Lyme Disease Forum in Glens Falls, NY

I attended a Lyme Disease Forum at the Crandall Library in Glens Falls, NY today from 10am- noon.

It was hosted by Senator Betty Little and Assemblymen Dan Stec.

tick signThere were four people on the panel: Dr. Bryon Backenson, an epidemiologist from the New York State Department of Health; Dr. Timothy Sellati, from the Trudeau Institute; Dr. Jennifer Rowley, MD, a local Infectious Disease Specialist; and Holly Ahern, Associate Professor of Microbiology, SUNY Adirondack.

Dr. Jennifer Rowley, MD seems like she understands that Lyme is a crisis, an epidemic and that it is difficult to treat in many cases. She seems like she is one of the good doctors out there. There were people in the audience who had seen her and they said she is kind and understanding.

She did not talk long, but when she did, she pointed out that there are many people who are suffering and not a lot of science based medicine that can help them. She stressed that more money needs to be put toward research so that doctors have more options for treatment. It's a slippery slope these doctors walk. If they treat, they can be sanctioned.

tickAs many of you know, the pediatrician who treated my son for Lyme Disease is being investigated by the OPMC. She is having to spend her own money on her defense lawyer and she is in need of help to defend herself against this witch hunt.

One thing that was brought up that I completely agree with is that the money allotted for research is disproportionate for the amount of new cases that are reported of each of these diseases. More money hast to be put toward the research of all tick borne diseases, including Lyme Disease.

  Disease      Annual new cases 2012   Money for Research 
West Nile Virus     5,700   $29 Million
Hepatitis C     1,300   $112 Million
HIV / Aids     56,000   $3 Billion
Influenza     73,000   $251 Million
Lyme Disease     312,000   $25 Million

When you take a look at those numbers… remember, those are NEW cases EACH year… It was brought up at this forum that according to those numbers, that would mean there are 3.5 million people in the U.S. that are sick from Lyme Disease.

Let's get some money for research to help patients AND doctors!

The Physician Protection Bill was brought up and it would protect physicians… but it would not help the physicians who are already being brought up on charges! S5520-2013 – NY State

There is another Bill in New York that would require health insurance to cover long term care for patients with Lyme Disease and other Tick borne Diseases. S541 – 2013 NY State

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3 thoughts on “Lyme Disease Forum in Glens Falls, NY”

  1. For change to occur, funding to increase, and physicians protected, advocacy starts at the grass-roots level. For every Susan G. Komen, MADD, and Michael J. Fox Parkinson’s Foundation, they began when someone they knew and loved were affected. Several years ago special needs children were placed in “homes.” A group of parents decided they would provide their own “homes” filled with care and love. The plight of special needs children and adults have changed dramatically. This starts with you. It’s a 24/7 job but the results you experience will forever change the face of “Lyme Disease.” Get out there, be loud, and bang on doors until you are heard. Channel your energy into change! One person CAN make the difference.

  2. Thanks so much, Renee! You are so right. Together we are strong. Those who have had their lives changed by Lyme Disease and other Tick Borne Diseases are standing together… if they can stand at all. And those of us who have gotten better are standing for those who are bed ridden.

  3. How do you find out about these talks. I would like to get involved with the fight for more money and research for Lyme!!! Live outside of Schenectady. Please include me if you have a group or newsletter.
    Nice article. Also suggest reading
    why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease by Richard Horowitz, MD

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