> Susan,
> Sorry about the quotes around chronic lyme disease, I do believe
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> meta analysis articles suffer from bias--what studies are included,
> etc.)
Judy, I think it's probably also unusual to be bitten by a tick that's
carrying only one infection. I think it's Krause at U. Conn whose
theory is that babesiosis in particular is behind uncurable late Lyme in
many cases. Anecdotally, after 3 1/2 years of chronic Lyme that needed
constant abx, my child was cured by a trial of zithromax and atovaquone.
We can't test for the organisms with any reliability, the literature is
full of cases in animals and humans where sx persist even after lengthy
treatment. There's no controversy here when you talk to researchers
*off* the record. It's no different than the doc who told you he'd
cured you with surgery, so leave him alone.
> I have discovered at least 3 physicians who run practices devoted to
> chronic lyme disease. They are never affiliated with hospitals and
> their criteria for including/diagnosing patients can be so broad as to
> be questionable.
There's no question that this happens, and with sinusitis, too, BTW.
But the doc who treated my child, and my doc, both are affiliated, both
got paid our negotiated insurance rate, and both dx and tx chronic TBDs.
The science behind the issue doesn't change just because some cash
hungry opportunists got involved.
The rest of the infectious disease community does not
> agree with their approach, and these ID people aren't doctors who
> dismiss the long term sequela of lyme disease.
Uh, yes, they do, if you're a patient. I've heard them say that if they
even think a family member has been bitten, they give them 4-6 weeks of
doxy. You can't get treated if you have the damned tick attached, if
you're not family! What they say, and what they practice clinically are
two different things. The IDSA guidelines are total political crap.
I just think these few
> doctors practice medicine outside the mainstream, and when I've spoken
> to one of them, there were claims of "miracle cures" of problems that
> defy cures.
Uh, Judy, I haven't found any superior qualities within the mainstream.
What I've found is academically affiliated docs and researchers saying
off the record that their careers are in jeapardy if the treat and even
publish truthfully about chronic TBDs.
> I hate to both see patients be told that their symptoms aren't real
> and the opposite, which are doctors who prey on the desperate.
The mainstream docs are equally predatory, but what they're protecting
is their careers, not wanting to fall out of stop. Docs like those we
use in my family are secure enough, and well read enough to reject both
camps, the opportunists and the IDSA.
Susan
judy.n - 05 Aug 2006 19:53 GMT
Susan,
I found my first case of babesiosis this year: I'm back in a private
practice where patients can actually afford to get labwork done--vs.
the inner city community clinics. I found that the rheum person
wouldn't help me, so I called upon ID. I think it's vastly
underrecognized--there was a recent article in our local paper about
how common it is, but they said it was usually self-limited in healthy
people.
I think we agree about the health care system and how messed up it
is.
I spent a few years in academia--I had idolized it from afar--and it
nearly killed me. I've also been personally harmed by national experts
and helped by local doctors who "think outside the box".
So, "do no harm" just isn't the standard anymore, if it ever was.
That's why we have to learn and advocate for ourselves and find the
people, like our allergists, who hang in there with us.
Judy
> x-no-archive: yes
>
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>
> Susan
Susan - 05 Aug 2006 20:22 GMT
> Susan,
> I found my first case of babesiosis this year: I'm back in a private
[quoted text clipped - 4 lines]
> how common it is, but they said it was usually self-limited in healthy
> people.
Mazel tov! :-)
I think it's not only underrecognized, but finding it on a smear or any
other lab is apparently rare past the acute febrile stage. My child
never tested + (though TBDs weren't looked for til after 6 mos. misdxed
with mono), but we suspect that babesia are what caused the early
enlarged spleen.
> I think we agree about the health care system and how messed up it
> is.
Sistah!
> I spent a few years in academia--I had idolized it from afar--and it
> nearly killed me. I've also been personally harmed by national experts
> and helped by local doctors who "think outside the box".
That's my point; the chronic Lyme docs who're just quietly taking care
of their patients without setting up infusion services, etc. are staying
below the radar, fearing prosecution or just wanting to do their jobs.
It's easy to label all of those on the activist side of the debate as
quacks with so many visible medical miscreants. But they exist in all
cases of chronic diseases where mainstream medicine isn't working, not
just Lyme. The difference is how much insurance money and unscientific
thinking is guiding the Lyme mainstream.
> So, "do no harm" just isn't the standard anymore, if it ever was.
Exactly. Now it's "do no harm that the rest of the community isn't
doing." :-(
> That's why we have to learn and advocate for ourselves and find the
> people, like our allergists, who hang in there with us.
We are so on the same page. My allergist strives to emulate Osler for
real, not just in fantasy, as his father did. Fortunately for me (not
for him!) he says he can't afford to retire. :-) I think his dad
practiced until they carried him out of the office.
Susan