Re: diastolic heart failure confirmed

[Guest guest]

You know there is some connection between joint hypermobility and CFS. THeres

more info on this at

http://www.phoenix-cfs.org/Orthostatic%20intolerance%20-%20source.htm

under the Ehlers-danlos section. There is a short test for it at the site.

Are you tall and thin? Can you get to a doctor. They should be able to diagnose

Ehler danlos. I wonder if there are treatments for it?

helen9jora <helenjora@...> wrote:

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.

>

>

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]

Hi Cort:

Thanks for this. I've talked to two doctors this year about my

hypermobility, one a local guy who does prolotherapy and worked on my

knees, and he thought I was on the Ehler Danlos continuum and Cheney

last week, who said if I have a hole in my heart it will show up on

the echocardiogram I'm going to get.

Re your test:

Pull back the fifth finger of either hand beyond 90 degrees (possible

2 points).. Nope

Touch either thumb to the underside of the forearm _Yes, both of

them. Also I can put them on top of my hands.

Hyperextend either knee beyond 190 degrees - No but they dislocate

easily

Hyperextend either elbow 190 degrees -No

Put both palms flat on the floor without bending your knees while

bent at the waist. No way, have never even been able to touch my

toes. I got long arms but my legs are even longer.

I am 5:6, above average but not really tall, and very thin.

So I think maybe I don't actually have Ehlers Danlos but maybe there

is a genetic connection between hypermobility and heart problems.

This one doctor I saw considered me for Marfan's but then decided I

didn't have it. My wingspan is slightly less than my height, which is

the one test I know for it.

I will be getting the echocardiogram in mid July and will know more

about my heart then.

thanks for the information, I was wondering about 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.

> >

> >

>

>

>

>

> 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]

But the ANS could be problematic precisely due to heavy metals and neurotropic

pathogens.

It is definitely an extremely complex thing.

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.

[Guest guest]

Thats all good news! Its good you dont have Marfans or Ehlers-danlos syndrome.

One mysterious syndrome is enough. Please let us know about the echocardiogram

and how Cheney's program is working out for you.

helen9jora <helenjora@...> wrote:

Hi Cort:

Thanks for this. I've talked to two doctors this year about my

hypermobility, one a local guy who does prolotherapy and worked on my

knees, and he thought I was on the Ehler Danlos continuum and Cheney

last week, who said if I have a hole in my heart it will show up on

the echocardiogram I'm going to get.

Re your test:

Pull back the fifth finger of either hand beyond 90 degrees (possible

2 points).. Nope

Touch either thumb to the underside of the forearm _Yes, both of

them. Also I can put them on top of my hands.

Hyperextend either knee beyond 190 degrees - No but they dislocate

easily

Hyperextend either elbow 190 degrees -No

Put both palms flat on the floor without bending your knees while

bent at the waist. No way, have never even been able to touch my

toes. I got long arms but my legs are even longer.

I am 5:6, above average but not really tall, and very thin.

So I think maybe I don't actually have Ehlers Danlos but maybe there

is a genetic connection between hypermobility and heart problems.

This one doctor I saw considered me for Marfan's but then decided I

didn't have it. My wingspan is slightly less than my height, which is

the one test I know for it.

I will be getting the echocardiogram in mid July and will know more

about my heart then.

thanks for the information, I was wondering about 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.

> >

> >

>

>

>

>

> 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]

Thank you!!!!!

Olson <sanols02@...> wrote: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

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.

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