong.

> >

> > ***Okay, you're wrong! Obviously the Yasko model needs to be

born

> > out as far as CFS and Lyme goes, and there is no way to avoid the

gap

> > in proof that only time and focused treatment can show, but I do

think

> > you've not done your homework enough on her approach to draw this

> > conclusion you seem to have drawn.

> >

> > ***Her book, The Puzzle of Autism(2006 version), through

amazon.com is

> > probably the best single thing to read in order to effectively get

> > what she's talking about. From there and from perhaps checking in

on

> > PWCs already doing her program, I think anyone can then make their

> > best judgement as to whether this path is suited for their

individual

> > case or not.

> >

> > >

> > > a Carnes

> >

> > ***

> >

>

January 14, 2007

I believe you re clearing

lung infection. In the mid 90's my physician at that time did a chest

xray while I had an active and persistent case of bronchitis and found

a locus of infection in the upper left lobe which he treated with a

fairly lengthy course of abx and then re-checked to make sure it was

gone. I'm pretty sure it was leftovers from a case of pneumonia I had

about 2 or 3 years before that, and once it was treated I felt more

energetic and healthy than I had in a long time. Especially if you are

reasonably healthy in the first place I think things like that creep up

on you gradually so that you don't really even realize how bad off you

are until it gets fixed. When I had the pneumonia I had a dry cough

for weeks after the abx ran out, the doctor said it'd clear up on its

own, and it did -- by walling it off in a nasty little pocket so it

could fester for a few years. I was fortunate to stumble upon a doctor

with more care and sense who detected and remedied the issue.

I believe you are saying that pseudomonas are stimulated to grow by

abx. What kills them then? Or is it a matter of which abx in which

doses?

--Bob

dumbaussie2000 wrote:

****And the closest the abx camp comes is a

> few turnaround / remission stories that happen from time to time

that

> they (maybe legitimately) take credit for. This does not impress

me.

> It isn't a cure. It isn't even very helpful most of the time.

**********

Bob

When you go out to treat an infection you take into account the

terrain your dealing with. In Tubercuosis the granular tissue in the

lungs that houses the infection takes a long time to clear infection

from. Many on these forums have cysts and even undiagnosed abscesses

that are being missed. So to sit there and throw a few pills at a

terrain that needs better evaluation-ain't going to get the result

you or anyone is wishing for.

You also need to take into account that all treatment being offered

to lymies and the like is pathetic.Often people have a pseudomonal

aspect to there co infection which is getting larger with every

antibiotic taken.Your virtually creating a bigger infection by

stimulating the bacteria into multiplication.

So you really want to join a camp that addresses your problems with a

bit of follow up science, not the CRAP SHOOT TREATMENTS everyone

seems to offer.. It's also another day of listening to some fuckwit

telling us that glutathione depletion is the BUZZ diagnosis. I think

Ken from the experimental site warned them six months ago that this

has been going on for TEN YEARS and it should stopped being thrashed

as it never lived up to anyones expecations,which was a priority

on

talking about issues on cfs experimental that actually benefitted

people as a treatment.

> > >

> > > ,

> > > So you think the heart wall will grow back together,

much like a

> > > dissected aortic aneurism. The trouble with this thought

to me

is

> > > that hernias do not grow back together. Hernias are

holes in

muscles.

> > > Holes in aortas do heal sometimes. I personally do not

recall

hearing

> > > of a muscle healing. I could be wrong.

> >

> > ***I think restoring cellular energy through effectively

treating

the

> > glutathione depletion-methylation blocks will eliminate

the

pressure

> > caused by the diastolic cardiomyopathy in PWCs, which is

forcing

> > increased PFO size and the shunting of blood deleteriously

from

one

> > side to the other.

> >

> > ***I'm not sure if the specific tissue with the PFO is muscle

tissue

> > ( I suspect not), but either way I think the problem with the

shunting

> > will be eliminated or reduced to a benign state as a result of

> > treating the precipitating issue.

> >

> > >

> > > I gather you, , are taking some of Yasko's many

treatments.

> > > Which ones did she select for you?

> >

> > ***I'm not on the Yasko protocol as of yet, so I've had no

> > consultation from her. I've only experimented with a few

narrowly

> > focused suggestions from her overall comprehensive model at

this

> > point, with some surprising benefits, but I haven't got to

the

major

> > parts of her program that may accelerate my progress at this

point

(I

> > sense stage III may fit my case along with some dietary

adjustments

> > suggested for further balancing GABA/glutatmate microglial

activation

> > and inflammation).

> >

> > >

> > > I am also extremely curious to know what infections you

have

ever

> > > been tested for and what were positive?

> >

> > ***Lyme, ebv, c. neumoniae, staph a., m. fermentans, and it's

likely

> > there may be dozens if not hundreds of infections and many

metals,

> > which these infections appear to use to protect themselves,

that

are

> > riddling mine and other PWCs brains, other tissues and organs.

> >

> > I know Yasko suggests some Lyme patients be treated for

infection

with

> > antibiotics and samento.

> > > Knowing that I have been treated for ten years and still

test

> > > positive with borrelia antigen showing up I am extremely

doubtful

> > > that any Yasko treatment will control borreliosis. It

would be a

> > > wonder if one could control the genetic issues that keep

one

unable

> > > to control borrelia.

> >

> > ***I think more specifically it is mastering the genetics in

each

> > individual case as they relate to methylation that will set

us

free

> > from the grip of the infections and toxins in us.

> >

> > >

> > > You know, the scientists know what is needed to control

HIV.

But with

> > > cfs we don't even know all the infections we have, let

alone

what

> > > genetic framework we need to control all of them - and

most of

us are

> > > infected with SEVERAL, not just HIV.

> >

> > ***I know I and I don't think many are arguing with you on

this

point,

> > just perhaps disagreeing with the traditional model you may be

> > adhering to too tightly, which says one must know what each

and

every

> > individual infection is and specifically attack it according

to

its

> > unique vulnerabilities, rather than pull the rug out from

underneath

> > all of the them by optimizing methylation according to how

that

needs

> > to be done in each individual PWC.

> >

> > >

> > > Also, I have taken ImmunoPro for years. It certainly

helps but

does

> > > not cure. I keep asking Rich if you cannot stop the

chronic

infection

> > > then how will you heal the body?

> >

> > ***He's answered you several times on this I've seen. And as

far

as

> > ImmunePro goes it may be helping more than you think,

particularly if

> > you haven't gotten quantitative testing to show how these

improvements

> > in status.

> >

> > ***More to the point, the gap for you in restoring your core

health

> > and well-being may be in successfully addressing more of the

specific

> > methylation blocks you have that ImmunePro alone can't do.

> >

> > I don't disagree that some of us

> > > genetically may be unable to control borrelia or

mycoplasma or

> > > babesia or ehrlichia, but I don't see Yasko is anywhere

close to

> > > fixing us.

> > >

> > > Please tell me I am wrong.

> >

> > ***Okay, you're wrong! Obviously the Yasko model needs to

be

born

> > out as far as CFS and Lyme goes, and there is no way to avoid

the

gap

> > in proof that only time and focused treatment can show, but I

do

think

> > you've not done your homework enough on her approach to draw

this

> > conclusion you seem to have drawn.

> >

> > ***Her book, The Puzzle of Autism(2006 version), through

amazon.com is

> > probably the best single thing to read in order to

effectively get

> > what she's talking about. From there and from perhaps

checking in

on

> > PWCs already doing her program, I think anyone can then make

their

> > best judgement as to whether this path is suited for their

individual

> > case or not.

> >

> > >

> > > a Carnes

> >

> > ***

> >

>

January 14, 2007

DAvid and all,

I hope we can continue this discussion on this email list. Thanks,

, for your thoughtful replies. I wish I could find some hope in

Yasko, just as I wish I could find some hope in rife machines.

You suggest that I have not done my homework. I must admit after 11

years and some level of recovery I don't want to do that much

homework. I went to her site and was just overcome with the

impossibility of finding information. Now you tell me she has a book

on autism. Do I want to spend my money, and more importantly, my

time?

When I took time to look for some sort of a chart linking infection

to genetic deficiency to treatment I could not find anything. What I

did find in terms of treating just borrelia was stuff most Lymies

have tried for decades to no effect.

So convince me. What are you taking that you didn't take before that

is now working for you? You say that Rich has already answered me. I

don't think he has. Oh, he has written a lot to me, even stating that

it is not so simple as the chart I request: infection - genetic

issues - treatment. But I say when I read Yasko's beginnings of such

a chart I see nothing worth trying AGAIN, especially not samento.

Rich suggests I get Yasko's tests done. I just spent $2000 for dental

work my insurance didn't cover. Then I will have to pay $350 a month

for diflucan my insurance rejected in the face of my doctor's

prescription. My husband and I are old school teachers, not

millionaires. I think I have done enough homework to determine that

some others are going to have to recover on Yasko before I try

walking on water.

I get your point about the PFO not being the problem. So why is

Cheney making it the problem? Same old Cheney - beat the details to

death without getting at the UNDERLYING INFECTIONS.

I agree with you that a simplistic use of antibiotics will not fix

these infections. But I also agree with Tony that antibiotics

appropriately used may well fix all of us. Just because I was given a

couple of antibiotics for 10 years doesn't mean I was treated

appropriately. Considering that the main antibiotic I ever took was

only Zithromax it is no wonder I probably still had babesia. And then

if you give me massive doses of quinolones which don't work but do

harm, it is a wonder I am still around to tell about it.

And then there is the very real question of how much money any of us

have to get the Yasko tests run. , I plan to use the last years

of my life to write a couple more books, teach a Sunday school class,

and have some fun. So maybe just tell me what you are taking right

now, and I can do a LITTLE homework on that.

a Carnes

> Hi, a.

>

> " pjeanneus " <pj7@> wrote:

> >

> > ,

> > So you think the heart wall will grow back together, much like a

> > dissected aortic aneurism. The trouble with this thought to me is

> > that hernias do not grow back together. Hernias are holes in

muscles.

> > Holes in aortas do heal sometimes. I personally do not recall

hearing

> > of a muscle healing. I could be wrong.

>

> ***I think restoring cellular energy through effectively treating

the

> glutathione depletion-methylation blocks will eliminate the pressure

> caused by the diastolic cardiomyopathy in PWCs, which is forcing

> increased PFO size and the shunting of blood deleteriously from one

> side to the other.

>

> ***I'm not sure if the specific tissue with the PFO is muscle tissue

> ( I suspect not), but either way I think the problem with the

shunting

> will be eliminated or reduced to a benign state as a result of

> treating the precipitating issue.

>

> >

> > I gather you, , are taking some of Yasko's many treatments.

> > Which ones did she select for you?

>

> ***I'm not on the Yasko protocol as of yet, so I've had no

> consultation from her. I've only experimented with a few narrowly

> focused suggestions from her overall comprehensive model at this

> point, with some surprising benefits, but I haven't got to the major

> parts of her program that may accelerate my progress at this point(I

> sense stage III may fit my case along with some dietary adjustments

> suggested for further balancing GABA/glutatmate microglial

activation

> and inflammation).

>

> >

> > I am also extremely curious to know what infections you have ever

> > been tested for and what were positive?

>

> ***Lyme, ebv, c. neumoniae, staph a., m. fermentans, and it's likely

> there may be dozens if not hundreds of infections and many metals,

> which these infections appear to use to protect themselves, that are

> riddling mine and other PWCs brains, other tissues and organs.

>

> I know Yasko suggests some Lyme patients be treated for infection

with

> antibiotics and samento.

> > Knowing that I have been treated for ten years and still test

> > positive with borrelia antigen showing up I am extremely doubtful

> > that any Yasko treatment will control borreliosis. It would be a

> > wonder if one could control the genetic issues that keep one

unable

> > to control borrelia.

>

> ***I think more specifically it is mastering the genetics in each

> individual case as they relate to methylation that will set us free

> from the grip of the infections and toxins in us.

>

> >

> > You know, the scientists know what is needed to control HIV. But

with

> > cfs we don't even know all the infections we have, let alone what

> > genetic framework we need to control all of them - and most of us

are

> > infected with SEVERAL, not just HIV.

>

> ***I know I and I don't think many are arguing with you on this

point,

> just perhaps disagreeing with the traditional model you may be

> adhering to too tightly, which says one must know what each and

every

> individual infection is and specifically attack it according to its

> unique vulnerabilities, rather than pull the rug out from underneath

> all of the them by optimizing methylation according to how that

needs

> to be done in each individual PWC.

>

> >

> > Also, I have taken ImmunoPro for years. It certainly helps but

does

> > not cure. I keep asking Rich if you cannot stop the chronic

infection

> > then how will you heal the body?

>

> ***He's answered you several times on this I've seen. And as far as

> ImmunePro goes it may be helping more than you think, particularly

if

> you haven't gotten quantitative testing to show how these

improvements

> in status.

>

> ***More to the point, the gap for you in restoring your core health

> and well-being may be in successfully addressing more of the

specific

> methylation blocks you have that ImmunePro alone can't do.

>

> I don't disagree that some of us

> > genetically may be unable to control borrelia or mycoplasma or

> > babesia or ehrlichia, but I don't see Yasko is anywhere close to

> > fixing us.

> >

> > Please tell me I am wrong.

>

> ***Okay, you're wrong! Obviously the Yasko model needs to be

born

> out as far as CFS and Lyme goes, and there is no way to avoid the

gap

> in proof that only time and focused treatment can show, but I do

think

> you've not done your homework enough on her approach to draw this

> conclusion you seem to have drawn.

>

> ***Her book, The Puzzle of Autism(2006 version), through amazon.com

is

> probably the best single thing to read in order to effectively get

> what she's talking about. From there and from perhaps checking in

on

> PWCs already doing her program, I think anyone can then make their

> best judgement as to whether this path is suited for their

individual

> case or not.

>

> >

> > a Carnes

>

> ***

>

January 14, 2007

> Whether you chose to buy into Yasko's approach or stick with a more

> traditional antibiotic assault on chronic infection, an important

> missing link is how to deal with herxing, especially in the presence

of

> impaired detox pathways. In both camps, all they really have to

offer

> is a couple of supplements that might help some, and other than

that,

> just tough it out.

Not quite 100% true. While I have no knowledge/opinion on such

practices myself, I think at least a few doctors have used potent

immunosuppressives, including steroids, in conjunction with

antibacterial therapy. For example, Stratton mentions such in his

patents. How effective it is, I have no information on.

January 14, 2007

> to make sure it was gone. I'm pretty sure it was leftovers from a

case of pneumonia I had about 2 or 3 years before that, and once it

was treated I felt more energetic and healthy than I had in a long

time.

Thanks, that was a very interesting anecdote.

> Especially if you are reasonably healthy in the first place I

think things like that creep up on you gradually so that you don't

really even realize how bad off you are until it gets fixed.

Certainly very plausible.

> I believe you are saying that pseudomonas are stimulated to grow

by abx. What kills them then? Or is it a matter of which abx in

which doses?

Few classes of abx can permeate the pseudomonad cytoplasm, because

its outer membrane is so impermeable. The drugs come though that

outer membrane very slowly, and pseudomonads, like all bacteria,

have some capability to pump drugs out. In this case, for most abx,

the rate of entry does not exceed the rate of pumping out (to

simplify slightly), so the drug concentration achieved inside the

pseudomonad cell is close to zero.

Assuming normally-growing, normally-drug-sensitive pseudomonads are

a common undiagnosed cause of chronic disease, then there is a

prediction that follows inextricably from this hypothesis: rapid

improvement should be seen in a person who recieves any of the drugs

to which pseudomonads are sensitive. I am not sure how often any of

the anti-pseudomonad drugs are used today (outside of cystic

fibrosis treatment), but my first guess would be that they are used

often enough that many chronic illness patients have probably taken

them at one time or another. Yet I haven't heard anything firsthand

or from scholarly sources about any resulting miracles. Which is not

to say that it hasn't ever happened.

If you really want to make a proper evaluation, just look up all the

anti-pseudo drugs and investigate them to see if they are still used.

January 14, 2007

Dramatic statements Dave,

Cheney did not mention glutathione I dont believe in the treatment section of

that talk - nor methylation nor, as we well know, does glutathione work in

everyone. This is not too downplay how effective GSH is for some - De Meirleir

mentioned lipoceutical GSH at one Q & A session but we're a very heterogenous

group.

Cheney has apparently been using Corvalen D-ribose for at least six months -

thats another energy inducer - I wonder how thats going.

davidhall2020 <david-hall@...> wrote:

Hi, all.

I just talked to my healthy friend, Potter, who attended

Thursday nights 2007 IACFS conference banquet on my behalf(nice to

have friends living near the vacinity of important conferences like

this to get the early scoop!). Anyway, he actually got the keynote

presention at this banquet featuring Dr Cheney, M.D., Ph.D.,

video taped for me(I haven't reviewed it yet), but was able to

communicate fairly effectively the gist of what happened in this

presentation.

This communication allows me to offer you my impression of what the

hole in the heart issue(called a PFO) is all about in CFS and how to

heal or totally eliminate its possible negative impact, something I

think many of you might appreciate. Of course it should be noted that

the physician's and researcher's section of the 2007 IACFS conference

is still proceding up through Sunday and my complete review of Dr

Cheney's presentation may yield more insight, but that said, follows

is what I'm gathering cuts to the chase on the state of the art in CFS.

One, Dr Cheney has further deepened his understanding about the

details of the mechanisms following the acquired diastolic heart

dysfunction that happens in many PWCs, with the finding that possibly

all PWCs have a PFO(hole in the heart like that found in roughly

20-30% of the normal population). And this finding of PFOs in PWCs

Dr Cheney believes, probably accurately so from my layman's point of

view, worsens or increases in size as result of the underlying

pathology of CFS and not the other way around.

Two, Dr Cheney still has not yet solved in his own mind the cause of

the energy deficit within the cells of PWCs hearts that leads to CFS

diastolic heart dysfunction and the noted downstream

PFO size expansion. Apparently this remaining gap in his knowledge

left several attendees, including fellow CFS researcher, Rich Van

Konynenburg, Ph.D., and others, in a state of befuddlement following

his presentation, as the solution to this heart cell energy deficit in

CFS seems rather apparent to them at this point.

As many of you know, Rich stands clear that it is the glutathione

depletion-methylation block issue in PWCs that is the cause of their

heart cell energy deficit, their diastolic heart dysfunction and all

other known CFS related symptoms they may have. FWIW and in my own

experience given some good quantifiable improvements in my own case

from doing treatments consistent with this hypothesis, I think Rich

has nailed the pathogenesis or root cause of CFS.

More details need to be learned and further duplication of findings

needs to be done for everything from CFS pathogenesis to end-stage

pathophysiology, diastolic cardiomyopathy being an example of this, in

the research community. Nevertheless, it appears this so far

unshakeable hypothesis of cause by Rich is the CFS ringer!

This naturally suggests treatment paths, several that have been

discussed on this list and others, with the Yasko treatment approach

being one of the lastest and possibly most comprehensive plan

available to date. I think following this approach or other treatment

paths consistent with Rich's glutathione depletion-methylation block

hypothesis will eliminate the CFS heart cell energy deficit, the

diastolic heart dysfunction that follows and in result reduce to

benign size if not complete closure the PFOs currently being found in

PWCs.

This is the state of the art in CFS.

---------------------------------

TV dinner still cooling?

Check out " Tonight's Picks " on TV.

January 15, 2007

Hi, Bob.

Bob Grommes <bob@...> wrote:

>

> If I may toss in a $0.02 worth here.

>

> The PFO is not completely closed in 20% of the general population. Yet

> these people are mostly asymptomatic. They might have a fainting spell

> or weakness when straining in a particular way, as when lifting a heavy

> object or straining to poop ... however, for the most part it's not a

> practical issue and they are functional.

>

> We've been told (and now we are into theoretical territory I'm sure)

> that the PFO can be further / more frequently opened due to (1) the

> additional atrial pressure that Cheney reports he has found in CFS

> patients and (2) by any condition that promotes circulatory spasms,

such

> as infection of the vagus nerve, parsympathetic nervous system

> derangement, and aggravating conditions such as hiatal hernia. If all

> this is true, then correction of any of the above conditions may

> plausibly improve or correct a symptomatic PFO. Lastly, it's plausible

> that the unoxygenated / unfiltered blood that can leak through a PFO is

> more of a problem for a CFS patient, who is likely to have cerebral

> hypoperfusion already, and for an MCS patient who is just much more

> sensitive to anything that disturbs the stability of the internal

> terrain. So the PFO plausibly is a problem that feeds on itself in

such

> persons in ways it would not in a relatively healthy individual. Put

> another way, a relatively healthy person has reserves and resilience

> that carries the day for them.

>

> To fit with the discussion prevalent on this list, one could also

> theorize that PFOs can be exacerbated by inflammation, particularly if

> the heart and/or its supporting structures and nerves are directly

> infected.

***OR more precisely that their heart cells are glutathione

depleted-methylation blocked. Their brains and bodies too, adding to

the problem.

That is strictly my theory, and totally speculative, but I

> think those on this list would agree it's plausible and if so, then

> directly addressing infection may be helpful and arguably more

important

> than focusing on the PFO, which is not directly treatable in any

> meaningful way in any case, with our current medical technology.

***This thought is in error. It's completely correctable with the

approaches such as the Yasko approach and OTHERS, even including some

antibiotic therapies, although alone it should be regularly noted that

these have predominantly failed in CFS and end-stage Lyme.

>

> Whether you chose to buy into Yasko's approach or stick with a more

> traditional antibiotic assault on chronic infection, an important

> missing link is how to deal with herxing, especially in the presence of

> impaired detox pathways. In both camps, all they really have to offer

> is a couple of supplements that might help some, and other than that,

> just tough it out.

***No. You obviously have not done your homework on Yasko. The

enevitable side effects from an effective antimicrobial and detox

protocol she has many several very well thought out support treatments

for people, not just a couple supplements.

That's grand if you can do so. However, some

> patients are so badly impaired in this area that you are just asking

> them to go through a living hell which they can't endure, and may

> permanently damage them, if not kill them. Even in the best case

> scenario you are talking months or years of " feeling worse so you can

> feel better " . This requires tremendous faith on the part of the

> patient, who in turn generally gets little real support and is pretty

> much on their own. In other words, in the real world it ain't gonna

work.

***False. It has been working for autistics, who have much of the

same underlying pathology involved as CFS and Lyme. Even the PWCs who

have successfully conquered their illness, as few as these numbers

seem to be, fit the basic pathogenesis proposed by Rich in how they

accomplished this task.

>

> A final comment. At this stage of the game I don't think either abx

> therapies or Yasko's protocol are sufficiently advanced for the simple

> reason that I don't see people lining up to testify how they

> unambiguously have their lives back. The closest Yasko comes is a few

> autistic miracles that happen from time to time that she (maybe

> legitimately) takes credit for and may or may not be somewhat

> transferable to CFIDS cases. And the closest the abx camp comes is a

> few turnaround / remission stories that happen from time to time that

> they (maybe legitimately) take credit for. This does not impress me.

> It isn't a cure. It isn't even very helpful most of the time.

>

> --Bob

***Your cynisism is clear and even understandable. However, this

attitude and understanding of it doesn't make the reasons for it true.

***The past doesn't equal the future and the fact that you are making

errors in simply grasping particular aspects of glutathione

depletion-methylation block approach's should hint at that your

overall conclusions might be errant as well.

***

January 15, 2007

Hey Tony, what's up?

" dumbaussie2000 " <dumbaussie2000@...> wrote:

some fuckwit telling us that glutathione depletion is the BUZZ diagnosis.

***I know you ain't talkin' about me...right?...BOY! I'd gladly kick

your buaweedoo to the otherside of the Milky Way if so Come'on,

you still don't believe all this overraught nonsense you spew about

antibiotics potential for curing CFS and lyme, do you?

***That jack rabbit will still never win the race and you're grasp of

the glutathione-mythylation blocks pathogenic hypothesis for CFS is

blunderous you know. Just because your friend, Dr Cheney, lost track

of the front side of this overall lead ten years back after he had it

in the bag doesn't make it wrong.

***He had the Nobel Prize locked up, but we still have hope for you,

Tony....You're our only hope!

***

January 15, 2007

Hi, a.

" pjeanneus " <pj7@...> wrote:

>

> DAvid and all,

> I hope we can continue this discussion on this email list. Thanks,

> , for your thoughtful replies. I wish I could find some hope in

> Yasko, just as I wish I could find some hope in rife machines.

***Your use of analogy is amazing, genius!

Thanks for your genuine and thoughtful thanks

>

> You suggest that I have not done my homework.

***Well, no, actually at this point, it is clear you have NOT.

I must admit after 11

> years and some level of recovery I don't want to do that much

> homework. I went to her site and was just overcome with the

> impossibility of finding information. Now you tell me she has a book

> on autism. Do I want to spend my money, and more importantly, my

> time?

***YES, you do, against you're own " better " judgement

>

> When I took time to look for some sort of a chart linking infection

> to genetic deficiency to treatment I could not find anything. What I

> did find in terms of treating just borrelia was stuff most Lymies

> have tried for decades to no effect.

***And what other methylation blocks did you address, besides what

those particular treatments might do, that could make all the

difference to getting well?

>

> So convince me. What are you taking that you didn't take before that

> is now working for you?

***It's posted at the Experimental list in detail. Since it's not

according to the Yasko protocol, it would be misleading here to simply

discuss the few narrowly focused issues I addressed using just a few

of her treatments in just a short period of time among her overarching

model, which does require immersing oneself in it over nine months or

possibly longer(I think previous and ongoing use of RenewPro or

ImmunePro in a PWC may shorten this process to six months or less to

start to see some very good results).

You say that Rich has already answered me. I

> don't think he has.

***Yes, he did. Apparently, you missed it.

Oh, he has written a lot to me, even stating that

> it is not so simple as the chart I request: infection - genetic

> issues - treatment. But I say when I read Yasko's beginnings of such

> a chart I see nothing worth trying AGAIN, especially not samento.

***So, what?

>

> Rich suggests I get Yasko's tests done. I just spent $2000 for dental

> work my insurance didn't cover. Then I will have to pay $350 a month

> for diflucan my insurance rejected in the face of my doctor's

> prescription. My husband and I are old school teachers, not

> millionaires. I think I have done enough homework to determine that

> some others are going to have to recover on Yasko before I try

> walking on water.

***Theres no rule that says a has to be the early adopter for

this. It's obviously valid to watch n' see, but I do suggest your

ongoing sob story, as if you're special and unique in you suffering

and financial difficulties, stops, for you're own sake.

***It's simply not true that you're a victim. " Getting off it " about

this could go along way in your finding a way to making whatever you

choose to about your health and life work.

>

> I get your point about the PFO not being the problem. So why is

> Cheney making it the problem? Same old Cheney - beat the details to

> death without getting at the UNDERLYING INFECTIONS.

***He has his blind spots and you have yours.

>

> I agree with you that a simplistic use of antibiotics will not fix

> these infections. But I also agree with Tony that antibiotics

> appropriately used may well fix all of us.

***Tony has his contributions, but if this is what he thinks, it is a

blunderous thought. It doesn't comport with the reality of CFS and

end-stage Lyme.

Just because I was given a

> couple of antibiotics for 10 years doesn't mean I was treated

> appropriately. Considering that the main antibiotic I ever took was

> only Zithromax it is no wonder I probably still had babesia. And then

> if you give me massive doses of quinolones which don't work but do

> harm, it is a wonder I am still around to tell about it.

>

> And then there is the very real question of how much money any of us

> have to get the Yasko tests run. , I plan to use the last years

> of my life to write a couple more books, teach a Sunday school class,

> and have some fun. So maybe just tell me what you are taking right

> now, and I can do a LITTLE homework on that.

>

> a Carnes

***

January 15, 2007

Hi, Cort.

My take is Rich's hypothesis of pathogenesis of CFS is a dramatic

discovery, but even more so, the most rational and grounded theory of

cause to date, something Dr Cheney seems to miss.

The refinement of adding the methylations blocks issue only enhances

its credibility and comprehension. It's an error on your part, if

this is what you're doing, to view it through the lens that what is

being said is whey protein or glutathione IV's or other similar

treatments are the cure for all CFS pathophysiology.

This is agreeably not true, but more importantly, it is not what is

being stated by Rich's hypothesis. Please refute with facts what in

fact is being stated in this hypothesis if you can.

I and others, I'm sure, would welcome this kind of insight. As far as

Dr Cheney goes I've heard nothing so far out of the CFS conference

that just completed that tells us he knows the source of heart cell

energy deficit in CFS, a problem he has in fact admitted he hasn't

solved in his own thinking, though as you note appears to be throwing

things at it to see what happens.

Throwing thought to be potential solutions to a problem is not the

same as having solved the problem, no insult intended. It is also a

fact that several people saw and have seen this gap in his thinking as

befuddling, given what now seems apparent is the reason for heart cell

energy deficit in CFS.

I'll be getting my friend's taping of what happened in Dr Cheney's

conference banquet presentation in a few days and may report more if

any new interesting information comes from it.

<cortttt@...> wrote:

>

> Dramatic statements Dave,

>

> Cheney did not mention glutathione I dont believe in the treatment

section of that talk - nor methylation nor, as we well know, does

glutathione work in everyone. This is not too downplay how effective

GSH is for some - De Meirleir mentioned lipoceutical GSH at one Q & A

session but we're a very heterogenous group.

>

> Cheney has apparently been using Corvalen D-ribose for at least

six months - thats another energy inducer - I wonder how thats going.

>

> davidhall2020 <david-hall@...> wrote:

> Hi, all.

>

> I just talked to my healthy friend, Potter, who attended

> Thursday nights 2007 IACFS conference banquet on my behalf(nice to

> have friends living near the vacinity of important conferences like

> this to get the early scoop!). Anyway, he actually got the keynote

> presention at this banquet featuring Dr Cheney, M.D., Ph.D.,

> video taped for me(I haven't reviewed it yet), but was able to

> communicate fairly effectively the gist of what happened in this

> presentation.

>

> This communication allows me to offer you my impression of what the

> hole in the heart issue(called a PFO) is all about in CFS and how to

> heal or totally eliminate its possible negative impact, something I

> think many of you might appreciate. Of course it should be noted that

> the physician's and researcher's section of the 2007 IACFS conference

> is still proceding up through Sunday and my complete review of Dr

> Cheney's presentation may yield more insight, but that said, follows

> is what I'm gathering cuts to the chase on the state of the art in CFS.

>

> One, Dr Cheney has further deepened his understanding about the

> details of the mechanisms following the acquired diastolic heart

> dysfunction that happens in many PWCs, with the finding that possibly

> all PWCs have a PFO(hole in the heart like that found in roughly

> 20-30% of the normal population). And this finding of PFOs in PWCs

> Dr Cheney believes, probably accurately so from my layman's point of

> view, worsens or increases in size as result of the underlying

> pathology of CFS and not the other way around.

>

> Two, Dr Cheney still has not yet solved in his own mind the cause of

> the energy deficit within the cells of PWCs hearts that leads to CFS

> diastolic heart dysfunction and the noted downstream

> PFO size expansion. Apparently this remaining gap in his knowledge

> left several attendees, including fellow CFS researcher, Rich Van

> Konynenburg, Ph.D., and others, in a state of befuddlement following

> his presentation, as the solution to this heart cell energy deficit in

> CFS seems rather apparent to them at this point.

>

> As many of you know, Rich stands clear that it is the glutathione

> depletion-methylation block issue in PWCs that is the cause of their

> heart cell energy deficit, their diastolic heart dysfunction and all

> other known CFS related symptoms they may have. FWIW and in my own

> experience given some good quantifiable improvements in my own case

> from doing treatments consistent with this hypothesis, I think Rich

> has nailed the pathogenesis or root cause of CFS.

>

> More details need to be learned and further duplication of findings

> needs to be done for everything from CFS pathogenesis to end-stage

> pathophysiology, diastolic cardiomyopathy being an example of this, in

> the research community. Nevertheless, it appears this so far

> unshakeable hypothesis of cause by Rich is the CFS ringer!

>

> This naturally suggests treatment paths, several that have been

> discussed on this list and others, with the Yasko treatment approach

> being one of the lastest and possibly most comprehensive plan

> available to date. I think following this approach or other treatment

> paths consistent with Rich's glutathione depletion-methylation block

> hypothesis will eliminate the CFS heart cell energy deficit, the

> diastolic heart dysfunction that follows and in result reduce to

> benign size if not complete closure the PFOs currently being found in

> PWCs.

>

> This is the state of the art in CFS.

>

January 15, 2007

Hi , I'd personally appreciate it if you'd either outline your points or summarize the crux of this miraculous protocol, rather than just rave about how great it is (and she is and he is), while implying how stupid we are for not being all that enthused. Your not understanding our lack of enthusiasm just shows me that you really don't understand my illness at all, and yet you think you know how to cure it. It all sounds a bit like proselytizing, which really ain't our thang. Been there, heard that a few too many times. Especially when it comes to CFS. If I start seeing chronically infected people having miraculous, sustainable recoveries, then I'll sit up and seriously think about it. But right now, it's

all flag waving and speculation to me (except for my own experience with glutathione which did nothing). I've been down this road so many times, I sure don't have it in me to get excited about something this vague. If you've got helpful info...please share it. Or direct us to a place to learn more. But you're not going to help your case much by bagging on us for not jumping on a band wagon until we know where the wagon's going. thanks, penny davidhall2020 <davidhall@...> wrote: Hi, a."pjeanneus" <pj7@...> wrote:>> DAvid and all,> I hope we can continue this discussion on this email list. Thanks, > , for your thoughtful replies. I wish I could find some hope in > Yasko, just as I wish I could find some hope in rife machines.***Your use of analogy is amazing, genius!Thanks for your genuine and thoughtful thanks > > You suggest that I have not done my homework. ***Well, no, actually at this point, it is clear you have NOT.I must admit after 11 > years and some level of recovery I don't want to do that much > homework. I went to her

site and was just overcome with the > impossibility of finding information. Now you tell me she has a book > on autism. Do I want to spend my money, and more importantly, my > time?***YES, you do, against you're own "better" judgement > > When I took time to look for some sort of a chart linking infection > to genetic deficiency to treatment I could not find anything. What I > did find in terms of treating just borrelia was stuff most Lymies > have tried for decades to no effect.***And what other methylation blocks did you address, besides whatthose particular treatments might do, that could make all thedifference to getting well?> > So convince me. What are you taking that you didn't take before that > is now working for you? ***It's posted at the Experimental list in detail. Since it's notaccording to the Yasko protocol, it would be misleading here

to simplydiscuss the few narrowly focused issues I addressed using just a fewof her treatments in just a short period of time among her overarchingmodel, which does require immersing oneself in it over nine months orpossibly longer(I think previous and ongoing use of RenewPro orImmunePro in a PWC may shorten this process to six months or less tostart to see some very good results). You say that Rich has already answered me. I > don't think he has. ***Yes, he did. Apparently, you missed it.Oh, he has written a lot to me, even stating that > it is not so simple as the chart I request: infection - genetic > issues - treatment. But I say when I read Yasko's beginnings of such > a chart I see nothing worth trying AGAIN, especially not samento.***So, what?> > Rich suggests I get Yasko's tests done. I just spent $2000 for dental > work my insurance didn't cover. Then I

will have to pay $350 a month > for diflucan my insurance rejected in the face of my doctor's > prescription. My husband and I are old school teachers, not > millionaires. I think I have done enough homework to determine that > some others are going to have to recover on Yasko before I try > walking on water.***Theres no rule that says a has to be the early adopter forthis. It's obviously valid to watch n' see, but I do suggest yourongoing sob story, as if you're special and unique in you sufferingand financial difficulties, stops, for you're own sake.***It's simply not true that you're a victim. "Getting off it" aboutthis could go along way in your finding a way to making whatever youchoose to about your health and life work.> > I get your point about the PFO not being the problem. So why is > Cheney making it the problem? Same old Cheney - beat the details to >

death without getting at the UNDERLYING INFECTIONS.***He has his blind spots and you have yours.> > I agree with you that a simplistic use of antibiotics will not fix > these infections. But I also agree with Tony that antibiotics > appropriately used may well fix all of us. ***Tony has his contributions, but if this is what he thinks, it is ablunderous thought. It doesn't comport with the reality of CFS andend-stage Lyme.Just because I was given a > couple of antibiotics for 10 years doesn't mean I was treated > appropriately. Considering that the main antibiotic I ever took was > only Zithromax it is no wonder I probably still had babesia. And then > if you give me massive doses of quinolones which don't work but do > harm, it is a wonder I am still around to tell about it.> > And then there is the very real question of how much money any of us > have

to get the Yasko tests run. , I plan to use the last years > of my life to write a couple more books, teach a Sunday school class, > and have some fun. So maybe just tell me what you are taking right > now, and I can do a LITTLE homework on that.> > a Carnes***

January 15, 2007

, Yasko does not claim the PFO is "completely correctable". I'm

not aware that she makes any particular claims about the PFO or indeed

says anything at all about it and I've spent some time reading her

material, or at least I did about 2-3 months ago. The only direct way

to treat the PFO that I know of, which is installing a patch to close

it, is strongly advised against by Cheney himself. Cheney is doing a

trial for a growth factor that he hopes will help, but has no result to

report yet. So I'm curious how you can call it "completely

correctable" and imply that this comes from Yasko (among others). I

would actually like to follow up any citations you have because I think

this is one of the problems my wife has and I would love to see it

"completely corrected".

Yes, Yasko's protocol, followed in the correct order, is supposed to

ease detox and get detox working more effectively. In theory.

However, it is extremely non-trivial to figure the protocol out,

especially when you have a lot of food allergies / chemical

sensitivities to work around. It's literally a full time job just to

sort through the dogpile of posts on Yasko's online forum. In my

wife's case by the time you find the intersection of what Yasko

recommends / prohibits for food and supplements and what my wife can

tolerate, she has already been taking what she can for some time;

everything Yasko recommends is either not new or not tolerable.

If Yasko works at all, for people who are far enough gone, it's going

to require an inpaitent clinic setting to manage treatment I think.

That of course is not to say it might work well for relatively less ill

people, as-is, although even there, I think it's overly complex for the

average person to grok, much less the average brain-fogged person.

The past doesn't equal the future? Hm. I'd have never guessed they

were two different things. How stupid of me. I will say though, that

"past is prologue" in the real world. My wife has dealt with CFIDS for

30 years and I've been with her for 13 of those years. And it's all

been downhill, overall, and this is not by any means the first

breathless account of some new bleeding edge protocol we've heard.

Forgive us our bad attitude, if that's what you want to dismiss it as,

but check back with me in a decade or so and we'll see how *you're*

doing. By then you'll either be well, or strangely silent about the

wonders of the Yasko Protocol.

Incidentally, we've spent about $2K on Yasko tests and supplements,

read two of her books, watched a couple of her videos, so I think we

have a fairly decent grasp, and we gave it a fair shake, thank you very

much. Even so, I don't think we've completely given up on it, and came

away with some insight; I just don't think it's quite ready for prime

time in my wife's case, and her doctor feels that some of Amy's

conclusions are a bit of a stretch. My wife has seen some tangible

benefit from BH4 supplementation, though, and we feel that at least we

got that much out of it. But I don't think the Yasko protocol is a

slam-dunk for everyone with CFIDS by any means.

Best,

--Bob

davidhall2020 wrote:

> directly addressing infection may be helpful and arguably more

important

> than focusing on the PFO, which is not directly treatable in any

> meaningful way in any case, with our current medical technology.

***This thought is in error. It's completely correctable with the

approaches such as the Yasko approach and OTHERS, even including some

antibiotic therapies, although alone it should be regularly noted that

these have predominantly failed in CFS and end-stage Lyme.

>

> Whether you chose to buy into Yasko's approach or stick with a

more

> traditional antibiotic assault on chronic infection, an important

> missing link is how to deal with herxing, especially in the

presence of

> impaired detox pathways. In both camps, all they really have to

offer

> is a couple of supplements that might help some, and other than

that,

> just tough it out.

***No. You obviously have not done your homework on Yasko. The

enevitable side effects from an effective antimicrobial and detox

protocol she has many several very well thought out support treatments

for people, not just a couple supplements.

That's grand if you can do so. However, some

> patients are so badly impaired in this area that you are just

asking

> them to go through a living hell which they can't endure, and may

> permanently damage them, if not kill them. Even in the best case

> scenario you are talking months or years of "feeling worse so you

can

> feel better". This requires tremendous faith on the part of the

> patient, who in turn generally gets little real support and is

pretty

> much on their own. In other words, in the real world it ain't gonna

work.

***False. It has been working for autistics, who have much of the

same underlying pathology involved as CFS and Lyme. Even the PWCs who

have successfully conquered their illness, as few as these numbers

seem to be, fit the basic pathogenesis proposed by Rich in how they

accomplished this task.

>

> A final comment. At this stage of the game I don't think either

abx

> therapies or Yasko's protocol are sufficiently advanced for the

simple

> reason that I don't see people lining up to testify how they

> unambiguously have their lives back. The closest Yasko comes is a

few

> autistic miracles that happen from time to time that she (maybe

> legitimately) takes credit for and may or may not be somewhat

> transferable to CFIDS cases. And the closest the abx camp comes is

a

> few turnaround / remission stories that happen from time to time

that

> they (maybe legitimately) take credit for. This does not impress

me.

> It isn't a cure. It isn't even very helpful most of the time.

>

> --Bob

***Your cynisism is clear and even understandable. However, this

attitude and understanding of it doesn't make the reasons for it true.

***The past doesn't equal the future and the fact that you are making

errors in simply grasping particular aspects of glutathione

depletion-methylation block approach's should hint at that your

overall conclusions might be errant as well.

***

January 15, 2007

> Incidentally, we've spent about $2K on Yasko tests and supplements,

> read two of her books, watched a couple of her videos, so I think

> we have a fairly decent grasp, and we gave it a fair shake, thank

> you very much. Even so, I don't think we've completely given up on

> it, and came away with some insight; I just don't think it's quite

> ready for prime time in my wife's case, and her doctor feels that

> some of Amy's conclusions are a bit of a stretch. My wife has seen

> some tangible benefit from BH4 supplementation, though, and we feel

> that at least we got that much out of it. But I don't think the

> Yasko protocol is a slam-dunk for everyone with CFIDS by any means.

>

> Best,

>

> --Bob

I suspect it's like any other treatment. If your problem happens to

be exactly what a protocol addresses, then it's going to help. A lot

of us just don't really know what our problem is. I think it's pretty

clear that none of these protocols are ready for prime time anyway,

but people are just muddling along with some promising ideas. My

guess is that information about our own genetic makeup might be more

helpful in the near future as more discoveries are made, so I'm

thinking that testing might not be a total waste of money.

- Kate

January 15, 2007

Yeah, it's the 'slam dunk' thing that kind of riles me up. (I'll take it from Tony because I know he has actually recovered with his method, and I've been helped as well, so I'll listen to his rants because there's always something in it for me :-) I tried to get my cardiologist to perform the heart tests for this PFO thing (I think it's possible I have it as well considering my history with fatigue and migraines) and he laughed me out of the office. Actually, that was one of the worst appointments I've ever had. I was actually reduced to tears, and ended up telling him to stop patronizing me. The company that makes the machine that does the test can refer you to doctors who use it. They're here in San Diego but I never followed up. I posted it somewhere a long time ago, but would be hard pressed to find it in the archives. Anyone remember the name of the machine? We could do a search and perhaps locate the

phone number for references for Amy or anyone who wants to be tested. penny Bob Grommes <bob@...> wrote: , Yasko does not claim the PFO is "completely correctable". I'm not aware that she makes any particular claims about the PFO or indeed says anything at all about it and I've spent some time reading her material, or at least I did about 2-3 months ago. The only direct way to treat the PFO that I know of, which is

installing a patch to close it, is strongly advised against by Cheney himself. Cheney is doing a trial for a growth factor that he hopes will help, but has no result to report yet. So I'm curious how you can call it "completely correctable" and imply that this comes from Yasko (among others). I would actually like to follow up any citations you have because I think this is one of the problems my wife has and I would love to see it "completely corrected".Yes, Yasko's protocol, followed in the correct order, is supposed to ease detox and get detox working more effectively. In theory. However, it is extremely non-trivial to figure the protocol out, especially when you have a lot of food allergies / chemical sensitivities to work around. It's literally a full time job just to sort through the dogpile of posts on Yasko's online forum. In my wife's case by the time you find the intersection of what Yasko recommends / prohibits

for food and supplements and what my wife can tolerate, she has already been taking what she can for some time; everything Yasko recommends is either not new or not tolerable.If Yasko works at all, for people who are far enough gone, it's going to require an inpaitent clinic setting to manage treatment I think.That of course is not to say it might work well for relatively less ill people, as-is, although even there, I think it's overly complex for the average person to grok, much less the average brain-fogged person.The past doesn't equal the future? Hm. I'd have never guessed they were two different things. How stupid of me. I will say though, that "past is prologue" in the real world. My wife has dealt with CFIDS for 30 years and I've been with her for 13 of those years. And it's all been downhill, overall, and this is not by any means the first breathless account of some new bleeding edge protocol we've

heard. Forgive us our bad attitude, if that's what you want to dismiss it as, but check back with me in a decade or so and we'll see how *you're* doing. By then you'll either be well, or strangely silent about the wonders of the Yasko Protocol.Incidentally, we've spent about $2K on Yasko tests and supplements, read two of her books, watched a couple of her videos, so I think we have a fairly decent grasp, and we gave it a fair shake, thank you very much. Even so, I don't think we've completely given up on it, and came away with some insight; I just don't think it's quite ready for prime time in my wife's case, and her doctor feels that some of Amy's conclusions are a bit of a stretch. My wife has seen some tangible benefit from BH4 supplementation, though, and we feel that at least we got that much out of it. But I don't think the Yasko protocol is a slam-dunk for everyone with CFIDS by any

means.Best,--Bobdavidhall2020 wrote: > directly addressing infection may be helpful and arguably moreimportant > than focusing on the PFO, which is not directly treatable in any > meaningful way in any case, with our current medical technology.***This thought is in error. It's completely correctable with theapproaches such as the Yasko approach and OTHERS, even including someantibiotic therapies, although alone it should be regularly noted thatthese have predominantly failed in CFS and end-stage Lyme.> > Whether you chose to buy into Yasko's approach or stick with a more > traditional antibiotic assault on chronic infection, an important > missing link is how to deal with herxing, especially in the presence of > impaired detox pathways. In both camps, all they

really have to offer > is a couple of supplements that might help some, and other than that, > just tough it out. ***No. You obviously have not done your homework on Yasko. Theenevitable side effects from an effective antimicrobial and detoxprotocol she has many several very well thought out support treatmentsfor people, not just a couple supplements.That's grand if you can do so. However, some > patients are so badly impaired in this area that you are just asking > them to go through a living hell which they can't endure, and may > permanently damage them, if not kill them. Even in the best case > scenario you are talking months or years of "feeling worse so you can > feel better". This requires tremendous faith on the part of the > patient, who in turn generally gets little real support and is pretty > much on their own. In other words, in the real world it ain't

gonnawork.***False. It has been working for autistics, who have much of thesame underlying pathology involved as CFS and Lyme. Even the PWCs whohave successfully conquered their illness, as few as these numbersseem to be, fit the basic pathogenesis proposed by Rich in how theyaccomplished this task.> > A final comment. At this stage of the game I don't think either abx > therapies or Yasko's protocol are sufficiently advanced for the simple > reason that I don't see people lining up to testify how they > unambiguously have their lives back. The closest Yasko comes is a few > autistic miracles that happen from time to time that she (maybe > legitimately) takes credit for and may or may not be somewhat > transferable to CFIDS cases. And the closest the abx camp comes is a > few turnaround / remission stories that happen from time to time that > they (maybe legitimately) take

credit for. This does not impress me. > It isn't a cure. It isn't even very helpful most of the time.> > --Bob***Your cynisism is clear and even understandable. However, thisattitude and understanding of it doesn't make the reasons for it true. ***The past doesn't equal the future and the fact that you are makingerrors in simply grasping particular aspects of glutathionedepletion-methylation block approach's should hint at that youroverall conclusions might be errant as well.***

January 15, 2007

Hi ,

that would be really nice. Since I have not been there I wonder how

such a congress works. Do the specialist all talk about their

experience and treatment approaches or do they discuss and release

new studies or info on CFS?

Could it be that CFS has different ways of symptom expression in

everyone of us e.g. some habe low Q while others have strong viral

activy? Unless it's one root cause wouldn't we all need different

ways of treatment and medication?

Greets

> > Hi, all.

> >

> > I just talked to my healthy friend, Potter, who attended

> > Thursday nights 2007 IACFS conference banquet on my behalf(nice to

> > have friends living near the vacinity of important conferences

like

> > this to get the early scoop!). Anyway, he actually got the keynote

> > presention at this banquet featuring Dr Cheney, M.D., Ph.D.,

> > video taped for me(I haven't reviewed it yet), but was able

to

> > communicate fairly effectively the gist of what happened in this

> > presentation.

> >

> > This communication allows me to offer you my impression of what

the

> > hole in the heart issue(called a PFO) is all about in CFS and how

to

> > heal or totally eliminate its possible negative impact, something

I

> > think many of you might appreciate. Of course it should be noted

that

> > the physician's and researcher's section of the 2007 IACFS

conference

> > is still proceding up through Sunday and my complete review of Dr

> > Cheney's presentation may yield more insight, but that said,

follows

> > is what I'm gathering cuts to the chase on the state of the art

in CFS.

> >

> > One, Dr Cheney has further deepened his understanding about the

> > details of the mechanisms following the acquired diastolic heart

> > dysfunction that happens in many PWCs, with the finding that

possibly

> > all PWCs have a PFO(hole in the heart like that found in roughly

> > 20-30% of the normal population). And this finding of PFOs in PWCs

> > Dr Cheney believes, probably accurately so from my layman's point

of

> > view, worsens or increases in size as result of the underlying

> > pathology of CFS and not the other way around.

> >

> > Two, Dr Cheney still has not yet solved in his own mind the cause

of

> > the energy deficit within the cells of PWCs hearts that leads to

CFS

> > diastolic heart dysfunction and the noted downstream

> > PFO size expansion. Apparently this remaining gap in his knowledge

> > left several attendees, including fellow CFS researcher, Rich Van

> > Konynenburg, Ph.D., and others, in a state of befuddlement

following

> > his presentation, as the solution to this heart cell energy

deficit in

> > CFS seems rather apparent to them at this point.

> >

> > As many of you know, Rich stands clear that it is the glutathione

> > depletion-methylation block issue in PWCs that is the cause of

their

> > heart cell energy deficit, their diastolic heart dysfunction and

all

> > other known CFS related symptoms they may have. FWIW and in my own

> > experience given some good quantifiable improvements in my own

case

> > from doing treatments consistent with this hypothesis, I think

Rich

> > has nailed the pathogenesis or root cause of CFS.

> >

> > More details need to be learned and further duplication of

findings

> > needs to be done for everything from CFS pathogenesis to end-stage

> > pathophysiology, diastolic cardiomyopathy being an example of

this, in

> > the research community. Nevertheless, it appears this so far

> > unshakeable hypothesis of cause by Rich is the CFS ringer!

> >

> > This naturally suggests treatment paths, several that have been

> > discussed on this list and others, with the Yasko treatment

approach

> > being one of the lastest and possibly most comprehensive plan

> > available to date. I think following this approach or other

treatment

> > paths consistent with Rich's glutathione depletion-methylation

block

> > hypothesis will eliminate the CFS heart cell energy deficit, the

> > diastolic heart dysfunction that follows and in result reduce to

> > benign size if not complete closure the PFOs currently being

found in

> > PWCs.

> >

> > This is the state of the art in CFS.

> >

>

January 15, 2007

This is another half truth, silly wive's tale. Most serious

treatments taking place in a hospital setting don't involve

herxheimer reactions. The herxheimer reaction was something that

dates back to the middle of ladst century when most drugs and

bacteria weren't as clear as they are today.Your also a living in a

fools paradise if you don't understand that pill antibiotics are

created to deal with todays infectious acquisistion tommorrow.All

there testing involves animals given an infection then treated- no-

one gives a rats ass about an infection that goes in and causes

severe damage that needs prolonged therapies to treat scar tissue and

the like...and twhat's never discussed is the low levels of

stimulation that many treatments bring to these area's...Low level of

drug reaching infection often stimulates it's growth..

Another irritation for me is the freakin crap that keeps getting

served up. The most oimportant element in a hospital setting is

potassium.. -when you have muscle weekness- the main ingredient is

POTASSIUM.How the fuck can I sit here time and tiome again and read

yasko this, cheney that, when they don't even consider what's common

medical practise as EXTREMELY RELEVANT TO OUR CAUSE.. Remember the

most succesfull protocol is blasi salts which are loaded with

potassium and even then the levels are possably nowhere near enough

to cater for a long term inflammed individual...

tony

>

> > Whether you chose to buy into Yasko's approach or stick with a

more

> > traditional antibiotic assault on chronic infection, an important

> > missing link is how to deal with herxing, especially in the

presence

> of

> > impaired detox pathways. In both camps, all they really have to

> offer

> > is a couple of supplements that might help some, and other than

> that,

> > just tough it out.

>

> Not quite 100% true. While I have no knowledge/opinion on such

> practices myself, I think at least a few doctors have used potent

> immunosuppressives, including steroids, in conjunction with

> antibacterial therapy. For example, Stratton mentions such in his

> patents. How effective it is, I have no information on.

>

January 15, 2007

With pseudonomads you can be lucky and it can go down quite regularly

to amoxacillin...There's many variables and many elemnts from the

environment that can favour the bugs over the treatments.In other

words if your in a hot humid environemnt your battle agfainst this

organism tilts in it's favour..

>

> > to make sure it was gone. I'm pretty sure it was leftovers from

a

> case of pneumonia I had about 2 or 3 years before that, and once it

> was treated I felt more energetic and healthy than I had in a long

> time.

>

> Thanks, that was a very interesting anecdote.

>

> > Especially if you are reasonably healthy in the first place I

> think things like that creep up on you gradually so that you don't

> really even realize how bad off you are until it gets fixed.

>

> Certainly very plausible.

>

> > I believe you are saying that pseudomonas are stimulated to grow

> by abx. What kills them then? Or is it a matter of which abx in

> which doses?

>

> Few classes of abx can permeate the pseudomonad cytoplasm, because

> its outer membrane is so impermeable. The drugs come though that

> outer membrane very slowly, and pseudomonads, like all bacteria,

> have some capability to pump drugs out. In this case, for most abx,

> the rate of entry does not exceed the rate of pumping out (to

> simplify slightly), so the drug concentration achieved inside the

> pseudomonad cell is close to zero.

>

> Assuming normally-growing, normally-drug-sensitive pseudomonads are

> a common undiagnosed cause of chronic disease, then there is a

> prediction that follows inextricably from this hypothesis: rapid

> improvement should be seen in a person who recieves any of the

drugs

> to which pseudomonads are sensitive. I am not sure how often any of

> the anti-pseudomonad drugs are used today (outside of cystic

> fibrosis treatment), but my first guess would be that they are used

> often enough that many chronic illness patients have probably taken

> them at one time or another. Yet I haven't heard anything firsthand

> or from scholarly sources about any resulting miracles. Which is

not

> to say that it hasn't ever happened.

>

> If you really want to make a proper evaluation, just look up all

the

> anti-pseudo drugs and investigate them to see if they are still

used.

>

January 15, 2007

Hi, Penny.

I answered a's questions and comments, it wasn't about selling

Yasko. If you look at the start of this thread, it was clear I was

stating my views on how Dr Cheney's current take stated at the CFS

conference is making many now think he's lost touch regarding cause

and how Rich's view seems stronger than ever(the Yasko approach is

just ONE example of how this can be addressed).

I can't vouch for whether this or other approaches consistent with

Rich's view will work towards cure, I made it clear that I think the

jury is still out. And as you know, I never called you or anyone on

this list stupid nor think this is true.

A few people made snippy comments, were mistaken in some facts and I

responded appropriately. You should keep me around and not be so

reactive to me giving back what some of this lists members dish out.

I've had as bad a case of CFS/lyme as anyone. My views are valid.

January 15, 2007

Hi, Bob.

<bob@...> wrote:

>

> , Yasko does not claim the PFO is " completely correctable " . I'm

> not aware that she makes any particular claims about the PFO or indeed

> says anything at all about it and I've spent some time reading her

> material, or at least I did about 2-3 months ago.

***I didn't say she made this claim nor do I know or not whether she

is aware of PFOs in PWCs.

The only direct way

> to treat the PFO that I know of, which is installing a patch to close

> it, is strongly advised against by Cheney himself. Cheney is doing a

> trial for a growth factor that he hopes will help, but has no result to

> report yet. So I'm curious how you can call it " completely

correctable "

> and imply that this comes from Yasko (among others).

***I said this based on Rich's hypothesis and my take of Rich's

hypothesis at that. Yasko hasn't commented as far as I know.

I would actually

> like to follow up any citations you have because I think this is one of

> the problems my wife has and I would love to see it " completely

corrected " .

***If PFOs are a problem in CFS, I think that they can be completely

corrected by approaches that effectively address methylation blocks.

I know that research has no citations that can either support or

reject this view on CFS PFOs at this point.

>

> Yes, Yasko's protocol, followed in the correct order, is supposed to

> ease detox and get detox working more effectively. In theory.

However,

> it is extremely non-trivial to figure the protocol out, especially when

> you have a lot of food allergies / chemical sensitivities to work

> around. It's literally a full time job just to sort through the

dogpile

> of posts on Yasko's online forum.

***I agree it takes a lot of investment of many things to be able to

do do it. Who doesn't have this gripe?

In my wife's case by the time you

> find the intersection of what Yasko recommends / prohibits for food and

> supplements and what my wife can tolerate, she has already been taking

> what she can for some time; everything Yasko recommends is either not

> new or not tolerable.

***You're not a PWC yourself? Does your wife participate at the

CFS_Yasko list to help find ways from other PWCs in how to implement

it with a little less trouble?

>

> If Yasko works at all, for people who are far enough gone, it's

going to

> require an inpaitent clinic setting to manage treatment I think.

***You may be right about this, for some if not many.

>

> That of course is not to say it might work well for relatively less ill

> people, as-is, although even there, I think it's overly complex for the

> average person to grok, much less the average brain-fogged person.

***I tend to agree. It's a tough road, even if it turns out to work

brilliantly.

>

> The past doesn't equal the future? Hm. I'd have never guessed they

> were two different things. How stupid of me. I will say though, that

> " past is prologue " in the real world.

***I don't think you're stupid, but you were giving attitude and some

mistakes in fact stated so righteously that it did call me to give

back to you what you were dishing out. I think you can get me about

this and I do agree the past tells a lot though not all about the

drift of life.

My wife has dealt with CFIDS for

> 30 years and I've been with her for 13 of those years. And it's all

> been downhill, overall, and this is not by any means the first

> breathless account of some new bleeding edge protocol we've heard.

> Forgive us our bad attitude, if that's what you want to dismiss it as,

> but check back with me in a decade or so and we'll see how *you're*

> doing.

***No problem. I will have conquered this illness for my case by then,

no doubt, so hope your wife and you are still around(I've been sick

for 31 yrs, full blown CFIDS for the last 20).

By then you'll either be well, or strangely silent about the

> wonders of the Yasko Protocol.

***Oh you don't know me at all. I've knocked every protocol that

hasn't worked in the way it didn't work and made my views public.

I see no reason to change this pattern for anything else that may or

may not be found to be effective for CFS treatment in the future.

>

> Incidentally, we've spent about $2K on Yasko tests and supplements,

read

> two of her books, watched a couple of her videos, so I think we have a

> fairly decent grasp, and we gave it a fair shake, thank you very much.

> Even so, I don't think we've completely given up on it, and came away

> with some insight; I just don't think it's quite ready for prime

time in

> my wife's case,

***Sorry to here this.

and her doctor feels that some of Amy's conclusions are

> a bit of a stretch. My wife has seen some tangible benefit from BH4

> supplementation, though, and we feel that at least we got that much out

> of it. But I don't think the Yasko protocol is a slam-dunk for

everyone

> with CFIDS by any means.

***I never said this, actually was endorsing Rich's hypothesis of

cause more to the point. The Yasko approach is one of many now that

can address, more or less, what he's discovered.

>

> Best,

>

> --Bob

***

January 15, 2007

>

> Hi, Cort.

>

> My take is Rich's hypothesis of pathogenesis of CFS is a dramatic

> discovery, but even more so, the most rational and grounded theory of

> cause to date, something Dr Cheney seems to miss.

>

Any physician can give many reasons for cardiac insuffeciancy -

hypometabolism (from either thyroid defeciency or blockage of the

thyroid hormone receptor sites by glycation processes) - pre

congestive heart failure - weaknesses in the energy pathways - brain

chemical defeciency (example: depression causes lethargy and lethargy

causes the heart to lose it's patency and it becomes weak - this is

the reason why exercise can help those who are able to do it)- another

brain chemical issue is Seratonin if in excess (in relationship to

Dopamine)can cause lack of motivation and energetic affect - chronic

inflammatory processes are a common cause of heart problems, this can

contribute to conductivity in many ways (a very helpful paper to read

on this subject is Dr. Myhill's paper on Cardiac mitochondrial

disease as a prmary cause of CFS - this is related to Cheney's theory)

The major stressors on the heart are stress itself (exogenous

stressors), lethargy ( a heart that is never exercised loses it's

ability to be stressed and we become exercise intolerant - actually

activity intolerant as many people at this stage lose their motivation

to do most things), chronic infllamations of the heart and or the

pericardium caused by excesses of cytokines in the local areas -

imbalances in the ANS - CNS overstimulation, caused by many things but

most often excess adrenergic response caused by the imbalance in the

ANS - chronic liver disease because of the build up of toxins in the

blood, these toxins interfere with electrical conductivity - the same

is true of chronic kidney disease which creates toxic conditions of

the blood - these and many other toxins interfere with conductivity

and make the heart less effecient - one catagory of toxins which

interfere with electrical conductivity is heavy metals- iron, mercury,

cadmium, etc. are major cardiac toxins.

I agree with Cheney that cardiac insuffeciency - caused by many

factors - is a major component of advanced CFS but in most cases is

not the 'original' cause.But once fatigue processes and the resultant

lethargic conditions are established then surely and logically the

heart will be weakened causing all of the fatigue symptoms to become

worse and more serious.

The most important issue in many of these cases is the ANS imbalance -

the overstimulation of the Sympathetic system and the underactivation

of the Parasympathetic causes a chronic excess of circulationg

catecholomines these catecholomines are the cause of the excess high

tonus of the SNS which does not allow one to ever fully relax ( a huge

stress)- this is the cause of the diastolic dysfunction that Cheney

referes to - the heart never relaxes.

January 15, 2007

'

How can you give this croc when your not addressing TOXIN CREATING

INFECTION???????I don't think u realise that infections create toxins

that cause harm to humans. Not addressing this isn't going to make

anyone well- regardless of whatever theory your following.All you can

possably do by following anyones protocol is lower the amount of

amino acids, and other proteins not to fuel this onslaught.I

definately believe in having a multiple approach but reading that

your going to bring home the bacon on rich von kronkrnberger crap is

REDICULOUS...The guy hasn't the slightest idea what is truly wrong

with us. He thinks we have fatigue and have had a lot of stressfull

situations. Please spare me and just get to the ingredients required

for people not to fuel there inflammatory state.

tony

> >

> > , Yasko does not claim the PFO is " completely correctable " .

I'm

> > not aware that she makes any particular claims about the PFO or

indeed

> > says anything at all about it and I've spent some time reading

her

> > material, or at least I did about 2-3 months ago.

>

> ***I didn't say she made this claim nor do I know or not whether she

> is aware of PFOs in PWCs.

>

> The only direct way

> > to treat the PFO that I know of, which is installing a patch to

close

> > it, is strongly advised against by Cheney himself. Cheney is

doing a

> > trial for a growth factor that he hopes will help, but has no

result to

> > report yet. So I'm curious how you can call it " completely

> correctable "

> > and imply that this comes from Yasko (among others).

>

> ***I said this based on Rich's hypothesis and my take of Rich's

> hypothesis at that. Yasko hasn't commented as far as I know.

>

> I would actually

> > like to follow up any citations you have because I think this is

one of

> > the problems my wife has and I would love to see it " completely

> corrected " .

>

> ***If PFOs are a problem in CFS, I think that they can be completely

> corrected by approaches that effectively address methylation blocks.

> I know that research has no citations that can either support or

> reject this view on CFS PFOs at this point.

>

> >

> > Yes, Yasko's protocol, followed in the correct order, is supposed

to

> > ease detox and get detox working more effectively. In theory.

> However,

> > it is extremely non-trivial to figure the protocol out,

especially when

> > you have a lot of food allergies / chemical sensitivities to work

> > around. It's literally a full time job just to sort through the

> dogpile

> > of posts on Yasko's online forum.

>

> ***I agree it takes a lot of investment of many things to be able to

> do do it. Who doesn't have this gripe?

>

> In my wife's case by the time you

> > find the intersection of what Yasko recommends / prohibits for

food and

> > supplements and what my wife can tolerate, she has already been

taking

> > what she can for some time; everything Yasko recommends is either

not

> > new or not tolerable.

>

> ***You're not a PWC yourself? Does your wife participate at the

> CFS_Yasko list to help find ways from other PWCs in how to implement

> it with a little less trouble?

>

> >

> > If Yasko works at all, for people who are far enough gone, it's

> going to

> > require an inpaitent clinic setting to manage treatment I think.

>

> ***You may be right about this, for some if not many.

>

> >

> > That of course is not to say it might work well for relatively

less ill

> > people, as-is, although even there, I think it's overly complex

for the

> > average person to grok, much less the average brain-fogged person.

>

> ***I tend to agree. It's a tough road, even if it turns out to work

> brilliantly.

>

> >

> > The past doesn't equal the future? Hm. I'd have never guessed

they

> > were two different things. How stupid of me. I will say though,

that

> > " past is prologue " in the real world.

>

> ***I don't think you're stupid, but you were giving attitude and

some

> mistakes in fact stated so righteously that it did call me to give

> back to you what you were dishing out. I think you can get me about

> this and I do agree the past tells a lot though not all about the

> drift of life.

>

> My wife has dealt with CFIDS for

> > 30 years and I've been with her for 13 of those years. And it's

all

> > been downhill, overall, and this is not by any means the first

> > breathless account of some new bleeding edge protocol we've

heard.

> > Forgive us our bad attitude, if that's what you want to dismiss

it as,

> > but check back with me in a decade or so and we'll see how

*you're*

> > doing.

>

> ***No problem. I will have conquered this illness for my case by

then,

> no doubt, so hope your wife and you are still around(I've been sick

> for 31 yrs, full blown CFIDS for the last 20).

>

> By then you'll either be well, or strangely silent about the

> > wonders of the Yasko Protocol.

>

> ***Oh you don't know me at all. I've knocked every protocol that

> hasn't worked in the way it didn't work and made my views public.

> I see no reason to change this pattern for anything else that may or

> may not be found to be effective for CFS treatment in the future.

>

> >

> > Incidentally, we've spent about $2K on Yasko tests and

supplements,

> read

> > two of her books, watched a couple of her videos, so I think we

have a

> > fairly decent grasp, and we gave it a fair shake, thank you very

much.

> > Even so, I don't think we've completely given up on it, and came

away

> > with some insight; I just don't think it's quite ready for prime

> time in

> > my wife's case,

>

> ***Sorry to here this.

>

> and her doctor feels that some of Amy's conclusions are

> > a bit of a stretch. My wife has seen some tangible benefit from

BH4

> > supplementation, though, and we feel that at least we got that

much out

> > of it. But I don't think the Yasko protocol is a slam-dunk for

> everyone

> > with CFIDS by any means.

>

> ***I never said this, actually was endorsing Rich's hypothesis of

> cause more to the point. The Yasko approach is one of many now that

> can address, more or less, what he's discovered.

>

> >

> > Best,

> >

> > --Bob

>

> ***

>

January 15, 2007

Hi, Tony.

<dumbaussie2000@...> wrote:

>

> '

> How can you give this croc when your not addressing TOXIN CREATING

> INFECTION???????

***This in fact is exactly one of the key things being addressed. You

seem to have missed this point.

I don't think u realise that infections create toxins

> that cause harm to humans.

***Oh, no, we're in agreement about this. Infections and the toxins

they create are among the top methylation blocks in CFS, just not the

only ones.

Not addressing this isn't going to make

> anyone well- regardless of whatever theory your following.All you can

> possably do by following anyones protocol is lower the amount of

> amino acids, and other proteins not to fuel this onslaught.I

> definately believe in having a multiple approach but reading that

> your going to bring home the bacon on rich von kronkrnberger crap is

> REDICULOUS...

***No it isn't. You agree with him in more ways than you seem to be

aware.

The guy hasn't the slightest idea what is truly wrong

> with us. He thinks we have fatigue and have had a lot of stressfull

> situations.

***Well, you're clearly misconceiving what he is stating about

methylation blocks. He knows there are a lot more serious things

going on than just fatigue in CFS and he knows emotional stress can't

remotely explain all the bad and persistent symptoms.

***You two are closer in views that what you're realizing. And as far

as approaches you're the vanguard for antibiotic use more than

anything and he only part ways with you in that he believes in a

comprenhensive approach, which for some should include antibiotics, in

order to get out of the CFS hole.

Please spare me and just get to the ingredients required

> for people not to fuel there inflammatory state.

> tony

***The ingredients are several and will be variable according the

individual PWCs needs. My individual use of treaments which has

lowered infectious load and toxins in me, consequently reducing

inflammation, is comprehensive and my own invention, borrowing from

several doctor's protocols.

***I'm not ready to offer this yet in detail and really prefer to get

my improvements to the point where I can in fact say I've conquered my

CFS completely from what I'm doing. Nevertheless, bits of Dr Cheney's

work, bits from Rich's suggestions for treatment in the Experimental

list archives, bits from Ken's suggestions, bits of Yasko's approach

and Payne's in Virgnia are the general building blocks to my

individual cases improvements.

***Antibiotics don't apply at this point and may never apply. They

certainly didn't do anything much for me in the past, but that's just

my case.

***

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Re: Dr Cheney's keynote presentation at the 2007 IACFS Conference

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