Cases of Lyme disease are rising dramatically. In Pennsylvania last year, more than 12,000 new cases were reported. Because of last year’s relatively warm winter, the ticks that carry the disease weren’t able to go dormant and have had more time to breed.
Many may dismiss the rising tide of Lyme disease as a rural problem, but it poses as much of a danger to city dwellers as does to those who live near the woods, said Julia Wagner of the PA Lyme Resource Network.
“We think of deer as really being the ones that drive up Lyme disease,” she said. “It’s actually the mice and small mammals that will transport the ticks into your yard and into your home. So anywhere you have mice, you have a risk of ticks on your property.”
These days, Wagner is a leading activist for Lyme awareness who was instrumental in getting Pennsylvania to enact legislation aimed at preventing the disease. Her journey began more than a decade ago when she and her three children were diagnosed with the disease. And she said they were probably infected in their Montgomery County neighborhood.
The population most at risk for Lyme is young children, according to statistics. Other susceptible groups include their parents and retirees who spend time outside.
A variety of tick-borne bacteria cause Lyme disease, making it hard to diagnose and treat. Emily Yost, who co-founded the PhillyLyme support group, said it’s not uncommon for Lyme patients to see many doctors before they get the right diagnosis.
“The list of symptoms is a mile long,” said Yost. “Lyme disease can go anywhere in the body. The bacteria doesn’t stay in one system, it can go wherever.
“One day, your knee could be hurting, and the next day your knee could be fine, and it could be your shoulder,” she said. “Oftentimes, the doctors can’t figure out what’s wrong … sometimes they’ll tell the patient that they need psychiatric care.”
Yost said she was sick for five years before she got an accurate diagnosis from an ear nose and throat doctor.
Lyme symptoms also differ between adults and children. Wagner’s daughter experienced the classic joint pain, but also stomach aches, recurring illnesses, and neurological issues.
“She became extremely emotional and had meltdowns that we would think of as a toddler meltdown,” Wagner said. “She was having them at age 6.”
In 2014, Pennsylvania passed Act 83 to expand Lyme disease prevention and education efforts, as well as improving surveillance. But underfunding has hampered the program.
Another barrier many Lyme disease patients face is that health insurers may deny claims for long-term or recurring treatments.
There is no cure for Lyme disease. Treatments work to reduce symptoms, which could get better only to show up later in life. Wagner says her organization is advocating another bill that would require insurers to cover all aspects of Lyme disease treatment in the state.
For now, prevention is the best remedy. Wagner recommends treating clothing with repellent, especially socks and shoes, as well as regular tick checks, and wearing light colored clothing when outside.