Re: Dawn & Recup tasting Nasty

[Guest guest]

Dawn: I have been on Recuperation since Jan 13, 2005. I first used the

sugar-free orange but changed to the saline because I wanted to avoid the

artificial sugar and coloring, even though I don't think it affected me that

much. I hated the taste of the saline at first; I learned which juices to add

to it that I liked. Many people add lemon juice and a form of sweetener

(glucose, maple syrup, honey) that they can tolerate and it seems to make them

feel better. I personally like lemon or lime juice with maple syrup when I

can't get a passion/apple juice from Costco that I like. I've tried cherry,

pomegranate, orange, grape juices but like the orange or lemonade type juices

best. After awhile you get used to the taste of the salt and it isn't so bad,

especially mixed with juices you like that help hide the salt taste. It sure is

a product that's helped my energy levels and post-exertional malaise, so I'm

sticking with it. I was on two sachets a day for most of the first year, now do

one per day and seem fine.

in La Selva Beach CA

Re: ? for Rich, other doc's and others

Hi, Dawn V.

I'm so glad you didn't get in a wreck!

There's a lot going on with the heart in CFS. First, many PWCs are

low in magnesium. The two most important minerals affecting the

maintenance of a normal heart beat are magnesium and potassium. So

if you aren't supplementing magnesium and are not getting enough

potassium in your diet (like an apple a day), I would suggest that

you do those things. As long as your kidneys are working O.K. and

you drink enough water, there's no problem in overdosing on

magnesium. You will get diarrhea if you take more than your gut can

absorb, but that's the only problem. So I would suggest lots of

magnesium.

The second thing is that the total blood volume is low in many PWCs,

because they have usually a mild (but sometimes not mild) case of

diabetes insipidus. That's not the same as the usual diabetes

mellitus, which involves blood sugar and insulin. Diabetes

insipidus means that you urinate too much water and are thirsty all

the time and are always somewhat dehydrated (i.e. you have too low

an amount of water in your blood and thus too low a total blood

volume), because your hypothalamus/pituitary does not put out enough

of antidiuretic hormone (also called arginine vasopressin).

The third thing is that there seems to be a problem with control of

the dilation of the veins in the lower part of the body in CFS. Too

much blood tends to pool in the legs, so that the problem of low

total blood volume is just compounded by too much blood staying in

the veins of the legs. The result is that the venous return (i.e.

the amount of blood returning to the heart) is decreased. The heart

can only pump out as much blood as it receives, so a low venous

return means a low cardiac output. When the cardiac output goes too

low, the blood pressure goes down, and it's difficult for the brain

to get enough blood. That's what causes the blacking out.

The fourth thing is what Dr. Cheney is talking about--diastolic

dysfunction. This means that the heart muscle doesn't relax fast

enough to bring in enough blood to be pumped out on the next

stroke. This also leads to low cardiac output.

When you put all these factors together, it's not hard to believe

that the heart might have some problems, and that the brain might

run a little short of blood flow!

What can be done? Well, first the magnesium and potassium. Second,

eat more salt and drink more water. The salt will help you retain

more water in your blood. Some people get those Jobst compression

stockings to keep blood from pooling in their legs. Some people

take a drug called Florinef to help them retain water, but I don't

know how well it works. Some people get synthetic vasopressin as a

pill or a nose spray, but that can be a little tricky getting the

right dosage, because it can affect the sodium level in the blood.

I think that the most fundamental thing is to work on the diastolic

dysfunction. In my opinion, it is a consequence of glutathione

depletion, but that isn't proven. To get the glutathione up, I

think most PWCs will have to deal with the blocks in sulfur

metabolism higher up, such as in the methylation cycle. See the

message I posted about Sue 's case.

I hope this helps, and I hope you will be very careful about driving!

Rich

>

>

> Hi all. Yesterday, I had a cardiac " event " that I need some

advice as to what to do about it and see if anyone has had this

happen to them.

> First of all, with CFIDS/ME I have orthostatic hypotension, so my

blood pressure is normally low (high 80's to low 90's) and is

particularly troublesome during my menstral cycle when, I am sure,

drops even lower because I can feel it (this was the case yesterday).

> My family and I were travelling to Chicago from Ohio for a funeral

and I was driving (after sitting for 1 1/2 hours) when I suddenly

had a severe heart palpitation ( I have had these over the years,

but never severe) and as I was having it, I was starting to black

out and see stars and it was getting worse and worse as the seconds

went on. I was able to pull of the highway and bent my head over

and the palpitations subsided and my heart rate was back to normal

(it just felt like it was flip-flopping), but it never beat fast. I

was not anxious, even though it was stressful just getting ready for

the trip when I wasn't feeling all that great, so I know it wasn't

like a panic attack, even afterwards, I wasn't scared. I was just

trying to figure out if I needed to go to the ER or what. We made

the decision to return home so that I could rest and not push myself

by making the rest of the trip and going through all the activities

of the next day and then doing the trip back. I haven't had any

espisode since, just very wiped out.

> I just wanted to hear from any of you who might tell me what you

would suggest I do, or share your experiences with anything like

this. I was thinking about Dr. Cheney and his cardiomyopathy ideas

and wondering if this has anything to do with the ventricle

abnormalities.

> I would appreciate any feedback. Thank you all!

>

>

> Dawn V in Ohio

> dmv3@...

>

>

[Guest guest]

Dawn,

I have been drinking Recuperation for five months now. I drink the

plain variety in water and now drink it before breakfast instead of

coffee, but I am weird.

I am doing great on Recup. I think the main sense I am getting of

what is working in Recup is that it has ended my NMH. I can stand in

line at the grocery store and actually have a good time! I get so

happy just being able to stand up I enjoy the line. Something has to

be working.

I ran out for two weeks, because I forgot to reorder. During that

time I went downhill. I don't know if Recup is the cure, but it sure

does seem to relieve the neurally mediated hypotension. (BTW I am a

classic case of cfs/Lyme and passed out with no measurable blood

pressure on a tilt test, so I know what I am describing even if I

write as if NMH was funny. It is not. It is hellish and any relief is

a fabulous gift from God.)

a Carnes

> >

> >

> > Hi all. Yesterday, I had a cardiac " event " that I need some

> advice as to what to do about it and see if anyone has had this

> happen to them.

> > First of all, with CFIDS/ME I have orthostatic hypotension, so

my

> blood pressure is normally low (high 80's to low 90's) and is

> particularly troublesome during my menstral cycle when, I am

sure,

> drops even lower because I can feel it (this was the case

yesterday).

> > My family and I were travelling to Chicago from Ohio for a

funeral

> and I was driving (after sitting for 1 1/2 hours) when I suddenly

> had a severe heart palpitation ( I have had these over the years,

> but never severe) and as I was having it, I was starting to black

> out and see stars and it was getting worse and worse as the

seconds

> went on. I was able to pull of the highway and bent my head over

> and the palpitations subsided and my heart rate was back to

normal

> (it just felt like it was flip-flopping), but it never beat

fast. I

> was not anxious, even though it was stressful just getting ready

for

> the trip when I wasn't feeling all that great, so I know it

wasn't

> like a panic attack, even afterwards, I wasn't scared. I was

just

> trying to figure out if I needed to go to the ER or what. We

made

> the decision to return home so that I could rest and not push

myself

> by making the rest of the trip and going through all the

activities

> of the next day and then doing the trip back. I haven't had any

> espisode since, just very wiped out.

> > I just wanted to hear from any of you who might tell me what

you

> would suggest I do, or share your experiences with anything like

> this. I was thinking about Dr. Cheney and his cardiomyopathy

ideas

> and wondering if this has anything to do with the ventricle

> abnormalities.

> > I would appreciate any feedback. Thank you all!

> >

> >

> > Dawn V in Ohio

> > dmv3@

> >

> >