Sometimes, when people hear Evelyn Throne’s speech, they start scratching their arms. Sometimes she even does it, too. It’s uncomfortable, she admits, but the alternative is much worse. Throne knows from experience.
“My husband and I are walking and talking,” she said. “Some people aren’t as lucky.”
Throne cited common symptoms like “crushing” headaches, aches and pains, and sensitivities to light or smells. On the more severe end of the spectrum are people who can only get out of bed once or twice a week — or people like her son-in-law, who nearly died in a hospital bed before he was properly diagnosed with Lyme disease.
It may seem unusual for three people in the same family to contract Lyme disease, which is primarily transmitted through exposure to deer ticks. But then again, given the latest statistics on the disease, it’s maybe not as unusual as it sounds.
Last year alone, there were some 7,140 diagnoses of Lyme disease in Pennsylvania, making it the No. 1 state for new cases. Within that, Bucks County ranks fifth for new cases out of all 67 counties.
That’s why Throne makes her speeches: explanations of symptoms and ways to alleviate them, help finding doctors who are prepared to work with a diagnosis, and examples of just how small many of the ticks are that transmit the disease.
The latter evokes the most nervous physical reactions, especially when she shows how many of the nymphal ticks — the “baby” ticks commonly found in the spring — are no larger than the head of a pin.
“People do tick checks and that’s great, but …,” she noted. So, she goes through the presentation, even as people often subconsciously start scratching as if the bugs she’s talking about are actually on them at the moment.
Throne talks about the ticks, and other related topics, at the monthly meetings she holds for the Lower Bucks Lyme Disease Support Group. Most times, there are around a dozen people there to share tips and offer support to people suffering from Lyme disease.
Others attend to get information on Lyme and related diseases — for which Throne advocates use of the term “tick-borne illnesses” — even if they’re not affected by it. Meetings where movies like “Under Our Skin” are shown, or guest speakers attend, for instance, draw 50 to 80 people.
“I want people to understand what the symptoms are, and how to prevent it,” Throne said.
She formed the group in 2008, after her son-in-law was finally diagnosed after years of being sick, thanks in large part to her own research about the disease. It was also after she and her husband also contracted the disease, most likely while doing yardwork at their home in Langhorne.
“Now I have insect shields socks, I spray my shoes once a month and have a bag in my car if I’m going into an at-risk situation,” she said. “If I can help it, I won’t get sick again. It was two years of hell.”
And, along with the physical toll, there’s the added stress that comes with people often having trouble finding a doctor well-versed enough in the disease to properly diagnose and treat it.
“It’s such a difficult disease. The testing is not good, the doctors don’t understand it, many don’t want to deal with it,” she said.
Complications arise, according to Throne, because there are more than one disease spread by ticks, making a Lyme diagnosis complex. There’s also some controversy regarding how quickly it spreads and whether or not the treatments completely eradicate the disease.
Throne can talk at length about lawsuits brought against the American Society of Infectious Disease for their handling of it, changes by the CDC on their reporting parameters, and her opinions on why many patients end up having to go outside their healthcare provider network to find doctors who will diagnose and treat Lyme disease.
But that information is out there already, she said, and she’d rather focus on educating people on the disease itself: how to prevent and identify it, and help those suffering from it find support among other people who have it.
And, right now is an especially important time of the year to have these discussions.
Summer is when people who became infected in the spring, when ticks are born and feed for the first time, begin to show symptoms. It’s also right before a second wave of infections in the fall, when the adult ticks feed once more.
“I just felt like I had to spread the word,” Throne said of the time when she helped her son-in-law get diagnosed and then grapple with the disease herself. “I was in a world of this strange disease that people didn’t understand or accept, including doctors. Now, I want to help other people, so they don’t have to feel alone.”