Scared of having my little one have to go to IV 
Author Message
 Scared of having my little one have to go to IV

Brian Fallon told us last Friday that if Lyme is what is causing my
daughter's neurological problems (and as we rule out all other causes,
it certainly seems so!) that orals are a weak treatment and that IV is
really the way to address it.  I'm scared...she is only six and I can't
even imagine her having to go through this and go to school, etc.  This
whole thing is just not fair!! I wish I could be sick instead of her.

Anyone who has been through this and can give me more detail on how its
done (or had their little ones have to do it) would be much appreciated.

TIA,

Sharon

Sent via Deja.com http://www.***.com/
Before you buy.



Mon, 03 Feb 2003 03:00:00 GMT
 Scared of having my little one have to go to IV

Quote:
>My ID doc disagrees also, as did my son's Lyme doc, who only treated kids with
>Lyme.  

>Only if your child has failed all possible {*filter*}treatment, including empiric tx
>for possible babesia, would our experience indicate that you have no choice but
>to use IV.  My son has been 100% free of any symptoms for over two years and
>has been completely off treatment for the same two years, thanks to {*filter*}
>treatments.  For him, it was {*filter*}doxy, followed by an empiric trial of
>Mepron/Zithromax that did the trick.  If your daughter has undetected
>coinfection, no amount of IV abx is going to cure her until the other pathogens
>are cleared.

>I don't want to add to your confusion or anxieties, but there is just no firm
>consensus on what works here, only your best judgement for your child, after
>gathering lots of info.

I believe my doctor would also for this once disagree with Fallon. He
(my doctor, not Fallon) has told me that one of the most frustrating
aspects of being a Lyme doctor has been that he simply cannot predict
which Lyme patients will respond to which medicines. Duration of
infection and types of symptoms provide no guide to what medication
the patient needs to get better, in his experience he can only rely on
trial and error, and the breakthrough med differs from person to
person. Because of the mainstream denial of the scope and severity of
this illness, there has just not been the research that would
determine why one person gets better on a particular med and another
person doesn't.

Amy in CT



Mon, 03 Feb 2003 03:00:00 GMT
 Scared of having my little one have to go to IV
My daughter was 9 years old when she went on IV (for 3 months).  The IV did
not bother her much.  She felt better than she had felt in a couple of years
(we had tried {*filter*}abx).  She was on the gymnastics team and was even able
to keep practicing.  It made a world of difference in her health.  Aside
from swimming, she was able to do anything that she felt physically up to.
She went to school with the IV and was very mature about handling the whole
thing.  If your daughter has any questions I think my daughter would be
happy to write to her about her experience.

Anna

Quote:

> Brian Fallon told us last Friday that if Lyme is what is causing my
> daughter's neurological problems (and as we rule out all other causes,
> it certainly seems so!) that orals are a weak treatment and that IV is
> really the way to address it.  I'm scared...she is only six and I can't
> even imagine her having to go through this and go to school, etc.  This
> whole thing is just not fair!! I wish I could be sick instead of her.

> Anyone who has been through this and can give me more detail on how its
> done (or had their little ones have to do it) would be much appreciated.

> TIA,

> Sharon

> Sent via Deja.com http://www.***.com/
> Before you buy.



Tue, 04 Feb 2003 11:04:13 GMT
 Scared of having my little one have to go to IV

Quote:

> Brian Fallon told us last Friday that if Lyme is what is causing my
> daughter's neurological problems (and as we rule out all other causes,
> it certainly seems so!) that orals are a weak treatment and that IV is
> really the way to address it.  I'm scared...she is only six and I can't
> even imagine her having to go through this and go to school, etc.  This
> whole thing is just not fair!! I wish I could be sick instead of her.

> Anyone who has been through this and can give me more detail on how its
> done (or had their little ones have to do it) would be much appreciated.

> TIA,

> Sharon

Fallon said she should be on IV?

Is she con{*filter*} Lyme?

Does anyone out there have any basket case
con{*filter*} Lyme children?

I wonder if anything would help mine.

People, even me, have a really hard
time believing the manifestations of
con{*filter*} Lyme are exactly like
big people chronic Lyme Encephalopathy.

I would love to have all of our
CSFs cultured and see if we all grow the
same strains...

That would prove it for once and
for all...

And for the McWeenerizer.

And for the Dr. Sicko-Shapiro

And for Dr. Lucifer Schoen, then I can sue him AND Yale...

Wonder how much I could get if I sued Yale?

Maybe enough to start a nationwide network
of Lyme treatment clinics...



Tue, 04 Feb 2003 03:00:00 GMT
 Scared of having my little one have to go to IV
On Fri, 18 Aug 2000 11:41:56 -0400, Kathleen

Quote:

>People, even me, have a really hard
>time believing the manifestations of
>con{*filter*} Lyme are exactly like
>big people chronic Lyme Encephalopathy.

>I would love to have all of our
>CSFs cultured and see if we all grow the
>same strains...

>That would prove it for once and
>for all...
>And for the McWeenerizer.
>And for the Dr. Sicko-Shapiro
>And for Dr. Lucifer Schoen, then I can sue him AND Yale...
>Wonder how much I could get if I sued Yale?
>Maybe enough to start a nationwide network
>of Lyme treatment clinics...

I wish there was a way to make a case for human rights violations.  It
is unbelievable to know that these doctors not only turn away sick
people but try to stand in the way of other doctors who are willing to
treat Lyme. If there is a hell, there really must be a special circle
reserved for the likes of the aforementioned characters. They
certainly seem to be intent on getting us to "abandon all hope".

Amy in CT



Tue, 04 Feb 2003 03:00:00 GMT
 Scared of having my little one have to go to IV

Quote:

> X-No-Archive: Yes
> Cutmarks: --


> Newsgroups: sci.med.diseases.lyme
> >Sent: Friday, August 18, 2000 11:41 AM
> >Subject: Re: Scared of having my little one have to go to IV

> > I wonder if anything would help mine.

> There's always the Ct. Dept. of Chidren and Families.
> --

> Sent via Deja.com http://www.deja.com/
> Before you buy.

Yeah I tried them. They said
we weren't dysfunctional enough
for their help.  They said I
would need to have an abusive, druging
boyfriend living here beating us up
all the time to be eligible for the
Family Reprieve Program.  

Verbatim.

I needed help with the kids while my head
was stuck to the carpet more than
not.  No one would help me.

I tell everyone that the miracle of
surviving that Herx was that none of the
kids had a fatal accident while I couldn't
move a limb for an hour at a time, nor stand
up for more than 5 minutes.

But thanks for your concern.

By the way, I have the proof of this.

I bet they have people like you
making policy.

Kathleen



Wed, 05 Feb 2003 03:00:00 GMT
 Scared of having my little one have to go to IV

Quote:


> > X-No-Archive: Yes
> > Cutmarks: --


> > Newsgroups: sci.med.diseases.lyme
> > >Sent: Friday, August 18, 2000 11:41 AM
> > >Subject: Re: Scared of having my little one have to go to IV

> > > I wonder if anything would help mine.

> > There's always the Ct. Dept. of Chidren and Families.
> > --

> > Sent via Deja.com http://www.deja.com/
> > Before you buy.

> Yeah I tried them. They said
> we weren't dysfunctional enough
> for their help.  They said I
> would need to have an abusive, druging
> boyfriend living here beating us up
> all the time to be eligible for the
> Family Reprieve Program.

> Verbatim.

> I needed help with the kids while my head
> was stuck to the carpet more than
> not.  No one would help me.

> I tell everyone that the miracle of
> surviving that Herx was that none of the
> kids had a fatal accident while I couldn't
> move a limb for an hour at a time, nor stand
> up for more than 5 minutes.

> But thanks for your concern.

> By the way, I have the proof of this.

> I bet they have people like you
> making policy.

> Kathleen

I forgot to mention I called them a first
time and they said I made too much
money and that their policy did not allow
for what I was paying in daycare, which
was more than half my take home pay,
for them to send someone out and help me.

I had to the leave the kids in daycare
(I got them there 1/2 the time, maybe,
and my oldest to kindergarten only 1/2
the days that semester, and the other
half of the time she was late)
to reserve their spots.

So, I actually asked them twice for
help.  Both times I was ineligible
for the stupidest of reasons.

BTW.  'Know what daycare is for three
little kids in CT under the table
and with the three-kid discount?

~$300.

So much for the Department of Children
and Families in CT.  You're only worthy
of their intervention if you are a illegal
drug-using wacko and hurt your kids.

Yep.  The CDC, NIH and the DCF.
Three government bodies of like mind:
First allow for all the harm possible,
then pay your employees every week
to be neurotic.

Kathleen



Thu, 06 Feb 2003 03:00:00 GMT
 
 [ 7 post ] 

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