high pulse rate

December 23, 2005

Why is my pulse rate so high? My blood pressure is normal. Resting in bed last night my pulse was 77, which is very good for me. First thing this morning before getting out of bed it was 90, then I stood up and took my pulse, it was 104. Yikes. Any thoughts?

(I have CFS, IBS, food intolerances, sinus problems, sleep apnea, adrenal fatigue)

Ann

December 23, 2005

I am having amazing success with antifungals

Lamisil

and

fungilin

all my symptoms are in remmision..

bleu

On 23 Dec 2005, at 18:35, Ann Greenberger wrote:

> Â

> Why is my pulse rate so high? My blood pressure is normal. Resting in

> bed last night my pulse was 77, which is very good for me. First thing

> this morning before getting out of bed it was 90, then I stood up and

> took my pulse, it was 104. Yikes. Any thoughts?

> Â

> (I have CFS, IBS, food intolerances, sinus problems, sleep apnea,

> adrenal fatigue)

> Â

> Ann

> <unknown.gif>

>

December 23, 2005

ï»¿

bleu - this is fantastic news...thanks for sharing and i know you will have a wonderrful xmas,

deb

Re: [infections] high pulse rate

I am having amazing success with antifungals Lamisil and fungilinall my symptoms are in remmision..bleuOn 23 Dec 2005, at 18:35, Ann Greenberger wrote:

Why is my pulse rate so high? My blood pressure is normal. Resting in bed last night my pulse was 77, which is very good for me. First thing this morning before getting out of bed it was 90, then I stood up and took my pulse, it was 104. Yikes. Any thoughts? (I have CFS, IBS, food intolerances, sinus problems, sleep apnea, adrenal fatigue) Ann <unknown.gif>

December 24, 2005

Have you had your thyroid checked?Colourbleu <colourbleu@...> wrote: I am having amazing success with antifungalsLamisilandfungilinall my symptoms are in remmision..bleuOn 23 Dec 2005, at 18:35, Ann Greenberger wrote:> Â > Â > Why is my pulse rate so high? My blood pressure is normal. Resting in > bed last night my pulse was 77, which is very good for me. First thing > this morning before getting out of bed it was 90, then I stood up and > took my pulse, it was 104. Yikes. Any thoughts?> Â > (I have CFS, IBS, food intolerances, sinus problems, sleep apnea, > adrenal fatigue)> Â > Ann> >>>>>

December 24, 2005

That is great news.Happy HolidaysColourbleu <colourbleu@...> wrote: I am having amazing success with antifungalsLamisilandfungilinall my symptoms are in remmision..bleuOn 23 Dec 2005, at 18:35, Ann Greenberger wrote:> Â > Â > Why is my pulse rate so high? My blood pressure is normal. Resting in > bed last night my pulse was 77, which is very good for me. First thing > this morning before getting out of bed it was 90, then I stood up and > took my pulse, it was 104. Yikes. Any thoughts?> Â > (I have CFS, IBS, food intolerances, sinus problems, sleep apnea, > adrenal fatigue)> Â > Ann> >>>>>

December 24, 2005

Hi, Ann.

For what it's worth, this is called POTS (postural orthostatic

tachycardia syndrome). It's very common in CFS. Until recently,

there wasn't a good explanation for it. Now, it's beginning to look

as though the reason may be that in CFS, particularly in the later

phases, there is frequently found a diastolic cardiomyopathy, which

results in lower than normal cardiac output. In other words, the

heart muscle cells are unable to produce ATP fast enough to allow

the heart muscle to relax as fast as it should when the left

ventricle is filling with blood. As a result, the heart does not

pump as much blood out per minute as it should. When a person with

this condition is lying down, the heart fills more, and they are

closer to normal. When they stand, because of gravity, it is more

difficult for the heart to fill with blood, and the cardiac output

goes down. The adrenal then puts out more adrenaline, and this

causes the heart rate to rise, in an effort to get more perfusion of

blood to the brain.

The low cardiac output in CFS was first reported by Arnold Peckerman

et al. about two years ago. Dr. Cheney has picked up on this,

and has measured cardiac output in his patients using impedance

cardiography, and has characterized the cardiomyopathy he has

observed in most of his CFS patients using the General Electric

vivid 7 echocardiograph. Using the latter instrument, he has been

able to determine the diastolic nature of the cardiomyopathy.

Dr. Myhill in Wales has also taken note of Peckerman's work,

and she is now giving her CFS patients the treatments recommended by

Dr. Sinatra, which include coenzyme Q-10, carnitine,

magnesium, and D-ribose. She also adds B vitamins, minerals and

some other things. These seem to be helping quite a few patients.

In my own opinion, while these measures are helpful, they do not get

to the root cause of the diastolic cardiomyopathy, which is partial

blockades in the oxidative metabolism, i.e. the Krebs cycle and the

respiratory chain in the mitochondria of the heart muscle cells. I

believe that this is caused by glutathione depletion, which in turn

allows a rise in superoxide and peroxynitrite, which cause the

blockades.

To correct the glutathione depletion, I strongly suspect that in

many cases it will be necessary to correct a partial blockade in the

methylation cycle, as is done in autism by the DAN! doctors. This

involves the use of taurine, methylcobalamin, folinic acid,

trimethylglycine, pyridoxal-5'-phosphate, and dimethylglycine, which

ones depending on which genetic variations a person has.

Rich

>

> Network Blitz

>

> Why is my pulse rate so high? My blood pressure is normal. Resting

in bed

> last night my pulse was 77, which is very good for me. First thing

this

> morning before getting out of bed it was 90, then I stood up and

took my

> pulse, it was 104. Yikes. Any thoughts?

>

> (I have CFS, IBS, food intolerances, sinus problems, sleep apnea,

adrenal

> fatigue)

>

> Ann

>

December 24, 2005

Rich,

I thought that POTS would show a change in my blood pressure from lying down to standing, not in my pulse. Am I wrong about that?

Thanks!

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of rvankonynenSent: Friday, December 23, 2005 8:50 PMinfections Subject: [infections] Re: high pulse rateHi, Ann.For what it's worth, this is called POTS (postural orthostatic tachycardia syndrome). It's very common in CFS. Until recently, there wasn't a good explanation for it. Now, it's beginning to look as though the reason may be that in CFS, particularly in the later phases, there is frequently found a diastolic cardiomyopathy, which results in lower than normal cardiac output. In other words, the heart muscle cells are unable to produce ATP fast enough to allow the heart muscle to relax as fast as it should when the left ventricle is filling with blood. As a result, the heart does not pump as much blood out per minute as it should. When a person with this condition is lying down, the heart fills more, and they are closer to normal. When they stand, because of gravity, it is more difficult for the heart to fill with blood, and the cardiac output goes down. The adrenal then puts out more adrenaline, and this causes the heart rate to rise, in an effort to get more perfusion of blood to the brain.The low cardiac output in CFS was first reported by Arnold Peckerman et al. about two years ago. Dr. Cheney has picked up on this, and has measured cardiac output in his patients using impedance cardiography, and has characterized the cardiomyopathy he has observed in most of his CFS patients using the General Electric vivid 7 echocardiograph. Using the latter instrument, he has been able to determine the diastolic nature of the cardiomyopathy. Dr. Myhill in Wales has also taken note of Peckerman's work, and she is now giving her CFS patients the treatments recommended by Dr. Sinatra, which include coenzyme Q-10, carnitine, magnesium, and D-ribose. She also adds B vitamins, minerals and some other things. These seem to be helping quite a few patients.In my own opinion, while these measures are helpful, they do not get to the root cause of the diastolic cardiomyopathy, which is partial blockades in the oxidative metabolism, i.e. the Krebs cycle and the respiratory chain in the mitochondria of the heart muscle cells. I believe that this is caused by glutathione depletion, which in turn allows a rise in superoxide and peroxynitrite, which cause the blockades.To correct the glutathione depletion, I strongly suspect that in many cases it will be necessary to correct a partial blockade in the methylation cycle, as is done in autism by the DAN! doctors. This involves the use of taurine, methylcobalamin, folinic acid, trimethylglycine, pyridoxal-5'-phosphate, and dimethylglycine, which ones depending on which genetic variations a person has.Rich>> Network Blitz> > Why is my pulse rate so high? My blood pressure is normal. Resting in bed> last night my pulse was 77, which is very good for me. First thing this> morning before getting out of bed it was 90, then I stood up and took my> pulse, it was 104. Yikes. Any thoughts?> > (I have CFS, IBS, food intolerances, sinus problems, sleep apnea, adrenal> fatigue)> > Ann>

December 24, 2005

My thyroid a year ago was:

T3 109 (normal is 80-200)

T4 1.1 (normal is .93-1.7

My holistic doc would have said something if these were low, but maybe she overlooked something?

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of Marie MayberrySent: Friday, December 23, 2005 7:29 PMinfections Subject: Re: [infections] high pulse rate

Have you had your thyroid checked?Colourbleu <colourbleu@...> wrote: I am having amazing success with antifungalsLamisilandfungilinall my symptoms are in remmision..bleuOn 23 Dec 2005, at 18:35, Ann Greenberger wrote:> Â > Â > Why is my pulse rate so high? My blood pressure is normal. Resting in > bed last night my pulse was 77, which is very good for me. First thing > this morning before getting out of bed it was 90, then I stood up and > took my pulse, it was 104. Yikes. Any thoughts?> Â > (I have CFS, IBS, food intolerances, sinus problems, sleep apnea, > adrenal fatigue)> Â > Ann> >>>>>

December 25, 2005

ï»¿

Bleu,

Could you tell me more about that? What illness/infection do the antifungals treat? Candida? How do I know that is what my problem is? (blood tests don't show systemic candida, though I do have some candida symptoms).

Are those antifungals by prescription?

Thanks.

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of ColourbleuSent: Friday, December 23, 2005 2:14 PMinfections Subject: Re: [infections] high pulse rateI am having amazing success with antifungals Lamisil and fungilinall my symptoms are in remmision..bleuOn 23 Dec 2005, at 18:35, Ann Greenberger wrote:

Why is my pulse rate so high? My blood pressure is normal. Resting in bed last night my pulse was 77, which is very good for me. First thing this morning before getting out of bed it was 90, then I stood up and took my pulse, it was 104. Yikes. Any thoughts? (I have CFS, IBS, food intolerances, sinus problems, sleep apnea, adrenal fatigue) Ann <unknown.gif>

December 25, 2005

Hi, Ann.

A drop in blood pressure upon standing is called orthostatic

hypotension or OH. This is different from POTS. Some PWCs have

one, some the other, some both. There's also NMH, or neurally

mediated hypotension. That's one variety of OH. The early work by

Rowe and colleagues at s Hopkins using tilt table testing

in PWCs interpreted what they had as NMH.

Rich

> >

> > Network Blitz

> >

> > Why is my pulse rate so high? My blood pressure is normal.

Resting

> in bed

> > last night my pulse was 77, which is very good for me. First

thing

> this

> > morning before getting out of bed it was 90, then I stood up

and

> took my

> > pulse, it was 104. Yikes. Any thoughts?

> >

> > (I have CFS, IBS, food intolerances, sinus problems, sleep

apnea,

> adrenal

> > fatigue)

> >

> > Ann

> >

>

December 25, 2005

Hi, Ann.

One more thing. In my earlier post, I mentioned that Dr. Cheney has

found that most of his later stage PWCs (people with CFS) have

diastolic cardiomyopathy. I should also mention that Dr. A.

Lerner of Wayne State University near Detroit has for several years

been publishing papers about his work on viral cardiomyopathy in

PWCs. In this case, I think the cardiomyopathy would show up on

echocardiography as systolic cardiomyopathy. The idea here is that

the heart is able to fill with blood alright, but the heart muscle

is too weak (from viral damage) to pump out as much of the blood as

it should, and this shows up as a low ejection fraction, or fraction

of the blood entering the heart during diastole to the amount pumped

out during systole.) You didn't mention whether you have positive

antibody tests for Epstein-Barr or cytomegalovirus. These are the

two he has worked on. He uses a combination of Holter monitor

testing (24-hour electrocardiogram recording) to look for

alternating or flattened T waves, as well as detailed antibody

testing for the viruses to look for incomplete viral development.

In some people he has done biopsy of the heart muscle. When he

finds viral infection of the heart muscle, he treats it using

antiviral drugs.

Rich

> >

> > Network Blitz

> >

> > Why is my pulse rate so high? My blood pressure is normal.

Resting

> in bed

> > last night my pulse was 77, which is very good for me. First

thing

> this

> > morning before getting out of bed it was 90, then I stood up and

> took my

> > pulse, it was 104. Yikes. Any thoughts?

> >

> > (I have CFS, IBS, food intolerances, sinus problems, sleep

apnea,

> adrenal

> > fatigue)

> >

> > Ann

> >

>

December 25, 2005

happy xmas all

for those who have been around long enough (they will know im an old

hand here). Having been one of the first to start with benicar I found

great relief, shortly after, a serious problem occured that resulted in

me having a serious of adrenal crisis, (or very much similar) 4 of

which I was hosipitilised. (BTW IM 35). I soon became a warning signal

for others.

It took a long time to get over the problems brought about by these

crashes. (7 in total). about a year. As soon as I was well enough to

start expeirmenting again, I started a course of antifungals. My

symptoms were, sinus problems, head problems, concentration, serious

anxiity, increased heart rate, sleep problems, colon problems

(constipation) and incompleate bm. none was pleasent.

I am very happy to report that after about 2 months on fungilin

(fungizone) or Amp B, and about 1 month on Lamisil I am doing MUCH

better.

Colon is like fantastic in comparisin, head, anixity, weight gain

(Needed), sleep, most if not all symptoms are MUCH better. Im getting

through about 11 40ml bottles of fungilin / fungizone each month. Ive

made so much improvement I have managed to get 9 months worth of these

antifungals.

I hope this helps.

PS I have put my GF on these and strongly recommended these to other

members of family.

On 25 Dec 2005, at 16:08, Ann Greenberger wrote:

> Bleu,

> Could you tell me more about that? What illness/infection do the

> antifungals treat? Candida? How do I know that is what my problem is?

> (blood tests don't show systemic candida, though I do have some

> candida symptoms).

> Â

> Are those antifungals by prescription?

> Â

> Thanks.

> Â

>

> Ann

>

> Â

>> Re: [infections] high pulse rate

>>

>> I am having amazing success with antifungals

>>

>> Lamisil

>> and

>> fungilin

>>

>> all my symptoms are in remmision..

>>

>> bleu

>>

>> On 23 Dec 2005, at 18:35, Ann Greenberger wrote:

>>

>>> Â

>>> Why is my pulse rate so high? My blood pressure is normal. Resting

>>> in bed last night my pulse was 77, which is very good for me. First

>>> thing this morning before getting out of bed it was 90, then I stood

>>> up and took my pulse, it was 104. Yikes. Any thoughts?

>>> Â

>>> (I have CFS, IBS, food intolerances, sinus problems, sleep apnea,

>>> adrenal fatigue)

>>> Â

>>> Ann

>>> <unknown.gif>

>>>

December 26, 2005

Rich,

That's helpful. What is a PWC?

How do I know if I have POTS or OH or NMH? Is there any way to know without tilt table?

Would either of these make someone uncomfortable with air travel (the altitude change)?

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of rvankonynenSent: Sunday, December 25, 2005 12:24 PMinfections Subject: [infections] Re: high pulse rateHi, Ann.A drop in blood pressure upon standing is called orthostatic hypotension or OH. This is different from POTS. Some PWCs have one, some the other, some both. There's also NMH, or neurally mediated hypotension. That's one variety of OH. The early work by Rowe and colleagues at s Hopkins using tilt table testing in PWCs interpreted what they had as NMH.Rich> >> > Network Blitz> >> > Why is my pulse rate so high? My blood pressure is normal. Resting> in bed> > last night my pulse was 77, which is very good for me. First thing> this> > morning before getting out of bed it was 90, then I stood up and> took my> > pulse, it was 104. Yikes. Any thoughts?> >> > (I have CFS, IBS, food intolerances, sinus problems, sleep apnea,> adrenal> > fatigue)> >> > Ann> >> > > > > > >

December 26, 2005

Rich,

This is great information. Thank you. Yes, my blood tests show that I had epstein-barr virus in the past (had mono at age 20; am now mid 40s). What test(s) should I ask my primary care doctor to do? Or won't he know what to do? I also pay out of pocket for a holistic M.D. who is willing to do many alternative things--what should I ask her for?

How do I know if this is a heart problem? Someone else mentioned antifungals working.

For years, I've tried a lot of things, as most of us have, of course.

Best wishes,

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of rvankonynenSent: Sunday, December 25, 2005 12:33 PMinfections Subject: [infections] Re: high pulse rateHi, Ann.One more thing. In my earlier post, I mentioned that Dr. Cheney has found that most of his later stage PWCs (people with CFS) have diastolic cardiomyopathy. I should also mention that Dr. A. Lerner of Wayne State University near Detroit has for several years been publishing papers about his work on viral cardiomyopathy in PWCs. In this case, I think the cardiomyopathy would show up on echocardiography as systolic cardiomyopathy. The idea here is that the heart is able to fill with blood alright, but the heart muscle is too weak (from viral damage) to pump out as much of the blood as it should, and this shows up as a low ejection fraction, or fraction of the blood entering the heart during diastole to the amount pumped out during systole.) You didn't mention whether you have positive antibody tests for Epstein-Barr or cytomegalovirus. These are the two he has worked on. He uses a combination of Holter monitor testing (24-hour electrocardiogram recording) to look for alternating or flattened T waves, as well as detailed antibody testing for the viruses to look for incomplete viral development. In some people he has done biopsy of the heart muscle. When he finds viral infection of the heart muscle, he treats it using antiviral drugs. Rich> >> > Network Blitz> > > > Why is my pulse rate so high? My blood pressure is normal. Resting > in bed> > last night my pulse was 77, which is very good for me. First thing > this> > morning before getting out of bed it was 90, then I stood up and > took my> > pulse, it was 104. Yikes. Any thoughts?> > > > (I have CFS, IBS, food intolerances, sinus problems, sleep apnea, > adrenal> > fatigue)> > > > Ann> >>

December 26, 2005

I guess my question is who might be willing to do these cardio tests on me and also be able to interpret them?

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of rvankonynenSent: Sunday, December 25, 2005 12:33 PMinfections Subject: [infections] Re: high pulse rateHi, Ann.One more thing. In my earlier post, I mentioned that Dr. Cheney has found that most of his later stage PWCs (people with CFS) have diastolic cardiomyopathy. I should also mention that Dr. A. Lerner of Wayne State University near Detroit has for several years been publishing papers about his work on viral cardiomyopathy in PWCs. In this case, I think the cardiomyopathy would show up on echocardiography as systolic cardiomyopathy. The idea here is that the heart is able to fill with blood alright, but the heart muscle is too weak (from viral damage) to pump out as much of the blood as it should, and this shows up as a low ejection fraction, or fraction of the blood entering the heart during diastole to the amount pumped out during systole.) You didn't mention whether you have positive antibody tests for Epstein-Barr or cytomegalovirus. These are the two he has worked on. He uses a combination of Holter monitor testing (24-hour electrocardiogram recording) to look for alternating or flattened T waves, as well as detailed antibody testing for the viruses to look for incomplete viral development. In some people he has done biopsy of the heart muscle. When he finds viral infection of the heart muscle, he treats it using antiviral drugs. Rich> >> > Network Blitz> > > > Why is my pulse rate so high? My blood pressure is normal. Resting > in bed> > last night my pulse was 77, which is very good for me. First thing > this> > morning before getting out of bed it was 90, then I stood up and > took my> > pulse, it was 104. Yikes. Any thoughts?> > > > (I have CFS, IBS, food intolerances, sinus problems, sleep apnea, > adrenal> > fatigue)> > > > Ann> >>

December 27, 2005

Hi, Ann.

Because your heart rate rises significantly when you stand, I would

say that you do have POTS. I gather that your blood pressure does

not drop when you stand. If that's true, that I would say that you

don't have OH or the NMH type of OH.

There is some controversy about whether these can be diagnosed

simply by a stand-up test as opposed to a formal tilt-table test.

My own opinion is that if there is a severe case of POTS or OH, a

stand-up test is adequate, or one can simply believe what the person

says about their experience. I have no difficulty doing that, but

then, I'm not a licensed physician, so you can take my opinions for

what you think they are worth.

Licensed physicians have to justify their opinions to insurance

companies and HMOs, have to satisfy the state medical boards that

they are following the " standard of care, " have to give the

appearance of practicing " evidence-based medicine, " and have to

defend themselves against malpractice suits. That's the reason they

have to do things more formally. There is a recent paper from the

CDC about the issue of tilt-table tests vs. stand-up tests.

Yes, if you have low cardiac output, which is producing POTS, then I

think it is very likely that your brain is having difficulty getting

enough oxygen when you stand. In addition, I think it is very

possible that you would have difficulty with air travel, because at

normal flying altitude the cabin pressure is maintained equivalent

to that at about 7,000 feet, which means that the partial pressure

of oxygen is considerably less than at sea level. If your brain is

having difficulty getting enough oxygen at sea level or something

close to that, going to the equivalent of 7,000 feet would make this

even more difficult.

Rich

> > >

> > > Network Blitz

> > >

> > > Why is my pulse rate so high? My blood pressure is normal.

> Resting

> > in bed

> > > last night my pulse was 77, which is very good for me.

First

> thing

> > this

> > > morning before getting out of bed it was 90, then I stood

up

> and

> > took my

> > > pulse, it was 104. Yikes. Any thoughts?

> > >

> > > (I have CFS, IBS, food intolerances, sinus problems, sleep

> apnea,

> > adrenal

> > > fatigue)

> > >

> > > Ann

> > >

> >

December 27, 2005

Ann,

I guess that my question back to you would be where are you located,

and how far are you willing to travel?

I don't know of many doctors who are currently up to speed on the

cardiomyopathy in CFS. The best bet might be to check with the

makers of the equipment used and see if they will be willing to say

who in your area has their equipment. Then you could contact them

and see if they are familiar with diastolic cardiomyopathy and how

to characterize it using impedance cardiography and the newer, more

sophisticated echocardiography.

I think it's important to note, though, that even if you get a

diagnosis, the medical establishment currently does not know of a

successful cure for diastolic cardiomyopathy. If it turns out to be

the viral type, then I think Dr. Lerner has had some success with

antiviral drugs.

In my own opinion, the solution for the diastolic cardiomyopathy in

CFS is going to be to raise the level of glutathione. Some PWCs

have been able to raise their glutathione by various measures, which

I have outlined in a write-up that can be found at

http://www.phoenix-cfs.org/Glutathione%20Building%20in%20CFS.htm

Other PWCs have not found this to work for them. I suspect that in

those cases the methylation cycle is blocked, as it has been found

to be in autism, and this is holding down the glutathione level. To

find out about this, I suggest that you view the talks at

http://www.danwebcast.com

You will need to register at the lower left, but this is free, and

they will email you a password right away, so that you can watch the

videos. They are from the spring 2005 Boston meeting of the Defeat

Autism Now! organization, but I suspect that most of what is said

there about the biochemistry and the treatments will be applicable

to CFS as well as to autism.

Rich

> > >

> > > Network Blitz

> > >

> > > Why is my pulse rate so high? My blood pressure is normal.

> Resting

> > in bed

> > > last night my pulse was 77, which is very good for me. First

> thing

> > this

> > > morning before getting out of bed it was 90, then I stood up

and

> > took my

> > > pulse, it was 104. Yikes. Any thoughts?

> > >

> > > (I have CFS, IBS, food intolerances, sinus problems, sleep

> apnea,

> > adrenal

> > > fatigue)

> > >

> > > Ann

> > >

> >

>

December 27, 2005

Hi Rich,

Thank you so much for taking the time to response to my questions. You are clearly very knowledgeable. I haven't been on this list long enough to know your story. You have CFS? Lyme? Other? Do you have some other background that is the reason for your wide span of knowledge? Or, is it that you've had to research for your own health, like so many of us?

My holisitc M.D. is pretty good, but really, I don't feel she is advocating strongly enough for me. She'll tell me the next thing to try, or if I ask her, she'll give something a try. But I have to ask her. Right now, she says that I have CFS. She's given me supplements or homeopathics for sinus inflammation, IBS. The big thing is adrenal fatigue--lousy, very low levels. So I take Cortef and DHEA. Also really high level of cadmium (heavy metal), so taking chlorella. But if she doesn't find something in a test, she doesn't treat for it. Very odd approach for an alternative doc. So, I also need to find another practitioner who will do some muscle testing (are you familiar with that?) and maybe help me oversee the big picture more.

Thanks for listening.

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of rvankonynenSent: Tuesday, December 27, 2005 4:26 PMinfections Subject: [infections] Re: high pulse rateAnn, I guess that my question back to you would be where are you located, and how far are you willing to travel?I don't know of many doctors who are currently up to speed on the cardiomyopathy in CFS. The best bet might be to check with the makers of the equipment used and see if they will be willing to say who in your area has their equipment. Then you could contact them and see if they are familiar with diastolic cardiomyopathy and how to characterize it using impedance cardiography and the newer, more sophisticated echocardiography.I think it's important to note, though, that even if you get a diagnosis, the medical establishment currently does not know of a successful cure for diastolic cardiomyopathy. If it turns out to be the viral type, then I think Dr. Lerner has had some success with antiviral drugs.In my own opinion, the solution for the diastolic cardiomyopathy in CFS is going to be to raise the level of glutathione. Some PWCs have been able to raise their glutathione by various measures, which I have outlined in a write-up that can be found at http://www.phoenix-cfs.org/Glutathione%20Building%20in%20CFS.htmOther PWCs have not found this to work for them. I suspect that in those cases the methylation cycle is blocked, as it has been found to be in autism, and this is holding down the glutathione level. To find out about this, I suggest that you view the talks at http://www.danwebcast.comYou will need to register at the lower left, but this is free, and they will email you a password right away, so that you can watch the videos. They are from the spring 2005 Boston meeting of the Defeat Autism Now! organization, but I suspect that most of what is said there about the biochemistry and the treatments will be applicable to CFS as well as to autism. Rich> > >> > > Network Blitz> > >> > > Why is my pulse rate so high? My blood pressure is normal.> Resting> > in bed> > > last night my pulse was 77, which is very good for me. First> thing> > this> > > morning before getting out of bed it was 90, then I stood up and> > took my> > > pulse, it was 104. Yikes. Any thoughts?> > >> > > (I have CFS, IBS, food intolerances, sinus problems, sleep> apnea,> > adrenal> > > fatigue)> > >> > > Ann> > >> >> > > > > > > >

December 28, 2005

Hi, Ann.

No, I'm healthy (as far as I know!) My background in the physical

sciences and engineering. I'm retired after working thirty years

for the University of California. I started studying CFS about

eight years ago, because a friend of my wife and myself got it, and

the doctor couldn't help her. I thought it would be quicker to

figure out than it has been! I do think the progress has been

faster this past year, though, and I'm excited to see how the DAN!

treatments will work in PWCs. If you want to track that, too, I

suggest that you join the list. Several

people over there are trying these treatments. This group focuses

more on infections, and that doesn't seem to be a major part of your

picture, though I think pretty much all PWCs have immune dysfunction

and reactivation of viral infections, as well as some intracellular

bacterial infections. My own view is that these are not what starts

it off or keeps it going for most PWCs, though it certainly

contributes, and I'm interested in root causes. I don't post here

too much, because opinions like that tend to rile some people here!

(:-) But I can't deny that infections are an important factor in

many cases of CFS, and I'm interested in them, too, which is why I'm

also here. In some cases, they seem to be the main thing. This is

a very heterogeneous population, because of the rather loose

definition of CFS we are currently working with.

Yes, I'm familiar with muscle testing. I can't explain it from a

scientific point of view, but it does seem to work for many people,

so I keep an open mind about it. In some cases I've seen lab test

results that seem to be in agreement with muscle testing on the same

person. So I pay attention to muscle testing results, along with

whatever other info people have about their cases.

Rich

> > > >

> > > > Network Blitz

> > > >

> > > > Why is my pulse rate so high? My blood pressure is

normal.

> > Resting

> > > in bed

> > > > last night my pulse was 77, which is very good for me.

First

> > thing

> > > this

> > > > morning before getting out of bed it was 90, then I

stood up

> and

> > > took my

> > > > pulse, it was 104. Yikes. Any thoughts?

> > > >

> > > > (I have CFS, IBS, food intolerances, sinus problems,

sleep

> > apnea,

> > > adrenal

> > > > fatigue)

> > > >

> > > > Ann

> > > >

> > >

> >

December 28, 2005

Rich,

I agree with your point of view; I like what you are saying. CFS is a term that covers a lot of things--there may be different causes that we are calling CFS as if it were one thing.

I had mono (epstein barr) at age 20 and that triggered the CFS, which has changed over the years (symptoms added over the years, some worsening). I agree that what must be involved is some viral and/or bacterial problems. Whether that is the cause, I don't know. But viral and bacterial at least gets at a deeper level than just treating all of the symptoms.

Interesting that you mention DAN. my holistic doc uses DAN protocol to treat kids with autism. Why isn't she thinking of that for me? She says she doesn't think my CFS is viral because I don't have recurring sore throats and fevers. But I'm not convinced, she might be wrong there. She just calls it CFS, that adrenal fatigue is a big part of it; why I have the adrenal fatigue she doesn't know.

Rich, does this give you any insights?--I took my pulse and BP last night. I was sitting on my bed (ok I should have been lying down...).

sitting: BP 130/80 pulse 93

standing: BP 140/90 pulse 101

five minutes later, standing: BP 136/86 pulse 105

Does this seem sort of, very much, or not really like POTS? or those other ones...my BP went up, then started to go down. I should have taken it again a few minutes later to see if it continued to go down.

Thanks.

Ann

-----Original Message-----From: infections [mailto:infections ]On Behalf Of rvankonynenSent: Tuesday, December 27, 2005 8:12 PMinfections Subject: [infections] Re: high pulse rateHi, Ann.No, I'm healthy (as far as I know!) My background in the physical sciences and engineering. I'm retired after working thirty years for the University of California. I started studying CFS about eight years ago, because a friend of my wife and myself got it, and the doctor couldn't help her. I thought it would be quicker to figure out than it has been! I do think the progress has been faster this past year, though, and I'm excited to see how the DAN! treatments will work in PWCs. If you want to track that, too, I suggest that you join the list. Several people over there are trying these treatments. This group focuses more on infections, and that doesn't seem to be a major part of your picture, though I think pretty much all PWCs have immune dysfunction and reactivation of viral infections, as well as some intracellular bacterial infections. My own view is that these are not what starts it off or keeps it going for most PWCs, though it certainly contributes, and I'm interested in root causes. I don't post here too much, because opinions like that tend to rile some people here! (:-) But I can't deny that infections are an important factor in many cases of CFS, and I'm interested in them, too, which is why I'm also here. In some cases, they seem to be the main thing. This is a very heterogeneous population, because of the rather loose definition of CFS we are currently working with. Yes, I'm familiar with muscle testing. I can't explain it from a scientific point of view, but it does seem to work for many people, so I keep an open mind about it. In some cases I've seen lab test results that seem to be in agreement with muscle testing on the same person. So I pay attention to muscle testing results, along with whatever other info people have about their cases.Rich> > > >> > > > Network Blitz> > > >> > > > Why is my pulse rate so high? My blood pressure is normal.> > Resting> > > in bed> > > > last night my pulse was 77, which is very good for me. First> > thing> > > this> > > > morning before getting out of bed it was 90, then I stood up> and> > > took my> > > > pulse, it was 104. Yikes. Any thoughts?> > > >> > > > (I have CFS, IBS, food intolerances, sinus problems, sleep> > apnea,> > > adrenal> > > > fatigue)> > > >> > > > Ann> > > >> > >> >> >> >> >> >> >> >> >

December 29, 2005

Ann said:

" I was sitting on my bed (ok I should have been lying down...).

> sitting: BP 130/80 pulse 93

> standing: BP 140/90 pulse 101

> five minutes later, standing: BP 136/86 pulse 105 "

Ann,

I also had tachycardia with a BP similar to yours for several years. I

was diagnosed with RA 14 years ago and Lyme/Babesiosis this year (may

be chronic as I've had applicable symptoms for many years.

My particular tachycardia symptoms resolved after finally getting

thyroid levels (Free T3/4) into the mid-range for each. I was on

Cortef for hypoadrenalism during the the time Thyroid supplementation

was being titrated. My resting heart rate is now in low 60's and when

up and about, in the 70's-80's (appropriately).

As we know, chronic illness may cause hormone deficiencies, so I

thought this might be another avenue for you to explore.

Good luck,

Robyn

December 29, 2005

Hi, Ann.

***See my comments at the asterisks below:

>

> Rich,

> I agree with your point of view; I like what you are saying. CFS

is a term

> that covers a lot of things--there may be different causes that we

are

> calling CFS as if it were one thing.

>

> I had mono (epstein barr) at age 20 and that triggered the CFS,

which has

> changed over the years (symptoms added over the years, some

worsening). I

> agree that what must be involved is some viral and/or bacterial

problems.

> Whether that is the cause, I don't know. But viral and bacterial

at least

> gets at a deeper level than just treating all of the symptoms.

>

> Interesting that you mention DAN. my holistic doc uses DAN

protocol to treat

> kids with autism. Why isn't she thinking of that for me?

***The similarities between autism and CFS are not obvious until you

look beyond the characteristic autistic symptoms that result from

early interruption of brain development (which does not occur in CFS

because of the later onset). I think that Dr. Garry Gordon (in the

U.S.) and Dr. Malcolm Hooper (in the U.K.) recognized this

similarity before I did, but it began to dawn on me when I read S.

Jill 's paper a few months back. Then, when I went to the Long

Beach DAN! conference two months ago, I became even more convinced.

As far as I know, the DAN! treatments have not been specifically

used on PWCs before now. I have been suggesting this to PWCs on the

internet for the past two months. It's not surprising that your

doctor has not heard about it yet. We don't have enough results yet

to be sure, but I am optimistic that this will prove out.

She says she

> doesn't think my CFS is viral because I don't have recurring sore

throats

> and fevers. But I'm not convinced, she might be wrong there. She

just calls

> it CFS, that adrenal fatigue is a big part of it; why I have the

adrenal

> fatigue she doesn't know.

***The symptoms of viral infection often decrease after a person has

had CFS for a while. Dr. Cheney calls this " stage 2. " Adrenal

issues are common in CFS. It appears to result from a problem in

the hypothalamus or a brain center that drives the hypothalamus,

such as the hippocampus. This causes a " blunting " of the HPA

(hypothalamus-pituitary-adrenal) axis. The result is that the

cortisol output is decreased, and there seems to be more demand on

the sympathetic-adrenal medulla-adrenaline system to compensate.

>

> Rich, does this give you any insights?--I took my pulse and BP

last night. I

> was sitting on my bed (ok I should have been lying down...).

> sitting: BP 130/80 pulse 93

> standing: BP 140/90 pulse 101

> five minutes later, standing: BP 136/86 pulse 105

>

> Does this seem sort of, very much, or not really like POTS? or

those other

> ones...my BP went up, then started to go down. I should have taken

it again

> a few minutes later to see if it continued to go down.

***A normal healthy person's response to going from supine to

standing position is an increase of 10 to 20 beats per minute in

heart rate. There is no significant fall in systolic blood

pressure, and diastolic and mean arterial pressure may rise somewhat.

***A person with POTS has symptoms of orthostatic intolerance (such

as lightheadedness, tremulousness, nausea, abdominal pain, sweating,

pallor, weakness, or others) and an increase in heart rate when

going from supine to upright of more than 30 beats per minute to a

heart rate greater than 120 beats per minute within 10 minutes of

head-up tilt. Blood pressure may decrease or increase. Sometimes

it takes a few minutes for the blood pressure to drop, if it's going

to.

***Maybe you could try your test again from the supine position and

see if you meet the criteria for POTS. These criteria are somewhat

arbitrary, so even if you don't meet them exactly, you may still

have a milder case of POTS.

>

> Thanks.

>

> Ann

***You're welcome.

Rich

December 31, 2005

Rich, thanks for your input , I hope I'm not riling you ,but it's clear that

the rise in the incidence of autism & CFS are linked , they are in fact one

in the same condition ..or at least the same mechanism is at work ...Its the

reason that DAN treatments are at least partially effective with CFS ..

Autism is increasing exponentially, 1 in 150 are now affected ,There aren’t

1-150 adults suffering with autistic symptoms amongst us now so The cause

must be environmental G depletion is very much a symptom of an underlying

condition ....I'm putting together a article on Autism that I hope makes

sense of the condition , its turning into a bit of a saga .. I would

appreciate your thoughts when it's finished ..

[infections] Re: high pulse rate