Rich/anyone : orthostatic intolerance in CFS/ME

January 19, 2006

Hi rich / all

What are you opinions on what causes orthostatic intolerance and what do

you suggest can be done to reverse this ?

Is it indicative of poor heart function - I know Dr Cheney did some work on

it ?

Regards

CS

January 19, 2006

There are four long papers on orthostatic intolerance and CFS at

http://www.phoenix-cfs.org/The%20SITE/CFSResearchIntro.htm

bhammanuk@... wrote:

Hi rich / all

What are you opinions on what causes orthostatic intolerance and what do

you suggest can be done to reverse this ?

Is it indicative of poor heart function - I know Dr Cheney did some work on

it ?

Regards

CS

January 19, 2006

Thanks Cort

Regards

CS

January 19, 2006

Thanks Rich.

In my case I actually feel that I have raised Glutathione to a point where I

get no reaction at all from Whey protein Isolate and can drink it all day.

Ive now been on the stuff for 9 months together with other stuff ( listed

below )!

As I have had chronic fatigue for 16 years or so. Im still finding I get

POTS - so in my case raising Glutathione hasnt reversed the situation. This is

the point where I start to agree with Dr. Myhill's views as I am having

success with Co Q10 - your thoughts would be greatly appreciated ?

Regards

CS

MY REGIME:

1) TOXINS - Raise Glutathione via Whey protein Isolate

2) INFECTIONS - lactoferrin & Coconut oil / lauricidin

3) ADRENALS - Sea Salt or Recup & Licorice

5) DIGESTION - Probiotics / Protein Digestive enzyme

6) NUTRIENTS - Vit B complex & Vit C

7) HEART HEALTH - CO Q10

8) HIGH PROTEIN DIET with lots of veg/ salad/ butter/ yoghurt!!

And looking into : Chorella / Green Barley Grass / OXYMOXY !!

January 19, 2006

Hi, CS.

Yes, my current best guess is that low cardiac output is responsible

for both POTS (postural orthostatic tachycardia syndrome) and OH

(orthostatic hypotension). I also think that in most cases of CFS

the low cardiac output is due to diastolic cardiomyopathy, as Dr.

Cheney reported in his talk last June to be the case in over 80% of

his CFS patients.

I think the diastolic cardiomyopathy is due to a rise in superoxide

and perhaps peroxynitrite in the mitochondria of the heart muscle

cells. This leads to partial blockades in the Krebs cycle and

probably also the respiratory chain, and thus lowers the rate of

production of ATP. A low rate of ATP production prevents the heart

muscle fibers from relaxing as fast as they should during the

diastolic phase of the heart. As a result, the left ventricle does

not fill with blood as much as it should, and thus the amount of

blood pumped by the heart in liters per minute is below normal.

What can be done about it? I think the most fundamental thing is

first to correct blocks in the sulfur metabolism, by using the DAN!

treatments for autism. These include getting the mercury out of the

body, because mercury can block the sulfur metabolism.

Once the blocks are removed, then building glutathione is the next

step. That should lower the peroxynitrite concentration in the

heart muscle cells and raise the ATP production rate, lifting the

diastolic cardiomyopathy and raising the cardiac output. Once the

heart output is normal, I think the POTS and/or OH will go away.

Dr. Myhill in Wales is trying to build the cardiac output by

giving supplements known to help the heart muscle: coenzyme Q-10, L-

carnitine, magnesium, D-ribose and B vitamins, among other things.

I think that these are good things to do, but I don't think they get

at the root of the problem. I am in communication with her fairly

regularly, and I'm hopeful that we will come together on this point.

There is also a low total blood volume issue in some PWCs. I think

this makes the problems of POTS and OH worse. I think the low blood

volume is often caused by a (usually) mild case of diabetes

insipidus (not the same as diabetes mellitus), which causes

excessive urination and a constant state of dehydration. I think

this is caused by a problem in the hypothalamus that leads to low

output of antidiuretic hormone (also known as arginine

vasopressin). I think this problem will also eventually be traced

to glutathione depletion, so getting the glutathione up should take

care of it, also.

Rich

>

> Hi rich / all

>

> What are you opinions on what causes orthostatic intolerance and

what do

> you suggest can be done to reverse this ?

>

> Is it indicative of poor heart function - I know Dr Cheney did

some work on

> it ?

>

> Regards

> CS

>

January 19, 2006

Hi, CS.

Sounds as though your glutathione status is fine. Glad to hear that

the Co Q-10 is helping. In view of that, you might consider adding

L-carnitine, magnesium and D-ribose. It could very well be that one

of the other things your heart needs is missing from your diet and

supplements. I don't mean that glutathione is the only thing the

heart muscle needs. I just think it is a major problem in many

PWCs. I think it's possible that your glutathione was low

initially, and that you have corrected it by taking the whey protein

for nine months. I think you have said that your health has

improved some over this period, so maybe that was one of the reasons

for the improvement.

I still think that taking a high-potency general nutritional

supplement would be a good idea. The body has need for over 40

essential nutrients--vitamins, minerals, essential fatty acids

(omega-3 and -6), and essential amino acids. Some carbohydrates and

fiber are also helpful. You are probably getting a lot of these

from your diet and current supplements, but one or more of the

essential nutrients may still be missing. Rather than try all 40 or

so one at a time, why not go for a general supplement that has the

vitamins and minerals at doses that are attempts at achieving

optimum nutrition, as opposed to RDA levels, which are the minimum

to avoid deficiency diseases? Add a little flax or fish oil for the

omega-3 (you're probably getting enough omega-6 from your diet). I

think you have the amino acids covered with your high protein diet

(is it animal or vegetable protein?) and the whey.

Rich

>

> Thanks Rich.

>

> In my case I actually feel that I have raised Glutathione to a

point where I

> get no reaction at all from Whey protein Isolate and can drink it

all day.

> Ive now been on the stuff for 9 months together with other stuff

( listed

> below )!

>

> As I have had chronic fatigue for 16 years or so. Im still

finding I get

> POTS - so in my case raising Glutathione hasnt reversed the

situation. This is

> the point where I start to agree with Dr. Myhill's views as I am

having

> success with Co Q10 - your thoughts would be greatly appreciated ?

>

> Regards

> CS

>

> MY REGIME:

>

> 1) TOXINS - Raise Glutathione via Whey protein Isolate

> 2) INFECTIONS - lactoferrin & Coconut oil / lauricidin

> 3) ADRENALS - Sea Salt or Recup & Licorice

> 5) DIGESTION - Probiotics / Protein Digestive enzyme

> 6) NUTRIENTS - Vit B complex & Vit C

> 7) HEART HEALTH - CO Q10

> 8) HIGH PROTEIN DIET with lots of veg/ salad/ butter/ yoghurt!!

>

> And looking into : Chorella / Green Barley Grass / OXYMOXY !!

>

January 20, 2006

I'm still waiting for all the smart chemists to figure out why

Recuperation works. All I can say is that I cooked dinner on

Thanksgiving and Christmas, stood several hours and still had a great

time with company. I am completely unable to stand this long without

Recup. Several years ago I passed out with no measurable blood

pressure on a tilt test. I could not stand in a grocery line, nor

could I stand and teach school as I was unable to think and became

spacey. Recup is doing something to my orthostatic hypotension - maybe

fixing the muscle cells so that ATP production is normal???

a Carnes

>

> Hi rich / all

>

> What are you opinions on what causes orthostatic intolerance and

what do

> you suggest can be done to reverse this ?

>

> Is it indicative of poor heart function - I know Dr Cheney did some

work on

> it ?

>

> Regards

> CS

>

January 20, 2006

On Jan 19, 2006, at 12:43 PM, bhammanuk@... wrote:

> Thanks Rich.

>

> In my case I actually feel that I have raised Glutathione to a

> point where I

> get no reaction at all from Whey protein Isolate and can drink it

> all day.

> Ive now been on the stuff for 9 months together with other stuff

> ( listed

> below )!

>

> As I have had chronic fatigue for 16 years or so. Im still finding

> I get

> POTS - so in my case raising Glutathione hasnt reversed the

> situation. This is

> the point where I start to agree with Dr. Myhill's views as I am

> having

> success with Co Q10 - your thoughts would be greatly appreciated ?

This conversation brings up a few issues I'm having.

First: My own experience doesn't do much to support Rich's thesis

here, I'm afraid. I've been on big IM doses of glutathione and AMP

since August. They've done wonders for many aspects of my ME -- my

brain works as well as it ever did, my joints don't hurt, I sleep

well, and my immune response seems to be quite a bit better.

However, five months of this glutathione-rich regime have done not

much more than zip for my post-exertional malaise. On an average day,

putting along in second or third gear, I can reliably go a quite a

bit farther than I used to before the crash comes. But my ability to

kick it up to fourth or fifth gear -- that is, do actual exercise --

is no better than it was a year ago. An hour of yoga will wipe me out

for 36 hours. An hour of hiking will send me to bed for two days.

Even too many trips up and down the stairs (we have a three-story

house) in a single day will take their toll. Basically, if I get my

heart rate up over about 120 for more than about 30 seconds, that

will IT for me for a long, long time. More frighteningly (for reasons

that will come clear below), this is NOT getting better with age.

My suspicion is that this ongoing situation is quite possibly linked

to OI/POTS. Which brings me to the second issue:

I have never, ever been able to convince a doctor to test me for

POTS. Both my California doctor and my Canadian one just look at me

like I'm from the moon when I mention it. Even my FFC doctor is

totally unfamiliar with this particular theory (and did not seem

interested in being educated in it when I mentioned it).

Which really frustrates me, because if you go up my mother's family

line, half of everyone back to the Civil War died before 60 of

congestive heart failure. My mother is one of four sisters. Their

mother, my grandmother, died at 61. The youngest sister had

congestive heart failure at 50, and spent 7 months in the hospital

recovering. The oldest one had it at 57, and is now in her 12th year

with somebody else's heart. Two of their eight children (my

generation) had heart defects from childhood; one died of congestive

heart failure at the age of seven.

So here I am, with this raging family history of heart trouble, and a

28-year history with a disease that leads to (and may be caused by)

congestive heart failure. Nonetheless, I can't get anyone to strap me

to a tilt table to save my life (possibly literally). They will put

me on a treadmill, where I'll perform like a champ. My valves are

perfect; my recovery rate amazingly good for someone who does NO

aerobic exercise at all. So, in their eyes, I'm fine. What they don't

see is the fact that, after they unhook me and send me home, I go

straight to bed and spend the next few days there.

I CANNOT get anyone to take this seriously. Anybody got any social

engineering suggestions for getting some attention about this?

Sara

January 21, 2006

Sara,

I must have just got lucky because a cardiologist was plain old

curious enough to do a tilt test on me. Then when my insurance would

not cover it he just did not charge me. I know he found my case

curious.

You can do a tilt test, sort of, by standing still against a wall for

about 20-30 minutes. If you start to feel nauseated, headachy,

spacey, or get black dots in front of your eyes you can be pretty

sure you have some form of POTS.

a

>

> On Jan 19, 2006, at 12:43 PM, bhammanuk@a... wrote:

>

> > Thanks Rich.

> >

> > In my case I actually feel that I have raised Glutathione to a

> > point where I

> > get no reaction at all from Whey protein Isolate and can drink

it

> > all day.

> > Ive now been on the stuff for 9 months together with other

stuff

> > ( listed

> > below )!

> >

> > As I have had chronic fatigue for 16 years or so. Im still

finding

> > I get

> > POTS - so in my case raising Glutathione hasnt reversed the

> > situation. This is

> > the point where I start to agree with Dr. Myhill's views as I

am

> > having

> > success with Co Q10 - your thoughts would be greatly

appreciated ?

>

> This conversation brings up a few issues I'm having.

>

> First: My own experience doesn't do much to support Rich's thesis

> here, I'm afraid. I've been on big IM doses of glutathione and AMP

> since August. They've done wonders for many aspects of my ME -- my

> brain works as well as it ever did, my joints don't hurt, I sleep

> well, and my immune response seems to be quite a bit better.

>

> However, five months of this glutathione-rich regime have done not

> much more than zip for my post-exertional malaise. On an average

day,

> putting along in second or third gear, I can reliably go a quite a

> bit farther than I used to before the crash comes. But my ability

to

> kick it up to fourth or fifth gear -- that is, do actual exercise --

> is no better than it was a year ago. An hour of yoga will wipe me

out

> for 36 hours. An hour of hiking will send me to bed for two days.

> Even too many trips up and down the stairs (we have a three-story

> house) in a single day will take their toll. Basically, if I get

my

> heart rate up over about 120 for more than about 30 seconds, that

> will IT for me for a long, long time. More frighteningly (for

reasons

> that will come clear below), this is NOT getting better with age.

>

> My suspicion is that this ongoing situation is quite possibly

linked

> to OI/POTS. Which brings me to the second issue:

>

> I have never, ever been able to convince a doctor to test me for

> POTS. Both my California doctor and my Canadian one just look at

me

> like I'm from the moon when I mention it. Even my FFC doctor is

> totally unfamiliar with this particular theory (and did not seem

> interested in being educated in it when I mentioned it).

>

> Which really frustrates me, because if you go up my mother's

family

> line, half of everyone back to the Civil War died before 60 of

> congestive heart failure. My mother is one of four sisters. Their

> mother, my grandmother, died at 61. The youngest sister had

> congestive heart failure at 50, and spent 7 months in the hospital

> recovering. The oldest one had it at 57, and is now in her 12th

year

> with somebody else's heart. Two of their eight children (my

> generation) had heart defects from childhood; one died of

congestive

> heart failure at the age of seven.

>

> So here I am, with this raging family history of heart trouble, and

a

> 28-year history with a disease that leads to (and may be caused

by)

> congestive heart failure. Nonetheless, I can't get anyone to strap

me

> to a tilt table to save my life (possibly literally). They will

put

> me on a treadmill, where I'll perform like a champ. My valves are

> perfect; my recovery rate amazingly good for someone who does NO

> aerobic exercise at all. So, in their eyes, I'm fine. What they

don't

> see is the fact that, after they unhook me and send me home, I go

> straight to bed and spend the next few days there.

>

> I CANNOT get anyone to take this seriously. Anybody got any social

> engineering suggestions for getting some attention about this?

>

> Sara

>

January 21, 2006

On Jan 20, 2006, at 7:11 PM, pjeanneus wrote:

> Sara,

> I must have just got lucky because a cardiologist was plain old

> curious enough to do a tilt test on me. Then when my insurance would

> not cover it he just did not charge me. I know he found my case

> curious.

>

> You can do a tilt test, sort of, by standing still against a wall for

> about 20-30 minutes. If you start to feel nauseated, headachy,

> spacey, or get black dots in front of your eyes you can be pretty

> sure you have some form of POTS.

I'm assuming that I'd have to get off my meds for a couple days to

get an accurate picture. The thyroid, in particular, raises my BP

10-15 points, which helps quite a bit. We'd want to know what my

baseline unmedicated state is, right?

I have never been good at standing for more than a few minutes; and

sitting with my feet on the floor is also uncomfortable. As long as I

can keep moving, slowly, or put my feet up, I remain pretty alert.

But holding still in a vertical position has always made me, yeah,

spacey.

Sara

January 21, 2006

Hi, a.

I don't know about smart chemists, but all I have to offer on this is

what I said before on this list and on the Blasi protocol list. That

was that I could think of two main possibilities. First, that the

sodium in Recuperat-ion could be helping to raise blood volume, and

that seems to help many PWCs. I've heard from several who said that

getting a bag of saline made them feel better for a while. Putting in

sodium does essentially the same thing, because it caused more water

retention, and that's like adding saline. So that's one possibility.

I'll elaborate a little on the other possibility I suggested earlier:

The other possibility I can think of is that the cells in CFS have

partial blockades in their oxidative metabolism, I think because of

glutathione depletion, which allows superoxide and maybe peroxynitrite

to rise, and they block aconitase and probably cytochrome oxidase as

well. The result is a decrease in the rate of production of ATP by

the cells. Some of the major customers for the ATP in cells are the

membrane ion pumps. I think that these have an energy crisis because

of the shortage of ATP. Consequently, they are not able to keep the

concentrations of the ions inside the cell at optimum levels. I

suspect that the magnesium is the one that suffers the most. For one

thing, I think the kidneys are dumping more magnesium than normal into

the urine. The energy required to move ions depends on the

concentration difference between the inside and the outside of the

cell. I suggest that the use of Recuperat-ion, especially when it is

sipped all day, as some people report doing, raises the concentration

of ions in the blood serum, and this makes it easier for the ion pumps

to pump in those ions that are normally at higher concentration inside

the cell than outside. They thus require less energy to do that. The

result is that more of the energy from the ATP they use goes into

heat. As a result, less ATP has to be used to maintain core body

temperature, and this frees up more of the scarce supply to do other

things, and the result is that the cells can carry on their business

better, even though they still can't make ATP as fast as they should,

and the people feel better. In itself, it probably won't cure very

many people, because it doesn't get at the root cause of the energy

shortage, but it does help to decrease the energy demand.

Rich

>

> I'm still waiting for all the smart chemists to figure out why

> Recuperation works. All I can say is that I cooked dinner on

> Thanksgiving and Christmas, stood several hours and still had a

great

> time with company. I am completely unable to stand this long without

> Recup. Several years ago I passed out with no measurable blood

> pressure on a tilt test. I could not stand in a grocery line, nor

> could I stand and teach school as I was unable to think and became

> spacey. Recup is doing something to my orthostatic hypotension -

maybe

> fixing the muscle cells so that ATP production is normal???

>

> a Carnes

January 21, 2006

Hi, Sara.

I wonder if there's any chance that you could get impedance

cardiography done. Given your symptoms and your family history, I

think it would be a good idea to find out what your cardiac output

is. If it turned out to be low, then maybe you could get the

sophisticated General Electric Vivid 7 echocardiography done, to see

if it was diastolic or more conventional systolic cardiomyopathy.

It sounds as though you did have low glutathione initially, since

you experienced benefit from the IM injections.

I think it might still be possible that the glutathione level in

your skeletal muscles is not up to normal.

You probably said this before, but get people's cases mixed up--are

you able to tolerate whey protein, and if so, have you taken it to

build glutathione? The advantage of this, over the injections, is

that it will help the liver to get back into normal glutathione

production. The liver is normally the major producer of glutathione

in the body, but it doesn't absorb glutathione well from the blood.

Rich

> This conversation brings up a few issues I'm having.

>

> First: My own experience doesn't do much to support Rich's thesis

> here, I'm afraid. I've been on big IM doses of glutathione and

AMP

> since August. They've done wonders for many aspects of my ME --

my

> brain works as well as it ever did, my joints don't hurt, I sleep

> well, and my immune response seems to be quite a bit better.

>

> However, five months of this glutathione-rich regime have done

not

> much more than zip for my post-exertional malaise. On an average

day,

> putting along in second or third gear, I can reliably go a quite

a

> bit farther than I used to before the crash comes. But my ability

to

> kick it up to fourth or fifth gear -- that is, do actual exercise -

-

> is no better than it was a year ago. An hour of yoga will wipe me

out

> for 36 hours. An hour of hiking will send me to bed for two days.

> Even too many trips up and down the stairs (we have a three-story

> house) in a single day will take their toll. Basically, if I get

my

> heart rate up over about 120 for more than about 30 seconds, that

> will IT for me for a long, long time. More frighteningly (for

reasons

> that will come clear below), this is NOT getting better with age.

>

> My suspicion is that this ongoing situation is quite possibly

linked

> to OI/POTS. Which brings me to the second issue:

>

> I have never, ever been able to convince a doctor to test me for

> POTS. Both my California doctor and my Canadian one just look at

me

> like I'm from the moon when I mention it. Even my FFC doctor is

> totally unfamiliar with this particular theory (and did not seem

> interested in being educated in it when I mentioned it).

>

> Which really frustrates me, because if you go up my mother's

family

> line, half of everyone back to the Civil War died before 60 of

> congestive heart failure. My mother is one of four sisters. Their

> mother, my grandmother, died at 61. The youngest sister had

> congestive heart failure at 50, and spent 7 months in the

hospital

> recovering. The oldest one had it at 57, and is now in her 12th

year

> with somebody else's heart. Two of their eight children (my

> generation) had heart defects from childhood; one died of

congestive

> heart failure at the age of seven.

>

> So here I am, with this raging family history of heart trouble,

and a

> 28-year history with a disease that leads to (and may be caused

by)

> congestive heart failure. Nonetheless, I can't get anyone to strap

me

> to a tilt table to save my life (possibly literally). They will

put

> me on a treadmill, where I'll perform like a champ. My valves are

> perfect; my recovery rate amazingly good for someone who does NO

> aerobic exercise at all. So, in their eyes, I'm fine. What they

don't

> see is the fact that, after they unhook me and send me home, I

go

> straight to bed and spend the next few days there.

>

> I CANNOT get anyone to take this seriously. Anybody got any

social

> engineering suggestions for getting some attention about this?

>

> Sara

>

January 21, 2006

Thanks Rich. I am beginning to grasp this a bit more as I spent some

time today reading about ion channels. I ran out of Recup and

magnesium taurinate at about the same time and went a week without

both. Now I am back on Recup for maybe 6 or 7 days. So far I am again

having trouble walking and feel short of air. I guess I will go one

more week and then get some more mag taurinate. I will keep posting

here to let folks consider my progress or lack thereof as they decide

what to to.

a Carnes

>

> Hi, a.

>

> I don't know about smart chemists, but all I have to offer on this

is

> what I said before on this list and on the Blasi protocol list.

That

> was that I could think of two main possibilities. First, that the

> sodium in Recuperat-ion could be helping to raise blood volume, and

> that seems to help many PWCs. I've heard from several who said

that

> getting a bag of saline made them feel better for a while. Putting

in

> sodium does essentially the same thing, because it caused more

water

> retention, and that's like adding saline. So that's one

possibility.

>

> I'll elaborate a little on the other possibility I suggested

earlier:

>

> The other possibility I can think of is that the cells in CFS have

> partial blockades in their oxidative metabolism, I think because of

> glutathione depletion, which allows superoxide and maybe

peroxynitrite

> to rise, and they block aconitase and probably cytochrome oxidase

as

> well. The result is a decrease in the rate of production of ATP by

> the cells. Some of the major customers for the ATP in cells are

the

> membrane ion pumps. I think that these have an energy crisis

because

> of the shortage of ATP. Consequently, they are not able to keep

the

> concentrations of the ions inside the cell at optimum levels. I

> suspect that the magnesium is the one that suffers the most. For

one

> thing, I think the kidneys are dumping more magnesium than normal

into

> the urine. The energy required to move ions depends on the

> concentration difference between the inside and the outside of the

> cell. I suggest that the use of Recuperat-ion, especially when it

is

> sipped all day, as some people report doing, raises the

concentration

> of ions in the blood serum, and this makes it easier for the ion

pumps

> to pump in those ions that are normally at higher concentration

inside

> the cell than outside. They thus require less energy to do that.

The

> result is that more of the energy from the ATP they use goes into

> heat. As a result, less ATP has to be used to maintain core body

> temperature, and this frees up more of the scarce supply to do

other

> things, and the result is that the cells can carry on their

business

> better, even though they still can't make ATP as fast as they

should,

> and the people feel better. In itself, it probably won't cure very

> many people, because it doesn't get at the root cause of the energy

> shortage, but it does help to decrease the energy demand.

>

> Rich

>

> >

> > I'm still waiting for all the smart chemists to figure out why

> > Recuperation works. All I can say is that I cooked dinner on

> > Thanksgiving and Christmas, stood several hours and still had a

> great

> > time with company. I am completely unable to stand this long

without

> > Recup. Several years ago I passed out with no measurable blood

> > pressure on a tilt test. I could not stand in a grocery line, nor

> > could I stand and teach school as I was unable to think and

became

> > spacey. Recup is doing something to my orthostatic hypotension -

> maybe

> > fixing the muscle cells so that ATP production is normal???

> >

> > a Carnes

>

January 21, 2006

I don't know if you would need to stop thyroid meds. One thing that

is true about POTS or NMH is that your blood pressure can actually be

high, but when you stand still it will drop to nothing - literally

nothing. I had normal bp but passed out with no measurable blood

pressure. The cardiologist was quite concerned that if I ever did

this while sitting alone I could die. He warned me to tell my family

that I must be laid down if this should happen.

However, I am like you, and generally tend to just move a bit like an

elephant. When I was still teaching school and was standing I could

not remember what I was saying.

In case I didn't mention, after I had been on Recup for a month I was

able to stand and function - cooking a big dinner for company etc.

If you try standing against a wall for awhile be sure you are not

alone, and just assume you have POTS at the first symptoms. The

passing out experience was hellish. I would never want to have this

test again, although it did help me get disability.

a

>

> On Jan 20, 2006, at 7:11 PM, pjeanneus wrote:

>

> > Sara,

> > I must have just got lucky because a cardiologist was plain old

> > curious enough to do a tilt test on me. Then when my insurance

would

> > not cover it he just did not charge me. I know he found my case

> > curious.

> >

> > You can do a tilt test, sort of, by standing still against a wall

for

> > about 20-30 minutes. If you start to feel nauseated, headachy,

> > spacey, or get black dots in front of your eyes you can be pretty

> > sure you have some form of POTS.

>

> I'm assuming that I'd have to get off my meds for a couple days to

> get an accurate picture. The thyroid, in particular, raises my BP

> 10-15 points, which helps quite a bit. We'd want to know what my

> baseline unmedicated state is, right?

>

> I have never been good at standing for more than a few minutes;

and

> sitting with my feet on the floor is also uncomfortable. As long as

I

> can keep moving, slowly, or put my feet up, I remain pretty alert.

> But holding still in a vertical position has always made me, yeah,

> spacey.

>

> Sara

>

January 21, 2006

On Jan 20, 2006, at 10:51 PM, pjeanneus wrote:

> I don't know if you would need to stop thyroid meds. One thing that

> is true about POTS or NMH is that your blood pressure can actually be

> high, but when you stand still it will drop to nothing - literally

> nothing. I had normal bp but passed out with no measurable blood

> pressure. The cardiologist was quite concerned that if I ever did

> this while sitting alone I could die. He warned me to tell my family

> that I must be laid down if this should happen.

>

> However, I am like you, and generally tend to just move a bit like an

> elephant. When I was still teaching school and was standing I could

> not remember what I was saying.

>

> In case I didn't mention, after I had been on Recup for a month I was

> able to stand and function - cooking a big dinner for company etc.

>

> If you try standing against a wall for awhile be sure you are not

> alone, and just assume you have POTS at the first symptoms. The

> passing out experience was hellish. I would never want to have this

> test again, although it did help me get disability.

Hmm. In my sickest years, I used to have episodes where I'd done too

much, and would have to go lie down RIGHT NOW before I passed out. I

finally decided these were a low-grade asthma reaction to eating

wheat and soy; and they did get a bit better when I cut out those

foods and started carrying a puffer.

I typically have had very low BP my whole life. It was routinely

90/60 until I got on the thyroid (and entered perimenopause, yecch)

which together have it up to a more normal range. I don't have those

gotta-lie-down-before-I-fall-down episodes any more, but being

upright is just damned uncomfortable -- and it's starting get worse

again, even as the rest of my ME generally tends to improve.

That business of not being able to stand up and think about what

you're saying at the same time really rings true. I don't even have

to lean up against a wall for 20 minutes to know that I wouldn't make

it through.

Maybe I'll wait to shake my doctor's tree on this until after I've

done some time on the Recup. After all these years, I no longer try

to get doctors interested in an ME symptom if there's any way in

hell I can possibly resolve it myself. They'll just send me from here

to there for a few months, condescend to me when I try to explain my

condition to them, order up a bunch of tests that more often than not

tell me nothing, hand me a bunch of drugs that will invariably make

me worse than I was to start, and usually leave me better informed

but not a whole lot better off than I was when we started. (Cynical?

Me? After almost thirty years of this nonsense? Naw.....)

And these days, the effort is further complicated by trying to work a

whole different medical delivery system that I'm not really familiar

with yet.

So, yeah, Recup. Glad it helped. Hope it works for me, too. If it

doesn't, I'll go hurl myself into the belly of the beast again, and

hope for the best.

Thanks for your suggestions, a.

Sara

January 21, 2006

I don't even have

> to lean up against a wall for 20 minutes to know that I wouldn't make

> it through.

>

Me,too. Can't even imagine myself trying that.

nil

January 21, 2006

Another simple test is how sick you get standing in line at the

grocery store holding on to that cart for dear life. If you get these

symptoms in everyday life and if you don't need to fight for

disability i don't think I would bother to get the tilt test. It

really is the test from hell. Eating 3 teaspoons of salt a day helped

me quite a bit. Now the Recup seems to be doing the same thing or

maybe something better. I am taking 2 packets a day and may add a

third.

a

>

> I don't even have

> > to lean up against a wall for 20 minutes to know that I wouldn't

make

> > it through.

> >

>

> Me,too. Can't even imagine myself trying that.

> nil

>

January 21, 2006

i am soo sorry to be asking this because I am very new to this board.. Please

tell me what " Recup " is..sounds like some of you are having great success with

this.

Lynn

Re: Rich/anyone : orthostatic intolerance in

CFS/ME

Another simple test is how sick you get standing in line at the

grocery store holding on to that cart for dear life. If you get these

symptoms in everyday life and if you don't need to fight for

disability i don't think I would bother to get the tilt test. It

really is the test from hell. Eating 3 teaspoons of salt a day helped

me quite a bit. Now the Recup seems to be doing the same thing or

maybe something better. I am taking 2 packets a day and may add a

third.

a

>

> I don't even have

> > to lean up against a wall for 20 minutes to know that I wouldn't

make

> > it through.

> >

>

> Me,too. Can't even imagine myself trying that.

> nil

>

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.

January 21, 2006