Re: Victims show support for LD bill

a_weisman_at_yahoo.com
Date: 03/18/05 

Date: 17 Mar 2005 16:03:20 -0800

eugeneshapiroisapig wrote:
> Look it was a "treatment study" with entrance criteria which excluded
> anyone with a real likelihood of having active infection--and the
> treatment was anti-infective.
>
> I can accept that it is what it is.

Well that's a good attitude--philosophers call what is "facticity."

To the extent that there is "reality" it is good to recognize it. Many
Lymies don't.

HOWEVER, I find the absurdity of the "treatment study" for people
deliberately selected to be the least likely to benefit from treatment
to be hard to accept.

In fact, the "treatment study" served two purposes:

1) it was a "strawman" setup to dismiss "long term treatment"

2) it was really a stalking horse for the true interest of Steere and
Klempner--"auto" immunity

> However, what I cannot accept is
> the use of these study results to justify scientific positions and
> treatment policies which really cannot be justified based on these
> results.

Absolutely right. The truth is that whatever results, assuming they're
true (assuming klempner didn't lie for example about PCR results) that
the results can ONLY be fairly applied to patients in the study and
perhaps any out there similarly situated--those who would meet those
entrance criteria (which were SO absurd that they actually had
difficulty fully recruiting the study and in fact never did fully
recruit or even close).

The study results CANNOT fairly be applied to the "heartland" of
Chronic Lyme patients.

But inevitably they have been.

Same thing with the two doses of doxy study--even putting aside other
criticisms of the approach--it can only be fairly extrapolated to
patients in the relatively unique position of having a bite and rash
and getting to the doctor and getting that Rx within three days.

>These results have been cited far beyond their scope. And
> unless someone reads carefully, they won't realize this.

Of course not. I'd suggest that this is NOT an accident and is NOT
carelessness, but fairly deliberate.

And Klempner et al have made NO effort to caution people about the
limitations of the study and application of results. In fact Klempner
himself pretty much extrapolates the results well beyond anything fair
in the NEJM article, and in his lectures.

So it is more than the results being misused by others. He misuses them
and certainly knows that others do and makes no effort to provide an
appropriate caveat.

> The administration of placebo and treatment with a regimen of
> parenteral ceftriaxone for 30 days, followed by oral doxycycline for
60
> days, had similar effects on the patients' health-related quality of
> life. This antibiotic-treatment regimen was selected because of the
in
> vitro and in vivo activity of both of these antibiotics against B.
> burgdorferi and because they are effective for the treatment of
> neuroborreliosis.1 Experience with other chronic infectious diseases
> caused by persistent bacteria (e.g., syphilis, tuberculosis, and
> helicobacter infection) suggests that it is unlikely that more
> prolonged antibiotic therapy or a different combination of
antibiotics
> would result in greater improvement than was observed in this study."
>
> Another thing worth mentioning is the oversweeping generalization
about
> bacteria. Is it really scientific to make a statement such as "if it
> doesn't work in heliobacter or treponoma, it won't work in borrelia"

Absolutely. On its face the 21 or 28 day course for treating Bb shows
that it is NOT similar to other bacteria. Most bacterial infections are
treated for seven to ten days.

But Bb is comparatively slow to divide and reproduce so from a
pharmokinetic standpoint requires much longer treatment (and treatment
with agents with a loooooong half life).

> Borrelia are bizarre bacteria, most proteins have no known
> homologs in the "tree of life", in addition to the fairly unique DNA
> structure. For instance, 14.5% of plasmid genes code for os
> lipoproteins; in heliobacter and treponoma that percentage is far
> lower, something like 2%.

Yes absolutely the TIGR folks have noted the large number of plasmids
and the fact that the function of some is entirely unknown.

> I found this statement to be especially disturbing. On any other
> subject, the peer reviewers would have ripped klempner a new hole for
> making a statement like this.

LOL Well that Steere "Overdiagnosis of Lyme" article is one of the most
glaring examples of bad science exacerbated by worse logic resulting in
bad medicine EVER.

> This is not scientific thinking; it is dogmatic robopolicy speak.

Look a LOT of what Steere and Sigal and other Lyme "experts" write is
NOT science study or medicine but amounts to opinion pieces. Astounding
to see it fly by peer review.

> probably brought on by promise of a new position at BU (thus escaping
> scientific misconduct investigation at tufts) and lots of grant $$$
> from NIH officials.

I have no information or reason to believe that there were scientific
misconduct allegations at Tufts. Do you?

> It is interesting that in the wake of this study, both steere
and
> klempner switched out of tufts.

I don't think such things are at all unusual in academic medicine
circles. Unless you have reason to, I would be wary of reading too much
into it.

> I think people are armed with evidence and invective. Money is being
> raised...despite the fact that many LD patients are bankrupted by
their
> experiences.

No significant money is being raised. For the most part $$$ raised in
Lymeland is not well spent in my opinion and in my observation.

Really considering the real impact of Lyme and the incidence of it, the
money being raised is paltry.

> As far as legislators setting medical agendas, that's a valid point.

Thanks. And please note, once we ask for it, we condone it. So if the
agenda that is set is one we don't like, we have only ourselves to
blame. And having condoned it when we thought we'd like it, we look
like sore losers if we get it, don't like it, and then condemn it.

> However it is impossible to have a medical system which is not under
> the influence of the government.

Yes but this is different.

This is government mandated treatment.

>95% of post graduate ME in this
> country is funded by taxpayers.

But funding has to be content neutral. The government cannot endorse a
particular point of view.

>20+ billion a year of medical research
> by NIH - the taxpayers. Funding decisions are made at the
governmental
> level which dictate health and research policies and direction.

But it is NOT made by the legislature but by NIH. To the extent that
Congress even suggests funding for particular things, it is advisory
and not a good idea.

NIH should set the priorities NOT congress. If NIH does a bad job we
need better NIH personnel NOT congressmen or senators doing something
they have no expertise of background for.

> I personally am in favor of sweeping reforms in the medical
> community, profession, and academia.

Emphasis on "Sweeping" as in we should take a BIG broom and clean
house.

> Unfortunately nobody has the balls
> to do what needs to be done. there is a kind of gridlock which has
> fossilized minds and encouraged the mindless pursuit of money and
these
> things are really fucking people up.

Yes the commercial influence is further corrupting.

But medicine from an intellectual standpoint features a great deal of
intellectual rigidity rather than flexibility which is why when changes
happens it tends to be generational.

> For one thing, I would like to see the government either totally
> stop funding medical research and medical residency, or take the
whole
> rotten structure over.

I don't necessarily agree with the all or nothing approach.

>What is especially needed is a focus on doctors
> entering fields such as internal medicine which is deficient. I would
> even go so far as massively increasing the number of medical school
> students, with the proviso that the extras have no choice but to
enter
> internal medicine after they graduate and such.

I don't agree with that either. I don't think more doctors equals
better healthcare. In fact, I tend to think that less is more.

> I would also mandate changes which limit the number of patients
a
> doctor can see on a daily basis (with emergency exceptions).

That might be a good idea. Along with other fundamental reforms
including getting rid of HMOs or at least profit incentives to limit
care either in terms of time or money spent.

Also evidence based medicine needs to be recognized for being a good
idea which is subject to the potential and reality of real abuse. The
limitations of EBM need to be recognized.

> No more
> than two patients an hour. Of course we'd have to greatly increase
> the number of physicians in this country, and they don't want to do
> that because that means real competition and declining incomes as
> opposed to what we have now which is everybody gets a job, and
> everybody makes a lot of money. The system is rigged to ensure high
> physician salaries to the detriment of patients. Just one symptom of
> the diseases of avarice and vanity which plague medicine.

You have to realize. The great and brilliant insight of HMOs (for
profit ones) was that they could pay doctors MORE to limit care.
Because doctor's incomes are a controllable expense but the potential
costs of care are a potential bottomless pit. So they decided to pay
doctors MORE to give LESS care and doctors responded.

And they got rid of the doctors who wanted to give more, created a
monopolistic control on the market and squeezed the caregivers out and
rewarded the care withholders. After getting rid of caregivers they
could then begin to ratchet down salaries for carewithholders too.

Brilliant business strategy.

A recipee for disaster for health care.

> In addition to LB, I have an attendent endocrine problem.

Sorry to hear that.

> The wait list
> to see the special endocrinologist, who is the only person in the
state
> qualified to treat my type of disorder, is 6 freaking months! That's
> absurd and outrageous. The last time I saw this doctor, he said
"well,
> I shouldn't have scheduled you to come back so soon...I'll see you
> again in about 6 months". Literally, less than 5 minutes.

Yup.

Which is another reason the legislation about Lyme SUCKS. Take the CT
legislation for example. It says that doctors of certain SPECIALTIES
ONLY can prescribe for Lyme (neurologists and rhematologists and
infectious disease doctors). Even assuming that there was more than
half a dozen of the above in the entire world who are "lyme literate"
how long would it take the between 250,000-500,000 who get Lyme
annually to see them?

And look at the MD legislation. It hinges diagnosis on CDC definitions
and/or "acute infections"

That's not a good thing for us.

(not to mention that the payment mandate is preemted by ERISA so for
most people who have insurance it has no effect).

Each of the pieces of legislation has been fundamentally flawed and had
real potential to make things worse not better.

Back to the CT legislation. It set a "floor" for IV and orals (with the
approval of those specialists) but prior to the law most insurance paid
for unlimited orals (but limited IV). The bill got really no more IV
and the "floor" for the orals became a "Ceiling" and companies refused
to pay more.

Dr Jones in CT quickly reported that he was now having problems getting
insurance to pay for orals which he never had before and he was having
no better luck with payment for IV.

This was predictable and so have been the problems with each bill.

The RI legislation was no help since there were pretty much zero
"llmds" in RI before the bill and since? pretty much "Zero" which
belies the Phyllis argument about a "chilling effect"--it wasn't the
"chilling effect" but the fact that no doctors there agree with that
treatment approach.

Meaning the solution is NOT legislation but changing minds. IF minds
are changed there's no need for legislation. With legislation but no
changed minds there's no solution.

> I take medication related to this, so basically if there needs to be
a
> change, I have to wait 6 goddamn months before the doctor actually
> makes a change.

Well I guess you could write or FAX or call. Hopefully.