Heart. was Re: The International CFS/ME Society Names Top Doctors

[Guest guest]

Even tho these latter two potential causes are valid

to discuss, they both have the problem of healthy controls (like

spouses, children, mothers) being exposed to the same EMF or mold,

and in 98% of the cases the controls are fine.

*** So obvious I missed it. But the same holds true for pathogens too, doesn't

it? Our disease is " cunning, baffling and powerful. "

Adrienne

[Guest guest]

Kat, this was a truly thoughtful and useful post. Thank you very much

for it.

Comments and questions below....

> At the same time, speaking of stress, this time has been

> *extremely* high and pretty relentless. Cross-country trip, 2

> falls, with injuries, severe $$ deficit (on survival, bills, food,

> etc.) , LD care-giving for elderly Mom, in prolonged health crisis,

> me, 2 months Pneumonia, violence in my neighborhood, multiple

> deaths of friends. And...ME/CFS list advocacy shockeroos...

Life goes on, even when we don't.

> So, while I've been doing these treatments, I have not paced or

> slept very well/regulary, or eaten the best, and have still done my

> synthetic energy/mood boosting to cope.

I'm fortunate in that a) I do sleep well and I hardly ever do any

kind of synthetic energy boosting (a great term for those harmful

things we do because we have to). Maybe a cup of leaded coffee once a

month or so -- that's it. And my husband, alarmed at the ways I was

failing to feed myself during the last month of school (April),

finally just took over kitchen duty for the family, so I'm now eating

much better than I did.

> I was prescribed Diamox? (Acetazolamide 100mgs)

> . I cannot take it for long, but 1/2 once or twice relieves chest

> congestion/pain.

I'll ask my doctor about this tomorrow. The congestion doesn't flare

up often -- once every 1-2 weeks -- but it would be nice to have

something to calm it besides aspirin.

> THis reminds me that he says that CFS sx/being horizontal are

> protecting us from Heart Failure/Event Horizen.

> {BTW, I don't know if he says this is a genetic response, or just

> " is " }

I've read Cheneys' stuff on this. It's pretty surprising.

> I was a little worried about you, with all you are taking, and

> achieving, in that you, too (in maybe other ways) might be pushing

> too hard. Maybe it is a good thing that you are on the couch right

> now...maybe, like me, you have to be stopped, to protect the heart.

That's what my darling husband (DH) keeps telling me. I've had a big

spring, capped off with the trip. So I'm past due for a good, long

crash. And he also points out that my crashes these days aren't

remotely like they once were. I don't pass out; rather, I sit on the

couch and write and talk to people and stay engaged.

>

> In case you do have cardiac issue, I'll tell you what Dr. Cheney

> said, and what I find is the best thing. #1 is Magnesium...in all

> forms. I inject it daily, I take it orally ( Magnesium

> Glycinate forte), I rub it on with Kirkman's MG. cream.

Mg is one of the best things I've found off this list so far. I'm

taking about 1200 mg with B6 every morning. It really helps all my

muscles, but I've definitely noticed heart effects.

> Hawthorne directly targets the heart. I benefitted even from cheap

> Chinese herbs, but now take MediHerb Hawthorn. Also, I take garlic.

I've been on Kyolic forever, and am not sure I know how to cook

anything that doesn't include garlic. <g> But I guess it's time at

last to try the hawthorne.

>

> Since I tested high for Fibrin, I take Boluoke.

Will have to Google this. I also test high for fibrin; FFC put me on

Mirac, which is an anti-fibrin supplement they use for Lupus patients.

> I take Coq10 and Idebenone. He said to make sure I take an I for

> each Q.

Interesting. I just doubled my CoQ10 intake based on stuff I read on

this list. I'll google Idebenone -- am assuming it's OTC.

> Next...CRUCIAL for me...Feet Up or moving. NO standing still! OR

> sitting without feet up. I can do it a bit now, but have to avoid

> much of that.

> Feet up can raise Cardiac output ( " Q " ) by one litre per minute.

> Feet moving, like pacing, 2 Litres per minute.

Funny thing: This is how I've spent most of the past 15 years. I

noticed ages ago that I *cannot* stand, although I can walk for miles

at a slow pace. And when I sit, it's always with feet up -- on the

couch, on the bed, at the dining room table (I use the chair on the

opposite side). I'm even going to start doing it at church (I sit in

the front pew with a chair in front of me).

But the very fact that I have to do this is a big fat yellow light

that something is wrong, and I need to get it checked out.

> Weil breathing exercise...I am so neglectful, but it really helps.

> Just making sure to deep breathe helps.

Will Google this, too. I try to do about 20 minutes of yoga three

times a week or so. It's my favorite and most tolerable exercise, in

no small part because I can do it without standing up (I avoid those

postures). That's also good deep breathing, to the point where it's

actually aerobic.

> About lying down...if you actually feel worse then, you may benefit

> from raising your head/pillow some. So, recline, or semi-recline.

> Stretch or rotate ankles if you can.

Sitting up supported or semi-reclining is my most comfortable

position. I don't like to sit without good back support. If I'm in my

room, I'll pile up pillows in the middle of the bed, and drape myself

over them sideways, leaning on my left side. This is extremely

comfortable for amazingly long periods of time.

I stretch and rotate my ankles constantly -- a holdover from all

those years of dancing as a kid. The thing that's gotten me worried

enough to go bug my doctor again about this is that while I was in

Greece, my ankles just swelled up to double size and stayed there. By

the time I got home, they looked like big fat burritos with teeny

toes attached. It took about three days with my feet up for the

swelling to go down. This cannot be good.

> After *finally* healing enough from falls, I can now walk a little

> most days...even if just 5-15 minutes...by beach or around house,

> or outdoor mall...HEAVENLY, and really helpful. Not over done, like

> I used to when better.

Congratulations on healing. I had a bad fall a year and a half ago,

and am dismayed at how much it's messed up my body mechanics,

probably permanently. We've lost enough without incurring losses like

this, too.

>

> My adrenaline rushes/chest pain from the high stress moments got so

> frightening, I began Cortef. A miniscule amount...1/4, only on some

> days. AS with other things that help me, I have to stay miniscule/

> intermittent to maintain benefit w/little side effect.

FFC had me try Cortef. I tried it in that tiny one-quarter amount you

mention -- and couldn't even clear THAT. I just don't have the

enzymes to handle cortisone or cortisol in any form. Which is too

bad, because I felt amazingly good on it for the first day or so.

It's clearly something that my body needs, and I wish I could take it.

> I hope this might be helpful, and I hope you feel better.

It is, and I will. I think part of my current exhaustion is that I'm

also starting on salt/C. At this point, it's mainly ramping up my

Recup to 2-3/day, and adding the C with them; next week, I'll start

adding actual salt as well. There's something about this that is

really wiping me out. I guess I'm herxing? On the other hand, the

extra salts are supposed to help support blood volume, and I have to

say my heart muscle itself does feel better.

>

> I agree with you and Mike...I wish we would focus more on Heart

> (and other specific findings) from point of view of CFS

> Specialists, Researchers, Studies. What's in all of those thousand

> papers we could use, for instance?

Like I said: we die of this more frequently than any other thing,

except by our own hands. That would seem to make it a topic of interest.

Thanks again for your suggestions. It's still really easy for me to

dismiss what's going on with me -- little shards of denial still crop

up, and it's not helped when I bring my concerns to my doctors and

kept getting shaken off.

This post helps validate that there's something serious going on that

I need to keep pursuing. I'll look into this stuff.

[Guest guest]

On Jul 16, 2006, at 6:38 PM, jill1313 wrote:

> I hope you're okay. Plane travel--and the resulting hypoxia--can

> sometimes be problematic in these conditions. If you travel again,

> consider having your doctor Rx oxygen, which the airline will provide.

That's a good idea. The flight home -- 13 hours -- was agony. I was

really afraid about my feet, and the potential for deep vein

thrombosis. Took lots of aspirin, drank all the water I could, walked

when they'd let me (though my swollen feet also hurt with every step)

and prayed. There is, of course, nowhere to put one's feet up in

coach....

I'm pretty aware of hypoxia. I've been in small unpressurized planes

at 15K feet without air and hence had the real thing -- not an

experience you ever forget. This time, I was fortunate to be on an

airline that didn't knock us out with too little air. (I hate it when

they do that -- oooo, the headache.) In fact, we got plenty, and it

was fresh!

I'm also starting to think that I'm just past the point in my life

where I can fly coach any more, at least on long flights. I've never

ever paid the extra money for business class, but the consequences

are starting to be worth the extra $$$.

Sara

[Guest guest]

Sara,

Edema is sometimes reported by people starting Recup and Salt/C, and

many get worried about their hearts. Been there, done that. Often

this is a detox event as it goes away over time. Sometimes it also goes

away when a person switches the type of salt, so it can be sensitivity

to the type of salt. Since you are actually on Recup/C, it may be that

you are sensitive to the Recup. So if your heart is OK (which seems

likely), you could try regular salt/c.

I know you were under stress traveling, and perhaps that contributed

some heart stress. But since you got this when taking salt (Recup), I

would look at another possible explanation (one that the Cardiologist

will not look for), and that is sluggish lymphatic flow due to activity

of the salt. Edema from salt/c is believed to be caused by too-rapid

hydration, basically the plasma spills from the capillaries (creating

lymphatic fluids) faster than it can be eliminated back into the

bloodstream. In this scenario there is nothing wrong with the heart and

kidneys. The poor lymphatic elimination can be from overloaded glands

clogged by debris from the ABX effect of salt/c. I hope your edema

situation is this salt/c problem, as that is trivial and can be managed

by lowering the speed of ramp-up.

I have had this type of edema along with kidney pains, and was worried

and had a kidney test and all was fine.

Of course, the cardiologist could find some other problems, those

related to CFS (inverted or diminished T wave for example, and sometimes

other problems). But those would not be a cause of edema.

--Kurt

Re: Heart. was Re: The International CFS/ME

Society Names Top Doctors

Thanks for the validation of my concerns, Rich. It may not be

coincidental (now that you mention it) that I was sucking down Recup

at the rate of two a day while I was in Athens. It was 100 degrees

plus for a few days, and I was trying to stay hydrated. But that

might have been a mistake.

I've gone off Recup entirely as of yesterday, just to see if I do get

to feeling better, and so the doctor tomorrow will be able to see me

in a more natural (ahem) state. What I've got now is a massive

headache instead. I've been pretty much in bed for the entire almost

two weeks since I got back. I don't even like standing up in the

shower now.

My husband and I have spent today going through your past posts on

cardiac issues, following links on Cheney and Lerner and so forth,

printing stuff out and generally getting up to speed for the

appointment tomorrow. I'm taking him with me as an advocate this

time. Not only does he not have brain fog; it's absolutely proven

that when heart disease is under discussion, doctors hear a whole lot

better if the symptoms are described in a male voice (which is why

heart conditions in general are grossly undertreated in women). Evan

will be able to present this in a way will be unignorable, and won't

let go until he gets some movement.

And thank you again, from the bottom of my heart, for the IM GSH and

AMP sources. These were the last pieces of info I needed to most

accurately re-create my GSH injection cocktail. The IV GSH from

Wellness and the ATP just aren't doing the same things for me at all,

which may be part of why I've had a bad couple weeks. I've already

forwarded the contact info on both to my compounding pharmacy, so

they'll have it on hand for the next batch.

Sara

On Jul 16, 2006, at 5:55 PM, rvankonynen wrote:

> Hi, Sara.

>

>

>

> The thing that's gotten me worried

>> enough to go bug my doctor again about this is that while I was

> in

>> Greece, my ankles just swelled up to double size and stayed there.

> By

>> the time I got home, they looked like big fat burritos with teeny

>> toes attached. It took about three days with my feet up for the

>> swelling to go down. This cannot be good.

>

> ***Sara, this is definitely NOT GOOD. Combined with everything else

> you've reported, this says that your heart is not pumping out enough

> blood per minute. When that's the case, the kidneys do not get

> enough blood flowing through them, so they don't remove enough water

> from the blood and dump it into the urine. The extra fluid produces

> the swelling (edema).

>

> I think part of my current exhaustion is that I'm

>> also starting on salt/C. At this point, it's mainly ramping up my

>> Recup to 2-3/day, and adding the C with them; next week, I'll

> start

>> adding actual salt as well. There's something about this that is

>> really wiping me out. I guess I'm herxing? On the other hand, the

>> extra salts are supposed to help support blood volume, and I have

> to

>> say my heart muscle itself does feel better.

>

> ***I'm a little worried about this, Sara. This might not be the

> right direction to go for you right now. It really depends on

> whether your cardiac output is being limited by low venous return,

> in which case this approach would help, or whether it is being

> limited by the inability of the heart muscle to pump more blood

> (such as because of diastolic dysfunction or viral cardiomyopathy,

> or something else), in which case adding more fluid to your blood

> could put you into decompensated heart failure, which is VERY not

> good. I've encountered two cases in which I think this is what

> happened to the people. The fact that you have (or had) edema causes

> me to think that your heart's pumping ability might be the limiting

> factor right now. I think the cardiologists treat this with

> diuretics, which DECREASE the blood volume, and drugs like

> digitalis, which strengthen the heart stroke. I'm no expert, and I

> think you should see one. I am concerned about you.

>

> It's still really easy for me to

>> dismiss what's going on with me -- little shards of denial still

> crop

>> up, and it's not helped when I bring my concerns to my doctors

> and

>> kept getting shaken off.

>>

>> This post helps validate that there's something serious going on

> that

>> I need to keep pursuing. I'll look into this stuff.

>

> ***Good! That would be a very smart thing to do, in my opinion.

> Tell the doctor about the swelling. They know what that means.

>

> ***Rich

>>

>

>

>

>

>

>

>

> 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]

IMHO a far better solution is heparin (i.e. spray or under tongue) and

Piracetam every 4 hrs in the air.

Low air pressure triggers COAGULATION (Norwegian study on medline)...

the above combination was found to be better in combination than the

sum of each take in isolation according to a study on medline.

I always take it when I am on a flight is over 3 hrs. Interesting, I

don't get " jet lag " anymore... when that combination is taken.

>

> I hope you're okay. Plane travel--and the resulting hypoxia--can

> sometimes be problematic in these conditions. If you travel again,

> consider having your doctor Rx oxygen, which the airline will

provide.

>

>

[Guest guest]

Kurt, thanks for this alternative perspective. You know I've been

lying around for days wondering if these symptoms were a Good Thing,

or a Bad Thing. Now I've got reasonable explanations of how it could

be either way.

In any event, this episode is providing the excuse I've been needing

for ages for a seriously good ME-related cardio workup. If that finds

everything normal, then I'll consider that the all-clear to go back

to salt/c. And if it doesn't, I'll know I'm a bad candidate for it.

Either way, a little more knowledge will be a valuable thing here.

Very much appreciated,

Sara

On Jul 16, 2006, at 7:40 PM, Kurt R wrote:

> Sara,

>

> Edema is sometimes reported by people starting Recup and Salt/C, and

> many get worried about their hearts. Been there, done that. Often

> this is a detox event as it goes away over time. Sometimes it also

> goes

> away when a person switches the type of salt, so it can be sensitivity

> to the type of salt. Since you are actually on Recup/C, it may be

> that

> you are sensitive to the Recup. So if your heart is OK (which seems

> likely), you could try regular salt/c.

>

> I know you were under stress traveling, and perhaps that contributed

> some heart stress. But since you got this when taking salt (Recup), I

> would look at another possible explanation (one that the Cardiologist

> will not look for), and that is sluggish lymphatic flow due to

> activity

> of the salt. Edema from salt/c is believed to be caused by too-rapid

> hydration, basically the plasma spills from the capillaries (creating

> lymphatic fluids) faster than it can be eliminated back into the

> bloodstream. In this scenario there is nothing wrong with the

> heart and

> kidneys. The poor lymphatic elimination can be from overloaded glands

> clogged by debris from the ABX effect of salt/c. I hope your edema

> situation is this salt/c problem, as that is trivial and can be

> managed

> by lowering the speed of ramp-up.

>

> I have had this type of edema along with kidney pains, and was worried

> and had a kidney test and all was fine.

>

> Of course, the cardiologist could find some other problems, those

> related to CFS (inverted or diminished T wave for example, and

> sometimes

> other problems). But those would not be a cause of edema.

>

> --Kurt

>

> Re: Heart. was Re: The International

> CFS/ME

> Society Names Top Doctors

>

> Thanks for the validation of my concerns, Rich. It may not be

> coincidental (now that you mention it) that I was sucking down Recup

> at the rate of two a day while I was in Athens. It was 100 degrees

> plus for a few days, and I was trying to stay hydrated. But that

> might have been a mistake.

>

> I've gone off Recup entirely as of yesterday, just to see if I do get

> to feeling better, and so the doctor tomorrow will be able to see me

> in a more natural (ahem) state. What I've got now is a massive

> headache instead. I've been pretty much in bed for the entire almost

> two weeks since I got back. I don't even like standing up in the

> shower now.

>

> My husband and I have spent today going through your past posts on

> cardiac issues, following links on Cheney and Lerner and so forth,

> printing stuff out and generally getting up to speed for the

> appointment tomorrow. I'm taking him with me as an advocate this

> time. Not only does he not have brain fog; it's absolutely proven

> that when heart disease is under discussion, doctors hear a whole lot

> better if the symptoms are described in a male voice (which is why

> heart conditions in general are grossly undertreated in women). Evan

> will be able to present this in a way will be unignorable, and won't

> let go until he gets some movement.

>

> And thank you again, from the bottom of my heart, for the IM GSH and

> AMP sources. These were the last pieces of info I needed to most

> accurately re-create my GSH injection cocktail. The IV GSH from

> Wellness and the ATP just aren't doing the same things for me at all,

> which may be part of why I've had a bad couple weeks. I've already

> forwarded the contact info on both to my compounding pharmacy, so

> they'll have it on hand for the next batch.

>

> Sara

>

> On Jul 16, 2006, at 5:55 PM, rvankonynen wrote:

>

>> Hi, Sara.

>>

>>

>>

>> The thing that's gotten me worried

>>> enough to go bug my doctor again about this is that while I was

>> in

>>> Greece, my ankles just swelled up to double size and stayed there.

>> By

>>> the time I got home, they looked like big fat burritos with teeny

>>> toes attached. It took about three days with my feet up for the

>>> swelling to go down. This cannot be good.

>>

>> ***Sara, this is definitely NOT GOOD. Combined with everything else

>> you've reported, this says that your heart is not pumping out enough

>> blood per minute. When that's the case, the kidneys do not get

>> enough blood flowing through them, so they don't remove enough water

>> from the blood and dump it into the urine. The extra fluid produces

>> the swelling (edema).

>>

>> I think part of my current exhaustion is that I'm

>>> also starting on salt/C. At this point, it's mainly ramping up my

>>> Recup to 2-3/day, and adding the C with them; next week, I'll

>> start

>>> adding actual salt as well. There's something about this that is

>>> really wiping me out. I guess I'm herxing? On the other hand, the

>>> extra salts are supposed to help support blood volume, and I have

>> to

>>> say my heart muscle itself does feel better.

>>

>> ***I'm a little worried about this, Sara. This might not be the

>> right direction to go for you right now. It really depends on

>> whether your cardiac output is being limited by low venous return,

>> in which case this approach would help, or whether it is being

>> limited by the inability of the heart muscle to pump more blood

>> (such as because of diastolic dysfunction or viral cardiomyopathy,

>> or something else), in which case adding more fluid to your blood

>> could put you into decompensated heart failure, which is VERY not

>> good. I've encountered two cases in which I think this is what

>> happened to the people. The fact that you have (or had) edema causes

>> me to think that your heart's pumping ability might be the limiting

>> factor right now. I think the cardiologists treat this with

>> diuretics, which DECREASE the blood volume, and drugs like

>> digitalis, which strengthen the heart stroke. I'm no expert, and I

>> think you should see one. I am concerned about you.

>>

>> It's still really easy for me to

>>> dismiss what's going on with me -- little shards of denial still

>> crop

>>> up, and it's not helped when I bring my concerns to my doctors

>> and

>>> kept getting shaken off.

>>>

>>> This post helps validate that there's something serious going on

>> that

>>> I need to keep pursuing. I'll look into this stuff.

>>

>> ***Good! That would be a very smart thing to do, in my opinion.

>> Tell the doctor about the swelling. They know what that means.

>>

>> ***Rich

>>>

>>

>>

>>

>>

>>

>>

>>

>> 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.

>>