Re: To the adults/CFSers who have been on antivirals

[Guest guest]

,

One thought here... it would be nice for you to get stabilized medically

when you¹re sort of at a ³baseline²... it might help you to stay that way

(or feel even better) if you were on some meds that support your immune

system when it gets stressed. It might also be nice to start building that

doc/patient relationship now so that you have an established relationship

when you need it. If you wait until things start to slide, then it will

take longer for you to get help and get back on track.

Maybe you could space the appointments out further since you¹re doing well

right now.

I would think a good doctor would find you to be a fascinating case!

Caroline

From: <thecolemans4@...>

Reply-< >

Date: Mon, 25 Feb 2008 15:23:44 -0800 (PST)

< >

Subject: To the adults/CFSers who have been on antivirals

Hi there -

I'm trying to decide whether to travel to start the

protocol even though I'm feeling alright and way up on

the upswing from a few years of PANDAS. My energy

isn't what I'd like it to be, and neither is cognitive

functioning, but I'm about as well as I've been at

other times and am getting along alright. But I have

the chance to travel and can fund it for a while, so

I'm interested in finding out if the meds (antivirals

specifically I think) would benefit me if I'm not in a

significant state of .

Of course - what do I have to compare to as to how

well I am?

Just wanted to know other mom's experiences...

[Guest guest]

Thanks Caroline -

I sort of was thinking along that line too. It's more

like ... I haven't had the opportunity to have that

type of help yet ... if it made a difference at this

point, maybe I would really be able to tell. I

just want to know.

It is extremely difficult for me to make that

financial committment for myself when I should

probably have my youngest on it although he is also

stable. But then I think of the plane and the oxygen

mask and I realize that it is even more important for

me to be at my best (if I ever figure out what that

is). I'm also afraid to learn that it won't help, and

I've been making really good progress emotionally just

trying to accept life on life's terms and accept my

level of functioning (since I'm doing pretty good now

it's easier to do but perfectionism fights hard), and

I'm afraid of the psychological impact of starting a

new kind of med and hoping ... I'm afraid I'll start

getting hypervigilant again and that will just make me

emotionally sick.

(And I think it's more like a tortuous case lol!

Truly)

I appreciate being able to talk this out to ya. I'm

so often in a place where I'm not exactly sure which

way is up and I can't be sure that I can always trust

the direction of the bubbles...

Thanks for listening

--- Caroline Glover <sfglover@...> wrote:

> ,

>

> One thought here... it would be nice for you to get

> stabilized medically

> when you¹re sort of at a ³baseline²... it might help

> you to stay that way

> (or feel even better) if you were on some meds that

> support your immune

> system when it gets stressed. It might also be nice

> to start building that

> doc/patient relationship now so that you have an

> established relationship

> when you need it. If you wait until things start to

> slide, then it will

> take longer for you to get help and get back on

> track.

>

> Maybe you could space the appointments out further

> since you¹re doing well

> right now.

>

> I would think a good doctor would find you to be a

> fascinating case!

>

> Caroline

>

>

>

> From: <thecolemans4@...>

> Reply-< >

> Date: Mon, 25 Feb 2008 15:23:44 -0800 (PST)

> < >

> Subject: To the adults/CFSers who have been

> on antivirals

>

> Hi there -

> I'm trying to decide whether to travel to start the

> protocol even though I'm feeling alright and way up

> on

> the upswing from a few years of PANDAS. My energy

> isn't what I'd like it to be, and neither is

> cognitive

> functioning, but I'm about as well as I've been at

> other times and am getting along alright. But I

> have

> the chance to travel and can fund it for a while, so

> I'm interested in finding out if the meds

> (antivirals

> specifically I think) would benefit me if I'm not in

> a

> significant state of .

>

> Of course - what do I have to compare to as to how

> well I am?

>

> Just wanted to know other mom's experiences...

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

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