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In a message dated 4/18/99 5:55:54 PM Eastern Daylight Time,

tyree.pines@... writes:

<<

So, we've made it over another hurdle. >>

April, your message was wonderful...brought back so many memories!!! Next

time you''ll know to try the Dairy Queen sooner, but next time it may be too

soon! Mothers never win with this but they sure know how to get angry in the

ERs!!

Gail

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On Sun, 18 Apr 1999 21:17:28 -0800 Marcia Grahn <mgrahn@...>

writes:

>From: Marcia Grahn <mgrahn@...>

>

>I am SO relieved to hear of s " miraculous " recovery!

>Personally I have NEVER made such a fast change in the course of my

>CFS but then I am older and she has youth on her side!

Marcia,

is still pretty miserable with her throat, stomach and dizziness,

but she definitely has made a change for the better. I think when she

saw that the ER visit had nothing to benefit her, she simply determined

to make things better on her own terms. I just wished it had happened

BEFORE we walked into the ER!

I guess most everyone on this list also is looking to make things better

on his or her own terms. When doctors lack answers (or even an

understanding of what the problem is), it is those patients willing to

seek out the research and experimental treatments who are most likely to

reach out and grab hold of something that will actually help.

And Beth, good luck with the kutapressin. At least, through this list,

you have an idea of what other options are available.

April

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April L Tyree wrote:

> From: April L Tyree <tyree.pines@...>

>

> Update on : This morning she couldn't tolerate even popsicles and

> the throat spray didn't help, so I took her into the ER to to check her

> for dehydration and see if there was something we could get her to ease

> the pain enough to swallow liquids. I think we had a rent-a-doc because

> my husband, who works at the hospital, hadn't heard of the guy we got.

> The doc tried, in my opinion, to give us the brush off. He took a look

> at her throat, felt her glands, then said he'd prescribe some

> antibiotics. That was it!

>

> When the nurse came in with the prescription, I'm ashamed to admit I took

> things out on her. I said that ALWAYS has sore throat and swollen

> glands as a symptom of her CFS, that this was likely a flare up of her

> condition, and we were there not to get her throat cured (unless it was

> strep, which they weren't checking for anyhow), but to seek pain relief

> and check for dehydration. Without proof of bacterial infection, I

> didn't want to mess with abx. The nurse spoke to the doc, who then

> ordered a blood test to check for dehydration. was OK. But he

> still offered nothing more for pain relief than the home remedies we've

> already tried. And, of course, he gave us a script for abx. Oops. I

> lost it.

>

> After we were done in the ER, the little turkey () developed an

> appetite for Dairy Queen, where, I'm happy to report, she ate her entire

> lunch and consumed an entire Misty Float! And you PWCs wonder why we

> healthies find it so hard to always believe you when you say you're sick

> one minute, then act normal the next.

>

> I'm thinking that I won't call her doctor tomorrow, after all. On the

> Prozac, I figured out that if I split up the contents of a 20mg capsule

> into 4 equal piles, then poured those piles into empty capsules (which I

> got from emptying some supplements), I could custom create 5mg capsules.

> If it works, I figure 's doctor can wait until her June

> appointment to learn about it.

>

> So, we've made it over another hurdle. Thanks to all for your prayers and

> advice.

>

> April

>

April!

I am SO relieved to hear of s " miraculous " recovery! Personally I have

NEVER made such a fast change in the course of my CFS but then I am older and

she has youth on her side!

Sounds like you handled the whole ordeal very well, the hospital experience must

have been SO frustrating for you! The Prozac adjustment sounds like good way to

handle that too, so heres hoping

you have SMOOTH SAILING for awhile! I think you have proven that CFS is a

frustrating illness for ALL involved, not just the patient!!!!

Take care, Marcia

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Poor . My husband and I had nearly the same

experience with his gastric pain and the ER. We are

actually going to try to sue for malpractice. The ER

doc questioned the legitimacy of any CFS dx and flat

out stated that he thought my husband was an addict

faking to get pain meds. I wonder how he thought he

faked the 8 hrs of vomiting bile and the broken blood

vessel in the eye? After I opened a new orifice for

the doctor, he seemed to see the light. He provided

pain med (minimal) and didn't manage to provide

rehydration until I pointed out that my husband was

still bringing everything up. They released him with a

101 fever.

It was torture for my husband, who is a grown up most

days. How horrid for a child.

Doris

--- Marcia Grahn <mgrahn@...> wrote:

> From: Marcia Grahn <mgrahn@...>

>

>

>

> April L Tyree wrote:

>

> > From: April L Tyree <tyree.pines@...>

> >

> > Update on : This morning she couldn't

> tolerate even popsicles and

> > the throat spray didn't help, so I took her into

> the ER to to check her

> > for dehydration and see if there was something we

> could get her to ease

> > the pain enough to swallow liquids. I think we had

> a rent-a-doc because

> > my husband, who works at the hospital, hadn't

> heard of the guy we got.

> > The doc tried, in my opinion, to give us the brush

> off. He took a look

> > at her throat, felt her glands, then said he'd

> prescribe some

> > antibiotics. That was it!

> >

> > When the nurse came in with the prescription, I'm

> ashamed to admit I took

> > things out on her. I said that ALWAYS has

> sore throat and swollen

> > glands as a symptom of her CFS, that this was

> likely a flare up of her

> > condition, and we were there not to get her throat

> cured (unless it was

> > strep, which they weren't checking for anyhow),

> but to seek pain relief

> > and check for dehydration. Without proof of

> bacterial infection, I

> > didn't want to mess with abx. The nurse spoke to

> the doc, who then

> > ordered a blood test to check for dehydration.

> was OK. But he

> > still offered nothing more for pain relief than

> the home remedies we've

> > already tried. And, of course, he gave us a script

> for abx. Oops. I

> > lost it.

> >

> > After we were done in the ER, the little turkey

> () developed an

> > appetite for Dairy Queen, where, I'm happy to

> report, she ate her entire

> > lunch and consumed an entire Misty Float! And you

> PWCs wonder why we

> > healthies find it so hard to always believe you

> when you say you're sick

> > one minute, then act normal the next.

> >

> > I'm thinking that I won't call her doctor

> tomorrow, after all. On the

> > Prozac, I figured out that if I split up the

> contents of a 20mg capsule

> > into 4 equal piles, then poured those piles into

> empty capsules (which I

> > got from emptying some supplements), I could

> custom create 5mg capsules.

> > If it works, I figure 's doctor can wait

> until her June

> > appointment to learn about it.

> >

> > So, we've made it over another hurdle. Thanks to

> all for your prayers and

> > advice.

> >

> > April

> >

>

> April!

>

> I am SO relieved to hear of s " miraculous "

> recovery! Personally I have NEVER made such a fast

> change in the course of my CFS but then I am older

> and she has youth on her side!

>

> Sounds like you handled the whole ordeal very well,

> the hospital experience must have been SO

> frustrating for you! The Prozac adjustment sounds

> like good way to handle that too, so heres hoping

> you have SMOOTH SAILING for awhile! I think you

> have proven that CFS is a frustrating illness for

> ALL involved, not just the patient!!!!

>

> Take care, Marcia

>

>

>

>

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>

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> 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.

>

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  • 11 years later...

For those of you who are discouraged/and or frightened about your LD symptoms, I

have three acquaintances who were totally paralyzed from the neck down (one for

over two years) and are doing great now, completely recovered. Although Im just

beginning my fight with LD, knowing that they recovered has helped me a lot.

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Thank you for this info! We don't hear enough about the success

stories. I was very sick 2 years ago but am now feeling very, very

good. Still on some abx, but gradually dropping them. I also know

someone who has been totally med free and 100% well after 3 years on abx.

Don

On 1/30/2011 12:56 AM, mac wrote:

> For those of you who are discouraged/and or frightened about your LD symptoms,

I have three acquaintances who were totally paralyzed from the neck down (one

for over two years) and are doing great now, completely recovered. Although Im

just beginning my fight with LD, knowing that they recovered has helped me a

lot.

>

>

>

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i have been in treatment for 2 years now after undiagnosed for 6 and i feel

90% better and am working out again and plan on working soon.

would you ask those people to write a short note to us here, it definitely

would be encouraging :)

On Sat, Jan 29, 2011 at 9:56 PM, mac <slimpoint@...> wrote:

>

>

> For those of you who are discouraged/and or frightened about your LD

> symptoms, I have three acquaintances who were totally paralyzed from the

> neck down (one for over two years) and are doing great now, completely

> recovered. Although Im just beginning my fight with LD, knowing that they

> recovered has helped me a lot.

>

>

>

>

>

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