The Sheas are a Lyme disease family through and through. They even had bright-green “Lyme Lives Here” flags made, and planned on flying them from the mailboxes of affected families in their rural Coatesville neighborhood—that is, until undiagnosed residents and local real estate agents got wind of it.
Chester County has a notoriously high incidence of Lyme disease. Ray Shea is from West Bradford Township; his wife, Jayne, grew up in Glenmoore, where her mother, another Lyme victim, still lives. Their earliest exposure to deer ticks came in their backyards. Ray once worked at an orchard. Jayne lived next to an abandoned one, played there and always returned home covered in ticks.
Ray is a gastrointestinal Lyme patient; Jayne’s joints are infringed. She sits in a whirlpool for an hour each morning before caring for their 21-year-old son, Jared. Lyme has permanently incapacitated Jared, who is confined to a wheelchair and needs a device to talk.
Jayne transmitted Lyme and four of its co-infections to her son. At least, that’s what Dr. Charles Ray Jones thinks. In 2000, the New Haven, Conn., pediatrician diagnosed Jared with gestational Lyme and Lyme encephalopathy exacerbated by a tick bite at age 5. But that’s not what any doctor around here would say.
Over the years, Jared did his physical therapy at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del. He was featured in photos for the facility’s 2003 hospital calendar. Before its publication, the Sheas say the hospital told them that the diagnosis in Jared’s calendar description had been removed because physicians there didn’t believe gestational Lyme existed.
Nemours policy and HIPAA privacy rules prevent the hospital from commenting on individual patients. But, based on the latest evidence-based research, gestational Lyme is an extremely rare diagnosis, says hospital spokesman John Grabusky.
Since Jared’s birth, any diagnosis had always eluded the Sheas, who saw dozens of doctors. A Children’s Hospital of Pennsylvania pediatric neurologist said Jared wouldn’t celebrate his 11th birthday. An infectious diseases specialist at duPont believes “all of Chester County is crazy [when it comes to Lyme],” says Jayne. “Jared was somehow a threat to him. My constant question remains: What are they afraid of?”
Pennsylvania consistently ranks among the top states for the number of new Lyme cases each year. According to the latest available statistics, Pennsylvania 5,722 new cases topped the list in 2009. Chester and Montgomery are among the counties with the highest incidence rates.
And that’s only reported cases. The Centers for Disease Control and Prevention suggest that there could be 50,000 or more undiagnosed or unreported cases statewide. Likewise, patients and Lyme activists say the Infectious Diseases Society of America guidelines are lacking when it comes to the diagnosis and treatment of the disease.
But thanks to groups like the Lyme Disease Association of Southeastern Pennsylvania, people are more “Lyme aware.” The LDA meets every third Wednesday at Kennett Friends Meeting in Kennett Square. In its 2004 survey of 1,007 Pocopson Township residents, 50 percent said their household had one or more cases of Lyme.
Diminutive vampires, ticks are most active from May to July, then again in October. The nymphs—the middle of three stages of a tick’s life cycle—transmit the most disease; they’ve had their first blood meal and are small enough that they’re hard to detect. A tick’s existence depends on secretly latching on.
It’s far more difficult to latch onto a doctor who will diagnose a patient with Lyme—especially chronic Lyme, which many in the medical community say has no scientific basis. Commercially available tests miss the majority of patients with the disease. A two-tiered process begins with a screening test called an ELISA, the first widely used screening test for HIV. If that’s positive, a Western blot is next. A Johns Hopkins University study revealed that the two-tiered method missed 85 percent of infections. Lyme activists advocate regular screenings and clinics to detect the disease earlier, improve diagnosis and treatment, and reduce its impact and expense.
There’s no vaccine or single cure for Lyme disease. Rather, it’s an emerging clinical science, and doctors are caught in the middle between their patients and insurance companies. There are more than 100 strains of the Lyme bacterium borrelia burgdorferi. Symptoms include nerve damage, heart block, swollen joints and fatigue. Lyme can cause cognitive impairment, and specialists say the disease isn’t nearly as easy to treat as once thought.
Patients with doctors who prescribe a long-term cycle of antibiotics—despite the threat that insurance carriers will drop them—have had physical and mental function restored, especially if the diagnosis comes soon enough. “Doctors have to be pretty courageous to treat Lyme,” says Doug Fearn, president of the Southeastern Pennsylvania LDA.
Meanwhile, controversial state legislation has, until recently, died in the Senate’s Banking and Insurance Committee. The current bill would mandate that patients and physicians be informed of the two schools of thought that exist on Lyme. It would ensure that medical professionals are updated on the new science and protect a doctor’s right to apply clinical judgment. It would also make insurance companies pay for treatment ordered by doctors, while also focusing on prevention and public and in-school education.
Stemming the tide of Lyme disease may rest with self-protection and education. That’s the message of educational organizations like the LDA. Incorporated as a nonprofit in 2003, the association speaks at 50 gatherings a year, and it’s been slowly embraced by once-reticent outdoor organizations like summer camps and the Pennsylvania Sportsman Show. The LDA website (lymepa.org) has 500 users a day. Its hotline has drawn nationwide calls. Lyme Disease and Associated Diseases: The Basics, a pamphlet authored by Fearn, circulates 35,000 copies a year.
In May, Lyme Disease Awareness Month, Montgomery County Lyme patient and activist Julia Wagner’s Lyme Action PA (lymeactionpa.com) hosted the Facebook-driven Lyme Youth rally at the Capitol Building in Harrisburg. “We’re hoping to get people mad enough that it forces changes,” says Fearn.
Southeastern Pennsylvania has plenty of Lyme disease’s chief carriers: small- to medium-size mammals, from white-footed mice to deer. Of late, deer herds have become penned-in due to development. At Valley Forge National Historical Park, the deer population has increased eightfold in the past 25 years to about 1,300.
Some blame the deer, contending that if you reduce the herd, you’ll reduce the tick population and the number of new Lyme cases. “There’s a direct correlation,” says Fearn. “Deer are the tick amplifiers. But all that scares people away. If no one goes to the park, the park will go out of business.”
Park officials recently moved forward with deer-management programs—but only, they say, to regenerate forest and curtail vehicle collisions, not to curb Lyme disease. Any deer-control problem is also a political problem. Pennsylvania’s hunters, its game commission, and National Rifle Association lobbyists all want deer populations to thrive.
Lyme experts say that local municipalities should be cleaning up tick habitats by clearing underbrush, mowing road edges, spraying well-timed insecticides and installing four-poster deer feeders to keep them at bay in forested areas. Valley Forge Park once mowed all of its 3,600 acres. But, to promote biodiversity, it’s now leaving tall-grass meadows—a perceived tick magnet.
“Our [Lyme] message stands: It’s prevention,” says Kristina Heister, the Valley Forge Park’s natural resource manager. “Dress appropriately, wear repellent, and home-check yourself before showering. Stay on our trails and out of shrubbery and vegetation. We’ve said over and over that deer do not carry the disease. It’s white-footed mice—and white-footed mice are everywhere, so you can’t control that.”
Valley Forge provides an ideal habitat for deer, but so do Lower Merion, Goshen and other area townships. “This is a regional issue,” Heister insists.
To that end, Lower Merion, East Goshen, Willistown, Kennett and Chadds Ford are among the townships with deer-management plans, committees or ordinances that include a Lyme-prevention component. High deer densities do result in higher detections of Lyme disease, says Gino J. D’Angelo, a New Britain-based wildlife biologist who works with Lower Merion and others municipalities. But D’Angelo concedes that there still would be Lyme disease without them. “Deer are one host,” he says. “It’s not necessarily true that deer are perpetuating [Lyme].”
In 2008, the deer density in Lower Merion was 58 per square mile. That’s typical of suburban tracts with public parks and available forage. In the mid-1980s, there were 31-35 per square mile at Valley Forge; now there are 241. That ’80s figure is the target reduction range for the park’s 15-year, $2.9 million deer-management plan, which is first utilizing USDA sharpshooters, then chemical birth control.
In effect since Oct. 1, 2009, the plan was immediately stalled when West Chester’s Compassion for Animals, Respect for the Environment and the Connecticut-based Friends of Animals filed a joint lawsuit that suspended the hunts. In October 2010, a judge ruled in favor of the park, and shooting began the following month. Earlier this year, the two groups appealed. Lee Hall, vice president for legal affairs for both animal rights groups, calls the killings “reprehensible” and “unethical,” maintaining that the deer “belong unmolested in the park.”
When Christina Fink’s mother first got sick, her bull’s-eye rash was misdiagnosed as a spider bite, then plantar fasciitis, then diabetes. All were convenient conclusions to explain away the longtime Chester County resident’s excruciating pain. Eventually, the condition was deemed psychiatric. Then she tested positive for Lyme.
About the same time, in Haverford, Christina’s youngest son, Luke, underwent a significant personality change. He began losing his words, exhibiting autistic-like behavior and couldn’t socially interact. He was irritable and angry. When he began to bang his head against the wall, one psychologist dismissed it as little more than bad behavior.
Testing revealed that Luke, too, was Lyme positive, with two of its co-infections. After significant treatment, most of Luke’s physical symptoms are gone, his old self largely restored. Still, cognitive issues remain; he has reading problems.
Luke’s older brother, Zach, developed intense night sweats, physical exhaustion and cognitive dysfunction (brain fog). A lacrosse player at Harriton High School, he declined physically and couldn’t catch his breath. He was diagnosed with Lyme in the spring of his freshman year. After treatment, he’s back to excelling in the classroom and on the lacrosse field.
The Finks have found a way to fight Lyme and advocate for others: Fink’s Powerful Pancakes (powerfulpancakes.com) donates 50 percent of its proceeds from the sale of its nutritional pancakes to fight Lyme disease.â€¨
A real rarity, Dr. Ann Corson’s family practice in Cochranville is entirely devoted to families with tick-borne illnesses. Once an emergency room physician, Corson may not have evolved into a Lyme doctor if the disease hadn’t arrived at her front door. Her son, Joseph Kamp, was 14 when he was bitten. At his sickest, he missed part of 10th grade and more than half of his junior and senior years. In response, Corson became the first doctor to shadow and train with colleagues already experienced in aggressively treating Lyme. She initiated a movement to train physicians to identify and treat tick-borne diseases. In 2003, she studied with Dr. Joseph Burrascano in East Hampton, N.Y. In the fall of 2005, she was trained under Dr. Charles Ray Jones, now an octogenarian still practicing despite a legal siege on his license by the Connecticut State Medical Board.
“We all feel for him, but we also can’t lose this fight in any way,” Corson says. “It’s a real agenda to deny the very existence of the problem, and why they continue to persecute Dr. Jones doesn’t make sense.”
Today, the New York-based Turn the Corner Foundation provides grant-like reimbursement to cover lost time in each training doctor’s practice. “I did it on my own,” Corson says. “If I didn’t figure it out, my son would’ve died. But how many other mothers are out there with sick kids who don’t know what to do?”
So far, Corson has trained 10 doctors in her office. The physicians network of the International Lyme and Associated Disease Society (ilads.org) is strong. They share articles, research and clinical evidence. “Not many doctors practice on the cutting edge of medicine,” says Corson, who has a six-month minimum wait time for new patients. “We’re practicing on the clinical edge.”
Corson describes modern Western medicine as overly compartmentalized in its view that illness must have one prescribed cure. Chronic, long-term diseases like Lyme, she says, require an integrated, holistic approach.
In 2007, Corson testified twice in favor of versions of state legislation that would protect doctors, but she remains doubtful. “I don’t think it’ll ever change in Pennsylvania,” she says. “All over the country, nothing has changed in 20 years. In the meantime, we’re doing the best we can to take care of the most people we can. I’m helping people get off disability and back to work. Why would you want to hurt me?”
Thus far, Corson’s work has gone unchallenged. Either way, “I’m going to continue telling the truth,” she says.
Meanwhile, the LDA’s Fearn has been off treatments for four years after eight years of intervention, the last four with Corson. But he’s still only 80 percent better. “I know it’s not gone, that it persists and could get worse,” he says. “So far, there’s a void. But I’ll never feel like I’m back to normal.”
Fearn’s diagnosis came in 1994. He went on four weeks of doxycycline, twice the standard first dosage for suspected Lyme. In 1999, he was bitten again on the right side of his abdomen. It, too, diffused a rash (it doesn’t for everyone). “We can’t prove it medically, but anecdotally it seems the more often you’ve been bitten, the sicker you become,” he says.
Pennsylvania’s House of Representatives has passed its Lyme bill three times. In June 2010, the Senate moved forward with a major public hearing. Montgomery County Lyme activist Julie Wagner provided expert testimony alongside medical professionals, some of which Fearn lined up. As a result, 12th District Sen. Stewart Greenleaf’s Lyme andâ€¨ Related Tick-Borne Disease Education, Prevention and Treatment Act advanced the furthest it ever has. Since then, acting Secretary of Health Dr. Eli Avila has affirmed that the disease is important to him.
States with kindred laws already on the books include Rhode Island, Massachusetts, California and Connecticut (where the disease was first discovered—and named—in the town of Lyme in 1975). Minnesota and New York have legislation in the works and/or moratoriums on medical board intervention. Maine has an agreement in place, but it’s not law. New Hampshire—like Pennsylvania—has legislation pending.
Chester County’s Sen. Andy Dinniman is a co-sponsor of Greenleaf’s bill. He’s seen an evolving focus on prevention in the county’s health department, an awareness in the local farm bureau, and interest in educational and support groups.
“Unfortunately, none of this has been accompanied by any reduction in the disease,” says Dinniman. “But it would be far worse if there wasn’t the educational effort out there.”
Dinniman explains the duality of the disease. “The crisis is a double one,” he says. “You get it, [and] years later, when you think it’s resolved, it’s not. People pay their [insurance] premiums because they want to get help when they need it. The medical professionals can continue to argue. But while they do, let’s treat the people and get them help.”
To resolve the catch-22 in the Senate and move the Lyme bill forward, Dinniman plans to sit down with Greenleaf and figure out how to redraft the bill and get it into another committee like Public Health and Welfare. “We have to deal with this as a matter of public health,” he says. “In my judgment, Lyme is a public health crisis.”
To promote awareness, he hosted an April screening of Under Our Skin at West Chester University. The award-winning Lyme documentary features Coatesville’s Shea family, among others.
Elsewhere, Wagner’s nonprofit MontCoLyme (montcolyme.org) is regionally focused on education and outreach, with an emphasis on youth. Her Lyme Action PA was formed as a statewide coalition that includes the LDA and 14 others. It emphasizes legislation and advocacy.
Wagner’s entire family fell ill with Lyme in 2005. When she e-mailed 50 homes in her North Wales neighborhood, she received 19 responses from similarly affected families within an hour. She traces her early infections to the years she lived in Rosemont, Narberth and Merion Station in the late 1980s.
For a while, the disease left Wagner a cognitive wreck. Her daughter, Sarah, lost her ability to speak German, the native language of her dad, Andreas. She also developed dyslexia. “She’d say things like, ‘I’m so sad, and I don’t know why,’” her mother recounts. “She was 6 years old.”
Her oldest son, Samuel, then 4, lost control of his bladder and bowels. Peter was 18 months old when Julia was diagnosed. The baby tested positive for nearly every tick-borne co-infection. “It was like we were imploding,” recalls Wagner.
Her first doctor, West Chester’s Steven Burke, diagnosed the whole family. They left Burke for Corson after Sarah hit a plateau on the only antibiotics he’d order. Corson found an additional co-infection. “We knew she was the doctor who could get us to the next level,” Wagner says.
After Wagner organized a standing-room-only talk at her daughter’s school, she was flooded with more inquiries than her health allowed her to handle. She promised she’d do something about the crisis when she was better.
On antibiotics, her kids’ IQs have improved and their physical functioning is normal. Without treatment, “I can’t tell you how many times Sarah was wheeled out of school in a wheelchair because she suddenly couldn’t walk,” says Wagner.
Wagner relapsed in 2010, and needed another round of IV antibiotics. Insurance has partially paid for treatment—that is, when the Wagners have been able to keep up with the paperwork. They’ve spent an estimated $150,000 out of pocket. “[That’s] one child’s education,” says Wagner.
Wagner continues to work tirelessly to mobilize Lyme patients across the state. “[Without a diagnosis and treatment], my children would’ve had mandated educational services until they were 21,” she says. “That’s one example why the state should be more interested.”
Now old enough to drink, Jared Shea is completing his final year of eligibility in the Unionville-Chadds Ford School District. In his community-service-based curriculum, he speaks and reads aloud in the district’s elementary schools with his device, and he’s also a tour guide at a West Chester farm catering to kids with disabilities. Physically, his mother says, “he’s trapped inside a body that’s totally dysfunctional.”
When Jared was 5, a tick bit him, aggravating his symptoms. Later on in life, he fell backward down a set of stairs at school and suffered a concussion and contusions to his thoracic vertebrae—new injury sites and feeding grounds for Lyme to attack. “He was created with this disease,” says his mother.
In Jared’s first year of oral and IV antibiotics, he doubled the 54 pounds he weighed at age 10 and grew 10 inches. Sadly, though, 11 years after his Lyme diagnosis, Jared will always require around-the-clock attention. Now, as an adult Lyme patient, he sees Corson.
“There’s a lot Jared has lost,” his mother says. “He’s lost his childhood; he’ll spend his adult life totally disabled. Lyme puts an awful strain on a family, its finances, its dynamics. It’s like enduring a boot camp constantly. Fortunately, we’ve fused as a family—and not just within our blood family, but in the community of Jared supporters.”