Docs who see AIDS patients too

[Guest guest]

In a message dated 03/17/1999 11:01:27 AM EST, you write:

<< Of course, the CDC tells us we are not contagious. So who knows? >>

Hi Pat.

It really bothers me when docs say that we are not contagious. How do they

know this is for a fact if they don't even know what causes CFS?

My sister got sick in June/July of '87. She went through all the possible

tests you could imagine and everything was eventually ruled out--leaving a

diagnosis of CFS. While this was going on, I got ill in August, but with a

whole set of diff symptoms than my sis--so it didn't occur to me at the time

that we both may have the same illness. A short time later, my sister's

fiancee also came down with a flu-like illness.

Guess what--we all have CFS! I vividly remember sharing a bottled drink

(which I don't do habitually) with my sis the same week I got sick. So, I

think she was sick first and passed it on to the two of us. It's too much of

a coincidence to say that we all got sick within 3 or 4 months of each other

and the source is not related. In fact, all our immune systems had been

damaged months prior to this with the Taiwainese Flu--from which we all

claimed we had never got back to feeling 100% again.

I've heard a theory that CFS is only contagious at the onset of the illness.

I believe this to be true, but since I've been sick and know how debilitating

CFS is, I have a strict rule that nobody eats off my fork, drinks out of my

cup,...

Better safe than sorry....................Sue

[Guest guest]

In a message dated 3/17/99 11:01:28 AM Eastern Standard Time,

patpm@... writes:

<< Of course, the CDC tells us we are not contagious. >>

Pat, the CDC says there is " no evidence of contagion " but, of course, they

haven't looked for any. There's no solid evidence either way, but there is

evidence that they've never followed up on contagion. Maybe the illness

isn't, but portions may be.

Gail

[Guest guest]

My Infectious Diseases specialist's practice is primarily AIDS/HIV. He

knows exactly what to do to avoid contamination because he can't afford for

him or his staff to get infected either. I have no fears on that account.

It is the PWAs who have more to fear from us. The literature suggests that

it is mycoplasma infection that pushes HIV+ status over into AIDS. So in

effect, we who have " smouldering " mycoplasma infections are probably the

problems for these doctors as far as cross-contamination is concerned.

Of course, the CDC tells us we are not contagious. So who knows?

Pat

PWC 10 yrs, PWF 5+ yrs

[Guest guest]

In a message dated 3/17/99 2:39:49 PM Eastern Standard Time,

patpm@... writes:

<< Until the CDC makes doctors report cases of newly diagnosed CFS, no one

will

take the contagion issue seriously. I intend to make that the topic of my 5

minutes at the CFS CC Meeting in April.

>>

GOOD FOR YOU, PAT! I HAVEN'T BEEN NOTIFIED IF I MADE THE " CUT " YET, BUT HOPE

TO SEE YOU THERE! And what to tell those intimate with you? Beats me.

You're doing the right thing by taking precautions. It can't hurt and may

very well help. If we only knew IF and HOW this was transmissable, I've got a

list of some who deserve it!!!! I'm sure many others do, too!

Gail

[Guest guest]

In a message dated 3/17/99 2:15:59 PM Eastern Standard Time, GAILRONDA@...

writes:

> Maybe the illness

> isn't, but portions may be.

Yes Gail & ALL....

I have a huge family, no one has come down with cfids... 1 in law

enetered my family after they had cfids way before they even knew any of us !

and 1 more in law I suspect of having it, time will tell... My Husband became

very weak and tired for one year in the begining, he is fine now, but he was

also bitten 3 times by ticks.

I beleive maybe infectious but not contagious... can't write it the way I had

read that...

Still riding the green wave...

Susyshamrock...

[Guest guest]

Gail - we probably all know that we should be " better safe than sorry. " My

CDC comment was meant as wry humor. But what can you tell your intimate

friends when you really do NOT want to give them any part of this DD?

Anyway, I treat myself as if I have a flu bug all the time and more or less

take that type of precaution.

Until the CDC makes doctors report cases of newly diagnosed CFS, no one will

take the contagion issue seriously. I intend to make that the topic of my 5

minutes at the CFS CC Meeting in April.

Pat

At 02:12 PM 3/17/99 EST, you wrote:

>From: GAILRONDA@...

>

>In a message dated 3/17/99 11:01:28 AM Eastern Standard Time,

>patpm@... writes:

>

><< Of course, the CDC tells us we are not contagious. >>

>Pat, the CDC says there is " no evidence of contagion " but, of course, they

>haven't looked for any. There's no solid evidence either way, but there is

>evidence that they've never followed up on contagion. Maybe the illness

>isn't, but portions may be.

>Gail

>

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[Guest guest]

In a message dated 3/17/99 11:01:28 AM Eastern Standard Time,

patpm@... writes:

> My Infectious Diseases specialist's practice is primarily AIDS/HIV.

Jane and Pat.... This is very common for many of us...Dr Salavato in Tx..Dr

levine i think in N.Y. etc etc etc...

Years back no one even suggested for me to go to a ID Dr...they just wildly

suggested for me to go to a Pychatrist tho...

Now when i came positive with myco spp thru IMM a local researcher suggested a

ID Dr....times are changing....

Be Well...

Susyshamrock....

[Guest guest]

Sue

I have had the same thing happen to me, but I was sick with a flu that didn't

go away in 1980 - 6 months after my son was born. Took 3 years to get better,

not totally cured, tho. Then in 1989 started getting pain and sleep disorder,

diagnosed with Fibromyalgia. It wasn't until 1997 that my daughter and

husband came down with Fibromyalgia when my son had a schizophrenic break. My

son has no signs of Fibro yet. My mother has had it for 10 years and my

brother has had it since about 1978.

Dianne

[Guest guest]

, I had the same experience...A new doc no less. Right out of internship.

The funny, ironic, part about it, was that he dismissed me, and 2 weeks later

I was being operated on for Hodgkin's lymphoma. After all of that, when I

didn't get Well, I finally got the DX of Fibro, AND CFIDS. The very same day.

Who knows. I simply invite any one of them to change life's for a day. By the

way, I have been on DOX, and ceftin, for 1 week, some of the older aches and

pains are back. Also, I am sleeping for 12 hours at time. Thank for all your

info, and a good luck to Maureen, as well on Dox. Lets compare notes... Mike

In Delaware

[Guest guest]

A good friend of mine 'develeoped' cfids right after having lymph nodes

remeoved due to cancer. Now, many years later, she's started taking

hormone replacement and she feels better. I know there can be a connection

between hormones levels and fatigue... Just tossing that one out there!

Christa