Re: And the Kitchen Sink....

[Guest guest]

Hi, Sara.

I think your family doctor was right to be alarmed. I don't think

they did the right tests at the ER. An EKG, a chest X ray and some

blood tests are not going to detect what I think the evidence says

you have. I believe that you have low cardiac output, and that it's

caused either by a viral cardiomyopathy or by diastolic dysfunction

secondary to mitochondrial dysfunction, secondary in turn to

glutathione depletion, secondary in turn to genetic variations in

genes coding for enzymes that impact the methylation cycle, or

both. I'm still concerned about you. I hope this new doctor has a

better understanding of these issues, and that you will be able to

see her soon. I'm glad that you seem to be keeping your cool, but I

for one am very chagrined about this.

Rich

>

> So we went off the family doc this morning, who spent five

minutes

> looking at me, got as alarmed as I've ever seen him, and sent me

> immediately off to the ER for a cardio workup.

>

> The internist was English, and you could almost see him roll his

eyes

> when I explained that I had ME, and there were possibly other

cardiac

> issues not covered by his cursory investigation. In fact, his

body

> language closed up so tight you needed a crowbar just to see his

face

> after I uttered the dreaded words. The functional piece of my

heart

> goes out to those of you who are trying to deal with this from

the

> UK, if this jerk was representative of the breed you have to deal

> with every day.

>

> Four hours later, having had an ECG, a bunch of blood labs, and a

> chest x-ray, he declared me in fine shape, gave me a Previcid,

and

> sent me home. (I was unaware that Prevacid does anything for

> conditions that involve swelling feet -- you'd think they'd have

> mentioned that in the ads.)

>

> But -- as my husband keeps reminding me -- at least we've ruled

out

> horses, and can now pursue the hunt for zebras unimpeded.

>

> Given that my medical records are scattered hither and yon, and

it's

> now been a year since I had any serious diagnostic work done at

all

> (August, at the FFC in LA), we've decided that it's time to start

> over with a new doctor and a new battery of current and targeted

> tests, with the specific goal of getting a fresh and up-to-date

ME

> diagnosis. We've found a promising candidate close to home, a

woman

> who is both an MD and a naturopath, and who is beloved by several

of

> my more alternative female friends. She is reputed to have a very

> holistic approach, and be good with chronic illnesses. It's been

> almost 10 years since I was diagnosed with CFS now, but there's

been

> no real, coherent, systematic testing done. It's time to nail

this

> sucker down again.

>

> So here's my question: What are the most essential medical tests --

> that is, the ones likely to be covered by health insurance --

that

> you would consider critical in getting a firm diagnosis of

CFS/ME?

> Remember that in my case, we're also dealing with thyroid,

adrenal,

> possible cardiac, and possible heavy metals issues; and that I've

> never been tested for any of the usual bugs.

>

> I'm going to make up a comprehensive list, and ask the new doctor

to

> take me through it, if she's willing. Your help in compiling such

a

> list is greatly appreciated.

>

> Sara

>

[Guest guest]

I " m worried too, Sara. Didn't you say cardiomyopathy runs in your

family? Insist that you get a stress echocardiogram at least. Also get

your kidney function tested. Insist on it. Don't mess with your life.

Please go off the recup and the salt/c as well. Take all stress off

your heart and your kidneys.

> >

> > So we went off the family doc this morning, who spent five

> minutes

> > looking at me, got as alarmed as I've ever seen him, and sent me

> > immediately off to the ER for a cardio workup.

> >

> > The internist was English, and you could almost see him roll his

> eyes

> > when I explained that I had ME, and there were possibly other

> cardiac

> > issues not covered by his cursory investigation. In fact, his

> body

> > language closed up so tight you needed a crowbar just to see his

> face

> > after I uttered the dreaded words. The functional piece of my

> heart

> > goes out to those of you who are trying to deal with this from

> the

> > UK, if this jerk was representative of the breed you have to deal

> > with every day.

> >

> > Four hours later, having had an ECG, a bunch of blood labs, and a

> > chest x-ray, he declared me in fine shape, gave me a Previcid,

> and

> > sent me home. (I was unaware that Prevacid does anything for

> > conditions that involve swelling feet -- you'd think they'd have

> > mentioned that in the ads.)

> >

> > But -- as my husband keeps reminding me -- at least we've ruled

> out

> > horses, and can now pursue the hunt for zebras unimpeded.

> >

> > Given that my medical records are scattered hither and yon, and

> it's

> > now been a year since I had any serious diagnostic work done at

> all

> > (August, at the FFC in LA), we've decided that it's time to start

> > over with a new doctor and a new battery of current and targeted

> > tests, with the specific goal of getting a fresh and up-to-date

> ME

> > diagnosis. We've found a promising candidate close to home, a

> woman

> > who is both an MD and a naturopath, and who is beloved by several

> of

> > my more alternative female friends. She is reputed to have a very

> > holistic approach, and be good with chronic illnesses. It's been

> > almost 10 years since I was diagnosed with CFS now, but there's

> been

> > no real, coherent, systematic testing done. It's time to nail

> this

> > sucker down again.

> >

> > So here's my question: What are the most essential medical tests --

>

> > that is, the ones likely to be covered by health insurance --

> that

> > you would consider critical in getting a firm diagnosis of

> CFS/ME?

> > Remember that in my case, we're also dealing with thyroid,

> adrenal,

> > possible cardiac, and possible heavy metals issues; and that I've

> > never been tested for any of the usual bugs.

> >

> > I'm going to make up a comprehensive list, and ask the new doctor

> to

> > take me through it, if she's willing. Your help in compiling such

> a

> > list is greatly appreciated.

> >

> > Sara

> >

>

[Guest guest]

Sara>> Four hours later, having had an ECG, a bunch of blood labs, and a

chest x-ray, he declared me in fine shape, gave me a Previcid, and

sent me home. (I was unaware that Prevacid does anything for

conditions that involve swelling feet -- you'd think they'd have

mentioned that in the ads.)

This is what I expected, and mentioned earlier. OF course he did not

run the more exotic tests that would prove that you have some diastolic

heart dysfunction or other heart issues common in CFS. But he did rule

out the type of cardiomyopathy that causes edema. I think this is a

good thing for you! So if it goes away on a lower dose of salt, then

probably it is just detox edema from the salt. That is quite common on

the salt/c protocol. BUT the proper procedure on that protocol is to

ramp-up and ramp-down according to symptoms, so definitely would be good

to lower the doses for awhile. But I would not stop altogether, because

the salt/c (probably also recup) will help you maintain adequate blood

volume (similar to Cheney's Gookinaid recipe), which in my experience

lowers stress on the heart and supports the adrenals, which you will

need to detoxify completely.

Sara>> So here's my question: What are the most essential medical tests

--

that is, the ones likely to be covered by health insurance -- that

you would consider critical in getting a firm diagnosis of CFS/ME?

Remember that in my case, we're also dealing with thyroid, adrenal,

possible cardiac, and possible heavy metals issues; and that I've

never been tested for any of the usual bugs.

I'm going to make up a comprehensive list, and ask the new doctor to

take me through it, if she's willing. Your help in compiling such a

list is greatly appreciated.

What are you trying to prove with new tests? For example, if you want

to get disability, you need tests to establish CFS, and that means you

must rule out known causes. So testing for the infections must include

EBV, and the things the CDC believes rule-out CFS. But I assume that is

not the agenda right now.

If you want tests that are covered by insurance, you might get a good

test for Lyme (most people recommend Igenix), and mycoplasma, and HHV6

or other infections. Also perhaps some of the autism spectrum tests

would be covered (full stool analysis, liver function test, ASI adrenal

test, various tests for metals, etc.).

--Kurt

[Guest guest]

Hi Sara,

For me, the genetic test from Amy Yasko, full SNP profile with a GAR at

www.testing4health.com is worth its weight in gold and also the Genovations

Detoxi Profile which I just had.

Janet

in San Diego

Kurt R <kurt@...> wrote:

Sara>> Four hours later, having had an ECG, a bunch of blood labs, and

a

chest x-ray, he declared me in fine shape, gave me a Previcid, and

sent me home. (I was unaware that Prevacid does anything for

conditions that involve swelling feet -- you'd think they'd have

mentioned that in the ads.)

This is what I expected, and mentioned earlier. OF course he did not

run the more exotic tests that would prove that you have some diastolic

heart dysfunction or other heart issues common in CFS. But he did rule

out the type of cardiomyopathy that causes edema. I think this is a

good thing for you! So if it goes away on a lower dose of salt, then

probably it is just detox edema from the salt. That is quite common on

the salt/c protocol. BUT the proper procedure on that protocol is to

ramp-up and ramp-down according to symptoms, so definitely would be good

to lower the doses for awhile. But I would not stop altogether, because

the salt/c (probably also recup) will help you maintain adequate blood

volume (similar to Cheney's Gookinaid recipe), which in my experience

lowers stress on the heart and supports the adrenals, which you will

need to detoxify completely.

Sara>> So here's my question: What are the most essential medical tests

--

that is, the ones likely to be covered by health insurance -- that

you would consider critical in getting a firm diagnosis of CFS/ME?

Remember that in my case, we're also dealing with thyroid, adrenal,

possible cardiac, and possible heavy metals issues; and that I've

never been tested for any of the usual bugs.

I'm going to make up a comprehensive list, and ask the new doctor to

take me through it, if she's willing. Your help in compiling such a

list is greatly appreciated.

What are you trying to prove with new tests? For example, if you want

to get disability, you need tests to establish CFS, and that means you

must rule out known causes. So testing for the infections must include

EBV, and the things the CDC believes rule-out CFS. But I assume that is

not the agenda right now.

If you want tests that are covered by insurance, you might get a good

test for Lyme (most people recommend Igenix), and mycoplasma, and HHV6

or other infections. Also perhaps some of the autism spectrum tests

would be covered (full stool analysis, liver function test, ASI adrenal

test, various tests for metals, etc.).

--Kurt

[Guest guest]

On Jul 17, 2006, at 5:51 PM, rvankonynen wrote:

> Hi, Sara.

>

> I think your family doctor was right to be alarmed. I don't think

> they did the right tests at the ER. An EKG, a chest X ray and some

> blood tests are not going to detect what I think the evidence says

> you have. I believe that you have low cardiac output, and that it's

> caused either by a viral cardiomyopathy or by diastolic dysfunction

> secondary to mitochondrial dysfunction, secondary in turn to

> glutathione depletion, secondary in turn to genetic variations in

> genes coding for enzymes that impact the methylation cycle, or

> both. I'm still concerned about you. I hope this new doctor has a

> better understanding of these issues, and that you will be able to

> see her soon. I'm glad that you seem to be keeping your cool, but I

> for one am very chagrined about this.

I'm concerned, too. We actually brought printouts of the full

Peckerman study, along with a collection of stuff from Lerner, along

with us. He wouldn't even look at them. And when my husband started

talking about diastolic dysfunctions, the guy was totally dismissive.

He let us know, in no uncertain terms, that the entire subject was

laughably out-of-bounds. He reacted like we'd proposed using leeches.

But, like I said: I've never heard of a case of heartburn that made

the feet swell. That's just wrong. The good news is that they did do

about 40 various blood assays, and I was pretty much dead-center

normal on all but one or two of them. Which means that all these

supplements I'm using are doing *something* to keep my body working

correctly.

The plan now is to go back to our family doctor, point out that we've

now done the due diligence on the " regular " cardiac fronts, and

insist that we start looking past the usual issues and toward the

more exotic ones. As I said: we've ruled out horses, and are now able

to start chasing zebras. And, thanks to you, we've got one or two

very specific zebras in mind.

Sara

[Guest guest]

On Jul 17, 2006, at 7:59 PM, Kurt R wrote:

> This is what I expected, and mentioned earlier. OF course he did not

> run the more exotic tests that would prove that you have some

> diastolic

> heart dysfunction or other heart issues common in CFS. But he did

> rule

> out the type of cardiomyopathy that causes edema. I think this is a

> good thing for you! So if it goes away on a lower dose of salt, then

> probably it is just detox edema from the salt. That is quite

> common on

> the salt/c protocol. BUT the proper procedure on that protocol is to

> ramp-up and ramp-down according to symptoms, so definitely would be

> good

> to lower the doses for awhile. But I would not stop altogether,

> because

> the salt/c (probably also recup) will help you maintain adequate blood

> volume (similar to Cheney's Gookinaid recipe), which in my experience

> lowers stress on the heart and supports the adrenals, which you will

> need to detoxify completely.

My BP was 138/66, a systolic number that is the highest it's ever

been in my life outside of the third trimester of pregnancy. And

that's after being off the Recup entirely after two full days. I'm

not liking that....

> What are you trying to prove with new tests? For example, if you want

> to get disability, you need tests to establish CFS, and that means you

> must rule out known causes. So testing for the infections must

> include

> EBV, and the things the CDC believes rule-out CFS. But I assume

> that is

> not the agenda right now.

Disability is definitely on my agenda. I have not worked for money in

nine years, and it's high time I admit that I may never do so again.

And I paid into the system all those years; it's time to get

something out of it.

I'm shooting for a diagnosis of either ME (which is what it's called

in Canada anyway), or some kind of heart issue (the diastolic heart

dysfunction qualifies readily). The whole thing is tricky because I'm

trying to get as much of this testing done in Canada, where I'm

covered under health care, as I can. I may have to have some of it

repeated by US doctors for the benefit of my disability application;

but at least I can narrow it down to a sure diagnosis here, and thus

know specifically which tests I'll need to repeat in order to make my

case to the US disability people.

> If you want tests that are covered by insurance, you might get a good

> test for Lyme (most people recommend Igenix), and mycoplasma, and HHV6

> or other infections. Also perhaps some of the autism spectrum tests

> would be covered (full stool analysis, liver function test, ASI

> adrenal

> test, various tests for metals, etc.).

Igenex isn't covered by my Canadian health care. But I could probably

make a good case for the rest. My short list of infections to test

for includes Lyme, babesia, mycoplasma, CMV, candida, and EBV. Other

suggestions welcome...

Sara

[Guest guest]

Hi Sara,

I just kinda had a feeling about you lately...

anyway, don't forget...feet up...always, or moving! I think this would be good

no matter what is the cause of swelling, or, if cardiac issue. Raise Q, reduce

swelling.

Are you having any pressure/congestion in chest now?-

You might experiemnt...if it seems you do, not drinking excess fluids is better.

And not too close to going to bed.

Dr. Cheney said if lying down is more uncomfortable, don't have Gookinaid/? in

PM.

Would something like Cherries/Cherry Juice...good for the swelling of gout, be

worth a try? Just guessing.

check it.

Don't forget, no one here is licensed to practice medicine

(especially over the internet! And most, no medical training)

While I began years ago needing to focus on salt/fluid/Gookinaid, these days

have to balance that with not overdoing it for chest congestion...especially in

heat...very tricky.

Recently, in heat and stress, I had similar BP...dramatic for me, because it's

always been 90s over 60s...sometimes less...even w/Florinef and other things.

It always goes up with infection and trips to ER too.

It seem resolving this swelling is A #1, and getting to a truly educated ME/CFS

Specialist?

Glad you go back to GP, who may think of some Zebras.

You probably will not find someone to do Peckerman/Cheney type tests, but you

could look around for the equipment: A) Impedance GE Vivd 7 Echo...while

tilted. Don't stress over it, tho...I never did find them here to do follow-ups.

Impedance has only been available/taught in Med School for 5 years...so young

Cardio more aware.

Even Diastolic Dysfunction only seriously studied 10 years or so.

I have gotten that reaction to presenting papers/knowing stuff many times...can

be many things...ego/irritation because it's out of their scope, or other. They

do need to be the boss.

BW,

Katrina

-- In , Mercuria <mercuria@...> wrote:

>

>

> On Jul 17, 2006, at 7:59 PM, Kurt R wrote:

>

> > This is what I expected, and mentioned earlier. OF course he did not

> > run the more exotic tests that would prove that you have some

> > diastolic

> > heart dysfunction or other heart issues common in CFS. But he did

> > rule

> > out the type of cardiomyopathy that causes edema. I think this is a

> > good thing for you! So if it goes away on a lower dose of salt, then

> > probably it is just detox edema from the salt. That is quite

> > common on

> > the salt/c protocol. BUT the proper procedure on that protocol is to

> > ramp-up and ramp-down according to symptoms, so definitely would be

> > good

> > to lower the doses for awhile. But I would not stop altogether,

> > because

> > the salt/c (probably also recup) will help you maintain adequate blood

> > volume (similar to Cheney's Gookinaid recipe), which in my experience

> > lowers stress on the heart and supports the adrenals, which you will

> > need to detoxify completely.

>

> My BP was 138/66, a systolic number that is the highest it's ever

> been in my life outside of the third trimester of pregnancy. And

> that's after being off the Recup entirely after two full days. I'm

> not liking that....

>

> > What are you trying to prove with new tests? For example, if you want

> > to get disability, you need tests to establish CFS, and that means you

> > must rule out known causes. So testing for the infections must

> > include

> > EBV, and the things the CDC believes rule-out CFS. But I assume

> > that is

> > not the agenda right now.

>

> Disability is definitely on my agenda. I have not worked for money in

> nine years, and it's high time I admit that I may never do so again.

> And I paid into the system all those years; it's time to get

> something out of it.

>

> I'm shooting for a diagnosis of either ME (which is what it's called

> in Canada anyway), or some kind of heart issue (the diastolic heart

> dysfunction qualifies readily). The whole thing is tricky because I'm

> trying to get as much of this testing done in Canada, where I'm

> covered under health care, as I can. I may have to have some of it

> repeated by US doctors for the benefit of my disability application;

> but at least I can narrow it down to a sure diagnosis here, and thus

> know specifically which tests I'll need to repeat in order to make my

> case to the US disability people.

>

> > If you want tests that are covered by insurance, you might get a good

> > test for Lyme (most people recommend Igenix), and mycoplasma, and HHV6

> > or other infections. Also perhaps some of the autism spectrum tests

> > would be covered (full stool analysis, liver function test, ASI

> > adrenal

> > test, various tests for metals, etc.).

>

> Igenex isn't covered by my Canadian health care. But I could probably

> make a good case for the rest. My short list of infections to test

> for includes Lyme, babesia, mycoplasma, CMV, candida, and EBV. Other

> suggestions welcome...

>

> Sara

>

[Guest guest]

YOu need your family doctor to refer you to a cardiologist and

recommend a stress echocardiogram and you also need to test your

kidney function. Doesn't cardiomyoapthy run in your family or am I

imagining you posting that once? If it does you talk about that and

the risk. You make them afraid of malpractice if they don't give you

the right tests. I disagree with Kurt, who I respect highly, that it

is likely just edema from salt/c. It may well be but it could be

something more serious. Travel could have been an equal stress

however, considering the pressure changes in a plane on a relatively

long flight to Greece. However that should have abated by now. It is

well known but never formally studied that plane travel can set off

things like deep vein thrombosis for instance.

At one point I was having irregular heartbeats when lying down at

night, and I knew it was from taking way too much high potency

allicin, a form that is not commercially available. I intuitively knew

that and allicin can shift nitric oxide levels. Nonetheless I went and

got an EKG and echocardiogram, and then of course went off the allicin

and it normalized.

You can't mess around with your heart or with massively swelling ankles.

>

> > Hi, Sara.

> >

> > I think your family doctor was right to be alarmed. I don't think

> > they did the right tests at the ER. An EKG, a chest X ray and some

> > blood tests are not going to detect what I think the evidence says

> > you have. I believe that you have low cardiac output, and that it's

> > caused either by a viral cardiomyopathy or by diastolic dysfunction

> > secondary to mitochondrial dysfunction, secondary in turn to

> > glutathione depletion, secondary in turn to genetic variations in

> > genes coding for enzymes that impact the methylation cycle, or

> > both. I'm still concerned about you. I hope this new doctor has a

> > better understanding of these issues, and that you will be able to

> > see her soon. I'm glad that you seem to be keeping your cool, but I

> > for one am very chagrined about this.

>

> I'm concerned, too. We actually brought printouts of the full

> Peckerman study, along with a collection of stuff from Lerner, along

> with us. He wouldn't even look at them. And when my husband started

> talking about diastolic dysfunctions, the guy was totally dismissive.

> He let us know, in no uncertain terms, that the entire subject was

> laughably out-of-bounds. He reacted like we'd proposed using leeches.

>

> But, like I said: I've never heard of a case of heartburn that made

> the feet swell. That's just wrong. The good news is that they did do

> about 40 various blood assays, and I was pretty much dead-center

> normal on all but one or two of them. Which means that all these

> supplements I'm using are doing *something* to keep my body working

> correctly.

>

> The plan now is to go back to our family doctor, point out that we've

> now done the due diligence on the " regular " cardiac fronts, and

> insist that we start looking past the usual issues and toward the

> more exotic ones. As I said: we've ruled out horses, and are now able

> to start chasing zebras. And, thanks to you, we've got one or two

> very specific zebras in mind.

>

> Sara

>

[Guest guest]

Hi Sara,

Hope you are feeling better. You are the 3rd person I know that has

ended up in the ER or hospital while on the Recup or Salt/C program.

I personally stopped taking Recup 2 months ago. I had problems with

more adrenal exhastion after I went off of it. I was only up to one

or packet a day.

I recently went to a cardiologist and had and Echo and a few other

tests done but he would not do a Impendence Cardiography like Rich

recommended. I was so disappointed and the doc wrote up a 4 page

report and BS'ed his way through. He actually changed quotes I made

about my history that were untrue. He thought I was nuts for asking

for the Impedance Cardiography. More money wasted, stress, and

frustration.

I am still following Dr. Yasko's program and continuuing to improve

by dumping Mercury and metals without chelation therapy.

Best wishes, Sue T

My tests were normal.> >

> > On Jul 17, 2006, at 7:59 PM, Kurt R wrote:

> >

> > > This is what I expected, and mentioned earlier. OF course he

did not

> > > run the more exotic tests that would prove that you have some

> > > diastolic

> > > heart dysfunction or other heart issues common in CFS. But he

did

> > > rule

> > > out the type of cardiomyopathy that causes edema. I think

this is a

> > > good thing for you! So if it goes away on a lower dose of

salt, then

> > > probably it is just detox edema from the salt. That is quite

> > > common on

> > > the salt/c protocol. BUT the proper procedure on that

protocol is to

> > > ramp-up and ramp-down according to symptoms, so definitely

would be

> > > good

> > > to lower the doses for awhile. But I would not stop

altogether,

> > > because

> > > the salt/c (probably also recup) will help you maintain

adequate blood

> > > volume (similar to Cheney's Gookinaid recipe), which in my

experience

> > > lowers stress on the heart and supports the adrenals, which

you will

> > > need to detoxify completely.

> >

> > My BP was 138/66, a systolic number that is the highest it's

ever

> > been in my life outside of the third trimester of pregnancy.

And

> > that's after being off the Recup entirely after two full days.

I'm

> > not liking that....

> >

> > > What are you trying to prove with new tests? For example, if

you want

> > > to get disability, you need tests to establish CFS, and that

means you

> > > must rule out known causes. So testing for the infections

must

> > > include

> > > EBV, and the things the CDC believes rule-out CFS. But I

assume

> > > that is

> > > not the agenda right now.

> >

> > Disability is definitely on my agenda. I have not worked for

money in

> > nine years, and it's high time I admit that I may never do so

again.

> > And I paid into the system all those years; it's time to get

> > something out of it.

> >

> > I'm shooting for a diagnosis of either ME (which is what it's

called

> > in Canada anyway), or some kind of heart issue (the diastolic

heart

> > dysfunction qualifies readily). The whole thing is tricky

because I'm

> > trying to get as much of this testing done in Canada, where I'm

> > covered under health care, as I can. I may have to have some of

it

> > repeated by US doctors for the benefit of my disability

application;

> > but at least I can narrow it down to a sure diagnosis here, and

thus

> > know specifically which tests I'll need to repeat in order to

make my

> > case to the US disability people.

> >

> > > If you want tests that are covered by insurance, you might get

a good

> > > test for Lyme (most people recommend Igenix), and mycoplasma,

and HHV6

> > > or other infections. Also perhaps some of the autism spectrum

tests

> > > would be covered (full stool analysis, liver function test,

ASI

> > > adrenal

> > > test, various tests for metals, etc.).

> >

> > Igenex isn't covered by my Canadian health care. But I could

probably

> > make a good case for the rest. My short list of infections to

test

> > for includes Lyme, babesia, mycoplasma, CMV, candida, and EBV.

Other

> > suggestions welcome...

> >

> > Sara

> >

>

[Guest guest]

Sara>> I'm concerned, too. We actually brought printouts of the full

Peckerman study, along with a collection of stuff from Lerner, along

with us. He wouldn't even look at them. And when my husband started

talking about diastolic dysfunctions, the guy was totally dismissive.

He let us know, in no uncertain terms, that the entire subject was

laughably out-of-bounds. He reacted like we'd proposed using leeches.

Sara>> But, like I said: I've never heard of a case of heartburn that

made

the feet swell. That's just wrong. The good news is that they did do

about 40 various blood assays, and I was pretty much dead-center

normal on all but one or two of them. Which means that all these

supplements I'm using are doing *something* to keep my body working

correctly.

** Sara - Maybe it is not good to use salt/c and recup/c unless you are

connected with a group using these therapies. Had that been the case

you would have rapidly learned that these are common die-off responses,

including the combination of chest pain, swollen feet, and fatigue. I

have had these MANY times, and have CHF in the family also, but these

symptoms always resolve on a regular 'herx' type of schedule and my

standard labs are always normal, including heart and kidney tests. This

is nothing to panic about. I suggest that you join Salt-n-C or

LymeStrategies and post your symptoms there and see what people have to

say about them, who else has experienced this. And many people get

these symptoms right off, even with doses as low as 1g. You were on two

packets of Recup/c with is probably similar to 2-3g of salt/c, that is a

large enough dose for a major herx if taken away from meals. Add to

that your glutathione boosting, which probably improved your body's

ability to utilize the recup/c, and you may have had a highly efficient

and powerful response.

Also, Recup may not be the best salt for you personally, some people

have reactions to it, for unknown reasons. Have you tried unprocessed

sea salt?

--Kurt

[Guest guest]

Jill>> YOu need your family doctor to refer you to a cardiologist and

recommend a stress echocardiogram and you also need to test your

kidney function. Doesn't cardiomyoapthy run in your family or am I

imagining you posting that once? If it does you talk about that and

the risk. You make them afraid of malpractice if they don't give you

the right tests. I disagree with Kurt, who I respect highly, that it

is likely just edema from salt/c. It may well be but it could be

something more serious. Travel could have been an equal stress

however, considering the pressure changes in a plane on a relatively

long flight to Greece. However that should have abated by now. It is

well known but never formally studied that plane travel can set off

things like deep vein thrombosis for instance.

** Jill, I don't mind disagreements, if I am wrong I want to know. But

in this case she already had a test for cardiomyopathy and was fine.

She already has DATA about this. And I have had these exact symptoms

from salt/c. But I agree that these things are not a perfect science,

we are all unique, etc.. so caution is always warranted.

Also, regarding travel, recovery of a PWC from travel can take many

weeks, sometimes months. Particularly long international flights. I

once had CFS post-travel malaise from an international flight that

lasted for over a month, most of that in bed, and this was quite early

in my illness and I was relatively healthy still.

--Kurt

[Guest guest]

Kurt, it is much better to err on the side of caution when we're on

internet groups and someone is manifesting symptoms that could be

dangerous. It is much wiser to suggest thoroughly ruling out serious

problems, as Rich suggested, than to reassure them that this might be

a herx. I've always been concerned about advice on groups when people

are in trouble with symptoms...we're not doctors, we don't have the

data. I personally do NOT think she has enough data, I agree with

Rich. I think she needs to be assertive and get it and I know she can.

Something happened. You ramped up slowly on salt/c and you were

already very ill and housebound. Sara had recovered a great deal as

she has written often lately and was much more active, even travelled

to Greece. Something has happened to put her in bed for two weeks with

severe headaches and very swollen ankles.

She needs to take this seriously imo. I am concerned. I am not

concerned IF she takes it seriously and gets the tests, and she seems

quite willing. We need to rule out REAL stuff, that isn't just

herxheimers. Her description of her swollen ankles was quite extreme.

Her family doctor was very alarmed.

I am weighing in out of worry. I do this in my own case from time to

time. When there is an odd symptom, I do not " reassure " myself, I get

it checked out, I rule out something more serious. At one point I went

to the ER and insisted on a blood test to rule out blood infection as

I had a low grade fever and bad malaise and strange symptoms after

magnesium injections and I wasn't sure if I'd contaminated the bottle

through re-use. I turned out to be fine, but it was better to insist

on it than actually get septicemia which was a small but real chance.

>

> Jill>> YOu need your family doctor to refer you to a cardiologist and

> recommend a stress echocardiogram and you also need to test your

> kidney function. Doesn't cardiomyoapthy run in your family or am I

> imagining you posting that once? If it does you talk about that and

> the risk. You make them afraid of malpractice if they don't give you

> the right tests. I disagree with Kurt, who I respect highly, that it

> is likely just edema from salt/c. It may well be but it could be

> something more serious. Travel could have been an equal stress

> however, considering the pressure changes in a plane on a relatively

> long flight to Greece. However that should have abated by now. It is

> well known but never formally studied that plane travel can set off

> things like deep vein thrombosis for instance.

>

>

> ** Jill, I don't mind disagreements, if I am wrong I want to know. But

> in this case she already had a test for cardiomyopathy and was fine.

> She already has DATA about this. And I have had these exact symptoms

> from salt/c. But I agree that these things are not a perfect science,

> we are all unique, etc.. so caution is always warranted.

> Also, regarding travel, recovery of a PWC from travel can take many

> weeks, sometimes months. Particularly long international flights. I

> once had CFS post-travel malaise from an international flight that

> lasted for over a month, most of that in bed, and this was quite early

> in my illness and I was relatively healthy still.

> --Kurt

>

>

>

>

[Guest guest]

Sara>> My BP was 138/66, a systolic number that is the highest it's ever

been in my life outside of the third trimester of pregnancy. And

that's after being off the Recup entirely after two full days. I'm

not liking that....

** that is a low diastolic, but I know athletic people who have

diastolic around 70 all the time. Still it might be a mild case of

'isolated systolic hypertension' (ISH) which is common among seniors.

But I believe since systolic is still barely under 140 it would not be

diagnosed yet.

Many people on salt/c report a mild elevation of systolic BP for a few

months, then it usually normalizes. In my case I had high BP for

decades and it is finally down to normal on salt/c. One person once

reported going from 160/100 to 120/80 on salt/c. And others report

systolic going up mildly like you appear to have, usually to around 140,

or something like that. You might consider purchasing your own BP cuff

if you are worried about this, and monitor yourself. I have my own cuff

and monitor my BP, I think that is useful if you are on a salt therapy.

Also, some people get BP spikes when they are worried and at the dr's

office, and with your own cuff you can rule that out.

Sara>> Disability is definitely on my agenda. I have not worked for

money in

nine years, and it's high time I admit that I may never do so again.

And I paid into the system all those years; it's time to get

something out of it.

** Then you definitely need to find out your govt criteria for CFS

diagnosis and make sure you have the proper tests to rule out 'other

causes'.

Sara>> I'm shooting for a diagnosis of either ME (which is what it's

called

in Canada anyway), or some kind of heart issue (the diastolic heart

dysfunction qualifies readily). The whole thing is tricky because I'm

trying to get as much of this testing done in Canada, where I'm

covered under health care, as I can. I may have to have some of it

repeated by US doctors for the benefit of my disability application;

but at least I can narrow it down to a sure diagnosis here, and thus

know specifically which tests I'll need to repeat in order to make my

case to the US disability people.

** you will not likely get disability in the US for DHF, I was told this

by a disability attorney. This is because it is experimental/faddish in

their view, they live 20 years in the past with regard to what qualifies

as evidence of disability. They do not jump on new bandwagons, just

their policy for all diseases, not just CFS. Incidentally, Lyme is also

not a good basis for disability as they believe it is solved with 30

days of abx.

I agree with the 'acceptence' mode you have entered. We need to deal

with the facts, for me this also was very hard. I think many PWC are in

denial about this and harm themselves because they keep pushing to work.

Maybe because we are only partly disabled for so long before totally

disabled we do not see the facts. And also we are higher functional

disabled people than some other disabilities (although that varies). We

are in a gray area. So I think it is also important for us to do

part-time 'contributory' work, to do what we can, until a cure is found

(always keep hope alive!).

Sara>> Igenex isn't covered by my Canadian health care. But I could

probably

make a good case for the rest. My short list of infections to test

for includes Lyme, babesia, mycoplasma, CMV, candida, and EBV. Other

suggestions welcome...

** those are all good I think, I would add HHV6. There was a very good

thread on getting disability about 3-4 months ago, you may want to find

that.

--Kurt

[Guest guest]

Jill,

Now I understand your posts better on this thread. Worry is not data,

and she already does have data about the condition of her heart muscle.

Her doctor is not concerned.

Telling someone they should be alarmed and get further testing when they

have already been tested and told they were fine is itself a form of

advice. You can not have it both ways, imply that one person's ideas

are inappropriate, but then make your own suggestions, without also

being in the advice-giving role. And to err on the side of caution is

not always an effective treatment strategy. Doctors take risks all the

time in treatment, and I think we must also learn to take calculated

risks. Too much caution is as bad as not enough caution when you are

fighting a difficult illness, because time works against us. Going for

extensive medical testing, particularly heart stress tests, is quite

stressful for PWC, particularly when they are in a malaise and have low

energy. That is a risk I would not take personally, knowing that there

is a good chance that the situation will resolve. If the doctor had

found serious heart muscle deterioration, I would not have this view,

BTW. But he did not find that condition.

Often things resolve in time on their own, and because I know these

symptoms are common with salt therapies, if I were Sara I would take my

doctor's opinion for now, and wait a few weeks and rest and see if it

resolves. Obviously if you were Sara you would insist on extensive

further testing as you do not believe her edema was caused by the

combination of travel stress and increased salt consumption. I am sure

Sara realizes that we are all just giving opinions and will do what she

feels is best.

--Kurt

Re: And the Kitchen Sink....

Kurt, it is much better to err on the side of caution when we're on

internet groups and someone is manifesting symptoms that could be

dangerous. It is much wiser to suggest thoroughly ruling out serious

problems, as Rich suggested, than to reassure them that this might be

a herx. I've always been concerned about advice on groups when people

are in trouble with symptoms...we're not doctors, we don't have the

data. I personally do NOT think she has enough data, I agree with

Rich. I think she needs to be assertive and get it and I know she can.

Something happened. You ramped up slowly on salt/c and you were

already very ill and housebound. Sara had recovered a great deal as

she has written often lately and was much more active, even travelled

to Greece. Something has happened to put her in bed for two weeks with

severe headaches and very swollen ankles.

She needs to take this seriously imo. I am concerned. I am not

concerned IF she takes it seriously and gets the tests, and she seems

quite willing. We need to rule out REAL stuff, that isn't just

herxheimers. Her description of her swollen ankles was quite extreme.

Her family doctor was very alarmed.

I am weighing in out of worry. I do this in my own case from time to

time. When there is an odd symptom, I do not " reassure " myself, I get

it checked out, I rule out something more serious. At one point I went

to the ER and insisted on a blood test to rule out blood infection as

I had a low grade fever and bad malaise and strange symptoms after

magnesium injections and I wasn't sure if I'd contaminated the bottle

through re-use. I turned out to be fine, but it was better to insist

on it than actually get septicemia which was a small but real chance.

>

> Jill>> YOu need your family doctor to refer you to a cardiologist and

> recommend a stress echocardiogram and you also need to test your

> kidney function. Doesn't cardiomyoapthy run in your family or am I

> imagining you posting that once? If it does you talk about that and

> the risk. You make them afraid of malpractice if they don't give you

> the right tests. I disagree with Kurt, who I respect highly, that it

> is likely just edema from salt/c. It may well be but it could be

> something more serious. Travel could have been an equal stress

> however, considering the pressure changes in a plane on a relatively

> long flight to Greece. However that should have abated by now. It is

> well known but never formally studied that plane travel can set off

> things like deep vein thrombosis for instance.

>

>

> ** Jill, I don't mind disagreements, if I am wrong I want to know. But

> in this case she already had a test for cardiomyopathy and was fine.

> She already has DATA about this. And I have had these exact symptoms

> from salt/c. But I agree that these things are not a perfect science,

> we are all unique, etc.. so caution is always warranted.

> Also, regarding travel, recovery of a PWC from travel can take many

> weeks, sometimes months. Particularly long international flights. I

> once had CFS post-travel malaise from an international flight that

> lasted for over a month, most of that in bed, and this was quite early

> in my illness and I was relatively healthy still.

> --Kurt

>

>

>

>

[Guest guest]

Her doctor in her own words was alarmed.

Rich is concerned, and Rich is brilliant if not a genius.

I am concerned, and I'm pretty smart.

We had one death on this list already--.

We need to err on the side of caution.

Yes, it's advice, but not medical advice--its advice to get the proper

testing.

Let's let it go, Sara will do what she needs to do but I would feel

remiss had I not chimed in.

I don't want to argue with you--you know I wish you only the best and

often seek your thoughts on my own treatment protocol.

> >

> > Jill>> YOu need your family doctor to refer you to a cardiologist and

> > recommend a stress echocardiogram and you also need to test your

> > kidney function. Doesn't cardiomyoapthy run in your family or am I

> > imagining you posting that once? If it does you talk about that and

> > the risk. You make them afraid of malpractice if they don't give you

> > the right tests. I disagree with Kurt, who I respect highly, that it

> > is likely just edema from salt/c. It may well be but it could be

> > something more serious. Travel could have been an equal stress

> > however, considering the pressure changes in a plane on a relatively

> > long flight to Greece. However that should have abated by now. It is

> > well known but never formally studied that plane travel can set off

> > things like deep vein thrombosis for instance.

> >

> >

> > ** Jill, I don't mind disagreements, if I am wrong I want to know. But

> > in this case she already had a test for cardiomyopathy and was fine.

> > She already has DATA about this. And I have had these exact symptoms

> > from salt/c. But I agree that these things are not a perfect science,

> > we are all unique, etc.. so caution is always warranted.

> > Also, regarding travel, recovery of a PWC from travel can take many

> > weeks, sometimes months. Particularly long international flights. I

> > once had CFS post-travel malaise from an international flight that

> > lasted for over a month, most of that in bed, and this was quite early

> > in my illness and I was relatively healthy still.

> > --Kurt

> >

> >

> >

> >

[Guest guest]

Hi, Kurt.

I've just reviewed the discussion of the cardiomyopathies in the

latest editions of the Cecil Textbook of Medicine, on's

Principles of Internal Medicine, and the Merck Manual.

All three report that there are three categories of cardiomyopathy:

dilated, hypertrophic and restrictive. Restrictive cardiomyopathy

involves diastolic dysfunction. The chest X ray cannot detect most

restrictive cardiomyopathies. Blood tests will not, either. The EKG

may show low voltage or some non-specific changes in restrictive

cardiomyopathy, but it is not diagnostic. It really takes

echocardiography with one of the newer machines in the hands of a

trained person to detect restrictive cardiomypothathies reliably. And

of course, impedance cardiography can detect low cardiac output, which

should alert the physician that something is amiss in the heart. My

understanding from what she reported is that Sara did not receive

either of these tests. Therefore, I don't think the doctor would have

detected a restrictive cardiomyopathy, which is the type that Dr.

Cheney has reported finding in most of his long-term CFS patients.

Increasing blood volume using sodium chloride and water will increase

venous return and right atrial pressure. This can be helpful in

compensating for diastolic dysfunction by increasing the filling of

the left ventricle and increasing cardiac output. However, I have

encountered two cases so far in people with long-term CFS who

benefited at first from increasing their blood volume, but at a

certain point, all of a sudden they seem to have gone into

decompensated heart failure. They both report it as being a very

unpleasant experience. Fortunately in both cases the sympathetic

nervous system kicked in and saved their lives by raising the

heartrate and the intensity of the heartbeat, which lifted the blood

pressure and caused the kidneys to dump more water into the urine.

This lowered the blood volume, the venous return, and the right atrial

pressure, and moved the operating point of the heart back into the

compensated heart failure regime. If you want to see a detailed

description of this, you can find it in Chapter 22 of the latest

edition of Guyton's and Hall's textbook Medical Physiology.

Now, I will grant you that both these women were putting in salt and

water intravenously and not orally, as you are advocating.

Nevertheless, since you are discussing pounds of weight gain, I think

you are putting in considerable amounts of water. Perhaps the rate is

slower and the circulatory system is able to compensate if the blood

volume rises at a slower rate. I'm not sure. But I really think it's

important to be careful about this, and to always keep in mind that

it's really not valid to extrapolate from one or a few cases of CFS to

everyone's case. This is a very heterogeneous population, and some

people have been ill for many years and are older than others. Their

hearts and circulatory systems may not respond in the same way as do

those of younger PWCs or those who have been ill for a shorter time.

I just want to urge caution.

Rich

But

> in this case she already had a test for cardiomyopathy and was fine.

> She already has DATA about this.

> --Kurt

[Guest guest]

>

> But

> > in this case she already had a test for cardiomyopathy and was

fine.

> > She already has DATA about this.

>

> > --Kurt

>

[Guest guest]

Thanks to Sue, Kat, Kurt, and especially Rich and Jill for their

concern, and their contributions to this conversation.

We are, indeed, taking this seriously; and will continue to pursue

the issue with whatever medical talent we can find. I've now enlisted

my husband to help me with this (and he's joined this list), which

will more than double our effectiveness, since he's at least as good

at researching medical issues as I am (and probably better).

A clarification of symptoms: My foot swelling came up gradually over

the course of my sojourn in Greece; it increased daily for over a

week, until my feet were almost elephantine, and so painful I

required Vicodin just to walk, by the time I left. As I've

mentioned, I was deeply worried about thrombosis on the way home.

However, when I finally got home and off my feet, the swelling went

down in about three days. It's stayed down ever since -- but then,

I've kept them pretty much entirely above butt level since then, too.

I plan to start challenging it by walking some this week, and seeing

what happens with that.

This also isn't the first time I've seen swelling with walking and

travel: I had the same thing happen, to a much less dramatic degree,

during a trip we took last spring. It concerned me then, too. The

fact that it happened a second time, and much more impressively, on

this trip only increased my concern that something long-term and

unpleasant might be going on here.

I will be off the Recup entirely until our further investigations are

complete. The reason for this is a no-brainer: whenever I go to a

doctor for this kind of testing, I try to stop all drugs and

supplements to whatever degree possible, because I want them to

assess me in my non-chemically-propped-up state. I suspect that I'd

probably continue to do well with a pack a day of it at some point in

the future -- there was stuff in it my body clearly liked -- but two

packs was too much. In any event, we're not there now.

Rich's description of the three types of heart failure (below) is

extremely useful, and provides a perspective that will make it easier

to discuss this with the doctor. It's especially good to know the

history of this being a new thing, understood mainly by young

cardiologists. I'll mention that to my family doc. And I should

remind folks that I've been sick with this for 22 years now, and am

in the prime of my middle age, which does affect the choices that get

made.

A couple questions, based on people's suggestions:

-- What are the tests that they use for kidney function? (It's

possible I had some of these in the big sheaf of lab results I got

back yesterday. If so, there's no point in asking for them again.)

-- Jill, what's a C-Reactive Protein test, and why is a good thing to

have? (If I'm going to ask my docs for these tests, it's good to have

an explanation for why I want them.)

The good news is that I'm feeling better today than I've felt in

about three weeks. After the ER ordeal yesterday, my best friend

called. She's been missing me. So she came over and kidnapped me, fed

me sushi for dinner, took me back to her place, and popped me in her

hot tub while our husbands went out to karate class together. Her

husband had just replaced the tub's chlorine sanitizer with a salt-

based one, which apparently ionizes sodium chloride to release the

chloride into the water. It kills the bugs, then evaporates, leaving

no chlorine smell or fumes in the tub. It was really wonderful.

I think that good, long, salty, non-chlorinated hot soak did much to

put me right. (Not the long-term heart stuff, of course -- just the

exhaustion I've felt the last three weeks.) I went home and slept 10

straight, hard hours, and am much brighter and bushy-tailed today. So

it probably was mainly trip exhaustion, which I'm passing through.

But that foot-swelling thing is recurring, and not going away. And,

on general principles, it's past time for me to get some straight

answers about the condition of my heart in regards to my CFS. If this

is going to be an issue going forward, I want to know about it NOW,

instead of two years from now when I go into the hospital at 50 and

have to spend seven months there recovering from CHF (my youngest

aunt did this); or, worse, ten years from now, at 57, when they tell

me it's too far gone and I need a transplant (my oldest aunt did that).

If I'm sick, I'm not very sick -- yet. And I want to avoid getting

sick for as long as I can.

Thanks again to everybody for their concern and insights. They are

appreciated.

And keep those test suggestions coming!

Sara

On Jul 18, 2006, at 9:22 AM, rvankonynen wrote:

> Hi, Kurt.

>

> I've just reviewed the discussion of the cardiomyopathies in the

> latest editions of the Cecil Textbook of Medicine, on's

> Principles of Internal Medicine, and the Merck Manual.

>

> All three report that there are three categories of cardiomyopathy:

> dilated, hypertrophic and restrictive. Restrictive cardiomyopathy

> involves diastolic dysfunction. The chest X ray cannot detect most

> restrictive cardiomyopathies. Blood tests will not, either. The EKG

> may show low voltage or some non-specific changes in restrictive

> cardiomyopathy, but it is not diagnostic. It really takes

> echocardiography with one of the newer machines in the hands of a

> trained person to detect restrictive cardiomypothathies reliably. And

> of course, impedance cardiography can detect low cardiac output, which

> should alert the physician that something is amiss in the heart. My

> understanding from what she reported is that Sara did not receive

> either of these tests. Therefore, I don't think the doctor would have

> detected a restrictive cardiomyopathy, which is the type that Dr.

> Cheney has reported finding in most of his long-term CFS patients.

>

> Increasing blood volume using sodium chloride and water will increase

> venous return and right atrial pressure. This can be helpful in

> compensating for diastolic dysfunction by increasing the filling of

> the left ventricle and increasing cardiac output. However, I have

> encountered two cases so far in people with long-term CFS who

> benefited at first from increasing their blood volume, but at a

> certain point, all of a sudden they seem to have gone into

> decompensated heart failure. They both report it as being a very

> unpleasant experience. Fortunately in both cases the sympathetic

> nervous system kicked in and saved their lives by raising the

> heartrate and the intensity of the heartbeat, which lifted the blood

> pressure and caused the kidneys to dump more water into the urine.

> This lowered the blood volume, the venous return, and the right atrial

> pressure, and moved the operating point of the heart back into the

> compensated heart failure regime. If you want to see a detailed

> description of this, you can find it in Chapter 22 of the latest

> edition of Guyton's and Hall's textbook Medical Physiology.

>

> Now, I will grant you that both these women were putting in salt and

> water intravenously and not orally, as you are advocating.

> Nevertheless, since you are discussing pounds of weight gain, I think

> you are putting in considerable amounts of water. Perhaps the rate is

> slower and the circulatory system is able to compensate if the blood

> volume rises at a slower rate. I'm not sure. But I really think it's

> important to be careful about this, and to always keep in mind that

> it's really not valid to extrapolate from one or a few cases of CFS to

> everyone's case. This is a very heterogeneous population, and some

> people have been ill for many years and are older than others. Their

> hearts and circulatory systems may not respond in the same way as do

> those of younger PWCs or those who have been ill for a shorter time.

>

> I just want to urge caution.

>

> Rich

>

>

>

> But

>> in this case she already had a test for cardiomyopathy and was fine.

>> She already has DATA about this.

>

>> --Kurt

>

>

>

>

>

>

>

[Guest guest]

Hi, Sara.

I'm glad to hear that you guys are on top of this and pursuing it.

I would just like to note that when a person takes a long, hot soak in

a hot tub, their body, in its effort to keep its core temperature down

at the current setpoint of the hypothalamus, will normally excrete a

great deal of sweat, which goes unnoticed because it mixes with the

hot tub water. Nevertheless, unless the person makes a herculean

effort to hydrate by drinking a lot of fluid, the net effect is

dehydration and a consequent lowering of total blood volume.

The fact that this experience was salutary to you suggests to me that

lowering your blood volume was beneficial. In view of that, I am even

less enthusiastic about measures that would raise your blood volume at

this point in your journey, such as ingestion of larger amounts of

salt.

Rich

> I think that good, long, salty, non-chlorinated hot soak did much

to

> put me right. (Not the long-term heart stuff, of course -- just the

> exhaustion I've felt the last three weeks.) I went home and slept

10

> straight, hard hours, and am much brighter and bushy-tailed today.

[Guest guest]

On Jul 18, 2006, at 11:33 AM, rvankonynen wrote:

> I would just like to note that when a person takes a long, hot soak in

> a hot tub, their body, in its effort to keep its core temperature down

> at the current setpoint of the hypothalamus, will normally excrete a

> great deal of sweat, which goes unnoticed because it mixes with the

> hot tub water. Nevertheless, unless the person makes a herculean

> effort to hydrate by drinking a lot of fluid, the net effect is

> dehydration and a consequent lowering of total blood volume.

>

> The fact that this experience was salutary to you suggests to me that

> lowering your blood volume was beneficial. In view of that, I am even

> less enthusiastic about measures that would raise your blood volume at

> this point in your journey, such as ingestion of larger amounts of

> salt.

You're right: I'm usually (quite normally) dehydrated after a long

soak like that, and will head straight for the sink for a couple

large glasses of water to replace what was lost.

Some PWCs have a hard time sweating. I'm probably not one of them. My

experience with saunas is that, while I'm not quite as sweaty as some

people, I can produce pretty well once I get going -- and drink quite

a bit when I'm done.

But last night, I wasn't at all thirsty -- not during, not after. All

I had to drink all evening was one bottle of organic root beer, and

another glass of water with my pills at bedtime. And I wasn't even

really thirsty for either. Nor am I thirsty this morning.

That's definitely odd, and readily explainable by your thesis.

Good observation. Thanks.

One question, though: does this suggest that my blood volume is high

enough that a restrictive cardiac situation can be ruled out?

Sara

[Guest guest]

Hi, Sara.

In my opinion, the restrictive cardiomyopathy (diastolic dysfunction)

and the low blood volume that are present in many cases of CFS are two

independent issues.

I believe that they stem from the same general cause, i.e. low

systemic glutathione, but I think the diastolic dysfunction occurs

because of low glutathione specifically in the heart muscle cells,

while diabetes insipidus stems from low glutathione specifically in

the hypothalamus.

Glutathione is compartmentalized in the body, and each organ does its

best to control its own, but they have to get their raw materials from

a common source. Some are better able to do so than others when the

supplies of raw materials go down, either because they are closer to

the source, such as the gut and the liver, which have first crack at

what's coming in with the diet, or because their gene expression of

the rate limiting enzyme for making glutathione (glutamate cysteine

ligase) is higher, as in the heart; i.e. they have a bigger factory.

So the point is that the heart and the hypothalamus independently try

to regulate their glutathione supplies, and one may go below a

critical level before the other does. Also, which one goes down first

may not be the same in everyone, because of biochemical

individuality.

If the heart were still fine and the hypothalamus had gone down, then

the person would have low blood volume but a heart perfectly capable

of putting out enough blood, if it just received more coming back. I

recently studied a case like this, and I could tell that's what was

going on from the impedance cardiography and the symptoms. The

person's heart could put out huge output when they were lying down,

but it dropped off on sitting and standing. The thoracic fluid

volume, also evaluated by this machine, was low, which I think means

the total blood volume is low. This person also has significant

diabetes insipidus and orthostatic tachycardia, so it all fits

together.

This person would benefit from more salt and water, or temporarily

from I.V. solutions. (Or maybe from taking the drug desmopressin or

DDAVP, though it's kind of tricky to control the blood sodium level on

this drug.) On the other hand, if diastolic dysfunction has set in in

the heart, it's a little trickier. If the blood volume is also low,

some extra blood volume would help, but I think there is a point at

which the heart sort of " chokes " if the right atrial pressure is

raised too much by continuing to raise the blood volume. That's the

thing one wants to avoid. I think I've studied two cases like this so

far. Pretty exciting event: things starting to shut down, najor

adrenlaline surge, panic, fast heartrate, heart pounding, after awhile

a lot of peeing, things get back the way they were. Neither was

volunteering to do it again!

The books say there's no effective treatment for diastolic

dysfunction, and Dr. Cheney said the same in his talk over a year

ago. I think that just means they haven't really figured out what

causes it. I think it's caused by low glutathione in the heart, in

CFS. I think the systemic glutathione is being held down by a vicious

circle mechanism involving the genetics of the earlier sulfur

metabolism. Do I sound like a stuck record? I would really like to

see a PWC who has a clearly demonstrated case of diastolic dysfunction

get better by compensating for their genetic variations, a la the

autism treatments, both for that person's sake, and for the benefit of

everyone else who has this problem.

Of course, there's always the possibility that I'm dead wrong about

this, but I don't think so, based on putting all the pieces together.

Rich

>

> One question, though: does this suggest that my blood volume is

high

> enough that a restrictive cardiac situation can be ruled out?

>

> Sara

>

[Guest guest]

Good for you, Sara.

C-reactive protein is a marker of inflammation. It can be elevated in

heart disease.

Try to get an echocardiogram, and if you can get a stress echo that's

the best. They're fascinating anyway. The doc can show you pictures of

your heart beating on the echo afterwards. Even if you just walk on

the treadmill this would be important. You want to try to create a

situation somewhat similar to the situation in which your feet swelled

so much.

I don't know much about the other tests that Rich mentioned but they

sound very useful.

> >

> > But

> >> in this case she already had a test for cardiomyopathy and was fine.

> >> She already has DATA about this.

> >

> >> --Kurt

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Sara

For what it's worth, I experience this from time to time and can commiserate.

THe first time I was in Lahore and its netherlands with no access to medical

care..... three weeks of agony. I thought it might have been the

travel+altitude but I did not experience a recurrence in the Andes.

The second time was in 2000 in June and my doc said venous insufficiency.

Horse chestnut and Butcher's broom turned the situation around in a short time.

Off and on these past four months, including today.

I am drinking a whole lot of water, doing my herbs abd more Mg/taurine.

Hope your route to diagnosis and treatment is now direct and successful.

mjh

" The Basil Book "

_http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/)

A clarification of symptoms: My foot swelling came up gradually over

the course of my sojourn in Greece; it increased daily for over a

week, until my feet were almost elephantine, and so painful I

required Vicodin just to walk, by the time I left. As I've

mentioned, I was deeply worried about thrombosis on the way home.

[Guest guest]

P.S. Sara, don't tell them about ME.

Tell them:

You are a couch potato raising your kids, and cardiomyopathy RUNS IN

YOUR FAMILY.

You have noticed that last time when you travelled, and much worse

this time, the walking around in a foreign city caused your feet and

ankles to swell to elephantine proportions, and you were this time

bedbound for two weeks with a bad headache.

That you want an echocardiogram and any other tests to determine that

your heart is okay. Mention the stuff Rich talked about, diastolic

dysfunction etc.

The family history and the 'sudden onset' after walking a lot on

vacation should be enough to scare them into doing the right thing.

When using doctors for this kind of diagnostic purpose, there is no

need to 'entertain' or 'alienate' them with the rest of a true story

(i.e. CFS etc)

> > >

> > > But

> > >> in this case she already had a test for cardiomyopathy and was

fine.

> > >> She already has DATA about this.

> > >

> > >> --Kurt

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Rich,

Have you studied the process of Edema? As I understand this process,

the systolic function pushes the plasma which spills from capillaries

and into the interstitial areas, creating the lymphatic fluid. Then the

fluid circulates through the lymphatic system by various mechanisms

(physical movement, breathing, walking, etc.). The fluid is then either

lost through sweat, tears and mucus secretions, or recycled back into

the bloodstream through the pulling, diastolic function. With this

scenario there are multiple possible explanations for an edema

situation, and not all involve a heart dysfunction. Edema will happen

whenever the uptake of excess fluids is slow. When I googled I found

dozens of possible causes of edema, including lymphatic blockage (from

parasite die-off), heart valve issues, kidney, liver, migrane, vitamin

deficiencies, and many, many more. This is not always from a weak heart

muscle (which is the traditional concern that Sara's doctors quickly

ruled out). Also I imagine that some genetic bio-individuality in the

makeup of the lymphatic ducts may also be involved. And perhaps even

injury or infection in the lymphatic system could be involved.

In Sara's case, with high diastolic and low systolic BP (a.k.a. Isolated

Systolic Hypertension), and given some salt consumption (the recup) and

travel stress from extensive walking, and also given her rapid recovery,

I believe the role of cardiomyopathy was probably minimal, maybe there

was some diastolic dysfunction, but probably that was only a minor

contributing factor, if it were the major factor she would be having

edema all the time. She put a lot of stress on her system, between

travel, and loading the BV using the salt. And all that walking caused

a lot of lymphatic circulation. Also, if the extra salt was taken on an

empty stomach it probably got into the lymphatic system and could have

caused some die-off and debris blocking, or inflammation slowing the

uptake of excess lymphatic fluids. Many people on salt/c experience

this, and have heart pains and edema and some have gone to the doctor

the first time this happens not knowing what is going on, but when they

have tests run they are fine. Anyway, I just want to point out that

there are many possible explanations. If it was a primary

cardiomyopathy event, she would not likely have rebounded so rapidly.

BTW, I agree with you and would like to see if the management of our

genetic problems leads to significant improvement. If I had the money I

would be glad to test that. But being disabled with no job, no

insurance, and no disability payments even after decades of paying into

the system makes that rather difficult. So, I would have to be part of

a funded study (and could volunteer my entire family for that as we have

other cases of CFS). I think it is VERY important to help people with

CFS in a realistic way. We do not live in an egalitarian society. To

the contrary, our healthcare and economic and political systems punish

those with marginalized diseases like 'CFS'. And people like me can not

afford most of the treatments discussed on this list. So we need to

find help that is affordable. This is why I am quite serious about

salt/c and believe it is just as important to learn about this as about

other therapies for CFS. Because it is one of the most affordable

therapy options. And I seriously doubt that taking an amount of salt

that is less than an average person consumes in a day with ordinary

foods is causing heart or kidney disorders. The symptoms she

experienced are consistent with what many others are finding with

salt/c, and she was on Recup/C which is about the same thing, and also

she was active and circulating lymphatic fluids. Are there still heart

issues? Perhaps, but my point is that there are other explanations for

this situation, and I don't want to see a good therapy given a black eye

when there are many possible explanations for what happened. And

personally, I don't think going off salt is necessary or even desirable

in this case. Cheney knows about DHF and recommends a LOT of salt for

his patients, for example.

Just one man's opinion.

--Kurt

Re: And the Kitchen Sink....

Hi, Sara.

In my opinion, the restrictive cardiomyopathy (diastolic dysfunction)

and the low blood volume that are present in many cases of CFS are two

independent issues.

I believe that they stem from the same general cause, i.e. low

systemic glutathione, but I think the diastolic dysfunction occurs

because of low glutathione specifically in the heart muscle cells,

while diabetes insipidus stems from low glutathione specifically in

the hypothalamus.

Glutathione is compartmentalized in the body, and each organ does its

best to control its own, but they have to get their raw materials from

a common source. Some are better able to do so than others when the

supplies of raw materials go down, either because they are closer to

the source, such as the gut and the liver, which have first crack at

what's coming in with the diet, or because their gene expression of

the rate limiting enzyme for making glutathione (glutamate cysteine

ligase) is higher, as in the heart; i.e. they have a bigger factory.

So the point is that the heart and the hypothalamus independently try

to regulate their glutathione supplies, and one may go below a

critical level before the other does. Also, which one goes down first

may not be the same in everyone, because of biochemical

individuality.

If the heart were still fine and the hypothalamus had gone down, then

the person would have low blood volume but a heart perfectly capable

of putting out enough blood, if it just received more coming back. I

recently studied a case like this, and I could tell that's what was

going on from the impedance cardiography and the symptoms. The

person's heart could put out huge output when they were lying down,

but it dropped off on sitting and standing. The thoracic fluid

volume, also evaluated by this machine, was low, which I think means

the total blood volume is low. This person also has significant

diabetes insipidus and orthostatic tachycardia, so it all fits

together.

This person would benefit from more salt and water, or temporarily

from I.V. solutions. (Or maybe from taking the drug desmopressin or

DDAVP, though it's kind of tricky to control the blood sodium level on

this drug.) On the other hand, if diastolic dysfunction has set in in

the heart, it's a little trickier. If the blood volume is also low,

some extra blood volume would help, but I think there is a point at

which the heart sort of " chokes " if the right atrial pressure is

raised too much by continuing to raise the blood volume. That's the

thing one wants to avoid. I think I've studied two cases like this so

far. Pretty exciting event: things starting to shut down, najor

adrenlaline surge, panic, fast heartrate, heart pounding, after awhile

a lot of peeing, things get back the way they were. Neither was

volunteering to do it again!

The books say there's no effective treatment for diastolic

dysfunction, and Dr. Cheney said the same in his talk over a year

ago. I think that just means they haven't really figured out what

causes it. I think it's caused by low glutathione in the heart, in

CFS. I think the systemic glutathione is being held down by a vicious

circle mechanism involving the genetics of the earlier sulfur

metabolism. Do I sound like a stuck record? I would really like to

see a PWC who has a clearly demonstrated case of diastolic dysfunction

get better by compensating for their genetic variations, a la the

autism treatments, both for that person's sake, and for the benefit of

everyone else who has this problem.

Of course, there's always the possibility that I'm dead wrong about

this, but I don't think so, based on putting all the pieces together.

Rich

>

> One question, though: does this suggest that my blood volume is

high

> enough that a restrictive cardiac situation can be ruled out?

>

> Sara

>