DORSET, Ohio - At the age of 12, Megan Tilton was on a weekend vacation with her family when she suddenly fell ill.
"At first it was a lot of cardiac issues. I had a lot of heart palpitations, tachycardia. I would pass out a lot when I was active," Tilton said.
"She had a fever, ,very weak, felt like she was going to pass out. Her heart rate was racing and very tachycardic. We came home, we visited the pediatrician on Monday morning. The flu-like symptoms had gone away, but her heart rate was still racing and he then felt like she needed a cardiac workup. So that's kind of where it all began," said Connie Moschell, her mother.
For the next two to three years, Tilton said she experienced a host of other puzzling symptoms.
"Over time, I started to have things like joint pain, muscle pain, headaches, fatigue weakness, some neurological issues like light and sound sensitivity. A whole bunch of different things," Tilton said.
The timing seems to coincide with something local veterinarian Dr. Charles Curie said he started to see in his practice.
"I was born and raised here in Ashtabula County, and my background is farming and outdoor pursuits and outdoor hobbies, as well as practicing veterinary medicine here for 41 years. I never saw ticks in Ashtabula County until about that time period, that 2009-to-2010 time period, and at that point, it began to escalate where we would see more and more ticks every year," Curie said.
Ultimately, Moschell said she was convinced to have her daughter tested for Lyme disease.
"Megan was also doing a research project at school, and she chose to research Lyme disease and everything she read matched. She would call me over to her project at the computer and, 'Oh mom, this is me and this looks like me,'" Moschell said.
Ten years later, Tilton is still struggling with the effects of the devastating disease.
Her sister, Sara, was also diagnosed with Lyme disease in 2014, but it was caught much earlier and so her experience has not been as challenging.
In 2017, Moschell said she decided she needed to do something not only to help support other families dealing with Lyme disease, but to help educate others, including health care providers about the disease. She created the Northeast Ohio Lyme Foundation.
"Our goal being to bring awareness, to bring education of what it looks like to have Lyme, what to look for. But to also bring support because a lot of people in our area are sick and don't really know what to do. And we didn't know," Moschell said.
"People are becoming very sick in Ohio. It's becoming an endemic issue. That's important to recognize that it's important to prevent tick bites. I get more and more calls every day from our organization, what do I do?" she said.
Experts said they believe the population of the black-legged tick, also known as the deer tick, is exploding across Ohio contributing to the concern about Lyme disease.
"The only known way in which Lyme disease can be transmitted is through the bite of a black-legged tick. That's it. There's not been proven to be any other vectors whatsoever. So if you have Lyme disease, you have gotten bitten by a black-legged tick," Curie said.
He said the best way to prevent it is to protect yourself from exposure to the tick or to minimize the chance of getting bit.
The foundation is planning its third symposium this Saturday, May 11 at the Veterans Memorial Performing Arts Center attached to Andover High School. The panel there will include some of the most knowledgeable experts in the field.
"Prevention is so important and even understanding what Lyme disease looks like and what the early symptoms are and recognizing what to do if you have a tick bite. If you know all these things and you are able to act quickly and early, you can prevent what I have gone through," Tilton said.