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What you don't know about Lyme disease

It is a disease that does not get much attention, but for those who suffer from Lyme disease or have close family members who do, it is an awful health problem for which they say there is not much help out.

Lyme is a burgeoning disease, spreading widely from Old Lyme, CT - where it was first spotted - and across the Northeast. The Centers for Disease Control and Prevention report that 95 percent of all confirmed cases reported in 2015 were from 14 mostly Northeast states, including New York.

It is a bacterial infection carried by tiny black-legged ticks carried by mice and transmitted to dogs and horses, which can also catch the disease. Those ticks can also carry other diseases that are equally dangerous.

The earlier Lyme is treated, the better. Untreated, the disease can affect the central nervous system, heart and joints. 'Drea Dole has Lyme.
"We'll look at the record of my time line of all different issues I've had throughout the years," she said. "I've been a sick person since I was like 14, in and out of the hospital, getting the ambulance calls for me at school, taking me to the emergency room and just all these weird things are happening, like, 'Well, your heart is about to explode' and then an hour later, it's completely fine and I'm discharged or I have swelling of the joints and muscle spasms. One time, I went to my first doctor appointment alone and I couldn't leave for hours because he thought I had MS and didn't want me driving."

People affected by the disease filled an Erie Community College South auditorium seeking help. State Senator Chris Jacobs sponsored the meeting and talked about how the new state budget has money for Lyme research and education for the first time, a total of $400,000.

"Although I am very happy and, again, this is my first year through the budget, this is wholly inadequate compared to other diseases," he said. "So I don't even want to tell you what the state is giving for the Zika virus."

It is not clear how much Lyme disease there is in Erie County. The county Health Department recorded only 55 cases last year, but members of groups like Lyme Western New York say that is way low, saying Lyme is not being diagnosed enough.

Health Commissioner Dr. Gale Burstein said local patients are probably catching homegrown Lyme.

"That proportion of people who report that they have never traveled outside of Erie County during the incubation period has also increased," she said. "So, whereas in 2010, it was only 20 percent of people who claimed they had no outside during the incubation period of Lyme disease, that has increased to 38 percent in 2016."

The problem for the average person is that this is the time of year when a lot of people are wandering around not wearing very much. Public health experts are calling on people who are outside to cover as much of their skin as possible and put on special chemicals to protect against ticks - although that can take the fun out of summer.

Can you protect yourself in your own yard? Cornell University entomologist Matt Frye said probably not, based upon a Center for Disease Control and Prevention study.

"That asks a question: If a yard is treated, will that reduce the incidence of disease? It did not," Frye said. "It showed a reduction in the number of ticks, but the incidence of disease remained the same, which means that people are finding or encountering ticks in other areas besides their own yard."

Is there no quick and simple treatment? The answer is no - mostly - since it depends on how soon the disease is caught. Diagnosis can take a long time and lead to long-term antibiotic use, often not covered by health insurance.

That brings up man's best friend and the equines that carry us. Both can catch Lyme. Cassandra Guarino is a serology and immunology associate with Cornell's Animal Health Diagnostic Center who studies Lyme in animals.

"This data can be used, as where the dogs are a sentinel animal - in other words, tracking the spread of disease," she said. "And so it's clear that not only is it here, but it's going to be more of a problem as time progresses."

Guarino's dog came down with Lyme and was originally misdiagnosed as having knee problems. Once diagnosed and medicated, the dog improved within three days using a drug that is not allowed on humans.

Mike Desmond is one of Western New York’s most experienced reporters, having spent nearly a half-century covering the region for newspapers, television stations and public radio. He has been with WBFO and its predecessor, WNED-AM, since 1988. As a reporter for WBFO, he has covered literally thousands of stories involving education, science, business, the environment and many other issues. Mike has been a long-time theater reviewer for a variety of publications and was formerly a part-time reporter for The New York Times.
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