I am forwarding this
posting because I believe this form letter is useful not only for information
to be shared with the NY legislature,
but if compiled, could serve as valuable research.
For my purposes, you do not have to put your name on it, but in order for
me to eliminate duplicates, I need you to put some identifier on it. Therefore,
place your initials (including middle initial) and month/day/year of your
birthdate on the top right hand corner of each page.
everyone fill it out, and
then mail a copy
to NYS and
also one to me
(and keep one for yourself).
My mailing address is :
J.J. Burrascano Jr. M.D.
139 Springs Fireplace Road
East Hampton, NY 11937
Have all your contacts who have Lyme fill this out also, because the
more surveys we have, the more valid the statistics.
Many, many thanks!
(1) The point is,
now we must send in articles that support our viewpoint.
Also send in your testimony. Tell
Anything sent in will be made a permanent part of the hearing
Annotate them- that is, place a note on the front of each
article that states its significance.
Tell them about
about mis-diagnosis, no diagnosis, "Lyme doesn't exist here",
about the unreliability of your blood tests for Lyme,
about the overreliance on serologies, and ignoring the clinical
about the recommendation
that you need mental help,
that you just need a vacation,
about the misdiagnosis
that you have chronic fatigue or fibromyalgia, or
that you should ignore it and get on with your life,
how many doctors you had to see before proper diagnosis,
about co-infections and how their discovery made a major
difference to you.
Then spell out the human side of this:
the inadequate treatments,
the statement that you cannot still have Lyme, because you
had your four weeks of therapy,
how antibiotics make you feel better, with objective benefit,
thus disproving placebo effect,
how the insurance companies have made pronouncements about
your diagnosis and treatment, without ever having had their MD's even see
or examine you (malpractice in any other circumstance).
Tell them that the whole world is looking to New York State
to cut through the BS and advocate on the side of the Lyme patients.
And thank them for their hard work and attention.
how Lyme has changed your life, and that of your friends
Let them see that no State Board has the right to restrict
how your personal doctor treats your Lyme, because
every patient with Lyme is different, and
there, rightly so, is no absolute standard for diagnosis
or teatment that should apply to every patient and every MD.
You may want
so one who reads it can get the idea,
to summarize this briefly in one paragraph, or
with buillet points on the first page
My feeling is that the committee will be impressed if they
receive a mountain of documents. Make it so they cannot ignore us, and
feel empowered and obligated to move ahead.
then go on to tell your story in as much detail as you want,
don't withold anything, just
be careful not to slander anyone or do anything else that
may come back to bite you.
Let's not waste this opportunity.
P.S.-the idea also is that (2) we need 1,000 people
to show up in Albany!
You may use the "public hearing reply form" available
at Lyme Disease: NYS Leg
Hearing. I understand it is on the FAIM
version: 7.Nov. 2001
location of this page is http://www.Lymenet.de/nyshearing.htm
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