Re: NIH Intramural Study

a_weisman_at_yahoo.com
Date: 01/12/05 

Date: 12 Jan 2005 07:25:19 -0800

a_weisman@yahoo.com wrote:
> Neurolyme@HotMail.com wrote:
> > Phyllis,
> >
> > Your condescending and evasive response is typical of the self
> > appointed "leadership" of the Lyme community and is deserving of
the
> > type of vitriole y'all have been receiving from Weisman et al.
> >
> > This question is actually for Weisman, who in one of his lengthy
> > threads posted a quote by Klempner that PCR positive subjects would
> be
> > directed to the contemporaneous intramural NIH study.
> >
> > It may be my neuroborreliosis, but I have no memory of any
discussion
> > of that study in even the most minimal way. Was it completed?
What
> > were the published results, if any?
> >
> > A_W,
> >
> > I posted this under a new thread, since the previous posts were so
> > numerous that I couldn't find the original post. Also, if there is
> > indeed useful information, it might be helpful to have it all
> > consolidated under one thread.
> >
> > NeuroLyme
> >
> >
> >
> > pmerv@direcway.com wrote:
> > > if you go to PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
> > > and type in "marques a neuroborreliosis" or just "marques ar" you
> > will
> > > find a few things. Marques' name appears on at least one
"post-Lyme
> > > disease syndrome" paper, and she is also looking into
autoimmunity.
> > You
> > > might try contacting Sandy mas74@aol and see what she knows about
> it.
>
> I know what you mean Neurolyme. Instead of providing an answer
> directly, she provides references to other sources. Why?
>
> Hard to grok.
>
> Anyway, here is a list of abstracts in which Marques was an author or
> coauthor, some probably didn't arise from the study, some came before
> useful study results (if there were any) would have been available.
>
> Notice that she's big on the C6 test, and the advocacy for that test
is
> something coming from this study, along with the matrix
> metalloproteinases stuff that Klempner and she seem to be pushing as
a
> "useful" marker for neurolyme.
>
> What I see is that the more we keep pushing for a "reliable
diagnostic
> test" as some kind of Holy Grail in Lyme (this is a big part of the
LDA
> agenda and the national bill disaster that hopefully will never come
to
> be) the more likely we end up with that lousy crappy C6 test which if
> anything is worse in detecting chronic Lyme (or uncured Lyme as Art
> Doherty put it) than the texas two step ELISA/WB combo according to
all
> patient and llmd reports (if they're to be trusted).
>
> What I do NOT see is all the blockbuster info from the intramural
study
> that some of the patient participants reported, particularly evidence
> of persisting infection despite prior treatment and treatment in the
> study.
>
> Is that stuff buried? Or still to come out?
>
> I don't know.
>
> I do know that if it remains buried and never presented, it won't be
> FOIAble. So all the spinal taps and pain and suffering could go for
> naught.
>
> By the way I'm not sure if the last abstract is even her, but it came
> up under a search for Marques and is Lyme related.
>

Also disturbing (to me) is the use of the phrase PTLDS (post treatment
Lyme disease syndrome) throughout her work which in itself implies that
treatment is done and that it is a SYNDROME rather than a disease
caused, at least in part, by persisting infection.

All of her work (and Klempner's) has a strong and obvious bias towards
"autoimmunity" rather than the kind of hyperimmunity greg has discussed
which involves persisting infection triggering a hyperimmune responwse
which is destructive.

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