Re: completely back to normal

[Guest guest]

> Hi all,

>

> We just heard from a young woman who became ill with CFIDS in 1993.

We had

> written to her recently, to see what had become of her.

>

> She had dropped out of college for a year and was bedridden most of

that

> time. She had then returned to college, taken a few courses at a

time, and

> graduated in 1997.

>

> Then she went home for a year to rest. She wrote, " I also started

on a

> strict regimen of Neurontin--an anti-convulsant--that my doctor was

> experimenting with and felt that it aided in my recovery. One year

later, I

> felt well enough to move out and get a job... "

>

> She wrote, " My health has been back to normal (completely, if you

can

> believe it) for the past 3-1/2 years. "

>

> We'll try to find out more about her Neurontin treatment, her

doctor, etc.

> In any case, I find this encouraging.

>

> Best,

> Sue B.

> upstate New York

Hi Sue,

I know CFS patients who felt they were injured by high dose

Neurontin that was prescribed by Dr. Seastrunk. A malpractice case

was being talked about against him that appears have closed his Dana

Point-Ca office. He was prescribing upto 5000 mg of it, those below

2000mg may be safe as I know one patient being helped by it at 1600mg

a day. Many find they need more and more of it to have the same

benefit from it they had when they started.

Al

Al

Al

[Guest guest]

Sue,

You should consider the fact that recovery is not unusual in younger PWC's.

They have higher HGH and growth factor levels which allows their body to

repair the damage. Steve B.

>From: " rhbailey@... " <rhbailey@...>

>Reply-

>tal < >

>Subject: completely back to normal

>Date: Wed, 07 Nov 2001 10:49:44 -0500

>

>Hi all,

>

>We just heard from a young woman who became ill with CFIDS in 1993. We had

>written to her recently, to see what had become of her.

>

>She had dropped out of college for a year and was bedridden most of that

>time. She had then returned to college, taken a few courses at a time, and

>graduated in 1997.

>

>Then she went home for a year to rest. She wrote, " I also started on a

>strict regimen of Neurontin--an anti-convulsant--that my doctor was

>experimenting with and felt that it aided in my recovery. One year later, I

>felt well enough to move out and get a job... "

>

>She wrote, " My health has been back to normal (completely, if you can

>believe it) for the past 3-1/2 years. "

>

>We'll try to find out more about her Neurontin treatment, her doctor, etc.

>In any case, I find this encouraging.

>

>Best,

>Sue B.

>upstate New York

>

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[Guest guest]

I agree with Steve. My first experience with CFIDS was in my mid to late

twenties ( in the mid 80's) but CFIDS was never a diagnosis. Status

asthmaticus was the official diagnosis, and presumably accounted for my

weight loss, respiratory infections, fatigue, increasingly frequent

migraines.....I slowly recovered over a period of three years. It was not

until my late 30's when the exact symptoms reoccurred. I was diagnosed with

CFIDS, but it was still a couple of years after the CFIDS diagnosis that I

actually made the connection with the period in the mid 80's, and the

sameness of the symptoms! This time, however, I have not recovered, only

gotten progressively worse. I too take Neurontin, and while it has helped my

neuralgia, it has not cured my CFIDS. Dr. Seastrunk claims to have cured CFS

with Neurontin. It would be interesting to know the average age of his

patients, and any other meds he had them on, if any.

Donna in NC

completely back to normal

> >We just heard from a young woman who became ill with CFIDS in 1993. We

hadwritten to her recently, to see what had become of her.

> >She wrote, " My health has been back to normal (completely, if you

canbelieve it) for the past 3-1/2 years. "

[Guest guest]

Just to clarify this, don't growth hormone levels drop pretty dramatically

around age 23-25, and then steadily after that until age 60 or so? I

remember looking carefully at this since I got sick at age 23, and have done

nothing but steadily decline for the last 9 1/2 years. I need to look in the

literature again, but if I remember correctly, Cheney said those most likely

to recover were in their teens and under. Can anyone verify this?

Peggy

In a message dated 11/8/01 10:16:12 AM,

writes:

<< Subject: Re: completely back to normal

Sue,

You should consider the fact that recovery is not unusual in younger PWC's.

They have higher HGH and growth factor levels which allows their body to

repair the damage. Steve B. >>

[Guest guest]

Yes, and I would add that younger PWCs don't have to push themselves

to go to work everday and may be able to get more physical rest and

have less psychological stress.

Mike

> Sue,

>

> You should consider the fact that recovery is not unusual in

younger PWC's.

> They have higher HGH and growth factor levels which allows their

body to

> repair the damage. Steve B.

>

[Guest guest]

Dear Steve, Dear Judith,

That's an interesting thought about the growth hormones helping younger

people recover.

I have learned that the young woman who recovered had very severe

orthostatic intolerance and seizures.

Sue B.

upstate New York