Tick-borne disease: More than just physical ailments

“Everybody knows somebody...”
Known for its scenic byways and wooded charm, Pike County, also has the distinction of being known for something else: tick-borne diseases.
“In this area, everybody knows somebody with a tick-borne disease,” Ellen Scarisbrick said. “It is rampant in this area.”
As a long-time employee of Wayne Memorial Hospital in Honesdale, Scarisbrick ought to know.
Working in tandem with a psychiatric social worker, she coordinates a tick-borne disease emotional support group for patients having difficulty coping with their diagnosis.
The problem, Scarisbrick said, is that most of the time people who have tick-borne illnesses look fine on the outside.
“Inside, they’re really a mess because long-term tick-borne diseases can cause chronic migraines, can cause horrendous body pain,” she said. "And you need your job, because you need your benefits, so you just keep plugging along."
Featuring the stories of Lyme disease patients across the country, including those living in the tristate area, California-based Bay Area Lyme Foundation details individuals’ physical struggles with the illness.
Far from being a typical support group, Scarisbrick said the tick-borne diseases support group is addressing a need that’s often overlooked.
“I think it’s filled a niche that needed filling,” she said. “It’s for people who are struggling emotionally in dealing with it. It’s almost easier to just take your medications and go on your way, but there’s so many other things that (a tick-borne disease) takes a toll (on).”
Those other things often include economic hardship or difficult family situations, as individuals with tick-borne diseases frequently lose their jobs or face disbelief from family members as a result of their illnesses.
A 2014 study of more than 3,000 chronic Lyme disease patients showed that, compared to the general population, chronic Lyme disease patients have higher disability and unemployment rates. The study was jointly produced by LymeDisease.org, a patient advocacy group, and Carnegie Mellon University Professor Jennifer Mankoff.
“I think every time a provider diagnoses somebody with a tick-borne disease, they should ask if they’re doing okay mentally,” Scarisbrick said. “There’s a lot of false information about Lyme disease out there, so when you finally figure out that this could be a chronic condition that you have for the rest of your life, anybody would be devastated by that.”
Meeting on the third Saturday of each month, the Pike County Emotional Tick Borne Disease Support Group meets at 10 a.m. at the Pike County Lab & Radiology, in Lords Valley.
An ounce of prevention
According to Pennsylvania Department of Environmental Protection (DEP) Communications Director Neil Shader, while a five-year statewide survey of ticks is being done by the department, it has not regularly measured tick populations throughout the state.
The survey, which started in July 2018, in coordination with county governments, is part of the Pennsylvania Lyme Disease Task Force’s recommendations for combatting the growing incidence of Lyme and other tick-borne diseases. It is funded annually through the state budget.
Lyme disease has been found in ticks in all 67 counties in Pennsylvania, Shader said.
Unlike with mosquitoes that carry West Nile Virus, the Pennsylvania DEP does not have any kind of tick control program.
Shader said that there isn’t a comparable way to control for ticks the way the department does for mosquitoes, which is why prevention measures are stressed so strongly.
According to the New Jersey Department of Health’s Vector-borne Surveillance Report for the week of June 16-22, there were 790 confirmed and probable cases of Lyme disease in the state to date, compared to 3,956 total for 2018.
In addition to Lyme disease, there are also other, lesser-known diseases that are spread via tick bite.
So far this year in New Jersey, there have been 27 confirmed and probable cases of anaplasmosis, compared to 118 in 2018; 29 cases of ehrlichiosis, compared to 94 in 2018; and 39 cases of spotted fever group rickettsioses, compared to 147 in 2018.
According to Janelle Fleming, of the New Jersey Department of Health, tick-borne disease investigations are ongoing statewide, but it is too early to determine how the number of cases this year will compare with last year.
Tick survival rates can be affected by temperature and humidity, as well the availability of animal hosts, such as the white-footed mouse and deer, she said.
Research and diagnostics
Just across the Delaware River, The Tick Research Lab of Pennsylvania offers basic tick diagnostic testing to Pennsylvania residents free of charge, according to the lab’s website.
Affiliated with East Stroudsburg University, the lab’s basic panel tests for the top four pathogens most relevant to the species of tick submitted, including bacterial, protozoal and viral pathogens for deer ticks, and bacterial pathogens for non-deer ticks.
For non-Pennsylvania residents, the basic panel costs $50.
The lab also offers advanced and comprehensive diagnostic panels, at a fee for both Pennsylvania and non-Pennsylvania residents alike, according to the website.
Testing is 99.9 percent accurate, according to the lab, and can identify 18 different pathogens.
Of the 15,494 ticks tested, the lab’s statistics show that 5,088 were infected with a disease-causing pathogen.
Unlike testing the ticks, testing individuals for tick-borne illnesses can sometimes produce inconclusive results.
According to the federal Centers for Disease Control and Prevention (CDC), the accuracy of Lyme disease testing depends on the stage of disease. During the first few weeks of infection, such as when the patient may have a rash, the test is expected to be negative.
Several weeks after infection, currently available tests have very good sensitivity, according to the centers.
A negative test result in a person infected with Lyme disease is possible because some people who receive antibiotics within the first few weeks may not develop antibodies or may only develop them at levels too low to be detected by testing.
Antibodies against Lyme disease bacteria usually take a few weeks to develop, so tests performed before this time may be negative even if the person is infected, according to the centers.
Tests are more likely to be positive after four to six weeks have passed.
Taking a proactive approach
Recognizing the need for specialized local care, the Tick-Borne Disease Wellness Center opened in April in the Pike Family Health Center in Lords Valley, Pa. An initiative of Wayne Memorial Hospital, the center is staffed by a board-certified nurse practitioner who has received additional tick-borne diseases training.
Individuals who believe they may have a tick-borne disease can be seen by appointment only on Wednesdays for diagnostic testing and confirmation, according to the center’s website. Patients who have already been diagnosed, and who are looking for symptom management advice, are also eligible to be seen.
According to Jeffrey Hammond, public information officer for the New York State Department of Health (DOH), Gov. Andrew Cuomo strengthened the state’s response to tick-borne diseases by signing two new laws last year.
The new laws require that tick warning signs be posted at all state operated parks and establish a work group to review current best practices for the diagnosis, treatment and prevention of Lyme and other tick-borne diseases.
New York State has averaged more than 5,500 new cases of Lyme disease each year, since reporting began in 1986, with numbers increasing in recent years, according to the state’s DOH.
The department identified the Asian longhorned tick in New York State for the first time last year, being found in several locations in New York City, Long Island and the Lower Hudson Valley.
While this tick has transmitted disease to humans in other parts of the world, it is unclear if this can occur in the United States, as more research is needed.
As of May, more than 300 Asian longhorned ticks had been tested by the department, and no disease-causing agents had been found.
Hammond said the New York DOH collects and analyzes ticks from across the state routinely to better understand the tick population, tick behavior and regional trends in tick-borne diseases.
Back in Pike County, Brian Snyder, of the Pike County Tick Borne Diseases Task Force, said that the group is in the midst of a county-wide tick survey.
For the purposes of the survey, the county’s approximately 546 square miles have been divided into nine collection grids, with 100 to 125 ticks being collected from each grid by the group’s volunteers.
Snyder said the ticks collected from each grid will be tested for pathogens by the Northeast Wildlife DNA Laboratory of East Stroudsburg University.
The information gained will provide a baseline for the types of tick-borne diseases that are most common in Pike County, which will help with diagnosis and treatment decisions.
Working with the county commissioners, the task force will also share the completed survey information with local and state officials in an effort to encourage better legislation for tick-borne diseases, Snyder said.