Re: Dr Cheney Connecticut Interview - A question

February 18, 2006

IIF you have diastolic heart problems then the last thing you want to have is

high blood volume and dinking alot of fluids, having a high salt diet can cause

you to raise your blood volume. High blood volume is not good with diastolic

dysfunction because it gives the heart more blood to fill with - particularly

when you lie down. The heart already has trouble accepting the blood presented

to it; adding more to it just gives it more trouble. Patients with heart

failure often take drugs to reduce their blood volume. Unfortunately one of the

compensatory things your body does during heart failure is increase blood volume

in order to get blood to the tissues; this unfortunately exacerbates the

problems with the heart. If you dont have diastolic dysfunction this shouldn't

be a problem.

There were several parts of the interview I didn't 'get'. When asked why CFS

patients hadn't been diagnosed with heart problems he said because the

parameters of diastolic dysfunction had only recently been worked (mid 90's).

That hasn't stopped many many people without CFS from being diagnosed with

diastolic dysfunction since then - I dont know why it wouldn't stop CFS patients

from the same.

His idea that decreased adrenal function is the cause of the post exertion

fatigue seen in CFS was really surprising to me. The post exertional fatigue

seen in CFS has been described as being unique to the disease but low adrenal

functioning certainly is not. Post exertional fatigue is not found in 's

disease - a disease that is defined by its very low cortisol output. Almost all

studies have found the hypocortisolism in CFS to be 'minor'.

Post exertional fatigue is a bizarre symptom; it means your symptoms are

greatly increased not only just after exercise but for a day or two after

exercise. It appears to be very different from the general day in and day out

fatigue of 's patients. In fact 's disease patients can and should

exercise altho some of them have to increase their medication. Some of the

medications used in 's disease have been tried in CFS (fludrocortisone)

and dont work.

I dont know if anybody other than Cheney has suggested low cortisol output to

be the cause of post exertional fatigue. In fact he hasnt suggested it until

now; it does fit his theory of diastolic dysfuncton. Maybe I'm missing

something but I dont get that at all. Cortisol has probably been the most well

studied substance in CFS.

marypmichel <marypmichel@...> wrote:

Hi,

In reference to this interview (post #91374) I was struck by the

sentence under #14

" Good hydration is important but excessive fluid or salt might

be counter-productive "

For years I've tried to get enough water and sometimes reach my

saturation point before the usual recommended amount. I've also

been seriously considering starting the Salt-C protocol. I've

recently tried to raise my intake of salt and again seem to reach a

saturation point. I have a gene for CFS and for Mold and tested

positive for Bb. According to Dr. Shoemaker my issues are CFS and

Mold - not Lyme.

So, my questions are: What do you think Dr. Cheney's reasoning

is behind this statement? Would the Salt-C protocol be

counterproductive for some of us? How would excessive water and/or

salt affect the person with CFS?

Best Wishes to you All,

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.

February 18, 2006

> Post exertional fatigue is a bizarre symptom; it means your

symptoms are greatly increased not only just after exercise but for a

day or two after exercise. It appears to be very different from the

general day in and day out fatigue of 's patients.

I had a question about the above statement. My post exertional fatigue

begins not right after exercise but (usually) within 18 to 24 hours

and is much more than just fatigue, it sets off a host of symptoms

including that fluey feeling and ... it lasts easily for weeks, but

USUALLY months. Do others also experience this as the statement above

suggests otherwise.

February 18, 2006

Hi Cort,

The fluid salt, hydration thing is about a balance that varies among patients. I

do have the Diastolic Dysfunction, and Dr. Cheney does still have me doing them,

including Gookinaid (Hydralyte). What he said is that if I (or anyone) feels

worse when lying down...to lighten up on the fluids and skip the Hydralyte for

hours before going to bed.

I do find that my salt tolerance is worse now, so have to find just the right

balance there.

About the Florinef...you said what I have seen recent years' studies say,

too...but that's not true as a blanket statement.

Florinef does help some PWC's

and I am one...dramatically. As I have described it, it enabled me to " stand up

and hold a conversation " ...and continues to, 10 years later.

It's unknown what damage it caused me too, and now I may not be able to get off

of it.

Wish 'd know what else to do, but I did not, and Florinef made dramatic

difference.

I wish there were more written about the people it does help...and any long term

side effects. DId they just stop studying, and say it doesn't work, because for

some percentage it doesn't?

Katrina

> Hi,

> In reference to this interview (post #91374) I was struck by the

> sentence under #14

> " Good hydration is important but excessive fluid or salt might

> be counter-productive "

>

> For years I've tried to get enough water and sometimes reach my

> saturation point before the usual recommended amount. I've also

> been seriously considering starting the Salt-C protocol. I've

> recently tried to raise my intake of salt and again seem to reach a

> saturation point. I have a gene for CFS and for Mold and tested

> positive for Bb. According to Dr. Shoemaker my issues are CFS and

> Mold - not Lyme.

>

> So, my questions are: What do you think Dr. Cheney's reasoning

> is behind this statement? Would the Salt-C protocol be

> counterproductive for some of us? How would excessive water and/or

> salt affect the person with CFS?

>

> Best Wishes to you All,

>

> 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.

>

February 18, 2006

Hi Cort,

" Almost all studies have found the hypocortisolism in CFS to be 'minor'.

"

That is so because studies are being done on mixed group of patients. There

are stages while adrenal function goes worse and worse. I have lived all of

them.At some stage you are hyper not hypo. So,if you get mixture of CFS

patients with low and high cortisol function you can never get a reasonable

result.I am SO glad and excited that Cheney got aware of this fact. I am

hoping that research will more concentrate on HPA axis problems as soon as

possible.Hope that happens before it is too late for me.

" Post exertional fatigue is a bizarre symptom; it means your symptoms are

greatly increased not only just after exercise but for a day or two after

exercise. It appears to be very different from the general day in and day

out fatigue of 's patients. In fact 's disease patients can

and should exercise altho some of them have to increase their medication.

Some of the medications used in 's disease have been tried in CFS

(fludrocortisone) and dont work.

"

That is because your pituitary does not stop pushing or your adrenals does

not stop producing cortisol (Some kind or communication problem between the

two.That needs further investigation) once they start working. You

exercise,you get stimulated and this state does not change for long term as

long as your adrenals are able to produce some cortisol. You produce and

produce all the cortisol you have until you deplete all the stores or power

of adrenals. That takes some time, time period depending on the status of

your adrenals.That is why ians don't have post exertional

fatigue.They don't have any problems with their HPA axis.Their problem is

low cortisol throughout the day.

I an not feeling so well,but I could not stop writing answer to this post as

it really got me excited. I thank to all who have answered my inquiries on

various subjects. I read them and they were very helpful but I will be able

to answer when I feel fine.

Best wishes and thanks.

Nil

Re: Dr Cheney Connecticut Interview - A

question

> IIF you have diastolic heart problems then the last thing you want to

> have is high blood volume and dinking alot of fluids, having a high salt

> diet can cause you to raise your blood volume. High blood volume is not

> good with diastolic dysfunction because it gives the heart more blood to

> fill with - particularly when you lie down. The heart already has trouble

> accepting the blood presented to it; adding more to it just gives it more

> trouble. Patients with heart failure often take drugs to

February 18, 2006

Florinef is take as a replacement for aldosterone.I am also taking my

aldosterone in the form of adrenal cortex extract together with other 40+

adrenal hormones.I wouldn't be able to write this note without it. So,you

can count me on patients who are helped by aldosterone support.Best

wishes.Nil

Re: Dr Cheney Connecticut Interview - A

question

>

> Hi Cort,

>

> The fluid salt, hydration thing is about a balance that varies among

> patients. I do have the Diastolic Dysfunction, and Dr. Cheney does still

> have me doing them, including Gookinaid (Hydralyte). What he said is that

> if I (or anyone) feels worse when lying down...to lighten up on the fluids

> and skip the Hydralyte for hours before going to bed.

>

> I do find that my salt tolerance is worse now, so have to find just the

> right balance there.

>

> About the Florinef...you said what I have seen recent years' studies say,

> too...but that's not true as a blanket statement.

>

> Florinef does help some PWC's

> and I am one...dramatically. As I have described it, it enabled me to

> " stand up and hold a conversation " ...and continues to, 10 years later.

> It's unknown what damage it caused me too, and now I may not be able to

> get off of it.

> Wish 'd know what else to do, but I did not, and Florinef made dramatic

> difference.

>

> I wish there were more written about the people it does help...and any

> long term side effects. DId they just stop studying, and say it doesn't

> work, because for some percentage it doesn't?

>

February 18, 2006

Hi, Katrina.

" kattemayo " <kattemayo@...> wrote:

The fluid salt, hydration thing is about a balance that varies among patients.

I do have the Diastolic Dysfunction...

***Do you have a GNB3 gene variant as may be found on your Genovations cardio

panel that you had done through Dr Cheney? I have one and noticed that that

this polymorphism is associated with Diastolic Dysfunction in the heart like

Peckerman et al found in PWCs.

***My post, message#91142, from earlier this week about this GNB3 connection has

a link to the study on pubmed that shows it. I wonder if Dr Cheney has noticed

this in his patient files as he probably has compiled more Genovations test data

for PWCs by far than any CFS researcher out there?

February 18, 2006

We're probably into the subsets thing again! I guess everybody has try things

on an individual basis and see how they go. Both Cheney and Bell have talked in

the past about how many CFS patients are resistant to increasing blood volume

even though it appears they are in need of it.

Even tho my CFS symptoms are milder than most on this list I have always had

trouble lying down. When I had my worse MCS symptom I would have to lie down

the middle of the day and would nauseous for hours afterwards.

I dont think they're studying florinef or other volume enhancers\ although I

could be wrong. Hurwitz should be finished with a big study on low blood

volume and red blood cells that should spur more interest in that subject.

The research community isnt really interested parsing things out into subsets

in CFS yet; that job falls solely on the shoulder of physicians like Cheney who

have to figure out who will do well at what. It must be a very interesting and

not very easy job.

yildiz <yildiz22@...> wrote:

Florinef is take as a replacement for aldosterone.I am also taking my

aldosterone in the form of adrenal cortex extract together with other 40+

adrenal hormones.I wouldn't be able to write this note without it. So,you

can count me on patients who are helped by aldosterone support.Best

wishes.Nil

Re: Dr Cheney Connecticut Interview - A

question

>

> Hi Cort,

>

> The fluid salt, hydration thing is about a balance that varies among

> patients. I do have the Diastolic Dysfunction, and Dr. Cheney does still

> have me doing them, including Gookinaid (Hydralyte). What he said is that

> if I (or anyone) feels worse when lying down...to lighten up on the fluids

> and skip the Hydralyte for hours before going to bed.

>

> I do find that my salt tolerance is worse now, so have to find just the

> right balance there.

>

> About the Florinef...you said what I have seen recent years' studies say,

> too...but that's not true as a blanket statement.

>

> Florinef does help some PWC's

> and I am one...dramatically. As I have described it, it enabled me to

> " stand up and hold a conversation " ...and continues to, 10 years later.

> It's unknown what damage it caused me too, and now I may not be able to

> get off of it.

> Wish 'd know what else to do, but I did not, and Florinef made dramatic

> difference.

>

> I wish there were more written about the people it does help...and any

> long term side effects. DId they just stop studying, and say it doesn't

> work, because for some percentage it doesn't?

>

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.

February 18, 2006

Thats an intriguing idea but Cheney did not say in that interview that CFS

patients are hyper and hypo, he said they became hypo after exercise. You

would think as well that if they were both hyper and hypo t hat some studies

would have shown them to be hyper. There certainly is more research on the HPA

axis going on though. The hypocortisolism is one of the more consistent

findings in CFS. I'm sure the 'big' neuro-immune grant by the NIH will fund

several extensive studies in t his area.

Are you saying that once CFS patients get stimulated to produce cortisol by

exercise that for some reason it doesn't get shut off? But they keep on pumping

it out until their adrenals are exhausted and that is the cause of the post

exertion malaise?

That certainly is interesting. You're saying that something is telling the

adrenals to work and that it is the communication in the HPA axis that is

faulty - not the poor adrenals - who are just responding as best they can to

this message?

If right that certainly is an intriguing idea. I going to check if they've

monitored cortisol response to exercise over time in CFS patients.

yildiz <yildiz22@...> wrote:

Hi Cort,

" Almost all studies have found the hypocortisolism in CFS to be 'minor'.

"

That is so because studies are being done on mixed group of patients. There

are stages while adrenal function goes worse and worse. I have lived all of

them.At some stage you are hyper not hypo. So,if you get mixture of CFS

patients with low and high cortisol function you can never get a reasonable

result.I am SO glad and excited that Cheney got aware of this fact. I am

hoping that research will more concentrate on HPA axis problems as soon as

possible.Hope that happens before it is too late for me.

" Post exertional fatigue is a bizarre symptom; it means your symptoms are

greatly increased not only just after exercise but for a day or two after

exercise. It appears to be very different from the general day in and day

out fatigue of 's patients. In fact 's disease patients can

and should exercise altho some of them have to increase their medication.

Some of the medications used in 's disease have been tried in CFS

(fludrocortisone) and dont work.

"

That is because your pituitary does not stop pushing or your adrenals does

not stop producing cortisol (Some kind or communication problem between the

two.That needs further investigation) once they start working. You

exercise,you get stimulated and this state does not change for long term as

long as your adrenals are able to produce some cortisol. You produce and

produce all the cortisol you have until you deplete all the stores or power

of adrenals. That takes some time, time period depending on the status of

your adrenals.That is why ians don't have post exertional

fatigue.They don't have any problems with their HPA axis.Their problem is

low cortisol throughout the day.

I an not feeling so well,but I could not stop writing answer to this post as

it really got me excited. I thank to all who have answered my inquiries on

various subjects. I read them and they were very helpful but I will be able

to answer when I feel fine.

Best wishes and thanks.

Nil

Re: Dr Cheney Connecticut Interview - A

question

> IIF you have diastolic heart problems then the last thing you want to

> have is high blood volume and dinking alot of fluids, having a high salt

> diet can cause you to raise your blood volume. High blood volume is not

> good with diastolic dysfunction because it gives the heart more blood to

> fill with - particularly when you lie down. The heart already has trouble

> accepting the blood presented to it; adding more to it just gives it more

> trouble. Patients with heart failure often take drugs to

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.

February 18, 2006

I was able to find this study, - it showed significantly lower ACTH levels in

CFS patients both before and after exercise but normal cortisol. Maybe

theproblem is upstream of cortisol??? I dont think they've really delved into

that too much. SInce the neuroimmune grants are targeted at the brain maybe they

get into some good HPA axis/brain stuff that will show us something. Too bad it

wasnt $14 or $40 million dollars they were will to spend.

Cort

Psychosom Med. 2002 Nov-Dec;64(6):951-62. Related Articles,

Links

Hypothalamic-pituitary-adrenal axis reactivity in chronic fatigue syndrome and

health under psychological, physiological, and pharmacological stimulation.

Gaab J, Huster D, Peisen R, Engert V, Heitz V, Schad T, Schurmeyer TH, Ehlert U.

Center for Psychobiological and Psychosomatic Research, University of Trier,

Trier, Germany. jgaab@...

OBJECTIVES: Subtle alterations of the hypothalamic-pituitary-adrenal (HPA) axis

in chronic fatigue syndrome (CFS) have been proposed as a shared pathway linking

numerous etiological and perpetuating processes with symptoms and observed

physiological abnormalities. Because the HPA axis is involved in the adaptive

responses to stress and CFS patients experience a worsening of symptoms after

physical and psychological stress, we tested HPA axis functioning with three

centrally acting stress tests. METHODS: We used two procedures mimicking

real-life stressors and compared them with a standardized pharmacological

neuroendocrine challenge test. CFS patients were compared with healthy control

subjects regarding their cardiovascular and endocrine reactivity in a

psychosocial stress test and a standardized exercise test, and their endocrine

response in the insulin tolerance test (ITT). RESULTS: Controlling for possible

confounding variables, we found significantly lower ACTH response levels

in the psychosocial stress test and the exercise test, and significantly lower

ACTH responses in the ITT, with no differences in plasma total cortisol

responses. Also, salivary-free cortisol responses did not differ between the

groups in the psychosocial stress test and the exercise test but were

significantly higher for the CFS patients in the ITT. In all tests CFS patients

had significantly reduced baseline ACTH levels. CONCLUSIONS: These results

suggest that CFS patients are capable of mounting a sufficient cortisol response

under different types of stress but that on a central level subtle

dysregulations of the HPA axis exist.

cort johnson <cortttt@...> wrote: Thats an intriguing idea but Cheney did

not say in that interview that CFS patients are hyper and hypo, he said they

became hypo after exercise. You would think as well that if they were both

hyper and hypo t hat some studies would have shown them to be hyper. There

certainly is more research on the HPA axis going on though. The

hypocortisolism is one of the more consistent findings in CFS. I'm sure the

'big' neuro-immune grant by the NIH will fund several extensive studies in t his

area.

Are you saying that once CFS patients get stimulated to produce cortisol by

exercise that for some reason it doesn't get shut off? But they keep on pumping

it out until their adrenals are exhausted and that is the cause of the post

exertion malaise?

That certainly is interesting. You're saying that something is telling the

adrenals to work and that it is the communication in the HPA axis that is

faulty - not the poor adrenals - who are just responding as best they can to

this message?

If right that certainly is an intriguing idea. I going to check if they've

monitored cortisol response to exercise over time in CFS patients.

yildiz <yildiz22@...> wrote:

Hi Cort,

" Almost all studies have found the hypocortisolism in CFS to be 'minor'.

"

That is so because studies are being done on mixed group of patients. There

are stages while adrenal function goes worse and worse. I have lived all of

them.At some stage you are hyper not hypo. So,if you get mixture of CFS

patients with low and high cortisol function you can never get a reasonable

result.I am SO glad and excited that Cheney got aware of this fact. I am

hoping that research will more concentrate on HPA axis problems as soon as

possible.Hope that happens before it is too late for me.

" Post exertional fatigue is a bizarre symptom; it means your symptoms are

greatly increased not only just after exercise but for a day or two after

exercise. It appears to be very different from the general day in and day

out fatigue of 's patients. In fact 's disease patients can

and should exercise altho some of them have to increase their medication.

Some of the medications used in 's disease have been tried in CFS

(fludrocortisone) and dont work.

"

That is because your pituitary does not stop pushing or your adrenals does

not stop producing cortisol (Some kind or communication problem between the

two.That needs further investigation) once they start working. You

exercise,you get stimulated and this state does not change for long term as

long as your adrenals are able to produce some cortisol. You produce and

produce all the cortisol you have until you deplete all the stores or power

of adrenals. That takes some time, time period depending on the status of

your adrenals.That is why ians don't have post exertional

fatigue.They don't have any problems with their HPA axis.Their problem is

low cortisol throughout the day.

I an not feeling so well,but I could not stop writing answer to this post as

it really got me excited. I thank to all who have answered my inquiries on

various subjects. I read them and they were very helpful but I will be able

to answer when I feel fine.

Best wishes and thanks.

Nil

Re: Dr Cheney Connecticut Interview - A

question

> IIF you have diastolic heart problems then the last thing you want to

> have is high blood volume and dinking alot of fluids, having a high salt

> diet can cause you to raise your blood volume. High blood volume is not

> good with diastolic dysfunction because it gives the heart more blood to

> fill with - particularly when you lie down. The heart already has trouble

> accepting the blood presented to it; adding more to it just gives it more

> trouble. Patients with heart failure often take drugs to

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.

February 18, 2006

cort johnson wrote:

>

> Thats an intriguing idea but Cheney did not say in that interview

that CFS patients are hyper and hypo, he said they became hypo

after exercise. <

I should send you a picture I have of Dr Cheney's office.

My house is directly behind, and you can see the short flight of

stairs leading up to the door.

Literally overnight, I went from being a Hang Glider instructor who

ran wind-sprints all day long, holding onto students flying wires to

control the glider in the initial " launch and land " learning phase -

to not even being able to climb those stairs without clinging to the

handrail and resting halfway.

This was a hallmark of the Incline Village epidemic.

" Post Exertional malaise " ?

What " exertion " are they talking about?

Standing up?

Trying to feed yourself?

Crawling to the bathroom?

I would wake up after " resting " feeling worse and more destroyed

than when I lost consciousness and fell into the catatonic collapse

that doctors think is just " sleeping " .

I only got the joy of experiencing " post exertional malaise " after a

couple of years when I recovered enough to walk the length of the

driveway.

Literally overnight after the flu-like illness from Hell!

And the doctors call this " Deconditioning " .

Dr Cheney knows this full well but I believe that he is just trying

to avoid excluding other types of CFS by not saying " NO Exertional

Malaise " .

-

February 18, 2006

Me too.

In a message dated 2/18/2006 11:25:09 AM Eastern Standard Time,

ballady4@... writes:

> I had a question about the above statement. My post exertional fatigue

> begins not right after exercise but (usually) within 18 to 24 hours

> and is much more than just fatigue, it sets off a host of symptoms

> including that fluey feeling and ... it lasts easily for weeks, but

> USUALLY months

February 18, 2006

Hi Cort.

> Thats an intriguing idea but Cheney did not say in that interview that CFS

> patients are hyper and hypo, he said they became hypo after exercise.

Okay I think I need to explain this

you said " " Almost all studies have found the hypocortisolism in CFS to be

'minor'. " .I am on the word " minor " now. They find it to be minor because

their test group consists of mixed CFS patients. Some being hyper and some

hypo. So,the result comes out as " Minor " hypo.Actually late stage patients

are hypo and the earlier stage patients are hyper. Some in between.So,the

thing that needs to be done is to separate patients into groups.stage

1,stage 2,stage 3,etc Than it will be seen that stage one patients

consistently high in cortisol whereas late stage patients are consistently

low. If you mix these groups together you can get no meaningful results.

You would think as well that if they were both hyper and hypo t hat some

studies would have shown them to be hyper. There certainly is more research

on the HPA axis going on though. The hypocortisolism is one of the more

consistent findings in CFS. I'm sure the 'big' neuro-immune grant by the NIH

will fund several extensive studies in t his area.

at earlier stages cortisol levels are high. But at that point exhaustion is

not so evident. So that may be the reason not many of these patients are not

included in the studies.

> Are you saying that once CFS patients get stimulated to produce cortisol

> by exercise that for some reason it doesn't get shut off? But they keep

> on pumping it out until their adrenals are exhausted and that is the cause

> of the post exertion malaise?

Yes. exactly.Once you are exposed to a stimuli you can not calm down it

time. There is a delayed response to stress removal.Once stress is removed

form normal people they calm down after some time but for CFs patients it

takes much more time or the cortisol levels to come down.

>

> That certainly is interesting. You're saying that something is telling

> the adrenals to work and that it is the communication in the HPA axis

> that is faulty - not the poor adrenals - who are just responding as best

> they can to this message?

Exactly.There is a communication problem some where in HPA axis. " Danger is

gone " message is not being taken or processed in time.If patient is at

earlier stages of the illness and adrenals are able to produce some

cortisol,than not much exhaustion is observed but as illness progresses and

adrenals start loosing their ability to respond than severe exhaustion sets

in. At this late stage of the illness,I can observe this very clearly on my

body.Let me give you an example. When I read your first note on Cheney's

latest interview,I was extremely exhausted. I even had difficulty to read

the list notes,but the second I read it I got very excited. Was happy that

Cheney was aware of this issue. This was a stimuli for me. An from that time

on I am over activated.I can not relax myself and I am eating my adrenals at

this point.Actually I am very tired but I can not feel it. I was extremely

tired 3 hours ago. How come I am so active since this three hours and do not

feel any need for rest.Overstimulation has taken the control.Tomorrow I will

be in crash because of this.

So,at the end,`Poor adrenals` get exhausted and become really poor

adrenals.But no matter how poor,depleted they are, this communication

problem goes on.So,even if patients get well for a while for some

reason,they soon re-deplete their adrenals as the main problem at hpa axis

is not resolved.

> If right that certainly is an intriguing idea. I going to check if

> they've monitored cortisol response to exercise over time in CFS patients.

yes I think there was such a study somewhere. it was found that cortisol

values of CFS patients normalized at much later time than the normal group.

Sorry I don't have it now.

best wishes.

Nil

February 18, 2006

I recently read that said there are two broad types of CFS patients;

those who are absolutely disabled and are never not fatigued and those who are

able to engage in some exercise and recover to some extent by resting. I'm

just very glad I never fell into that first category.

erikmoldwarrior <erikmoldwarrior@...> wrote: cort johnson wrote:

>

> Thats an intriguing idea but Cheney did not say in that interview

that CFS patients are hyper and hypo, he said they became hypo

after exercise. <

I should send you a picture I have of Dr Cheney's office.

My house is directly behind, and you can see the short flight of

stairs leading up to the door.

Literally overnight, I went from being a Hang Glider instructor who

ran wind-sprints all day long, holding onto students flying wires to

control the glider in the initial " launch and land " learning phase -

to not even being able to climb those stairs without clinging to the

handrail and resting halfway.

This was a hallmark of the Incline Village epidemic.

" Post Exertional malaise " ?

What " exertion " are they talking about?

Standing up?

Trying to feed yourself?

Crawling to the bathroom?

I would wake up after " resting " feeling worse and more destroyed

than when I lost consciousness and fell into the catatonic collapse

that doctors think is just " sleeping " .

I only got the joy of experiencing " post exertional malaise " after a

couple of years when I recovered enough to walk the length of the

driveway.

Literally overnight after the flu-like illness from Hell!

And the doctors call this " Deconditioning " .

Dr Cheney knows this full well but I believe that he is just trying

to avoid excluding other types of CFS by not saying " NO Exertional

Malaise " .

-

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.

February 18, 2006

On Feb 18, 2006, at 7:30 PM, cort johnson wrote:

> I recently read that said there are two broad types of CFS

> patients; those who are absolutely disabled and are never not

> fatigued and those who are able to engage in some exercise and

> recover to some extent by resting. I'm just very glad I never

> fell into that first category.

I dunno. Over the course of 20+ years, I've spent considerable time

in both of these categories. It hasn't been an either-or for me.

Rather, it was a long decline over a period of about 15 years, with

years of stasis punctuated by several big, hard bumps along the way.

Each bump took me down a little further (though they were generally

followed by a slow improvement over a couple years, I'd never get

anywhere near as well as I'd been before) -- until the last one

(1993) finally left me unable to get back up again for six long years.

In the end, " resting " didn't really do it. Though I'm sure I wouldn't

have recovered without large doses of that, too, it only got me so

far. By the end of the six years, it was pretty clear that I was

stuck, and no amount of rest was going to bring me back out of it. It

wasn't until I started treating the damage -- allergies, thyroid,

hormonal whackouts, sulfur issues (in a limited way), sleep

disorders, and so on -- that the fog began to clear.

Actually, it seems possible that I may have hit another mid-sized

milestone. Working Rich's protocol, today was the day I started

taking 400 mg of SAMe. Twelve hours later, all I can say is: WOW.

I clearly need to cut out the SJW when I take this -- the first two

hours, I had a wicked serotonin headache. But after that, I felt

like...well, like I really, seriously needed to put down the books,

pull on my jacket, and go outside for a very long walk. Like I had

too much energy to just sit still. Like maybe I could get some real

exercise, and it might feel bone-deep good. My body WANTED it. I

seriously believed I would never feel that craving for movement again

in this lifetime. It felt wonderful.

Beyond a few stretches and some heavy lifting, I didn't indulge that

impulse today. But my husband and I have agreed to try a slow 45-

minute walk after church tomorrow. I'll see how I do with it. If I

don't hurt on Monday, maybe I'll go ahead and try a gentle yoga class

on Tuesday. (Dare I dream?)

The fear of post-exertional payback has been the last big hurdle

standing between me and that last 15% of recovery. Everything else is

pretty much back, except my ability to take that kind of overt

physical stress. (I'm even handling 25 hours of schoolwork a week,

and the deadlines that entails. It's pushing me a bit, and the house

looks like hell, but I'm not yet redlining my stress meter.) It's

starting to look possible that Rich's methylation program might be

the key to that final door where my last bit of stamina can be

recovered. I'll keep you posted.

Also: I have no appetite whatsoever, probably due to the elevated

serotonin levels. Less food, more exercise....could this be the year

I finally start dropping the 40 pounds I gained during all those

years in bed? That would be nice....

Sara

February 18, 2006

Cort -

I think you are very correct on all points in your msg below. Indeed, a

standard treatment for heart failure is diuretics, to reduce blood volume

and heart preload.

And you are also correct on the absence of post exertional fatigue in

's Disease, which produces insufficient cortisol and aldosterone.

These patients are fatigued all the time, and exercise does not make it

worse. Prime example is President F. Kennedy, who had very serious

's Disease, but maintained a high energy level (most of the time),

with high doses of IV hydrocortisone and oral fludrocortisone acetate.

At JFK's autopsy, the pathologists said his adrenal cortex was almost

non-existent. But the continual administration of hydrocortisone,

fludrocortizone and perhaps some amphetamine allowed him to be a very

energetic and effective man, to say the least.

I had my cortisol tested about a year ago and it was very normal.. I was

disappointed, as I thought if it was low, the above hormone therapy might

bring me up to JFK energy level.. Sorry pal; you have CFS, not 's

disease.. If JFK had had CFS, he would now be an unknown...

Cort, thank you for your great work for us all -

Mort Caldwell in West Virginia

Biomedical Engineer and Physiologist

CFS since 1994 Age 65 and at about 15% functionality.

Re: Dr Cheney Connecticut Interview - A

question

> IIF you have diastolic heart problems then the last thing you want to

> have is high blood volume and dinking alot of fluids, having a high salt

> diet can cause you to raise your blood volume. High blood volume is not

> good with diastolic dysfunction because it gives the heart more blood to

> fill with - particularly when you lie down. The heart already has trouble

> accepting the blood presented to it; adding more to it just gives it more

> trouble. Patients with heart failure often take drugs to reduce their

> blood volume. Unfortunately one of the compensatory things your body does

> during heart failure is increase blood volume in order to get blood to the

> tissues; this unfortunately exacerbates the problems with the heart. If

> you dont have diastolic dysfunction this shouldn't be a problem.

>

> There were several parts of the interview I didn't 'get'. When asked why

> CFS patients hadn't been diagnosed with heart problems he said because the

> parameters of diastolic dysfunction had only recently been worked (mid

> 90's). That hasn't stopped many many people without CFS from being

> diagnosed with diastolic dysfunction since then - I dont know why it

> wouldn't stop CFS patients from the same.

>

> His idea that decreased adrenal function is the cause of the post

> exertion fatigue seen in CFS was really surprising to me. The post

> exertional fatigue seen in CFS has been described as being unique to the

> disease but low adrenal functioning certainly is not. Post exertional

> fatigue is not found in 's disease - a disease that is defined by

> its very low cortisol output. Almost all studies have found the

> hypocortisolism in CFS to be 'minor'.

>

> Post exertional fatigue is a bizarre symptom; it means your symptoms are

> greatly increased not only just after exercise but for a day or two after

> exercise. It appears to be very different from the general day in and

> day out fatigue of 's patients. In fact 's disease patients

> can and should exercise altho some of them have to increase their

> medication. Some of the medications used in 's disease have been

> tried in CFS (fludrocortisone) and dont work.

>

> I dont know if anybody other than Cheney has suggested low cortisol

> output to be the cause of post exertional fatigue. In fact he hasnt

> suggested it until now; it does fit his theory of diastolic dysfuncton.

> Maybe I'm missing something but I dont get that at all. Cortisol has

> probably been the most well studied substance in CFS.

>

> marypmichel <marypmichel@...> wrote:

> Hi,

> In reference to this interview (post #91374) I was struck by the

> sentence under #14

> " Good hydration is important but excessive fluid or salt might

> be counter-productive "

>

> For years I've tried to get enough water and sometimes reach my

> saturation point before the usual recommended amount. I've also

> been seriously considering starting the Salt-C protocol. I've

> recently tried to raise my intake of salt and again seem to reach a

> saturation point. I have a gene for CFS and for Mold and tested

> positive for Bb. According to Dr. Shoemaker my issues are CFS and

> Mold - not Lyme.

>

> So, my questions are: What do you think Dr. Cheney's reasoning

> is behind this statement? Would the Salt-C protocol be

> counterproductive for some of us? How would excessive water and/or

> salt affect the person with CFS?

>

> Best Wishes to you All,

>

> 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.

>

February 18, 2006

Sara

SAM-e was my life-giver, too. I got a hit with the very first 200 mg dose in

Sept 1999.

May I suggest that you take 200 mg before breakfast and another 200 mg

between 2 and 3 pm? This might make it easier and smoother.

I find if I take SAM-e much after 4 pm I am like the energizer bunny most of

the night.

Glad to wake up to such good news from you.

Don't forget that SAM-e needs B6, B12, folic acid to keep homocysteine level.

mjh

In a message dated 2/19/06 1:20:02 AM Eastern Standard Time,

mercuria@... writes:

> Actually, it seems possible that I may have hit another mid-sized

> milestone. Working Rich's protocol, today was the day I started

> taking 400 mg of SAMe. Twelve hours later, all I can say is: WOW.

>

February 19, 2006

Cort wrote:

>>>>>I don't think they're studying florinef or other volume enhancers\ although

I could be wrong. <<<<<

Cort, Not sure if I'm reading this right.

But for any who were not around...in 94, Rowe...s Hopkins ...had THE

big breakthrough that hit the CFS airwaves...he was studying teenagers with

Neurally Mediated Hypotension- (NMH)...and noticed that their bedridden state

for dasy after a syncope episode resembled...CFS.

So he tested CFS teenagers for NMH (Tilt Table, etc)...sure enough, they had it.

PReviously it was thought that all NMH meant total fainting,but this was near

faint/syncope...for days, or longer, cause episodes kept happening...crashes in

between.

So, they put people on Florinef 1st, and some others. TO retain Electrolytes and

pump up the volume. Becasue communication between brain and heart backward (a

nerve?). ( " Maybe viral origin/damage) "

We stand up...BP's supposed to go up, but with us it goes down...blood pools in

ankles. We all across the country were going on Florinef...people were getting

out of bed... Plus high fluids and salt. 3 of us locally had dramatic

improvement...Jahn Hiber and I lectured on it locally.

Then Jahn flew friends and family in from all over, threw a big bash for all of

us in Carmel, suites and all. Coctail party, banquet,media...gave speech, threw

away handicap sticker...pronounced himself cured. and I were holding

steady...watching him and ourselves to see what this drug might do to us.

We kind of lost track of him and the rest of the research.

Before or after Florinef, I got Melanoma, surgery(95)

We heard Jahn crashed, I got a few letters, he was in Alaska, Carmel, etc.then

precarious, then NIH.

I got some long term warnings on Florinef, but no details. Then I lost touch

with , Jahn developed more complications...he had ALS,RA from before...big

$$ crash...-- more complexities. Jahn is on the Memorial list, same as Bob. For

4 or 5 years,I lost one CFS friend a year to Suicide.

I was trying to stay on my feet, and get updates on Rowe's work. ANd

running local support group, and suicide prevention on phone.

I could still stand up some and articulate, got severely shaky if off of it a

day or 2, so stayed on it. Me and my PCP were in this alone.

Ever since I came on-line, I have trid to find more info. But no/little

response. By now, Rowe's work and low blood volume would be referenced but with

this " Florinef did not pan out part " . Weird.

Oddly, the NMH/low blood volume was all I found on the Mayo Clinic site. And

when I went there, (2003?), for my Movement Disorders, the Internist knew about

it, and it only. Several tests of the Autonomic System were ordered for me, then

canceled. Very surreal...

So, here I am, still on Florinef and Gookinaid with Diastolic Heart Failure (Dr,

Cheney calls G. " pre-load " ).

And, Cort, PS, Dr. Cheney said this: we are " erratically circulating low blood

volume. "

That's my story and I'm stickin' to it. Well, only a couple of chapters, that

is.

Still walking pneumonia, on Doxy now.

Sorry for detail + shorthand.

Katrina

kattemayo@...

In , cort johnson <cortttt@...> wrote:

>

> We're probably into the subsets thing again! I guess everybody has try things

on an individual basis and see how they go. Both Cheney and Bell have talked in

the past about how many CFS patients are resistant to increasing blood volume

even though it appears they are in need of it.

>

> Even tho my CFS symptoms are milder than most on this list I have always

had trouble lying down. When I had my worse MCS symptom I would have to lie down

the middle of the day and would nauseous for hours afterwards.

>

think they're studying florinef or other volume enhancers\ although I could be

wrong. Hurwitz should be finished with a big study on low blood volume and red

blood cells that should spur more interest in that subject.

>

> The research community isnt really interested parsing things out into

subsets in CFS yet; that job falls solely on the shoulder of physicians like

Cheney who have to figure out who will do well at what. It must be a very

interesting and not very easy job.

>

> yildiz <yildiz22@...> wrote:

> Florinef is take as a replacement for aldosterone.I am also taking my

> aldosterone in the form of adrenal cortex extract together with other 40+

> adrenal hormones.I wouldn't be able to write this note without it. So,you

> can count me on patients who are helped by aldosterone support.Best

> wishes.Nil

> Re: Dr Cheney Connecticut Interview - A

> question

>

> >

> > Hi Cort,

> >

> > The fluid salt, hydration thing is about a balance that varies among

> > patients. I do have the Diastolic Dysfunction, and Dr. Cheney does still

> > have me doing them, including Gookinaid (Hydralyte). What he said is that

> > if I (or anyone) feels worse when lying down...to lighten up on the fluids

> > and skip the Hydralyte for hours before going to bed.

> >

> > I do find that my salt tolerance is worse now, so have to find just the

> > right balance there.

> >

> > About the Florinef...you said what I have seen recent years' studies say,

> > too...but that's not true as a blanket statement.

> >

> > Florinef does help some PWC's

> > and I am one...dramatically. As I have described it, it enabled me to

> > " stand up and hold a conversation " ...and continues to, 10 years later.

> > It's unknown what damage it caused me too, and now I may not be able to

> > get off of it.

> > Wish 'd know what else to do, but I did not, and Florinef made dramatic

> > difference.

> >

> > I wish there were more written about the people it does help...and any

> > long term side effects. DId they just stop studying, and say it doesn't

> > work, because for some percentage it doesn't?

> >

>

> 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.

>

February 19, 2006

Thats quite a story! Just so you know where I'm coming from with this

fludrocoritsone stuff - all I have is studies cited on PubMed. They obviously

dont explain the range of CFS experience...too many people have stories like

yours but that is where I get my info. Heres what I have with regards to that -

two studies that did not show a difference overall in CFS. Obviously it made a

big difference for you...but thats what doctors like Cheney are for - to figure

out what works for who.

Fludrocortisone acetate to treat neurally mediated hypotension in chronic

fatigue syndrome: a randomized controlled trial.

Rowe PC, Calkins H, DeBusk K, McKenzie R, Anand R, Sharma G, Cuccherini BA, Soto

N, Hohman P, Snader S, Lucas KE, Wolff M, Straus SE.

Departments of Pediatrics and Medicine, s Hopkins Hospital, 600 N Wolfe St,

Baltimore, MD 21287, USA.

CONTEXT: Patients with chronic fatigue syndrome (CFS) are more likely than

healthy persons to develop neurally mediated hypotension (NMH) in response to

prolonged orthostatic stress. OBJECTIVE: To examine the efficacy of

fludrocortisone acetate as monotherapy for adults with both CFS and NMH. .

CONCLUSIONS: In our study of adults with CFS, fludrocortisone as monotherapy for

NMH was no more efficacious than placebo for amelioration of symptoms. Failure

to identify symptomatic improvement with fludrocortisone does not disprove the

hypothesis that NMH could be contributing to some of the symptoms of CFS.

Further studies are needed to determine whether other medications or combination

therapy are more effective in treating orthostatic intolerance in patients with

CFS.

Am J Med. 2003 Jun 15;114(9):736-41. Related Articles,

Links

Combination therapy with hydrocortisone and fludrocortisone does not improve

symptoms in chronic fatigue syndrome: a randomized, placebo-controlled,

double-blind, crossover study.

Blockmans D, Persoons P, Van Houdenhove B, Lejeune M, Bobbaers H.

Department of General Internal Medicine, University Hospital Gasthuisberg,

Leuven, Belgium. .Blackmans@...

PURPOSE: Chronic fatigue syndrome has been associated with decreased function of

the hypothalamic-pituitary-adrenal axis. Although neurally mediated hypotension

occurs more frequently in patients with chronic fatigue syndrome than in

controls, attempts to alleviate symptoms by administration of hydrocortisone or

fludrocortisone have not been successful. The purpose of this study was to

investigate the effect of combination therapy (5 mg/d of hydrocortisone and 50

microg/d of 9-alfa-fludrocortisone) on fatigue and well-being in chronic fatigue

syndrome. METHODS: We performed a 6-There were no differences between treatment

and placebo in patient-reported fatigue or well-being There were also no

between-group differences in fatigue measured with the Abbreviated Fatigue

Questionnaire, the Short Form-36 Mental or Physical Factor scores, or in the

Hospital Anxiety and Depression Scale. CONCLUSION: Low-dose combination therapy

of hydrocortisone and fludrocortisone was not effective in

patients with chronic fatigue syndrome.

kattemayo <kattemayo@...> wrote:

Cort wrote:

>>>>>I don't think they're studying florinef or other volume enhancers\ although

I could be wrong. <<<<<

Cort, Not sure if I'm reading this right.

But for any who were not around...in 94, Rowe...s Hopkins ...had THE

big breakthrough that hit the CFS airwaves...he was studying teenagers with

Neurally Mediated Hypotension- (NMH)...and noticed that their bedridden state

for dasy after a syncope episode resembled...CFS.

So he tested CFS teenagers for NMH (Tilt Table, etc)...sure enough, they had it.

PReviously it was thought that all NMH meant total fainting,but this was near

faint/syncope...for days, or longer, cause episodes kept happening...crashes in

between.

So, they put people on Florinef 1st, and some others. TO retain Electrolytes and

pump up the volume. Becasue communication between brain and heart backward (a

nerve?). ( " Maybe viral origin/damage) "

We stand up...BP's supposed to go up, but with us it goes down...blood pools in

ankles. We all across the country were going on Florinef...people were getting

out of bed... Plus high fluids and salt. 3 of us locally had dramatic

improvement...Jahn Hiber and I lectured on it locally.

Then Jahn flew friends and family in from all over, threw a big bash for all of

us in Carmel, suites and all. Coctail party, banquet,media...gave speech, threw

away handicap sticker...pronounced himself cured. and I were holding

steady...watching him and ourselves to see what this drug might do to us.

We kind of lost track of him and the rest of the research.

Before or after Florinef, I got Melanoma, surgery(95)

We heard Jahn crashed, I got a few letters, he was in Alaska, Carmel, etc.then

precarious, then NIH.

I got some long term warnings on Florinef, but no details. Then I lost touch

with , Jahn developed more complications...he had ALS,RA from before...big

$$ crash...-- more complexities. Jahn is on the Memorial list, same as Bob. For

4 or 5 years,I lost one CFS friend a year to Suicide.

I was trying to stay on my feet, and get updates on Rowe's work. ANd

running local support group, and suicide prevention on phone.

I could still stand up some and articulate, got severely shaky if off of it a

day or 2, so stayed on it. Me and my PCP were in this alone.

Ever since I came on-line, I have trid to find more info. But no/little

response. By now, Rowe's work and low blood volume would be referenced but with

this " Florinef did not pan out part " . Weird.

Oddly, the NMH/low blood volume was all I found on the Mayo Clinic site. And

when I went there, (2003?), for my Movement Disorders, the Internist knew about

it, and it only. Several tests of the Autonomic System were ordered for me, then

canceled. Very surreal...

So, here I am, still on Florinef and Gookinaid with Diastolic Heart Failure (Dr,

Cheney calls G. " pre-load " ).

And, Cort, PS, Dr. Cheney said this: we are " erratically circulating low blood

volume. "

That's my story and I'm stickin' to it. Well, only a couple of chapters, that

is.

Still walking pneumonia, on Doxy now.

Sorry for detail + shorthand.

Katrina

kattemayo@...

In , cort johnson <cortttt@...> wrote:

>

> We're probably into the subsets thing again! I guess everybody has try things

on an individual basis and see how they go. Both Cheney and Bell have talked in

the past about how many CFS patients are resistant to increasing blood volume

even though it appears they are in need of it.

>

> Even tho my CFS symptoms are milder than most on this list I have always

had trouble lying down. When I had my worse MCS symptom I would have to lie down

the middle of the day and would nauseous for hours afterwards.

>

think they're studying florinef or other volume enhancers\ although I could be

wrong. Hurwitz should be finished with a big study on low blood volume and red

blood cells that should spur more interest in that subject.

>

> The research community isnt really interested parsing things out into

subsets in CFS yet; that job falls solely on the shoulder of physicians like

Cheney who have to figure out who will do well at what. It must be a very

interesting and not very easy job.

>

> yildiz <yildiz22@...> wrote:

> Florinef is take as a replacement for aldosterone.I am also taking my

> aldosterone in the form of adrenal cortex extract together with other 40+

> adrenal hormones.I wouldn't be able to write this note without it. So,you

> can count me on patients who are helped by aldosterone support.Best

> wishes.Nil

> Re: Dr Cheney Connecticut Interview - A

> question

>

> >

> > Hi Cort,

> >

> > The fluid salt, hydration thing is about a balance that varies among

> > patients. I do have the Diastolic Dysfunction, and Dr. Cheney does still

> > have me doing them, including Gookinaid (Hydralyte). What he said is that

> > if I (or anyone) feels worse when lying down...to lighten up on the fluids

> > and skip the Hydralyte for hours before going to bed.

> >

> > I do find that my salt tolerance is worse now, so have to find just the

> > right balance there.

> >

> > About the Florinef...you said what I have seen recent years' studies say,

> > too...but that's not true as a blanket statement.

> >

> > Florinef does help some PWC's

> > and I am one...dramatically. As I have described it, it enabled me to

> > " stand up and hold a conversation " ...and continues to, 10 years later.

> > It's unknown what damage it caused me too, and now I may not be able to

> > get off of it.

> > Wish 'd know what else to do, but I did not, and Florinef made dramatic

> > difference.

> >

> > I wish there were more written about the people it does help...and any

> > long term side effects. DId they just stop studying, and say it doesn't

> > work, because for some percentage it doesn't?

> >

>

> 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.

>

February 19, 2006

That's really great. If you feel like you can say this is really working and

are stable on it would you be willing to answer the following questions and I'll

post it on my website?

How long have you had CFS?

What made you change your protocol? (test results, doctor's advice, etc?)

What did you change? What is your protocol?

How long have you been on it?

What are your results, how have your symptoms changed?

Have any blood tests, etc. changed?

On a scale of 1-10, 10 being healthy, what were you before and what are you

now?

Is there anything else you'd like to add?

Mercuria <mercuria@...> wrote: