Sunday, April 25, 2010

Lyme Conference in San Ramon yesterday

Yesterday I went to a Lyme disease conference that was held in San
Ramon, California. There were a couple hundred people there probably
and some very good doctors spoke. For example, Dr. Christine Green,
Dr. Rafael Stricker, and Dr. David Martz. There was a fair amount of
discussion about the most recent bad news, which is that the IDSA has
announced its findings after a recent panel discussion and evidence
being presented by various doctors specifically from ILADS at a few
months ago. The first group stands for the Infectious Diseases Society
of America. The second acronym is for the International Lyme and
Associated Diseases Society.

(Pardon my capitalization and spelling, as I am dictating this into
the Dragon naturally speaking voice recognition application on my
iPhone, because it is difficult for me to type on a keyboard.)

There was great disappointment among all, because of the recent
findings of the IDSA, which essentially is that they found no need to
change their standards of care for the treatment of this horrible and
debilitating disease. This, despite significant evidence to the
contrary, evidence supporting effective treatment using long-term
antibiotics. I personally listened and watch the eight hours of
testimony given last summer at the IDSA meeting back east. Even my own
doctor, Rafael Stricker was one of the presenters. He had much
scientific evidence to present supporting the claim that long-term
antibiotic treatment is in fact needed, called for, and often
effective in the treatment of 'late Lyme disease.' However, due to
what I believe to be conflicts of interest between members of the IDSA
panel and the insurance companies involved in paying for the very
expensive long-term intravenous antibiotic treatment for the disease,
the vote by the panel was, I believe, skewed and biased. The panel
originally heard new testimony on this issue as a result of a case
brought by the Atty. Gen. of the state of Connecticut. See here:

He believed there was bias on the panel that affected the care and
treatment of thousands of individuals with this disease, and so forced
the issue.

Now we are back to the drawing board with many states and insurance
companies still refusing to support the care needed to treat the
disease. I myself, have paid over $1000 a month for my antibiotic
treatment. This is out-of-pocket, in addition to the over $600 a month
I pay to Blue Shield, my insurance company. And that does not include
my doctor visits which are about $300-$500 per month, most of which
comes out of my pocket because my doctors are not enrolled in the
insurance company panels.

Why these doctors choose not to be on the insurance company panels is
another question, one which I am researching. It has mostly to do with
the difficulty in collecting from the insurance companies, I suspect.
But it is a critical issue, and I do wonder about the profit motive. I
believe that treatment for this disease should be affordable, and it
is unconscionable that there are many who go without treatment, and
often become very sick and sometimes even die as a result of lack of

There is, for good reason, I believe, a cadre of doctors who believe
strongly in the efficacy of long-term antibiotic treatment -- either
orally or intravenously -- for this disease.

Therefore, it was very disappointing to hear the new findings of the
IDSA, essentially stating that the current standard of care (which
amounts to about one month of the simple antibiotic doxycycline), is
substantial and adequate in all regards for the treatment of this
nefarious disease.

I write this as I lie in bed, limbs shaking, speaking into a computer,
because I cannot type. This is significant, from a previous author of
47 large books approximately 1000 pages each, and who used to be able
to earn a substantial living. I am now incapacitated and about to
apply for disability as a result of my incapacitation. Luckily there
is an application for the iPhone that allows me to speak into it and
to write at least short pieces such as this.

No comments:

Post a Comment

Please be constructive in your comments.