Re: orthostatic intolerance

[Guest guest]

In a message dated 6/23/99 8:49:20 AM, cheryl@... writes:

<< I just realized that one of the tests they are supposed to do when someone

has POTS is for syphilis, a similar spirochetal disease. Interesting >>

Cheryl, What is POTS? -Val

[Guest guest]

<<She would not be able to sit in a sauna because her blood vessels would

dilate, and she would get even less blood to her brain than she's getting

now. She can't even tolerate a hot day. So does this mean that she couldn't

possibly have Lyme? >>

Hi! I have known orthostatic hypotension and lyme. This really sucks. I am

confident the orthostatic hypotension is a result of the lyme. It makes sense

considering that orthostatic hypo is known to be caused by other infections, and

lyme is known to be a neurologic and cardiac disease.

You are right, someone with this condition would not tolerate heat therapy. Not

unless we want to become unconscious, and then if continue to do the treatment

while unconscious risk dying. If taking hot showers or going out in the heat

causes passing out, I think that's a clue not to do heat therapy. Always keep

in mind that Lyme affects everyone differently.

Hope your daughter feels better soon. Have you found her a LLMD?

I just realized that one of the tests they are supposed to do when someone has

POTS is for syphilis, a similar spirochetal disease. Interesting!

{{HUGS}}

Cheryl

PS. Does your daughter's heartrate drop extremely low when she passes out, or

not? MIne does not, meaning it is not neurally mediated hypo. Was she given

any meds for this? A good page you might be interested in if you haven't

already seen:

http://members.wbs.net/homepages/c/f/i/cfids/NMH.html

[Guest guest]

Bonnie,

Can't be much help but Gookinaid, a powder mix, increases blood volume. Dr.

Cheney recommends dringking 1 quart/day. Since I began drinking it a year

ago my condition has improved (although this is only one of many, many

things I take). You can buy it at 858-689-1859. Don't ask me how it works

or why you or your doctors have never heard of it before. Steve Bullock

Re: Orthostatic Intolerance

> Hi All,

> Recently there was an article about Dr. Bell's latest work on

>

http://chronicfatigue.about.com/health/chronicfatigue/library/weekly/aa07260

0a.htm

> (sorry, I don't have HTML capability) relating to his latest work on low

> blood volume. He suggested using a blood pressure cuff to take frequent

> blood pressure and pulse readings while lying down for 10 minutes and

> then standing for 30 minutes. He lists five different types of blood

> pressure irregularities which PWCs might have. I did the test at home

> and came up with postural orthostatic tachycardia. How great it is to

> finally know once and for all why I cannot sit or stand for more than a

> few minutes at a time

>

> I wrote down all of the readings of both bp and pulse and took them to

> my doctor along with a forum post written by the mother of one of Dr.

> Bell's patients (www.cfidsfoundation.org/forum/voumefall.htm). She says

> that the people on his latest study who have tested for low blood volume

> are getting 1 liter of saline solution weekly by IV. They are all doing

> better and the improvements are cumulative.

>

> My doctor started me on the IVs and it did start to help right away. My

> heart has always felt weak and it began to feel stronger right away. I

> don't tire as quickly now either. This is the only thing in 50 years

> that has ever helped my fatigue symptoms (I can't take supplements). It

> has enabled me to do research on CFS and participate in forums and lists

> which has really been helpful.

>

> Does anyone know why drinking water or even an electrolyte solution

> doesn't help, but this does? Does low blood volume mean that you don't

> have enough blood in your body or that your blood vessels can't

> contract when you stand? If you don't have enough blood in your body,

> wouldn't periodic blood transfusions help? It's very confusing and I'd

> appreciate any help or contributions relating to this.

>

> Bonnie Beale

>

>

>

> 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 All,

Recently there was an article about Dr. Bell's latest work on

http://chronicfatigue.about.com/health/chronicfatigue/library/weekly/aa072600a.h\

tm

(sorry, I don't have HTML capability) relating to his latest work on low

blood volume. He suggested using a blood pressure cuff to take frequent

blood pressure and pulse readings while lying down for 10 minutes and

then standing for 30 minutes. He lists five different types of blood

pressure irregularities which PWCs might have. I did the test at home

and came up with postural orthostatic tachycardia. How great it is to

finally know once and for all why I cannot sit or stand for more than a

few minutes at a time

I wrote down all of the readings of both bp and pulse and took them to

my doctor along with a forum post written by the mother of one of Dr.

Bell's patients (www.cfidsfoundation.org/forum/voumefall.htm). She says

that the people on his latest study who have tested for low blood volume

are getting 1 liter of saline solution weekly by IV. They are all doing

better and the improvements are cumulative.

My doctor started me on the IVs and it did start to help right away. My

heart has always felt weak and it began to feel stronger right away. I

don't tire as quickly now either. This is the only thing in 50 years

that has ever helped my fatigue symptoms (I can't take supplements). It

has enabled me to do research on CFS and participate in forums and lists

which has really been helpful.

Does anyone know why drinking water or even an electrolyte solution

doesn't help, but this does? Does low blood volume mean that you don't

have enough blood in your body or that your blood vessels can't

contract when you stand? If you don't have enough blood in your body,

wouldn't periodic blood transfusions help? It's very confusing and I'd

appreciate any help or contributions relating to this.

Bonnie Beale

[Guest guest]

Bonnie: Thanks for posting that info on the IV saline. I was under the

impression that the things Bell tried for increasing blood volume were

all a bit of a dissapointment. Glad to hear otherwise, and glad to hear

you are doing so well. 50 years! ouch. Maybe this can be a safe and

cheap alternative to heparin for some?? The experiences sound similar

to heparin experiences that i've read. Gookinaid electrolyte

replacement drink does help some people. Maybe not so drastically. I

find it mildly helpful if I drink a whole quart in the morning. As far

as the vasoconstriction goes, I thought Bell said that we were already

vasoconstricted? Maybe with low blood volume you would be

vasoconstricted all the time in an attempt to keep your blood pressure

up, and couldn't constrict more when needed on standing up? just a

thought. Bell did mention blood transfusions in the about.com article,

but I wouldn't want one. Just think, I could probably walk into a

clinic tomorow and donate blood, and who knows what I'm carrying! You

could get the blood from a sibling or a spouse, but even that seems

risky for health compromised people like us, at least to me.

E

<<Hi All,

Recently there was an article about Dr. Bell's latest work on

http://chronicfatigue.about.com/health/chronicfatigue/library/weekly/aa072600a.h\

tm

(sorry, I don't have HTML capability) relating to his latest work on low

blood volume. He suggested using a blood pressure cuff to take frequent

blood pressure and pulse readings while lying down for 10 minutes and

then standing for 30 minutes. He lists five different types of blood

pressure irregularities which PWCs might have. I did the test at home

and came up with postural orthostatic tachycardia. How great it is to

finally know once and for all why I cannot sit or stand for more than a

few minutes at a time

I wrote down all of the readings of both bp and pulse and took them to

my doctor along with a forum post written by the mother of one of Dr.

Bell's patients (www.cfidsfoundation.org/forum/voumefall.htm). She says

that the people on his latest study who have tested for low blood volume

are getting 1 liter of saline solution weekly by IV. They are all doing

better and the improvements are cumulative.

My doctor started me on the IVs and it did start to help right away. My

heart has always felt weak and it began to feel stronger right away. I

don't tire as quickly now either. This is the only thing in 50 years

that has ever helped my fatigue symptoms (I can't take supplements). It

has enabled me to do research on CFS and participate in forums and lists

which has really been helpful.

Does anyone know why drinking water or even an electrolyte solution

doesn't help, but this does?   Does low blood volume mean that you

don't have enough blood in your body or that your blood vessels can't

contract when you stand? If you don't have enough blood in your body,

wouldn't periodic blood transfusions help? It's very confusing and I'd

appreciate any help or contributions relating to this.

Bonnie Beale

[Guest guest]

HI, I guess that IV saline may help but it doesn't affect blood flow

characteristic (as heparin does) - so even if your blood volume is better

with IV saline, the blood still may not be able to get to the small vessels

because the cells stick together.

I wish it better were not true, so If I am wrong, correct me :-). Thanks

Stania

-----Pùvodní zpráva-----

Od: paleotechnics@... <paleotechnics@...>

Komu: egroups <egroups>

Datum: 29. záøí 2000 6:56

Pøedmìt: Re: Re: Orthostatic Intolerance

Bonnie: Thanks for posting that info on the IV saline. I was under the

impression that the things Bell tried for increasing blood volume were

all a bit of a dissapointment. Glad to hear otherwise, and glad to hear

you are doing so well. 50 years! ouch. Maybe this can be a safe and

cheap alternative to heparin for some?? The experiences sound similar

to heparin experiences that i've read. Gookinaid electrolyte

replacement drink does help some people. Maybe not so drastically. I

find it mildly helpful if I drink a whole quart in the morning. As far

as the vasoconstriction goes, I thought Bell said that we were already

vasoconstricted? Maybe with low blood volume you would be

vasoconstricted all the time in an attempt to keep your blood pressure

up, and couldn't constrict more when needed on standing up? just a

thought. Bell did mention blood transfusions in the about.com article,

but I wouldn't want one. Just think, I could probably walk into a

clinic tomorow and donate blood, and who knows what I'm carrying! You

could get the blood from a sibling or a spouse, but even that seems

risky for health compromised people like us, at least to me.

E

<<Hi All,

Recently there was an article about Dr. Bell's latest work on

http://chronicfatigue.about.com/health/chronicfatigue/library/weekly/aa07260

0a.htm

(sorry, I don't have HTML capability) relating to his latest work on low

blood volume. He suggested using a blood pressure cuff to take frequent

blood pressure and pulse readings while lying down for 10 minutes and

then standing for 30 minutes. He lists five different types of blood

pressure irregularities which PWCs might have. I did the test at home

and came up with postural orthostatic tachycardia. How great it is to

finally know once and for all why I cannot sit or stand for more than a

few minutes at a time

I wrote down all of the readings of both bp and pulse and took them to

my doctor along with a forum post written by the mother of one of Dr.

Bell's patients (www.cfidsfoundation.org/forum/voumefall.htm). She says

that the people on his latest study who have tested for low blood volume

are getting 1 liter of saline solution weekly by IV. They are all doing

better and the improvements are cumulative.

My doctor started me on the IVs and it did start to help right away. My

heart has always felt weak and it began to feel stronger right away. I

don't tire as quickly now either. This is the only thing in 50 years

that has ever helped my fatigue symptoms (I can't take supplements). It

has enabled me to do research on CFS and participate in forums and lists

which has really been helpful.

Does anyone know why drinking water or even an electrolyte solution

doesn't help, but this does? Does low blood volume mean that you

don't have enough blood in your body or that your blood vessels can't

contract when you stand? If you don't have enough blood in your body,

wouldn't periodic blood transfusions help? It's very confusing and I'd

appreciate any help or contributions relating to this.

Bonnie Beale

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]

Bonnie,

You might want to try out a product called Perm-A-Vite which reduces gut

permeability. It may reduce your GI problems. You can get it from the

manufacturer, Nutricology.com. Steve B.

Re: Orthostatic Intolerance

> Stania

> E

> Bullock

> Thanks for replying to my post. I took the printouts of your replies to

> my doctor today. He is very cautious about Heparin because the side

> effects can be brain hemoraging and other kinds of strokes and I'm at an

> age where it is necessary to be careful about such things. He is doing

> the prothrombin test for coagulation. If he says no the Heparin, I'll

> continue with the saline IVs. He said he would okay those as long as I

> need them.

>

> I'd love to take Gookinaid, but cannot tolerate electrolyte solutions or

> any kind of nutritional supplement except digestive aids. My

> nutritionist suggested Seacure and I read on the web that it eliminate

> diarrheas and helps leaky gut. Do I dare hope that it will take care of

> the osmotic diarrhea that keeps me from taking supplements? If it does,

> I'll head right for the Gookinaid.

>

> Thanks again guys.

>

> Bonnie Beale

>

>

>

> 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]

Stania

E

Bullock

Thanks for replying to my post. I took the printouts of your replies to

my doctor today. He is very cautious about Heparin because the side

effects can be brain hemoraging and other kinds of strokes and I'm at an

age where it is necessary to be careful about such things. He is doing

the prothrombin test for coagulation. If he says no the Heparin, I'll

continue with the saline IVs. He said he would okay those as long as I

need them.

I'd love to take Gookinaid, but cannot tolerate electrolyte solutions or

any kind of nutritional supplement except digestive aids. My

nutritionist suggested Seacure and I read on the web that it eliminate

diarrheas and helps leaky gut. Do I dare hope that it will take care of

the osmotic diarrhea that keeps me from taking supplements? If it does,

I'll head right for the Gookinaid.

Thanks again guys.

Bonnie Beale