From: jod@equator.com (John Setel O'Donnell)
Subject: Re: CFIDS and Lyme
Organization: Equator Technologies, Inc., Seattle, WA
Date: Mon, 7 Sep 1992 15:09:07 GMT

In article <16335@pitt.UUCP> km@cs.pitt.edu (Ken Mitchum) writes:
>
>... you don't have to know someone
>personally to know that they are a quack. People who prey
>on the fears of people who think they have Lyme and diagnose
>it in everyone, while financially benefitting fromo repeatedly
>giving IV antibiotics without justification are not just
>quacks and frauds, and should go to prison.

Here's this calumny again.  Those who treat Lyme with IV antibiotics
do so out of greedy self-interest, and are preying upon their innocent
and fearful patients, offering them false hope.

I submit that your position is a despicable mischaracterization.
Perhaps this makes you feel comfortable with your position.  Perhaps
this allows you to ignore the difficulty of properly diagnosing Lyme,
and the disastrous consequences of mistreatment or misdiagnosis.

People's lives are being destroyed because of the approach toward
Lyme that the mainstream puts out.  And the only response to 
desperate attempts to cure late-stage Lyme by the mainstream is
"quack."  "It doesn't exist."  "It's something else."  This 
despite mainstream European research results dating back 4 years
documenting successful culture of Bb in individuals treated with
the mainstream protocols: treatment failure, persistent infection.

For most bacterial infectious diseases, if one antibiotic regimen
does not work, the physician orders another, until infection is
cleared.  Lyme is difficult to treat (probably as difficult as TB);
yet when the "mainstream" antibiotic regiment does not work, the
patient is called names or the diagnosis is changed.

--- 
I speak out of personal experience, and from what I learned along
the way.  I've had Lyme for 4.5 years.  For the first 2 years I was
able to work only intermittently.  (Lyme is expensive.  In addition to
the costs of treatment [one survey showed that the average late Lyme
patient spends $84K on medical care], the costs in my case included
the failure, due partly to my illness, of the computer systems company
I'd cofounded 4 years earlier.  This resulted in a loss of 170 jobs
and $53M in investment capital.)

I saw 8 physicians, including 3 of the recognized mainstream, before
finding the guy I work with now.  Despite history of insect bite and
the classic ECM rash, the mainstream guys all told me I didn't have it
(in two cases, after a single course of antibiotic yielded improvement
which was followed by relapse).  They told me I was depressed; I tried
their psychoactive drugs, which made no difference.  They told me it
was something else; later, upon finding another physician, I tested
positive on the antigen (direct) test and began getting proper
treatment.

*Due to the delay in getting proper treatment I developed late-stage,
*currently incurable Lyme.  This despite my recognizing the ECM rash
*and seeking treatment the day it appeared.

What happenned to me shouldn't have happenned to anyone.  Information
was available at the time I was treated regarding the high relapse
rate of the protocols used in my initial treatment, and regarding the
documented existence of treatment failures (persistent infection).

The US mainstream ignored research results from Europe and from
American clinicians in endemic areas, in their efforts to position
themselves as having found a "cure" and as managing public "hysteria."
And they're doing it TODAY. Last year, Lyme research received less
than $8M.  90% of this money was spent on studies which have no
possible relevance to finding a cure.  And Gordon (and now Ken) are
joining up to "manage public hysteria" and join in that high
intellectual exercise, the ad-hominem attack, to justify the
mainstream position.  Boo.

Still, it's my persistent hope that voices of experience can reduce the
ignorance and bigotry about Lyme in the mainstream medical
community. 







-- 
- - -
John Setel O'Donnell                      jod@equator.com
Equator Technologies, Inc.                206-328-6544 voice/fax
Seattle, WA                               Read everything by Alice Miller.
Newsgroups: sci.med