Re: Doctor Cheney's latest thinking on CFS

[Guest guest]

-----Message d'origine-----

De : Bell [mailto:bellvictoria@...]

Envoyé : 10 avril, 2005 13:40

À :

Objet : Re: Doctor Cheney's latest thinking on CFS

Bill, and All,

Bill, thank you for offering the link below to Mark's interview with

Dr. Natelson. du Pre's letter to the CFSAC posted to Co-Cure

offers both Lerner and Peckerman/Natelson, et al research, following

his letter:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0504a & L=co-cure & F= & S= & P=6360

. Maybe someone has links to these, not already

posted?

I would like to express an enormous debt of gratitude to Carol for

once more undertaking the arduous task of interpolating extremely

long and complex transcripts. As a Cheney patient, I know these

transcripts are in the form of direct exchanges with micro-

pathophysiological data - as Dr. Cheney delivers, with statements,

questions, and answers from both the patient and Dr. Cheney, in

interactive dialog. Carol has crafted these into a cohesive,

comparatively very easy read (believe me! and those of you who have

been a Cheney patient will know so well). I know it is still

complex, but Carol has completed a heroic task.

At the same time, as you are doing, it is important to draw patients'

attention to information that is important to highlight and " catch, "

to ensure it isn't misinterpreted in a 'sound-byte' way.

When the link is up to order the video of Dr. Cheney's talk in Texas,

as those of you know who have the 2001 video, that will be worth

every penny. As Carol indicates, Dr. Cheney's work is evolving every

day.

Keep up the good work of extracting information and commenting! We

will all be grateful and it will benefit everyone.

Kudos to All!

> >

> > Hi, all.

> >

> > Carol Sieverling has posted a write-up of Dr. Cheney's

latest

> > thinking on CFS on the Dallas-Fort Worth CFIDS support group

site. I

> > think it's pretty exciting stuff. Prof. Marty Pall's

peroxynitrite

> > theory is a big part of it.

> >

> > The url is as follows:

> >

> > http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

> >

> > Rich

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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

--

[Guest guest]

This is interesting. I still think you have to get rid of the

infection, which is the root of the maladaptive responses, but...

I think he's on the right track with a lot of it, including the idea

that pathogens may sequester heavy metals (not just mercury, imo).

Its a little eerie to me--how much of what he recommends I

intuitively or instincitvley already do:

Raw cheese, raw milk, lots of eggs, magnesium IV, salt (I'm going to

make his salt and potassium brew, I think), potassium, temezapem

(less potent than klonipin, but I intuitively feel the extra " gaba "

helps my system) and on and on. Glutathione IV. I don't use hormones

or trust them, and for some reason since getting lyme I have the

opposite response to B-12, it revs me up too much. But already by

myself I use about 70% of what he recommends.

>

> Hi, all.

>

> Carol Sieverling has posted a write-up of Dr. Cheney's latest

> thinking on CFS on the Dallas-Fort Worth CFIDS support group site.

I

> think it's pretty exciting stuff. Prof. Marty Pall's peroxynitrite

> theory is a big part of it.

>

> The url is as follows:

>

> http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

>

> Rich

[Guest guest]

What a fascinating article!

Thank you so much for posting it, Rich.

It seems that Dr. Cheney's heart transplant was something more than

serendipitous, having led him to this theory/analysis.

As Jill said, I do many of the things suggested. I was surprised to

find I also do something he says we shouldn't: I take Provigil.

Yikes! I don't want to do anything to further hurt my brain.

Does anyone know how to measure peroxynitrite, or if it is directly

measurable?

As one with adrenal insufficiency who had major trouble on the MP

with low blood pressure, I found Dr. Cheney's affirmation of the

effects of Benicar on lowering aldosterone and blood volumes helpful:

" Angiotensin II has two receptors that we know of, and we only

understand the first, AT1. When Angiotensin II binds to AT1, it

increases the hormone Aldosterone, which in turn increases blood

volume. Big issue! If you block AT1 with an ARB [like Benicar], down

will go your Aldosterone, and down will go your blood volume, and you

could be in a heap of trouble. "

Finally, Cheney's report of the study in which all 13 ICM patients

whose heart muscle biopsies showed them to be 23,000 times higher in

mercury than the controls floors me. How could that happen? What

variety of " cardiotropic pathogen " could do that? I knew there was a

high level of mercury in the brain tissue of Alzheimer's victims, but

the heart concentration is all new to me. Anybody have any ideas?

Wishing us all well,

> >

> > Hi, all.

> >

> > Carol Sieverling has posted a write-up of Dr. Cheney's

latest

> > thinking on CFS on the Dallas-Fort Worth CFIDS support group

site.

> I

> > think it's pretty exciting stuff. Prof. Marty Pall's

peroxynitrite

> > theory is a big part of it.

> >

> > The url is as follows:

> >

> > http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

> >

> > Rich

[Guest guest]

rich

this is a great post. thank you. also, thank you for your post on my

question of LipoGSH and Immunopro together...

anyway, the one area i think this theory gets pretty cloudy is

eitiology.

i'm surprised that there was no mention of DR Lerner's work. he has

been talking about Cardiomyopathy in PWCs for almost ten years now.

he also has done biopsy studies of heart tissue in PWCs, and found

viral activity.

maybe it is time to relook at these studies, and the central theory of

incomplete herpes viral replication in cardiac tissue of PWCs as the

trigger for the Cardiomyopathy.

personally, i think it is pretty clear that the longer we are sick the

more there is a build up of toxins and toxic material in us (thus

peroxynitrite problems, etc..), but from a causal standpoint, isn't it

possible that a chronicly activated, incompletely replicating herpes

virus is at the core of our problem.

as i undertand it, when a virus is in the state of incomplete

replication it doesn't kill the infected cells in the same that it does

when it is in complete replication. it causes more of a slow death by

affecting cellular function gradually until the cell eventually dies.

also incomplete replication makes the virus able to avoid immune

clearance because the structural regions of the virus that immune

system uses to identify the virus are not being replicated. thus the

immune system is not able identify the infected cells to get rid of

them.

some of these Lerner studies (and the peckerman studies) are available

at this site, and might be worth a read:

http://www.cfids-cab.org/MESA/Lerner.html

take a look at the Lerner article on the " IgM Serum Antibodies to

Human Cytomegalovirus Nonstructural Gene Products... " . i thought it was

really interesting.

thanks

bill

PS - the fact that not all people respond to antiviral treatment

doesn't to me mean that a active virus is not the cause. it could be

that once all the other systems of our body begin to be affected that

we need a more comprehensive treatment that includes antivirals to get

better.

what about a combo of antivirals and glutathione (builders or

supplementers)?

>

> Hi, all.

>

> Carol Sieverling has posted a write-up of Dr. Cheney's latest

> thinking on CFS on the Dallas-Fort Worth CFIDS support group site. I

> think it's pretty exciting stuff. Prof. Marty Pall's peroxynitrite

> theory is a big part of it.

>

> The url is as follows:

>

> http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

>

> Rich

[Guest guest]

Thanks Rich - Fascinating! Note to list the Perckerman article Cheney

refers to is available free online at:

http://www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf

Regards, Blake

rvankonynen wrote:

>

> Hi, all.

>

> Carol Sieverling has posted a write-up of Dr. Cheney's latest

> thinking on CFS on the Dallas-Fort Worth CFIDS support group site. I

> think it's pretty exciting stuff. Prof. Marty Pall's peroxynitrite

> theory is a big part of it.

>

> The url is as follows:

>

> http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

>

> Rich

[Guest guest]

Bill, and All,

Bill, thank you for offering the link below to Mark's interview with

Dr. Natelson. du Pre's letter to the CFSAC posted to Co-Cure

offers both Lerner and Peckerman/Natelson, et al research, following

his letter:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0504a & L=co-

cure & F= & S= & P=6360. Maybe someone has links to these, not already

posted?

I would like to express an enormous debt of gratitude to Carol for

once more undertaking the arduous task of interpolating extremely

long and complex transcripts. As a Cheney patient, I know these

transcripts are in the form of direct exchanges with micro-

pathophysiological data - as Dr. Cheney delivers, with statements,

questions, and answers from both the patient and Dr. Cheney, in

interactive dialog. Carol has crafted these into a cohesive,

comparatively very easy read (believe me! and those of you who have

been a Cheney patient will know so well). I know it is still

complex, but Carol has completed a heroic task.

At the same time, as you are doing, it is important to draw patients'

attention to information that is important to highlight and " catch, "

to ensure it isn't misinterpreted in a 'sound-byte' way.

When the link is up to order the video of Dr. Cheney's talk in Texas,

as those of you know who have the 2001 video, that will be worth

every penny. As Carol indicates, Dr. Cheney's work is evolving every

day.

Keep up the good work of extracting information and commenting! We

will all be grateful and it will benefit everyone.

Kudos to All!

> >

> > Hi, all.

> >

> > Carol Sieverling has posted a write-up of Dr. Cheney's

latest

> > thinking on CFS on the Dallas-Fort Worth CFIDS support group

site. I

> > think it's pretty exciting stuff. Prof. Marty Pall's

peroxynitrite

> > theory is a big part of it.

> >

> > The url is as follows:

> >

> > http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

> >

> > Rich

[Guest guest]

One more thing that may be easily missed while " intaking " all the

information Carol posted.

In the upper right hand corner of the first page of the article, is a

link entitled: " USEFUL DEFINITIONS. " This is a comprehensive list

explaining the medical terminology (jargon) and I think we will all

find it useful and a wonderful contribution, achievement, and adjunct

to the article.

[Guest guest]

This was a cool read, but I dont find it convincing. It seems hes

saying that most disabling CFIDS dysfunction is causally downstream of

poor perfusion.

I agree most of the dysfunctions could be downstream of poor perfusion

(at least in part), but what about unequivocally immunological sx like

sore throat and swollen lymph glands? How are those linked? I dont

know, but I'm guessing Cheney himself never had those symptoms, or if

he did, didnt see them resolve in response to his heart transplant.

Further, why explore low cardiac output as the prime cause of poor

perfusion without considering hypercoagulation and microvascular

injury/occlusion? (I was mistaken last week when I said microvascular

injury was universal in lyme, but it is common and could possibly be

universal in lyme patients with disabling fatigue; see Nanagara 95 and

Steere 88.)

Cheney addresses dysregulation of the microcirculation due to high

levels of NO, but the cause he mentions for the elevated NO is the

presence of antigen - which he does not link to poor cardiac output.

Keeping in mind that Bb readily causes chronic carditis (which can be

the sole lesion in spirochetal infections of relatively resistant lab

mammals), why not reckon that the poor cardiac output in CFIDS might

be a result of poor perfusion of the heart, due to microvasculitis in

the heart muscle?

It seems like all the observations in Cheneys account can be reckoned

in terms of vasculitis rather than heart damage.

[Guest guest]

Rich, I hope as consider this we can enlist your participation in a

good, rigorous, balanced assessment of these ideas. I don't even

want to make a general statement at this point.

I urge others to take their time, and apply the same type of

critical thinking to this that they have to other novel

interpretations of the pathology of CFS. We rarely regret taking

extra time to think something over. In my opinion, this one needs a

good bit of time.

>

> Hi, all.

>

> Carol Sieverling has posted a write-up of Dr. Cheney's latest

> thinking on CFS on the Dallas-Fort Worth CFIDS support group

site. I

> think it's pretty exciting stuff. Prof. Marty Pall's

peroxynitrite

> theory is a big part of it.

>

> The url is as follows:

>

> http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

>

> Rich

[Guest guest]

These are excellent points, .

I hope that those who are bringing this to our attention will engage

them.

I would like it if someone could connect a few dots for us, because

as I read the new material I am wanting to know about infection -

the pathogen part of 'pathogenesis' - and get a clearer picture of

how we get from an infectious agent (a la Incline Village) to this

putative cardiac dysfunction.

I haven't really read anything that makes it clear to me how Cheney

views the infection side of things.

I would also like to hear more from patients who identify with the

CFIDS diagnosis, because the material seems to rest on some general

characterizations of the 'most serious' cases and I am not

immediately convinced that these are accurate. I'm not saying they

aren't, but I'd like to hear from patients on that point.

I would also like some clarification about the technology involved

in identifying this " Q " factor. How rarefied is it? Apparently there

are two sides to that question. Access to the technology is one, but

assuming that is available one must also dig deep to determine if

the proper algorithm is being used? If that algorithm is plainly

superior, as the article implies, can we look forward to its

universal adoption?

I hope that we will not be required to defer to benign assumptions

about Cheney's veracity. The 'physician as patient' angle has perils

as well as promise, and while I would not accuse anyone here of

belonging to it, Cheney clearly has his own cult following, made of

people who do not question the scientific validity of his

declarations any more than the Engineer's admirers question his.

I hope too that no one here will allow their feelings about the

Engineer to color their response to this new material from Cheney,

which both salutes and departs from the Engineer's own notions.

That is not a good basis on which to evaluate anything, in my

opinion.

Finally, unless I am very mistaken Cheney is asserting a uniform

pattern that distinguishes the truly disabled from the merely

debilitated. That aspect of this, to me, almost cries out for

skeptical investigation.

A lot of reservations, I know. They do not, yet, add up to an

overall response. I can see why some are quite excited by this

material, but for the purposes of discussion I am much more

comfortable donning my skeptic's hat (actually, I never take it off,

by now it is pretty well attached to my noggin).

As usual , you give me fresh reasons for being thankful of your

participation here.

>

> This was a cool read, but I dont find it convincing. It seems hes

> saying that most disabling CFIDS dysfunction is causally

downstream of

> poor perfusion.

>

> I agree most of the dysfunctions could be downstream of poor

perfusion

> (at least in part), but what about unequivocally immunological sx

like

> sore throat and swollen lymph glands? How are those linked? I dont

> know, but I'm guessing Cheney himself never had those symptoms, or

if

> he did, didnt see them resolve in response to his heart transplant.

>

> Further, why explore low cardiac output as the prime cause of poor

> perfusion without considering hypercoagulation and microvascular

> injury/occlusion? (I was mistaken last week when I said

microvascular

> injury was universal in lyme, but it is common and could possibly

be

> universal in lyme patients with disabling fatigue; see Nanagara 95

and

> Steere 88.)

>

> Cheney addresses dysregulation of the microcirculation due to high

> levels of NO, but the cause he mentions for the elevated NO is the

> presence of antigen - which he does not link to poor cardiac

output.

>

> Keeping in mind that Bb readily causes chronic carditis (which can

be

> the sole lesion in spirochetal infections of relatively resistant

lab

> mammals), why not reckon that the poor cardiac output in CFIDS

might

> be a result of poor perfusion of the heart, due to microvasculitis

in

> the heart muscle?

>

> It seems like all the observations in Cheneys account can be

reckoned

> in terms of vasculitis rather than heart damage.

[Guest guest]

> Finally, Cheney's report of the study in which all 13 ICM patients whose heart

> muscle biopsies showed them to be 23,000 times higher in mercury than the

> controls floors me.

Hi ,

We take the mercury warnings seriously. We used to eat a lot of salmon, but

when we read that farm salmon was high in mercury we switched to relatively

mercury-free wild Alaskan salmon. Or so we thought.

In yesterday's New York Times there's an article that suggests that most

stores claiming to sell wild salmon are actually selling farm salmon. In

the New York City area, they did tests on " wild salmon " from several stores

and found that only one sample was genuine, wild salmon. Samples from six

other stores proved to be farm raised.

I have noticed that what passes for wild salmon in our town appears to be

suspiciously orange.

> http://www.nytimes.com/2005/04/10/dining/10salmon.html?

Sue ,

Upstate New York

[Guest guest]

In a message dated 4/10/2005 10:40:42 AM Pacific Daylight Time,

bellvictoria@... writes:

I would like to express an enormous debt of gratitude to Carol for

once more undertaking the arduous task of interpolating extremely

long and complex transcripts

I second this!!

[Guest guest]

Wild salmon should have a large well developed fan shape tail . Farmed

salmon usually have very puny tails because they live in very restricted

cages

[infections] Re: Doctor Cheney's latest thinking on

CFS

>

>> Finally, Cheney's report of the study in which all 13 ICM patients whose

>> heart

>> muscle biopsies showed them to be 23,000 times higher in mercury than the

>> controls floors me.

>

> Hi ,

>

> We take the mercury warnings seriously. We used to eat a lot of salmon,

> but

> when we read that farm salmon was high in mercury we switched to

> relatively

> mercury-free wild Alaskan salmon. Or so we thought.

>

> In yesterday's New York Times there's an article that suggests that most

> stores claiming to sell wild salmon are actually selling farm salmon. In

> the New York City area, they did tests on " wild salmon " from several

> stores

> and found that only one sample was genuine, wild salmon. Samples from six

> other stores proved to be farm raised.

>

> I have noticed that what passes for wild salmon in our town appears to be

> suspiciously orange.

>

>> http://www.nytimes.com/2005/04/10/dining/10salmon.html?

>

> Sue ,

> Upstate New York

>

>

>

>

>

>

>

[Guest guest]

Hi, .

> >

> > This was a cool read, but I dont find it convincing. It seems hes

> > saying that most disabling CFIDS dysfunction is causally

> downstream of

> > poor perfusion.

> >

> > I agree most of the dysfunctions could be downstream of poor

> perfusion

> > (at least in part), but what about unequivocally immunological

sx

> like

> > sore throat and swollen lymph glands? How are those linked? I

dont

> > know, but I'm guessing Cheney himself never had those symptoms,

or

> if

> > he did, didnt see them resolve in response to his heart

transplant.

> >

> > Further, why explore low cardiac output as the prime cause of

poor

> > perfusion without considering hypercoagulation and microvascular

> > injury/occlusion? (I was mistaken last week when I said

> microvascular

> > injury was universal in lyme, but it is common and could

possibly

> be

> > universal in lyme patients with disabling fatigue; see Nanagara

95

> and

> > Steere 88.)

> >

> > Cheney addresses dysregulation of the microcirculation due to

high

> > levels of NO, but the cause he mentions for the elevated NO is

the

> > presence of antigen - which he does not link to poor cardiac

> output.

> >

> > Keeping in mind that Bb readily causes chronic carditis (which

can

> be

> > the sole lesion in spirochetal infections of relatively

resistant

> lab

> > mammals), why not reckon that the poor cardiac output in CFIDS

> might

> > be a result of poor perfusion of the heart, due to

microvasculitis

> in

> > the heart muscle?

> >

> > It seems like all the observations in Cheneys account can be

> reckoned

> > in terms of vasculitis rather than heart damage.

[Guest guest]

Hi, .

> >

> > Hi, all.

> >

> > Carol Sieverling has posted a write-up of Dr. Cheney's

latest

> > thinking on CFS on the Dallas-Fort Worth CFIDS support group

> site. I

> > think it's pretty exciting stuff. Prof. Marty Pall's

> peroxynitrite

> > theory is a big part of it.

> >

> > The url is as follows:

> >

> >

http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

> >

> > Rich

[Guest guest]

Hi, .

I addressed the immunological correlation in an ealier message.

I think you raise good points about the possibilities of

hypercoagulation or vasculitis producing the heart dysfunction. I

guess the vasculitis issue could be resolved by examination of

hearts at autopsy, and hypercoagulation could be studied with the

Hemex tests. I hope the heart in CFS will get more attention from

researchers.

Rich

>

> This was a cool read, but I dont find it convincing. It seems hes

> saying that most disabling CFIDS dysfunction is causally

downstream of

> poor perfusion.

>

> I agree most of the dysfunctions could be downstream of poor

perfusion

> (at least in part), but what about unequivocally immunological sx

like

> sore throat and swollen lymph glands? How are those linked? I dont

> know, but I'm guessing Cheney himself never had those symptoms, or

if

> he did, didnt see them resolve in response to his heart transplant.

>

> Further, why explore low cardiac output as the prime cause of poor

> perfusion without considering hypercoagulation and microvascular

> injury/occlusion? (I was mistaken last week when I said

microvascular

> injury was universal in lyme, but it is common and could possibly

be

> universal in lyme patients with disabling fatigue; see Nanagara 95

and

> Steere 88.)

>

> Cheney addresses dysregulation of the microcirculation due to high

> levels of NO, but the cause he mentions for the elevated NO is the

> presence of antigen - which he does not link to poor cardiac

output.

>

> Keeping in mind that Bb readily causes chronic carditis (which can

be

> the sole lesion in spirochetal infections of relatively resistant

lab

> mammals), why not reckon that the poor cardiac output in CFIDS

might

> be a result of poor perfusion of the heart, due to microvasculitis

in

> the heart muscle?

>

> It seems like all the observations in Cheneys account can be

reckoned

> in terms of vasculitis rather than heart damage.

[Guest guest]

Hi, .

> > >

> > > Hi, all.

> > >

> > > Carol Sieverling has posted a write-up of Dr. Cheney's

> latest

> > > thinking on CFS on the Dallas-Fort Worth CFIDS support group

> site.

> > I

> > > think it's pretty exciting stuff. Prof. Marty Pall's

> peroxynitrite

> > > theory is a big part of it.

> > >

> > > The url is as follows:

> > >

> > >

http://www.virtualhometown.com/dfwcfids/medical/cheney/heart04.htm

> > >

> > > Rich

[Guest guest]

Hi, Jill.

I think the infection needs to be dealt with, too. A multifaceted

approach makes the most sense to me, because I think there are

vicious circles and interactions that we don't know about. In order

to break them, and restore homeostasis, I think it requires a " full

court press " on everything that appears to be out of whack.

Rich

>

> This is interesting. I still think you have to get rid of the

> infection, which is the root of the maladaptive responses, but...

>

> I think he's on the right track with a lot of it, including the

idea

> that pathogens may sequester heavy metals (not just mercury, imo).

>

> Its a little eerie to me--how much of what he recommends I

> intuitively or instincitvley already do:

>

> Raw cheese, raw milk, lots of eggs, magnesium IV, salt (I'm going

to

> make his salt and potassium brew, I think), potassium, temezapem

> (less potent than klonipin, but I intuitively feel the

extra " gaba "

> helps my system) and on and on. Glutathione IV. I don't use

hormones

> or trust them, and for some reason since getting lyme I have the

> opposite response to B-12, it revs me up too much. But already by

> myself I use about 70% of what he recommends.