Re: diastolic heart failure confirmed

June 9, 2005

on edit, normal is 7.0, not 70

> I have this. Lying down my blood flow was 6.3 liters per minute

(normal

> is 70) but at a 70% tilt, I dropped to 3.7. Someone at 3 would be on

a

> waiting list for a heart transplant.

>

> My body is compensating by pushing adrenaline to raise my pulse, but

> having done this decades, the mechanism is starting to wear down.

> Normal stroke volume is 115, I was at 86 lying down but at 41 at a

70%

> tilt. Basically, whenever I stand up, I am in heart failure.

>

> These tests results match my intuition after reading about this

theory

> on the Dallas Ft. Worth CFIDS website.

>

> Helen

June 9, 2005

Which testing method was used to measure output?

Thanks,

Jim

June 9, 2005

Helen,

>Basically, whenever I stand up, I am in heart failure.

I feel exactly the same as you do, I can't stand for more than a few minutes or

I feel like I am going to pass out. I can sometimes go for shortish walks

though.

Nelly

diastolic heart failure confirmed

I have this. Lying down my blood flow was 6.3 liters per minute (normal

is 70) but at a 70% tilt, I dropped to 3.7. Someone at 3 would be on a

waiting list for a heart transplant.

My body is compensating by pushing adrenaline to raise my pulse, but

having done this decades, the mechanism is starting to wear down.

Normal stroke volume is 115, I was at 86 lying down but at 41 at a 70%

tilt. Basically, whenever I stand up, I am in heart failure.

These tests results match my intuition after reading about this theory

on the Dallas Ft. Worth CFIDS website.

Helen

June 9, 2005

> I have this. Lying down my blood flow was 6.3 liters per minute

(normal

> is 70) but at a 70% tilt,

> Helen

Was your test done using the Impedance Cardiography test ?

Thanks,

Al

June 9, 2005

I went and saw Cheney and got the impedance test that has been talked

about on here of late.

Helen

> Which testing method was used to measure output?

>

> Thanks,

>

> Jim

>

June 9, 2005

Yes.

> > I have this. Lying down my blood flow was 6.3 liters per minute

> (normal

> > is 70) but at a 70% tilt,

>

> > Helen

>

> Was your test done using the Impedance Cardiography test ?

>

> Thanks,

> Al

June 9, 2005

Are there any suggestions as to what to do about this heart condition

n

>

June 9, 2005

helen9jora wrote:

> I went and saw Cheney and got the impedance test that has been talked

> about on here of late. > Helen

Hi Helen,

Thanks for sharing your test results. I am eager to learn more about

this and am planning to order the tape of Dr. Cheney's talk in Texas

this month. Hopefully, I can have the test done here California, our

local hospital has the equipment.

If you don't mind telling us, now that Dr. Cheney has diagnosed you as

having diastolic heart failure, what treatment is he recommending for

you? Were you also tested for various pathogens? Will your treatment

include an antiviral?

Sandy

June 9, 2005

> Are there any suggestions as to what to do about this heart condition

>

> n

Hi n,

I think Dr. Cheney will have some answers on June 18 at his lecture

in Dallas. A video will be available of that lecture.

See www.virtualhometown.com/dfwcfids and click on the April 2005

newsletter for more info.

Al

June 9, 2005

Take Hawthorn

Adrienne

RE: Re: diastolic heart failure confirmed

Are there any suggestions as to what to do about this heart condition

n

>

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.

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

June 9, 2005

They are going to send me some information geared to my particular

situation, for instance, I am in the 20% subset that runs on adrenaline

in hyperdrive to maintain my circulation, so he doesn't give everyone

the same stuff necessarily, is my understanding.

Helen

> Are there any suggestions as to what to do about this heart condition

>

> n

> >

June 9, 2005

I'm not sure yet what exactly I will be taking. Some of things

discussed on the Dallas Ft Worth link, some things geared to my

particular situation. He didn't do any other kind of test, no blood

work. But I have been there before and they took lots of blood so he

has old information on me, I guess.

Helen

> > I went and saw Cheney and got the impedance test that has been

talked

> > about on here of late. > Helen

>

> Hi Helen,

>

> Thanks for sharing your test results. I am eager to learn more

about

> this and am planning to order the tape of Dr. Cheney's talk in Texas

> this month. Hopefully, I can have the test done here California, our

> local hospital has the equipment.

>

> If you don't mind telling us, now that Dr. Cheney has diagnosed you

as

> having diastolic heart failure, what treatment is he recommending

for

> you? Were you also tested for various pathogens? Will your

treatment

> include an antiviral?

>

> Sandy

June 9, 2005

What are the numbers 86 and 41? Your blood pressure?

What happened to your pulse? When I had my tilt test, my bp went to 50/30 very

shortly into tilt. But my pulse went up. Supposedly when the heart is the

problem, the pulse goes down which that happens.

Just to clarify, I don't believe that testing positive on the tilt test means

you have something wrong with your heart. I don't think there is anything wrong

with mine or I wouldn't have recovered. I admit I haven't read the new Cheney

heart stuff in detail, but what happened to the belief that it is the autonomic

nervous system and HPA axis which are causing the problem we have?

Doris

diastolic heart failure confirmed

I have this. Lying down my blood flow was 6.3 liters per minute (normal

is 70) but at a 70% tilt, I dropped to 3.7. Someone at 3 would be on a

waiting list for a heart transplant.

My body is compensating by pushing adrenaline to raise my pulse, but

having done this decades, the mechanism is starting to wear down.

Normal stroke volume is 115, I was at 86 lying down but at 41 at a 70%

tilt. Basically, whenever I stand up, I am in heart failure.

June 9, 2005

Al-You are a smart guy so I will ask you. Cheney had idiopathic

cardiomyopathy. Is diastolic heart failure the same thing or

are we talking about two different diseases? Thanks,

Mike C

> > Are there any suggestions as to what to do about this heart

condition

> >

> > n

>

> Hi n,

>

> I think Dr. Cheney will have some answers on June 18 at his

lecture

> in Dallas. A video will be available of that lecture.

>

> See www.virtualhometown.com/dfwcfids and click on the April 2005

> newsletter for more info.

>

> Al

June 9, 2005

> Al-You are a smart guy so I will ask you. Cheney had idiopathic

> cardiomyopathy. Is diastolic heart failure the same thing or

> are we talking about two different diseases? Thanks,

>

> Mike C

Hi Mike,

Based on what I read idiopathic Cardiomyopathy just means the cause

of the cardiomyopathy is unknown.

Diastolic heart failure is terminology that refers to something else

but I can't remember, but it is mentioned in the DFW CFIDS website

newsletter.

Al

June 9, 2005

There are many factors that influence blood flow, and subsequently

cardiac output. Your blood flow rate and tilt table response could

very easily be due to hypovolemia. Based on Drs. Streeten and

Bell's findings of high incidence of hypovolemia in CFS, my guess is

that that is possibly the case.

The heart pumps out as much blood as flows into it. That your

stroke volume dropped from 86 or 41 during the tilt test may only be

an indicator that less blood was getting to the heart. Not

necessarily that the heart was unable to pump the blood. Which

makes more sense, than that the tilt is drastically and immediately

influencing the hearts pumping ability.

When you stand up, blood flow may be like that of someone in heart

failure, but that does not mean that the heart is failing. That is

not to say the the situation is less serious. Hypovolemic shock is

serious and leads to further blood volume decrease.

For anyone interested in reading my take on CFS and cardiomyopathy

you can read it in the article " CFS-FMS and Heart Disease; A few

thoughts " at

http://www.xmission.com/~total/temple/Soapbox/mainpage.php3

For those planning to attend Dr. Cheney's presentation, maybe it

will inspire some questions to ask him.

All the best,

Jim

> I have this. Lying down my blood flow was 6.3 liters per minute

(normal

> is 70) but at a 70% tilt, I dropped to 3.7. Someone at 3 would be

on a

> waiting list for a heart transplant.

>

> My body is compensating by pushing adrenaline to raise my pulse,

but

> having done this decades, the mechanism is starting to wear down.

> Normal stroke volume is 115, I was at 86 lying down but at 41 at a

70%

> tilt. Basically, whenever I stand up, I am in heart failure.

>

> These tests results match my intuition after reading about this

theory

> on the Dallas Ft. Worth CFIDS website.

>

> Helen

June 9, 2005

Helen,

When you say you run on adrenaline to maintain circulation, what does that mean?

I don't seem to have the problem of a very slow pulse. My heart rate is always

in the 70-80 range a lot at rest and can go higher when walking or doing

anything too physical. And, when I have reactions to foods, chemicals/meds, it

goes even higher. Does this fit your senario?

Thanks.

Dawn

Re: diastolic heart failure confirmed

They are going to send me some information geared to my particular

situation, for instance, I am in the 20% subset that runs on adrenaline

in hyperdrive to maintain my circulation, so he doesn't give everyone

the same stuff necessarily, is my understanding.

Helen

> Are there any suggestions as to what to do about this heart condition

>

> n

> >

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.

June 9, 2005

I am not entirely sure, think it is just an inference he drew during

the test, based on how my pulse and blood flow varied. Lying down

initially on the table I was reading not too far from normal but that

all changed dramatically as he started tilting me up.

My intuitive sense of it is that he is correct, just knowing how

intense and hyper I have been since childhood. Everything was fast,

fast, fast about me before I got ill, I ran on adrenaline and I'm

wonddering now if there isn't some causative factor at work. I can

remember having severe insomnia as a preschooler, for example. Lying

there cranking the rpms unable to sleep.

My heart pounds on any exertion. My pulse goes from 70s to 100s just

from standing up. Have food and chemical sensitivities but haven't

pulse tested myself on them.

Helen

> > Are there any suggestions as to what to do about this heart

condition

> >

> > n

> > >

>

> 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.

>

June 9, 2005

The average blood flow for healthy but sedentary adults and less severe CFS

patients while standing in the Peckerman study was 4.8. The average blood flow

for the more disabled CFS patients was about what you had 3.7. Thats about 20%

less than average. There is a disagreement about how significant that drop is;

Cheney thinks this means you are in heart failure - Peckerman - who is a

cardiologist says in the paper that it is in the 'low normal' range. I dont

think this issue has been resolved at all. There are lots of ambiguities that

Cheney does not mention - or at least Carol Sieverling does not - in that paper.

You can check some of them out at

http://www.phoenix-cfs.org/Cardiovascular%20Studies.htm

One unknown aspect of this, for example, is body size, sex, weight etc. From

what I've read a smaller woman will have a significantly lower rate of blood

flow - as you'd expect - than a male twice her size.

Nothing in your tests appears to state that you have diastolic versus systolic

dysfunction that I can tell, as well. It takes an imaging device to determine

that. I know thats what Cheney thinks but there is evidence for systolic

dysfunction in CFS as well.

helen9jora <helenjora@...> wrote:

I have this. Lying down my blood flow was 6.3 liters per minute (normal

is 70) but at a 70% tilt, I dropped to 3.7. Someone at 3 would be on a

waiting list for a heart transplant.

My body is compensating by pushing adrenaline to raise my pulse, but

having done this decades, the mechanism is starting to wear down.

Normal stroke volume is 115, I was at 86 lying down but at 41 at a 70%

tilt. Basically, whenever I stand up, I am in heart failure.

These tests results match my intuition after reading about this theory

on the Dallas Ft. Worth CFIDS website.

Helen

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.

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

June 9, 2005

The autonomic nervous system theory is stronger than ever - its just Cheney

doesnt appear to buy into it and he gets the publicity in the patient

population. Bells newsletter just had an interesting article on autonomic issues

and there is a good bit of research on orthostatic intolerance in CFS. I think

the HPA axis theory is fading. If you want to check out more on cardiovascular

issues in CFS and a possible autonomic component you can find it at

http://www.phoenix-cfs.org/Cardiovascular%20Studies.htm

Doris Brown <dorisbrown9@...> wrote:

What are the numbers 86 and 41? Your blood pressure?

What happened to your pulse? When I had my tilt test, my bp went to 50/30 very

shortly into tilt. But my pulse went up. Supposedly when the heart is the

problem, the pulse goes down which that happens.

Just to clarify, I don't believe that testing positive on the tilt test means

you have something wrong with your heart. I don't think there is anything wrong

with mine or I wouldn't have recovered. I admit I haven't read the new Cheney

heart stuff in detail, but what happened to the belief that it is the autonomic

nervous system and HPA axis which are causing the problem we have?

Doris

diastolic heart failure confirmed

I have this. Lying down my blood flow was 6.3 liters per minute (normal

is 70) but at a 70% tilt, I dropped to 3.7. Someone at 3 would be on a

waiting list for a heart transplant.

My body is compensating by pushing adrenaline to raise my pulse, but

having done this decades, the mechanism is starting to wear down.

Normal stroke volume is 115, I was at 86 lying down but at 41 at a 70%

tilt. Basically, whenever I stand up, I am in heart failure.

June 10, 2005

Cort,

Your website is outstanding! Each time I read a page there, I am

amazed by the amount of information and work that has gone into it.

You do an excellent job of bringing together the research and

explaining it all. Thanks for sharing your knowledge and for the time

and effort that you have spent creating a great site.

I encourage everyone who didn't already click on the link below to do

so and take a look.

Sandy

--- cort johnson <cortttt@y...> wrote:

> The autonomic nervous system theory is stronger than ever - its

just Cheney doesnt appear to buy into it and he gets the publicity in

the patient population. Bells newsletter just had an interesting

article on autonomic issues and there is a good bit of research on

orthostatic intolerance in CFS. I think the HPA axis theory is

fading. If you want to check out more on cardiovascular issues in

CFS and a possible autonomic component you can find it at

>

> http://www.phoenix-cfs.org/Cardiovascular%20Studies.htm

June 10, 2005

I might have systolic dysfunction as well, need to get some more

tests done. I also might have something even worse, like a hole in my

heart. In my particular case, I have hypermobile joints. I wonder how

many with CFIDS do. I'm not convinced we all have the same thing.

You know how humans have opposable thumbs, differentiating them from

the other primates? Well, I have superopposable thumbs, can park my

thumb on top of my hand behind first knuckle of forefinger. My knees

dislocate easily and my shoulders rock around. Have a super ectomorph

build. I don't know if I have Ehlers-Danlos but I'm on the continuum.

I don't think I have Marfans or I'd have died by now, but maybe

there's a continuum and I'm on it. I sort of look like I have

Marfans. So maybe I just have a bad heart and nobody ever figured it

out.

When I was young I was into running and ran a lot and didn't drop

dead, so who knows? I haven't been able to run or even walk fast for

decades now. To me it seems like something changed but maybe I have

some kind of progressive heart failure that is progressing slowly,

because I am worse than I was ten years ago.

There is all this talk about cognitive problems in CFIDS but for me

my body was more affected. Now I have some cognitive problems because

of being on Neurontin. Remember in Osler's Web there was this test of

counting back from 100 by 7 that a lot of people with CFIDS can't do?

I can rattle it off snap, even with the Neurontin onboard. Why is

that?

Helen

> The average blood flow for healthy but sedentary adults and less

severe CFS patients while standing in the Peckerman study was 4.8.

The average blood flow for the more disabled CFS patients was about

what you had 3.7. Thats about 20% less than average. There is a

disagreement about how significant that drop is; Cheney thinks this

means you are in heart failure - Peckerman - who is a cardiologist

says in the paper that it is in the 'low normal' range. I dont think

this issue has been resolved at all. There are lots of ambiguities

that Cheney does not mention - or at least Carol Sieverling does not -

in that paper.

>

> You can check some of them out at

> http://www.phoenix-cfs.org/Cardiovascular%20Studies.htm

>

> One unknown aspect of this, for example, is body size, sex, weight

etc. From what I've read a smaller woman will have a significantly

lower rate of blood flow - as you'd expect - than a male twice her

size.

>

> Nothing in your tests appears to state that you have diastolic

versus systolic dysfunction that I can tell, as well. It takes an

imaging device to determine that. I know thats what Cheney thinks

but there is evidence for systolic dysfunction in CFS as well.

>

June 10, 2005

Excuse me, but wouldn't an autonomic problem be capable of causing problem with

stroke volume?

Adrienne

diastolic heart failure confirmed

I have this. Lying down my blood flow was 6.3 liters per minute (normal

is 70) but at a 70% tilt, I dropped to 3.7. Someone at 3 would be on a

waiting list for a heart transplant.

My body is compensating by pushing adrenaline to raise my pulse, but

having done this decades, the mechanism is starting to wear down.

Normal stroke volume is 115, I was at 86 lying down but at 41 at a 70%

tilt. Basically, whenever I stand up, I am in heart failure.

June 10, 2005

Well, my disorder is progressing, too. That is in spite of an awful lot of

symptoms improving. And in spite of peaks of improvement overall. The bottom

line is I am weaker and can do less. More fatigable.

And of ALL the theories I have read about this heart thing is the one that

matches my experience best. The only other things that are clear at all are

immune and endocrine symtoms.