PS Re: Guillain-Barre Syndrome

[Guest guest]

they should have a neurologist, immunologist, cardiologist

and pulmonary-Respir doctors attending.

Immunologist was very helpful - he felt it was the combo

of stress, EB or CMV and the vaccines (esp polio) hubby recd

prior to his trip that caused his immune system to fail.

But he failed to explain the 'consequences' to our son

which I kept seeing in GBS research ....

Neurologist kept poking steve with conduction needles

to see how high he would jump ....

this is a **very** uncomfortable test.

Steve's heart went off rhythm (think: muscles not talking

to nerves ...) . So a heart monitor was inserted and they

almost had to 'jump' his heart to get it back on rhythm.

Many GBSers need a vent to breathe. Steve didn't.

He was also a martial artist prior to GBS and theybelieved

the breathing chi exercises he did strengthened

his diaphram.

Steve had Reiki performed on him 2x a week after his

3-month vacation in the hospital.

If the patient is unable to communicate verbally,

an alternative comm system may need to be used.

Eye blinking or pointing.

One GBSer, a former 'dit' operator, blinked his eyes

in morse code

doris

-maryland

>

> Doris,

>

> I remember that you said your husband had suffered from Guillain-Barre

> Syndrome. A dear, dear friend of my family's has been diagnosed

with it and

> she is slipping away very quickly. I hate to take up your time, but

wanted

> to ask you if you have any advice, recommendations of great doctors, new

> drugs in the pipeline, clinical studies or anything else you might

think of

> that we could pass along to her.

>

> I'd be glad to take your response privately.

>

> Caroline Glover

>