The numbers are staggering.
About a third of all Lyme disease cases reported in the U.S. come from Pennsylvania, where the state tracks cases by county. In 2016, the most recent statistics available from the state, Butler County had the most cases with 641. Westmoreland was third with 577, and Allegheny County was eighth with 403 cases.
In Monroeville, there are a large number of cases of Lyme disease. So many that a captive audience came to watch the documentary "Under Our Skin" at the Monroeville Senior Center. For the center's director, Tara Gresock, the documentary is personal.
"It kind of felt like I stuck my finger in a socket. My whole body was, like, had that electrocution feeling, and sometimes it would last five or 10 minutes, sometimes hours," said Gresock.
Gresock said it took a year and at least 15 doctors before she was diagnosed with Lyme disease.
In 2016, Pennsylvania led the U.S. in Lyme disease cases. In fact, if you added up all the reported cases of Lyme from every state both south and west of the Keystone State, Pennsylvania still had more. Part of the reason is the state size, coupled with large forested areas, which are prime breeding grounds for the ticks that carry Lyme.
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"Pennsylvania has been the number one state for the last five years in the country," said Dr. Shannon Smith, a Lyme literate specialist in Penn Hills.
Lyme disease is caused by the bacterium borrelia burgdorferi and is transmitted to humans when they're bitten by an infected tick. Symptoms of Lyme disease can include a rash, fatigue, fever and joint pain.
Smith uses specific blood tests to test for Lyme disease, but not all doctors use the same method. Smith said other tests produce a high percentage of false negatives, and that's what happened to Bill Moore.
"I was tested several times, and tested negative several times," said Moore.
Moore was eventually diagnosed with Lyme disease, but it took three years to get the diagnosis. Now he's working to help others who are diagnosed.
"There wasn't really an active Lyme disease support group in Pittsburgh at the time, so I kind of started one," said Moore.
Moore now leads a region of PA Lyme Resource Network. He and others, including Gresock, have made it their mission to educate people about Lyme disease through community meetings.
"I remember us asking how many people suffer from Lyme, and out of the 100 people, I would say 90 percent raised their hands," said Gresock.
Each year, more and more people are impacted by the disease.
"Quite frankly, there hasn't been enough change in 10 years," said Andy Wilson, director of "Under Our Skin," which was released in 2008.
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"The underlying issues remain: that it's not understood well, and not understood well not just by the population, but by the medical community. And the medical community often downplays the severity of the illness," said Wilson.
"If someone had listened to me 10 years ago, when I told them I didn't feel good and really truly tried to find an answer to what all of my symptoms were and not just say, 'I don't know why you're feeling that way,' I probably wouldn't be sitting here today in front of you," said Gresock.
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