Re: Onset/Scarlet Fever!

[Guest guest]

//This post from Gail was EXTREMELY interesting to me. I'm almost

reluctant to say why even though a top cfs dr took me seriously about it,

because it is a bit far out, to say the least. But I'm willing to risk

being thought maybe a bit bizarre because of the scarlet fever connection

suggested here, which I've NEVER heard before and would like to have some

references on please Gail.

Here's the story.

When I first became ill, in April 1980, and was utterly bedridden, and

diagnosed then with " viral labyrinthitis " the docs said there was nothing

to do but for me to linger till it went away, which could be months. That

was utterly unacceptable to me (I had a child to raise, a very responsible

job to work at, a house to manage, and my doctoral studies).

My massage therapist recommended an M.D. who was doing traditional

acupuncture. To make a very complex and long story short (about his

treatment) it ended very badly, with my getting much worse (after

temporarily getting a bit better) following a session with him that was

more dramatic than I'd be willing to tell in public, but whose central

memory that brought on a VERY VERY strong physical reaction, while the

acupuncture needles were in and then after, was of my scarlet fever illness

WHICH OCCURRED VERY BADLY when I was six years old!!!!

When CFS was diagnosed I once told my CFS doc this and asked him to treat

me for scarlet fever to see if I'd recover.

I don't know what that treatment is. He did think about it seriously and

gave credence to my " theory " but we dropped it.

Gail or others who have any more concrete info on this scarlet fever

connection (I don't even know the organism involved in s.f., do write me,

publicly or back channel, as I'm so interested.

Thanks.

Judith

At 01:15 PM 6/3/99 EDT, you wrote:

>From: GAILRONDA@...

>

>In a message dated 6/3/99 11:06:47 AM Eastern Daylight Time,

>C3814@... writes:

>

><< In 1945 while living in upper NY state I was diagnosed with scarlet

fever.

> >>

>That's what was pinpointed by a specialist after many years as my " starting

>point " , Carole. I became paralyzed for two days following scarlet fever,

>which can often be the beginning of CFIDS. The gradual onset began with

>frequent migraines, pain, etc.

>Gail

>

>------------------------------------------------------------------------

>With more than 18 million e-mails exchanged daily...

>

>...ONElist is THE place where the world talks!

>------------------------------------------------------------------------

>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.

>

>

[Guest guest]

Carole, Gail, & Judith,

One doctor actually had diagnosed with scarlet fever in 94 (three

years before gradual onset). But her pediatrician refused to call it that

because the bacterium (the same one that causes strep throat) came up

negative in two blood tests. That's when she declared it a mystery

virus. During the testing/diagnosis phase of this illness, was

taking amoxicillan. The concern at the time was that if her " scarlet

fever, " which seemed to be progessing to " rheumatic fever " (she had

unexplained swelling in a knee joint), caused heart damage (thus the EKG,

which I mistakenly labled EEG in my last post), she'd be on prophylactic

antibiotics her whole life.

My question for you three, were your diagnosed cases confirmed by blood

tests or were they arrived from a purely clinical observation? The

doctors I've spoken to about the scarlet fever/CFS connection have said

that there is none. But I still wonder.

April

___________________________________________________________________

You don't need to buy Internet access to use free Internet e-mail.

Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

or call Juno at (800) 654-JUNO [654-5866]

[Guest guest]

Judith, there isn't much to tell. I was just a child when I got scarlett

fever and ran a very high fever for a few days, but was happy for the extra

attention I got! I, of course, remember distinctly and quite vividly of

my legs being paralyzed since neither the doctor or my mother believed me.

The doctor felt it was a type of " hysteria " and my mother just acted

disgusted so I hid it from them by waiting to be alone to drag myself to the

bathroom. We lived across from a park near a school, and I intently watched

the children walking home to figure out what part of their feet they put down

first so I could keep trying! I certainly don't recall any pain. It was

when I finally got a chance to bring my daughter to an " expert " (Dr.

Bell) and he took a careful medical history of her, then me, that he

pinpointed the time I " got " it! He also indicated that he doubted what set

my daughter's real severity off (she had shown signs since a toddler) was not

really " mono " as DXed, but was something more virulent, so I understood that

the trigger could be anything virulent. Now, of course, I wonder if scarlet

fever wasn't a euphonism for HHV-6B, which is the children's disease but one

that may lie dormant. It was only following this that I had the symptoms.

Wish I could tell you more....

Gail

[Guest guest]

In a message dated 6/4/99 1:44:56 PM Eastern Daylight Time,

stanislava.muzikova@... writes:

<< This is really interesting. Never before came to my mind. I also had the

scarlet fever when I was fourteen. Anybody else ? >>

Hmmmm....this REALLY IS becoming interesting!

[Guest guest]

This is really interesting. Never before came to my mind. I also had the

scarlet fever when I was fourteen. Anybody else ?

stania

Re: Onset/Scarlet Fever!

>From: Judith Wisdom <wisdom@...>

>

>//This post from Gail was EXTREMELY interesting to me. I'm almost

>reluctant to say why even though a top cfs dr took me seriously about it,

>because it is a bit far out, to say the least. But I'm willing to risk

>being thought maybe a bit bizarre because of the scarlet fever connection

>suggested here, which I've NEVER heard before and would like to have some

>references on please Gail.

>

>Here's the story.

>

>When I first became ill, in April 1980, and was utterly bedridden, and

>diagnosed then with " viral labyrinthitis " the docs said there was nothing

>to do but for me to linger till it went away, which could be months. That

>was utterly unacceptable to me (I had a child to raise, a very responsible

>job to work at, a house to manage, and my doctoral studies).

>

>My massage therapist recommended an M.D. who was doing traditional

>acupuncture. To make a very complex and long story short (about his

>treatment) it ended very badly, with my getting much worse (after

>temporarily getting a bit better) following a session with him that was

>more dramatic than I'd be willing to tell in public, but whose central

>memory that brought on a VERY VERY strong physical reaction, while the

>acupuncture needles were in and then after, was of my scarlet fever illness

>WHICH OCCURRED VERY BADLY when I was six years old!!!!

>

>When CFS was diagnosed I once told my CFS doc this and asked him to treat

>me for scarlet fever to see if I'd recover.

>

>I don't know what that treatment is. He did think about it seriously and

>gave credence to my " theory " but we dropped it.

>

>Gail or others who have any more concrete info on this scarlet fever

>connection (I don't even know the organism involved in s.f., do write me,

>publicly or back channel, as I'm so interested.

>

>Thanks.

>

>Judith

>At 01:15 PM 6/3/99 EDT, you wrote:

>>From: GAILRONDA@...

>>

>>In a message dated 6/3/99 11:06:47 AM Eastern Daylight Time,

>>C3814@... writes:

>>

>><< In 1945 while living in upper NY state I was diagnosed with scarlet

>fever.

>> >>

>>That's what was pinpointed by a specialist after many years as my

" starting

>>point " , Carole. I became paralyzed for two days following scarlet fever,

>>which can often be the beginning of CFIDS. The gradual onset began with

>>frequent migraines, pain, etc.

>>Gail

>>

>>------------------------------------------------------------------------

>>With more than 18 million e-mails exchanged daily...

>>

>>...ONElist is THE place where the world talks!

>>------------------------------------------------------------------------

>>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.

>>

>>

>

>

>------------------------------------------------------------------------

>Looking to expand your world?

>

>ONElist has nearly 160,000 e-mail communities from which to chose!

>------------------------------------------------------------------------

>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.

>

[Guest guest]

Good question........how were we confirmed? Since this was 54 years ago. I

don,t remember! Seriously, I recall so much from my childhood.......my

husband thought I might remember if I had a blood test!!! Sorry I don,t

recall. however, since we were quarentined..there should be records in the

state of NY. Monday, I will get into this and see if I can get an answer!

Carole

[Guest guest]

In a message dated 6/4/99 7:30:59 PM Eastern Daylight Time,

C3814@... writes:

<< since we were quarentined..there should be records >>

That's a good idea that never ocurred to me. Do you have any idea if

scarlett fever looks or acts anything like HHV-6B, the childhood illness?

Maybe they couldn't tell the difference. I know I never had a blood

test....I don't think they had been invented yet! I sure know there wasn't

any TV!!!

Gail

[Guest guest]

Gail,

You wrote: < Do you have any idea if scarlett fever looks or acts

anything like HHV-6B, the childhood illness? Maybe they couldn't tell

the difference. I know I never had a blood test....I don't think they

had been invented yet!>

We just did a blood draw on yesterday. Oh, how I wished I had

known to check for HHV-6B! Blood draws are too stressful for ,

so I don't when we'll have a chance to check for it again. But I'll keep

you posted if the opportunity arises. It sure makes me wonder if you've

figured out her " scarlet fever " mystery virus!

April

___________________________________________________________________

You don't need to buy Internet access to use free Internet e-mail.

Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

or call Juno at (800) 654-JUNO [654-5866]

[Guest guest]

April, et al.,

I think that what we have to find out probably from a good infectious

disease expert is what causes scarlet fever and also whether the diagnosis,

when made without lab confirmation, is fairly clear and not easily confused

with another disease.

I do know there were very serious epidemics of what was called scarlet

fever--the symptoms being very high fevers and very, very , very sore

throats, with a course of several weeks, with many people being left with

immediate ear or eye impairment, though some had impairment later, and of

other organs.

I wish I could get to a medical library to read some history on the

epidemics, mode of dx, etc.

However, IF currently there is a bug (and I think when I spoke with my CFS

doc he did say there were two bugs involved) believed to have caused it,

then it would be interesting if those diagnosed with it were treated NOW.

That's what I asked my doc to do. He liked the idea, then the idea got

kind of buried under other concerns.

Look, it is entirely possible that our current illness is not specific to

any one past bug and/or treatment but to our having had one or more serious

bugs that somehow impaired our immune systems OR where the bug only seemed

to be killed, but some of it remained within us in hidden sites (like our

muscles), and became pathological again when other co-factors emerged. (I

know this is hardly original a theory of what CFS " is. " )

So then the problem is what to treat NOW. What is the current offending

and major pathology. Or pathologies. The docs treating particular bugs

believe it is these bugs. Maybe it is. And even if it is, as said before,

are we up to dealing with the toxins released from treating it if we have

been metabolically rather undermined by years of, say, an overactive immune

system, with cytokines flying around and doing whatever damage they have.

Among other things I haven't enough medical knowledge of; but

experientially I know I am very much more delicate/sicker than I was when I

first came down with this thing. I.e., it has continued to damage me

despite all efforts to stay fit and upgrade my general health as well as

often treat.

I have a very deep hunch I could not survive a treatment that released lots

of toxins. However, if I had a dr. very close geographically and very

available, with whom I could work very closely to titrate treatment, I

would try some strong treatment, like ABX.

My doc is good but he is not real available. Very busy. Not easy for me

to get to (my ex-husband drives me--it's 40 minutes away and I can't make

it on my own). And I often cannot get my doc real easily by phone without

putting more pressure on the relationship than he wishes to provide given

his current medical interests and focus.

I've done , when healthier, strong treatments on my own, but I am no longer

up to the risks, either physically or even emotionally quite frankly. So I

must try more gentle and easier to titrate things. Which is why I THINK

Immunocal (from list members writings and what Cheney has said) might be

easier to take and easier to titrate on my own) might be the first or only

sensible thing for someone who is real sick and doesn't have a lot of help

or isn't in a close, supportive relationship with an M.D., might should

consider.

One woman's opinion. For the moment. But I do hope we can find out a bit

more about scarlet fever and the bug thqat causes it and its treatment.

And why aren't there epidemics anymore. WE do know epidemics are cyclical;

but to my memory that are now s.f. preventive vaccinations. Or am I wrong

about that.

HOWEVER, very interestingly and maybe relevant is this (I JUST remembered):

In the late 60s, those dear years, they were treating people with Herpes

Simplex Type One, who were getting frequent and bad outbreaks, with

vaccinations that were for smallpox. I don't remember the reason or

whether that practice was continued. I only say this because when I went to

do graduate work in North Carolina, I had to get a smallpox vaccination.

In the 60s. I had a VERY STRONG local reaction. Like Mt. Vesuvius, even

though I had had a vaccination as a small child. Then, a few years later

and for many years after that I was plagued with Herpes Simplex Type One on

my lips. I attributed it to the fact that my then mate had it on his lips

and after a while I caught it; but who knows.

This is why the gov is criminal in not doing very exacting epidemiological

work on large subsets of us, those utter criminal and arrogant and

stupidly-behaving creeps who have dismissed out lives and our pain.

Judith

wrote:

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

>

>Carole, Gail, & Judith,

>

>One doctor actually had diagnosed with scarlet fever in 94 (three

>years before gradual onset). But her pediatrician refused to call it that

>because the bacterium (the same one that causes strep throat) came up

>negative in two blood tests. That's when she declared it a mystery

>virus. During the testing/diagnosis phase of this illness, was

>taking amoxicillan. The concern at the time was that if her " scarlet

>fever, " which seemed to be progessing to " rheumatic fever " (she had

>unexplained swelling in a knee joint), caused heart damage (thus the EKG,

>which I mistakenly labled EEG in my last post), she'd be on prophylactic

>antibiotics her whole life.

>

> My question for you three, were your diagnosed cases confirmed by blood

>tests or were they arrived from a purely clinical observation? The

>doctors I've spoken to about the scarlet fever/CFS connection have said

>that there is none. But I still wonder.

>

>April

>

>___________________________________________________________________

>You don't need to buy Internet access to use free Internet e-mail.

>Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

>or call Juno at (800) 654-JUNO [654-5866]

>

>------------------------------------------------------------------------

>Did you know each week we feature a ONElist story?

>

>How has ONElist changed your life? Please share your story.

>------------------------------------------------------------------------

>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.

>

>

[Guest guest]

In a message dated 6/5/99 2:59:01 AM Eastern Daylight Time,

wisdom@... writes:

<< One woman's opinion. For the moment. But I do hope we can find out a bit

more about scarlet fever and the bug thqat causes it and its treatment. >>

My very mini library offerred only that scarlet fever is " an acute contagious

disease, usually occurring in childhood, caused by a Streptococcus bacterium

and characterized by fever, sore throat, enlarged lymph nodes in the nect,

and a bright red rash that spreads from the armpits and groin to the trunk of

the body and limbs. Treatment is by antibiotics. " It's also known as

scarlatina. If they haven't tested for Strep, can it be confused with HHV6B

is the real question. Wish I had a few experts in my closet that I could

bounce things off on when I get the urge!

Gail

[Guest guest]

This is interesting because when I was a kid I had Henoch-Schoenlein Purpura

which I believe is also caused by a Streptococcus bacterium. I do not have

enough of a background to understand the connection but it is interesting.

thanks

Steve

> Re: Onset/Scarlet Fever!

>

> From: GAILRONDA@...

>

> In a message dated 6/5/99 2:59:01 AM Eastern Daylight Time,

> wisdom@... writes:

>

> << One woman's opinion. For the moment. But I do hope we can find out a

> bit

> more about scarlet fever and the bug thqat causes it and its treatment.

> >>

> My very mini library offerred only that scarlet fever is " an acute

> contagious

> disease, usually occurring in childhood, caused by a Streptococcus

> bacterium

> and characterized by fever, sore throat, enlarged lymph nodes in the nect,

>

> and a bright red rash that spreads from the armpits and groin to the trunk

> of

> the body and limbs. Treatment is by antibiotics. " It's also known as

> scarlatina. If they haven't tested for Strep, can it be confused with

> HHV6B

> is the real question. Wish I had a few experts in my closet that I could

> bounce things off on when I get the urge!

> Gail

>

> ------------------------------------------------------------------------

> " Congratulations to 'Voice-Diary,' our latest ONElist of the Week.

>

> Visit our homepage and share with us how ONElist is changing YOUR life!

> ------------------------------------------------------------------------

> 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.

[Guest guest]

Gail, et al.,

The next time I get another minute to do a MEDLINE search, I'll play with

scarlet fever and HHV6B and/or see if there are connections between strep

and HHV6B. I too wish I had that expert in my closet. I also, in addition

to a medical expert in the closet, wish I had a computer expert in there too.

And a slave. So I could do more of what I want to rather than using my

energy for sheer subsistence/existence.

Judith

At 10:54 AM 6/5/99 EDT, you wrote:

>From: GAILRONDA@...

>

>In a message dated 6/5/99 2:59:01 AM Eastern Daylight Time,

>wisdom@... writes:

>

><< One woman's opinion. For the moment. But I do hope we can find out a bit

> more about scarlet fever and the bug thqat causes it and its treatment. >>

>My very mini library offerred only that scarlet fever is " an acute

contagious

>disease, usually occurring in childhood, caused by a Streptococcus bacterium

>and characterized by fever, sore throat, enlarged lymph nodes in the nect,

>and a bright red rash that spreads from the armpits and groin to the trunk

of

>the body and limbs. Treatment is by antibiotics. " It's also known as

>scarlatina. If they haven't tested for Strep, can it be confused with HHV6B

>is the real question. Wish I had a few experts in my closet that I could

>bounce things off on when I get the urge!

>Gail

>

>------------------------------------------------------------------------

> " Congratulations to 'Voice-Diary,' our latest ONElist of the Week.

>

>Visit our homepage and share with us how ONElist is changing YOUR life!

>------------------------------------------------------------------------

>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.

>

>

[Guest guest]

Judith, a slave and a computer expert should be added to my list, too! And a

reliable brain....then we'd be unstoppable!

Gail