Re: Re: , cortef, impedence

[Guest guest]

Hi ,

I began low dose cortef in early 1998 after I brought " From Fatigued to

Fantastic " to the neurologist who was first treating me. I first started with

2.5 mg. in AM and over time got up to about 7.5 mg. if I remember correctly. I

know I got a big boost in energy from the stuff but found over time my body

craved more and more. Then I think they came out with a study showing it wasn't

beneficial for PWC's over the long term. I wonder if I should give it another

try? I think the initial fear was that your body would start producing less

cortisol over time in proportion to the dose you took. What dose are you taking

and when during the day are you taking it? Any guess on what percentage of

PWC's Cheney is prescribing it to? By the way, my impedence test indicated my

heart was pumping 5.1 litres/minute when supine and 3.7 after standing 10

minutes. Isn't this about the average results Cheney is seeing in his patients

that he's determining have diastolic cardiomyopathy? Take

care, Steve B.

Lucey <susan.lucey@...> wrote:

Steve,

Dr Cheney is treating me with Cortef. I started in Nov. My situation is

not universal for PWCFIDS. I did want you to know he is prescribing it.

L

On Feb 14, 2006, at 2:39 PM, Bullock wrote:

> Sara,

> Â Â

>  From whom did you hear Cheney is recommending Cortef? Steve B.

>

> Mercuria <mercuria@...> wrote:

> Â

> On Jan 31, 2006, at 4:47 AM, Phil wrote:

> > Steve,

> >

> > I have read that poor adrenal function contributes to poor response

> > in the way that blood vessels constrict in response to changes in

> > position or activity - for example when standing, the vessels should

> > constrict to stop pooling in the lower limbs. However poor adrenal

> > function means the hormones (I forget what they are) needed to

> > provide this response automatically aren't there in sufficient

> > quantities, leading to blackouts when you stand up (happens to me!)

> > and difficulty standing still (eg - tilt table test).

> >

> > I may be wrong, but I would have thought that this poor response in

> > turn affects the way the heart works in the circumstances you

> > describe.

>

> Which, as I understand it, is why Cheney is among those advocatingÂ

> low doses of Cortef as one possible treatment for OI.

>

> Sara

>

>

>

> 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.

>

>

>

> Â

[Guest guest]

Hi Steve,

A little history - Since last June, I was in terrible shape. I couldn't

eat, I was in excruciating pain, am treated with morphine around the

clock...and if I pretreated my stomach with narcotics, I could handle

the pain of food in my stomach. I lost thirty lbs. I had many consults

with Cheney, most of them, I have no memory of, except he was trying to

figure out what he could do for me. Finally Cheney heard me say I was

fading away and it was some kind of aha moment for him and he put me on

Cortef. I was able to get out of bed the next day. I felt my life had

been saved. I was able to eat and gained weight, blood volume improved,

my heart hurt less. Unfortunately, the effect lasted 5 weeks and then I

started to decline back to being bed-bound.

In my case, with Cortef, he said, well it doesn't matter if I give you

a high dose, they (the adrenals) aren't hardly working anyways. He had

said I was near addisonian for 6 years, So he put me on 20mg at 7 AM

and 10mg at 6PM. I do know he is treating other PWC's but I don't know

how many. My supine echo was 3.35. I don't know the average now that he

has been testing for a year, but I do know some of my friend's output

and yours is more what their average was, but it's still a guess. I am

sure there are Cheney patients out there who can answer your questions

more accurately.

Blessings-

L

On Feb 15, 2006, at 1:11 PM, Bullock wrote:

> Hi ,

>   

>   I began low dose cortef in early 1998 after I brought " From

> Fatigued to Fantastic " to the neurologist who was first treating me. 

> I first started with 2.5 mg. in AM and over time got up to about 7.5

> mg. if I remember correctly.  I know I got a big boost in energy from

> the stuff but found over time my body craved more and more.  Then I

> think they came out with a study showing it wasn't beneficial for

> PWC's over the long term.  I wonder if I should give it another try? 

> I think the initial fear was that your body would start producing less

> cortisol over time in proportion to the dose you took.  What dose are

> you taking and when during the day are you taking it?  Any guess on

> what percentage of PWC's Cheney is prescribing it to?  By the way, my

> impedence test indicated my heart was pumping 5.1 litres/minute when

> supine and 3.7 after standing 10 minutes.  Isn't this about the

> average results Cheney is seeing in his patients that he's determining

> have diastolic cardiomyopathy?  Take

> care, Steve B.

>

> Lucey <susan.lucey@...> wrote:

>   Steve,

>

> Dr Cheney is treating me with Cortef. I started in Nov. My situation

> is

> not universal for PWCFIDS. I did want you to know he is prescribing

> it.

>

> L

>

> On Feb 14, 2006, at 2:39 PM, Bullock wrote:

>

> > Sara,

> >  Â Â

> >    From whom did you hear Cheney is recommending Cortef?  Steve B.

> >

> >  Mercuria <mercuria@...> wrote:

> >  Â

> >  On Jan 31, 2006, at 4:47 AM, Phil wrote:

> >  > Steve,

> >  >

> >  > I have read that poor adrenal function contributes to poor

> response

> >  > in the way that blood vessels constrict in response to changes in

> >  > position or activity - for example when standing, the vessels

> should

> >  > constrict to stop pooling in the lower limbs. However poor

> adrenal

> >  > function means the hormones (I forget what they are) needed to

> >  > provide this response automatically aren't there in sufficient

> >  > quantities, leading to blackouts when you stand up (happens to

> me!)

> >  > and difficulty standing still (eg - tilt table test).

> >  >

> >  > I may be wrong, but I would have thought that this poor response

> in

> >  > turn affects the way the heart works in the circumstances you

> >  > describe.

> >

> >  Which, as I understand it, is why Cheney is among those advocatingÂ

> >  low doses of Cortef as one possible treatment for OI.

> >

> >  Sara

> >

> >

> >

> >  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]

,

did Cheney gave you any idea on if and when you would be able to quit

cortef?I think my adrenals are in same shape as yours. Taking Isocort at

full dosage.Not being able to quit.

Best wishes

nil

Hi Steve,

A little history - Since last June, I was in terrible shape. I couldn't

eat, I was in excruciating pain, am treated with morphine around the

clock...and if I pretreated my stomach with narcotics, I could handle

the pain of food in my stomach. I lost thirty lbs. I had many consults

[Guest guest]

Hi

Nice to see you posting.

mjh

[Guest guest]

Hi Nil,

I haven't talked about stopping with Cheney, I started Cortef at the

middle of Nov 05. I'm not out of the woods for the reasons he started

me in the first place.

How long have you been on Isocort?

Blessings-

L

On Feb 17, 2006, at 11:56 AM, yildiz wrote:

> ,

>

> did Cheney gave you any idea on if and when you would be able to quit

> cortef?I think my adrenals are in same shape as yours. Taking Isocort

> at

> full dosage.Not being able to quit.

> Best wishes

> nil

>

>

>

> Hi Steve,

>

> A little history - Since last June, I was in terrible shape. I

> couldn't

> eat, I was in excruciating pain, am treated with morphine around the

> clock...and  if I pretreated my stomach with narcotics, I could handle

> the pain of food in my stomach. I lost thirty lbs.  I had many

> consults

>

>

>

> 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 ,

I am on full dosage for 4-5 years.

Best wishes.

Nil

Re: Re: , cortef, impedence

Hi Nil,

I haven't talked about stopping with Cheney, I started Cortef at the

middle of Nov 05. I'm not out of the woods for the reasons he started

me in the first place.

How long have you been on Isocort?

Blessings-

[Guest guest]

While Dr Cheney and Dr Enlander share a number of ideas on treatment of CFS,

they are divergent on long term use of Cortef.

Dr Enlander considers that long term cortef atrophies the adrenal and in

turn the body will need increasingly higher doses of extrinsic adrenal hormone

or precursors

Joy

Research assistant to Dr Enlander

_www.enlander.com_ (http://www.enlander.com/)

In a message dated 2/15/2006 11:12:31 A.M. Pacific Standard Time,

steverbullock@... writes:

Hi ,

I began low dose cortef in early 1998 who was first treating me. I first

started with 2.5 mg. in AM and over time got up to about 7.5 mg. if I remember

correctly. I know I got a big boost in energy from the stuff but found over

time my body craved more and more. Then I think they came out with a study

showing it wasn't beneficial for PWC's over the long term. I wonder if I

should give it another try? I think the initial fear was that your body would

start producing less cortisol over time in proportion to the dose you took.

What dose are you taking and when during the day are you taking it? Any

guess on what percentage of PWC's Cheney is prescribing it to? By the way, my

impedence test indicated my heart was pumping 5.1 litres/minute when supine and

3.7 after standing 10 minutes. Isn't this about the average results Cheney

is seeing in his patients that he's determining have diastolic

cardiomyopathy? Take

care, Steve B.

[Guest guest]

I just started low dose cortef to give my adrenals a rest. Can you please tell

me more about how to do this therapy w/o causing the adrenals to athophy?

Lee

Re: Re: , cortef, impedence

While Dr Cheney and Dr Enlander share a number of ideas on treatment of CFS,

they are divergent on long term use of Cortef.

Dr Enlander considers that long term cortef atrophies the adrenal and in

turn the body will need increasingly higher doses of extrinsic adrenal hormone

or precursors

Joy

Research assistant to Dr Enlander

_www.enlander.com_ (http://www.enlander.com/)

In a message dated 2/15/2006 11:12:31 A.M. Pacific Standard Time,

steverbullock@... writes:

Hi ,

I began low dose cortef in early 1998 who was first treating me. I first

started with 2.5 mg. in AM and over time got up to about 7.5 mg. if I

remember

correctly. I know I got a big boost in energy from the stuff but found over

time my body craved more and more. Then I think they came out with a study

showing it wasn't beneficial for PWC's over the long term. I wonder if I

should give it another try? I think the initial fear was that your body

would

start producing less cortisol over time in proportion to the dose you took.

What dose are you taking and when during the day are you taking it? Any

guess on what percentage of PWC's Cheney is prescribing it to? By the way,

my

impedence test indicated my heart was pumping 5.1 litres/minute when supine

and

3.7 after standing 10 minutes. Isn't this about the average results Cheney

is seeing in his patients that he's determining have diastolic

cardiomyopathy? Take

care, Steve B.

[Guest guest]

Hi Joy,

Does Dr Cheney believe in the long term use of Cortef?

Thanks,

L

On Feb 28, 2006, at 6:35 AM, DEnlander@... wrote:

>

>

> While Dr Cheney and Dr Enlander share a number of ideas on treatment

> of  CFS,

> they are divergent on long term use of Cortef.

> Dr Enlander considers that long term cortef atrophies the adrenal and

> in 

> turn the body will need increasingly higher doses of extrinsic

> adrenal hormone 

> or precursors

>

> Joy

> Research assistant to Dr Enlander

> _www.enlander.com_ (http://www.enlander.com/)

>

>

>

> In a message dated 2/15/2006 11:12:31 A.M. Pacific Standard Time, 

> steverbullock@... writes:

>

> Hi  ,

>

> I began low dose cortef in early 1998   who was first treating me.  I

> first

> started with 2.5 mg. in AM and over  time got up to about 7.5 mg. if

> I remember

> correctly.  I know I got a big  boost in energy from the stuff but

> found over

> time my body craved more and  more.  Then I think they came out with

> a study

> showing it wasn't  beneficial for PWC's over the long term.  I wonder

> if I

> should give it  another try?  I think the initial fear was that your

> body would

> start  producing less cortisol over time in proportion to the dose

> you took.  

> What dose are you taking and when during the day are you taking it? 

> Any 

> guess on what percentage of PWC's Cheney is prescribing it to?  By

> the  way, my

> impedence test indicated my heart was pumping 5.1 litres/minute when 

> supine and

> 3.7 after standing 10 minutes.  Isn't this about the average  results

> Cheney

> is seeing in his patients that he's determining have diastolic 

> cardiomyopathy?  Take

> care, Steve B.

>

>

>

>

>

>

>

>

>