Not Taking Lyme Lying Down: The PA Lyme Resource Network Empowers, Educates, Advocates
by Jack Firneno
Summer is a time for people to enjoy the outdoors. But for many in Pennsylvania, there’s a dangerous underbelly to the season.
There were 7,351 reported cases of Lyme Disease in Pennsylvania in 2015, according to the U.S. Centers for Disease Control and Prevention (CDC). That’s up from 6,470 in 2014, making the state by far the highest in the nation for documented incidences.
Southeastern Pennsylvania has been hit especially hard: Bucks County alone had 287 cases in 2014 and 454 in 2015, with Montgomery County showing 384 and 409, respectively. Even more alarming is the CDC’s acknowledgement that Lyme infections are underreported.
The disease, along with a host of possible bacterial co-infections, is transmitted through bites from blacklegged ticks, also known as deer ticks.
“The truth is, it’s easy to get and hard to treat,” says local resident Karen Meyers. Myers co-runs Bucks County Lyme, a regional group in the PA Lyme Resource Network, with Evelyn Throne, who also heads up the support group BucksCo.Lyme. Comprising 13 groups and growing statewide, the PA Lyme Resource Network offers prevention and diagnosis information and workshops about the disease and co-infections. “We work on advocacy and education, develop training materials and work with school nurses,” Meyers explains. “Every way you can go about solving this community health problem, we’ve got our hands in it.”
Last year, the group advocated successfully for the passage of Act 83 in Pennsylvania, which established a task force on Lyme disease and related illnesses. This year, it became the state’s preferred vendor for a prevention grant from the CDC. They have also been successful in getting HB174/SB100 through the Pennsylvania House and are hoping to pass it through the Senate. The bill provides for patient access to diagnostics and treatments for Lyme disease and related tick-borne illnesses, and it requires healthcare policies to provide certain coverage.
It’s a big step, but still only a relatively small one when compared to the many challenges faced by those that suffer from Lyme and related illnesses. Throne explains that many general practitioners aren’t fully educated on Lyme, nor do they always have the resources to properly address it even when there is a diagnosis. Finding one that does can be expensive.
“There are few doctors [that treat Lyme] who take insurance. The reason is because you can’t talk about a complex illness like this in the 10 minutes a doctor can give you through an HMO,” says Throne. “It could be a two-hour appointment or longer the first time, and possibly an hour each successive visit.”
Adding to the complexity is the need for quick diagnosis. Many people know about the telltale “bulls-eye” rash a Lyme infection leaves behind when the bacteria enters the body. Sometimes, however, the rash is hidden or does not appear. Since standard blood tests do not detect the Lyme antibodies until the infection has been in the body for four to six weeks, the CDC calls for a clinical diagnosis based on symptoms, rather than on blood work alone. Unfortunately, symptoms of Lyme, like fatigue, headaches, fever and joint or muscle pain, can be mistaken for other infections like mono or the flu. “BuxMont residents need to be aware of the symptoms and their exposure, and be vocal about their Lyme concerns when they visit their physicians,” advises Throne.
The good news is that if it’s caught quickly, a two-to-four-week antibiotic treatment usually eradicates the illness. However, people that are treated after the disease has had time to develop sometimes continue to experience symptoms well after their treatment. Some peer-reviewed studies advocate for the recognition of “chronic Lyme disease” as a clinical diagnosis, recognizing that Lyme infection has spread to the body’s cells. The CDC, however, rejects this term and refers to such lingering symptoms as Post-Treatment Lyme Disease Syndrome, noting the symptoms may linger but eventually fade away.
Holistic practitioners that specialize in nutrition, health coaching, herbalism, ayurveda, massage and other natural modalities have long been and continue to be exploring integrative, natural ways to strengthen immunity and combat Lyme and its many complicated side effects. The CDC, however, has adopted the Infectious Diseases Society of America (IDSA) official guidelines for treatment protocols, and the IDSA does not endorse holistic treatments.
With Lyme disease research receiving increasing priority as the disease spreads, recognition and standardization of symptoms and outcomes should help clarify conflicting experiences and viewpoints. What everyone can agree on is that diagnoses are on the rise in Pennsylvania. They often come in two waves: the first in the early summer, after the first wave of tick bites in the spring; the second by the fall, when summer infections set in.
“Prevention is key,” stresses Throne. “There are several steps to take to mitigate your risks. It’s crucial to anyone that lives in this area.”
For more information, visit PaLyme.org.
Jack Firneno is an award-winning writer based in Philadelphia. Connect at DadWriterDrummer.com.