Re: In Praise of Lyme Activists

a_weisman_at_yahoo.com
Date: 12/29/04 

Date: 29 Dec 2004 11:56:42 -0800

GregGerber@hotmail.com wrote:
> Weisman, I understand your position regarding advocacy and support
your
> right to voice all your concerns and also think a critique is
helpful,
> but I do not want to provide transcripts of people's statements for
> your commentary. I am sure you can do that very well on your own just
> by going to their websites.

Well look, I said something that was NOT specific to LDA. YOU later
claim the LDA is the only "official source"

I disagree.

So YOU claim "the pat" has said what I said. So it isn't up to me to
prove the negative but to you to prove the positive.

The LDA makes me SICK to my stomach. I HATE their self serving self
aggrandizing website. The last time I visited it I saw NOTHING along
the lines of what you're saying. So if it is there you can provide it.
If not, I'll just assume it is wishful thinking on your part because,
NO, I've sure never seen it or heard it.

I wouldn't say otherwise for no reason. I wouldn't criticize them for
the sake of doing so. My criticisms and critiques (a better word) are
specific and fact based (though certainly MY OPINION based on the facts
as I know them).

So if you say otherwise, really, why NOT show us? Seems like it would
be easier for you than for me.

Not that I care since I disagree with the premise that the LDA is the
only "official source" and that all the rest is "noise" generated by
"random patients on the internet" I honestly just don't see a whole lot
of difference between one and the other.

And do you deny that many of the non official according to greg gerber,
sources, say what I have said? If so, please go waste a few hours of
your life on the LymeNUT reading the crap spewed over there.

> You and I differ here in our view of some
> individuals and events; maybe one day we will meet and discuss all
this
> in person, and I am sure it would be a fun discussion with a lot of
> strenuous debate. But I cannot play internet straightman to your
> detailed dismantling of people I like and respect, whose hard work I
> have seen up close.

I'm not asking you to play internet straightman but to back up your
statements.

And or explain and clarify them.

>i am sure you will do very well without transcripts
> provided by me --and that your commentary, if handled evenly (and you
> neeed to watch it there) will help to keep everyone on their toes.

LOL Yeah Lymeland is a bunch of ballerinas as a result of my
commentary! Yeah dancing the nutcracker maybe!

> You are right --I used clone and strain interchangeably when I should
> have explained. I am referring to Osp C clones. Those strains that
are
> strictly clonal often do not disseminate beyond the rash but those
that
> undergo genetic exchange and thus (for the OspC gene) are not clonal
do
> disseminate. I hope this provides the clarity you asked for. If not,
> let me know. The point is that most of those considered "treatment
> successes" in studies of early Lyme disease never had the
disseminating
> variety, based on current work. This means that by percentage, true
> disseminating early Lyme disease must be subject to far more
treatment
> failure with the standard treatment than the studies suggest. Let me
> know if I am still being unclear. Gregory Gerber

Well I don't disagree BUT my point was that even accepting the figures
in those studies (for the sake of argument without ADMIRING the work or
the author) the treatment failure rates are astronomical!

I remember a lecture given by the [in]famous Dr Burrascano about a
dozen years ago or so in which he presented a series of slides citing
particular studies and their treatment failure rates using the Steere
Yale ALDF regimen even using their unrealistic entrance criteria and
generous to their point of view definitions of "success" using only
short term follow up, even with all those limitations the treatment
failures rates ranged from 25-35 % in every study!

And immediately that struck me as unacceptable and when I heard and
read Steere et al using the word "adequate" treatment I gasped,
literally gasped. How is it "adequate" when so many people fail and end
up disabled debilitated and miserable? How is that success? Sort of
like landing on the aircraft carrier and declaring "mission
accomplished" but more than a thousand us soldier's lives lost, and ten
thousand grievously injured, not to mention countless others of other
nationalities and civilillians too, not to mention the well over
100,000 iraqi lives lost, well is that truly "victory"

So my point was meant to say "hey there are too many treatment failures
even accepting their figures" though I agree with you there are LOTS of
reasons to suspect that their figures understate the problem as their
figures do in every instance, epdimiology, the incidence of false
negatives on testing, treatment failures etc, soup to nuts.