Re: you really want to be active in the fight for lyme rights?

GregGerber_at_hotmail.com
Date: 12/25/04 

Date: 25 Dec 2004 08:40:36 -0800

weisman, it is YOU who really do not grasp the science involved here,
and have a serious knowledge gap (I won't make this subjective by
calling it naive, but I could still drive a truck through it.)

The disease that is Lyme occurs at the interface of the host and the
organism --the interaction of the particlar host and individual
spirochetes inside the host. Human Lyme is not murine Lyme is not
canine Lyme. For one thing, different spirochetal strains are able to
disseminate and thus cause chronic disease in different species. Lyme
cannot be studied nor treatments created through test tube science. The
"disease" is not the same in tissue culture as it is inside us. Other
animal models can only be suggestive because none replicate, exactly,
the genetics and immune cascades observed inside us.

This reality is particularly relevant in Lyme because the spirochete
changes continually, in each tissue of the body, changes continually
over time, and uniquely and variably across a range of the genetic
spectrums of each and every individual host. This disease --more than
most other infectious diseases-- is dynamic and uniquely suited to each
tissue, to each host, and to each situation over the vector of time.

Without the ability to distinguish between disemminating and
non-disemminating organisms in the HUMAN host, for instance, the riddle
can never be solved. This is just one of MANY variables. This means
that patients in large number need to be partners in order to discover
the true pathophysiology of and treatment for this disease. Unless
chronic patients sign on to a research program in a major way, the
significant "crunching of numbers" needed to deliver a more efficacious
treatment will never be served.

Look, NIH and CDC have fostered a simplistic view of a complex
biomedical dynamic --chronic Lyme disease-- and in doing so have swept
us under the rug. We, the Lyme patients, have helped enable that --to
our great devastation. We need to insist on the complex view, and then
we need to power --through our own pathophysiologies, which only we can
provide-- research into our disease. I would say we are relevant to a
partnership, indeed. The specific disease we need to study exists ONLY
inside us, just as the CF patients' genes exist only in them.

I believe in making a value distinction between the two you are being
fascile without any deep understanding of the science.

In short, I believe that a non-profit or for-profit effort run by the
Lyme community could, perhaps, fund initial pilot projects which could,
in turn, be used to find a biotech partner. I believe we could build
the case for our own value here if the right strategy was formulated
and the right executive was in charge.

Finally, when I use the word "partnership," I am not restricting this
to a 50-50 split of profits. There might be NO profit for the patient
community but just a seat on the board, for instance. There are all
kinds of ways to cut a deal to everyone's mutual benefit.
Gregory Gerber

Relevant Pages

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  • Doc.#0002 - 1001 Reasons why CDC Testing is Crap - ILADS position paper
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