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Sen. Gillibrand takes on ticks in Hudson Falls

July 17, 2017 06:26 PM

It was four years of weird symptoms that just kept getting worse for Sue Clary's husband. Doctors tested the Salem man for Lyme Disease right away, but even though he had it the test came back negative.

"It's really hard to watch somebody you care about in so much pain. Because we're talking about crying out, going into the fetal position because it's so much pain," said Sue Clary.

Eventually Bill Clary couldn't work anymore, sometimes he couldn't walk or even read. Bill and Sue went from doctor to doctor looking for an answer.

Senator Kirsten Gillibrand (D-NY) says there are lots of doctors who don't know enough about the disease.

"The medical community doesn't know a lot about Lyme in some instances. Those who studied medicine 20 or 30 years ago...don't have the experience diagnosing it. And when you get a false positive, it's devastating because you're not getting treatment," said Gillibrand.

Sen. Gillibrand was happy to announce the Trump administration started to establish her tick-Borne disease working group at a press conference in Hudson Falls on Monday. It is a provision in her Lyme and Tick-Borne Disease Prevention, Education, and Research Act, which became law in December as part of the 21st Century Cures Act.

The working group is supposed to gather the best research available on the tick bite diseases and update doctors and the public.

"What I found amazed and appalled me. We have a lot of knowledge about this disease, but it's been pushed aside in favor of the current status quo CDC version of how this disease is supposed to go," said Holly Ahern, associate professor of microbiology at SUNY Adirondack.

Ahern's daughter was also affected by Lyme. Her college-aged daughter also saw a number of doctors to pinpoint the reason for her symptoms after a false positive Lyme disease test. Eventually, they discovered it was Lyme.

Doctors finally find out Bill Clary had Lyme disease as well. Unfortunately, now he has lasting neurological issues. Sue is hoping this doesn't have to happen to others in the future.

"Recognizing that there is a chronic face, and if you don't want it to become chronic, then you must learn how to prevent it," said Clary.

In 2015, there were 3,300 new cases of Lyme Disease reported in New York. The CDC estimates the actual number is ten times that amount. The CDC lists 15 other tick bourne diseases. That includes Powassan, the rare and dangerous disease that killed a man in Gansevort last month. His children looked on at Gillibrand's press conference in Hudson Falls on Monday.

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Asa Stackel

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