‘Mommy, I just want to die:' Mother recalls daughter’s fight against Lyme disease

Jennifer Lecrone held her 14-year-old daughter in her arms, rocking her back and forth as the girl screamed in pain.

“I want it to go away. I don’t want this anymore,” Nicole Carbaugh cried.

“Mommy, I just wanna die. Just let me die.”

Jennifer cradled her daughter’s pale, sunken face and frail arms, nestled underneath her flowery purple comforter. She felt crushed.

“We need you here,” Jennifer said, crying while she soothed her daughter. “Things will get better; you just have to hold on.”

She closed her eyes and silently begged God to take away the pain and fatigue that had consumed Nicole. Nicole had already missed months of middle school as she lay nearly motionless in bed in Spring Grove, Pa., usually getting up only to go to the bathroom, trips that took her more than an hour each. She would spend most of the next four years bedridden, missing homecoming dances, her sister’s soccer matches, cheerleading at football games and almost all of high school.

Jennifer’s only hope was the controversial antibiotic treatment that flowed through a tube snaking through Nicole’s vein in her upper arm and ending at the right side of her heart. The doctors said it would kill the Borrelia burgdorferi bacteria that spiraled through her bloodstream.

Nicole had tested positive for Lyme disease months prior in the fall of 2003 after going undiagnosed and untreated for more than a year after her symptoms began. Lyme disease is caused by the corkscrew-shaped bacteria transmitted to humans through the bite of an infected blacklegged tick. Nicole doesn’t remember the tick that bit her. It was likely smaller than a sesame seed.

Since Nicole was diagnosed in 2003, Lyme has flared into an epidemic in the United States. As the disease mushrooms across the country and muscles into previously uninfected regions, scientists have blamed climate change in part for its rapid spread. Every summer is expected to bring more infections than the last as rising temperatures allow ticks to thrive in places that used to be too cold for them to survive.

In Pennsylvania, the epicenter of the disease and the Lecrones’ home state, Lyme cases have more than doubled since Nicole became sick, according to Centers for Disease Control and Prevention (CDC) data.

Dan Loerch, a retired air traffic controller, wears muddy boots, jeans and a leather cowboy hat with a live black snake coiling itself around the brim as he stands at the trailhead of Mount Nittany. He grew up on this mountain, a popular hiking destination in central Pennsylvania that overlooks the campus of Penn State University. After moving away for a few decades, he returned to discover the mountain teeming with ticks he had never seen during childhood. He now routinely picks them off himself and his tawny dog, Shane. He said he contracted Lyme last year.

As winters become warmer and shorter and summers become hotter and longer since 1991, the number of Lyme disease cases in the U.S. has nearly tripled. Nationwide, the CDC now estimates more than 300,000 people are diagnosed with Lyme disease every year.

Ticks laying dormant in the winter can’t survive below 14 degrees Fahrenheit for long, so temperatures determine how far north ticks can survive, Marten Edwards, a biology professor at Muhlenberg College, said.

According to Edwards, other factors have contributed to the explosion of ticks, including reforestation of farmland which has led to an increase in deer and other tick hosts.

“We do know that climate change has allowed these ticks to spread into areas further north where they weren’t able to survive previously,” Ben Beard, deputy director of the Division of Vector-Borne Diseases at the CDC, said. “And if you live in an area where Lyme disease is common, every year is a bad year.”

Other experts say the problem will likely get worse.

A 2018 study predicted the number of Lyme disease cases will increase by 21% by mid-century, assuming an increase of 2 degrees Celsius or 3.6 degrees Fahrenheit in average temperatures, as estimated by the U.S. National Climate Assessment. The study examined 15 states in the Northeast and Midwest where almost all cases of Lyme disease are clustered.

York County, Pennsylvania, where Nicole spent years trapped in bed, has already warmed by 1.6 degrees Fahrenheit from 1988 to 2017.

Rising temperatures have already led to more hospitable habitats for ticks, allowing tick populations to creep farther northward, Edson Severnini, assistant professor of economics and public policy at Carnegie Mellon University and co-author of the study, said. Although Severnini said some view climate change as a problem whose impact will be felt in decades, his research shows a warming climate is disrupting the patterns of people's lives today.

Pennsylvania is nestled in the heart of Lyme-endemic territory, and its legislature has begun dedicating millions toward fighting Lyme. However, some say the state’s efforts are too little, too late.

Pennsylvania has the highest number of Lyme cases out of any state in the country. In recent years, disease-carrying ticks have spread westward and northward and can now be found in every county in the state, said Pennsylvania Secretary of Health Rachel Levine.

“There is a significant public health problem in regards to Lyme disease and other tick-borne diseases in Pennsylvania,” she said.

In Pennsylvania’s 2019-20 budget, the state allocated $3 million to fight Lyme disease, split between outreach and education for the public and health care providers, prevention efforts, free tick testing and surveillance.

The state’s efforts follow the recommendations of a report released by the Pennsylvania Lyme Disease Task Force. Though the task force published its report in 2015, calling tick-borne diseases a serious threat to Pennsylvania and warning that the “cost to Pennsylvania of doing nothing is considerable,” the first appropriation for Lyme disease didn’t come until the 2018-19 budget.

Julia Wagner, president of the PA Lyme Resource Network and a member of the state task force, said the recommendations she helped craft are being poorly implemented.

“It really is quite disappointing to see how ineffectively those funds are being used,” she said.

Wagner became involved in Lyme prevention and advocacy after her entire family fell victim to Lyme in 2004, experiencing symptoms ranging from memory loss and a seizure to joint pain and swollen knees. Considering Lyme’s relentless onslaught, Wagner remains unimpressed with the state’s efforts.

Beyond the brochures, multimedia campaign and tick drags, Wagner wants to see a public health campaign with the same scale and intensity as the “Just Say No” campaign, ideally with every county and township implementing prevention and awareness efforts.

The state’s five-year environmental survey of ticks is a cornerstone of the state’s struggle against Lyme, with state employees collecting and testing ticks in public forests, playgrounds and parks in all 67 counties to understand where people are most at risk of contracting a tick-borne disease.

Wearing a white Tyvek coverall over his clothes, Wayne Laubscher, program coordinator for Mosquito Disease Control of Centre County, tramps through a forest in Clinton County, Pennsylvania, dragging a piece of white felt behind him. Every 10 meters, he flips his magnifying visor over his eyes and holds the meter-long square of felt up to his face like a newspaper.

“Got one!” he says.

The nymph tick he points to is tiny and almost indistinguishable from the specks of dirt dotting the cloth, except that the tick is slowly crawling across the fuzzy fiber. He pulls it off with a pair of tweezers and plunks it in a tube filled with alcohol. He’ll send it to the state’s lab to be tested. According to Laubscher, nearly half of the ticks in Pennsylvania carry Lyme disease.

The majority of Lyme infections occur in June, July and August, summer months that lie at the unlucky junction of increased human and tick activity. Nymphs, young ticks the size of poppy seeds that are responsible for the majority of Lyme infections, are ubiquitous during the spring and summer as they look for hosts to feed on. Meanwhile, warm weather and summer vacation lure people outdoors, bringing them in contact with the ticks clinging to the leaves and grass.

Lyme disease often begins with flu-like symptoms and occasionally a bull’s-eye rash expanding around the tick bite. Left untreated, like Nicole, the effects can become debilitating, including memory loss, severe pain, joint swelling and facial paralysis.

Though people are likely safe from Lyme as long as they pry the tick from their skin within 36 hours, ticks and tick bites often elude notice. Ticks often attach themselves to the scalp, behind the knee and other places where it’s difficult to spot arachnids that can be as small as a grain of sea salt.

Without a bull’s-eye rash that many people don’t develop, or that may be hidden in a hard-to-see place, Lyme’s symptoms can be easily mistaken for other diseases like chronic fatigue or fibromyalgia, making early treatment with high doses of antibiotics difficult.

The CDC-recommended tests for Lyme detect antibodies the body produces in response to the invading bacteria, not the B. burgdorferi bacteria itself. Because the test looks for antibodies that may take weeks for the body to develop, people with Lyme disease often receive false negatives, leaving patients in limbo if physicians refuse to treat for Lyme without a positive test result. Lyme tests are so unreliable that Virginia and Maryland passed laws requiring physicians to inform patients that negative results don’t necessarily mean they’re disease-free. These tests can remain positive for years or decades after an infection is treated, making it difficult to determine whether the bacteria still linger in someone’s body, according to Paul Auwaerter, clinical director of the Division of Infectious Diseases at Johns Hopkins School of Medicine.

“It can be very confusing,” Auwaerter said.

As more and more people become infected, controversy is stitched into almost every area of Lyme disease. Doctors disagree over everything from how long to treat patients with antibiotics to the prevalence of Lyme symptoms that last longer than six months to the accuracy of diagnostic tests.

Though Nicole’s doctors prescribed her a year’s worth of antibiotics that Jennifer said saved her daughter’s life, allowing her to go to college, become a nurse and later, a mother of three kids, Auwaerter is skeptical that long-term antibiotics benefit patients with post-traumatic Lyme disease syndrome.

The Lecrones emptied their bank accounts to pay for the uninsured doctor’s visits and to keep injecting $5,000-a-month Rocephin, an antibiotic, into Nicole’s IV. They lost their house and 401(k). Jennifer’s husband drove a truck for 15 hours a day. Jennifer’s oldest daughter, a high school student and varsity soccer player, gave her mom the paychecks she earned from working part-time at Subway and told her mom to use it to buy groceries and pay bills. The family struggled to function as Nicole languished in bed.

“The bacteria that cause Lyme disease and other pathogens have basically evolved to hide from our immune system,” Edwards said. “It’s kind of an arms race between us and the bacteria. So far the bacteria are winning.”

Additional reporting contributed by Christopher Scragg.

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