Re: Phyllis: Activists Say YIKES We need to KILL the MD BILL! LOL


eugeneshapiroisapig wrote:
> why is it that docs with their own infusion clinics are looked upon
> with suspicion?

It is a conflict of interest. Medicare makes it illegal for a doctor to
have an ownership interest in such a clinic (not saying that is the
case in the clinic you describe). But even the appearance of being co
located tends to create suspicion. That's why.

> I agree with your comments about doctors rejecting patient
information.
> I do feel, however, that intelligent patients can be a part of
advocacy
> groups which work to inform doctors outside of patient visits in the
> clinic where rejection is the most likely reaction.

Yes though doctors tend not to want to participate in such forums. It
is hard to get "face time" with a doctor whether you're a patient, a
pharmaceutical rep bearing gifts or whatever. As to their CME credits,
most tend to get them either in the vacation setting OR in a very
focused setting--at a professional seminar or conference as conviently
as possible.

> I feel that the number one sin that most doctors commit is failing to
> listen to patients.

Studies show that when a doctor asks a patient a

This involves failure in history taking as well a question, that they
listen for an average of 8 seconds or fifteen seconds before cutting
them off.

You know what is really obnoxious? That question "what are your top
three symptoms" and they won't listen to the rest. Which is absurd--the
same doctor who doesn't trust a patient (as Dr House says 'patients
lie') now is trusting them to know what is the most important symptom
for diagnosis. But what if the most important symptom is fourth or
fifth? Another thing I hate, you go to the doctor as a Lyme patient,
you've made a list of things to discuss since you're cognitively
challenged, the doctor sees the list and says "I don't have time to go
into all that." Well whose problem is it that they deliberately
overbook? Whose fault is it that they haven't left enough time for all
their patients? See I never mind waiting to see a doctor who doesn't
give me short shrift because I figure they're giving other patients the
time and they'll give me the time too. But after waiting I don't intend
to get cut off.

And these jerks think they shouldn't be sued?

And Lyme "patient advocates" are all for legislation which would
protect them.

> failure to take into consideration patient views on disease. I may be
> an unusual case but more than once I have had a doctor tell me that I
> know more about the disease in question (not lyme) than did they.

Me too. Which is a sad commentary on THEM. At least they admit to the
depths of their profound ignorance though.

>If
> you can reach this point by being intelligent and rational (and
> efficient with time) and citing scientific and medical journals, you
> may be able to sway a physician.

MAYBE. In your case. I think it is rare to change their minds
generally. Particularly when they deal with it a lot. I was able to
make inroads most easily with the interventional radiologist who
inserted my PICC lines. He already thought the ID doc at his hospital
was a moron (and the ID colleagues too). So by the time of my third
PICC line it was me he was asking questions. Me who he called for a
referral when his kid got bit.

> I recommend writing a letter, which
> saves everyone time and effort and gives the doctor the opportunity
to
> digest information without being placed in an embarrassing situation
> where they have to admit a lack of understanding directly in front of
a
> patient during a clinic visit.

I don't know that they read them. I've written a few. At this point
HIPAA gives you the right to correct factual errors in medical records
which is an opening. However, that applies more to the doctor reporting
something wrong in your history--his report says you had a high normal
body temperature normally, but you said that your normal was 96 and now
you're running 99 or 100 chronically rather than "correcting" their
medical opinion that you don't have Lyme. But it is still an opening.

> Of course I have an advantage which many people do not which is
> direct access to most major medical and scientific journals and an
> ability to discuss some scientific subjects with a physician at least
> on their level if not above.

Several of us have similar access.

> As far as steere goes, I can only comment on his pervasive
> influence in medical journal articles and then his writings in
medical
> textbooks, his employment of PR firms, and his involvement with the
> ALDF which all testify to his pernicious obstinate and aggressive
> seeking behavior to ensure that medical professionals are exposed
only
> to his side of the story.

Yes. But still the marketplace of ideas says that if his ideas are bad
they shouldn't sell. However, I don't think doctors are very smart
consumers of medical information, they tend not to read thoroughly or
critically as we've discussed.

> Steere has been directly involved in (1) ALDF (2) dearborn conference
> and IDSA lyme panel (3) he wrote the horrible 1993 paper which he
> continues to cite to this day (4) he oversaw laboratory testing,
whose
> results look very suspicious, for the klempner project (these two
> papers, which he repeatedly refers to and treats as gospel, are the
> mainstays of the steerite repression)
> (5) lymerix vaccine development, worked like a dog for smithkline
> (6) has stated numerous times in media interviews his belief that
most
> post lyme patients are hysterical,hypochondriac, etc.

I don't know that he "worked like a dog for SKB now glaxxo. He was
"principal investigator" but I think it was somewhat of a ceremonial
position and that Dennis Parenti was much more hands on. In fact,
Steere published a paper on LFA-1 as a possible cause of OspA linked
"autoimmunity" just as the vaccine came out which troubled SKB quite a
bit.

Yes he does tend to cite himself quite a bit. I've noticed that about
him and Sigal, they are very self referential (and self reverential).
Much of what they write is NOT original research or new studies but a
bunch of opinion pieces masquerading as studies.

Sometimes they just reinvent numbers out of nowhere. For example, the
frequency of rash was stated as 40-60% in most studies early on.
Recently they cite a figure of 80 or even 90% (saying that if you don't
have it it probably isn't Lyme). But what study was the new figure
based on? If you track it back, I believe the origin was from studies
that used the rash as a major entrance criteria which artificially
inflated the number. Outrageous but true. Otherwise they just
reinvented it out of nowhere.

> however I must agree that there has been a major failure in the lyme
> advocacy community to effectively transmit information. My guess is
> that most everyday doctors have never heard of the numerous papers
> which establish persistent infection as a cause for post lyme. Steere
> and others very rarely mention these papers and I have never seen a
> mention of some of the more provocative such as the staubinger study
in
> dogs, or even sven bergstrom's paper on migrating birds reactivating.

And though I tend to agree with most of that work still the sheer
VOLUME of work on the other side outweighs (literally) that work. Not
in quality but quantity. Since doctors don't tend to read critically I
don't think they sort the wheat from the chaff. I don't think they tend
to think of the limitations of things like the Klempner study which
deliberately extrapolates its results far beyond what is fair. And
klempner has done nothing to caveat his work, he KNOWS how it is being
used and KNEW how it would be used. That study was NOT intended to be
the beginning of many questions but the END of all.

.