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Spotlighting Lyme Disease in Delaware

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Before she was diagnosed, Kerri Santos, a graphic designer from  Wilmington, “felt as though my  legs weighed 800 pounds.” Photo by Ron Dubick

In fall 2010 Elena Delle Donne was preparing for the upcoming basketball season at the University of Delaware when she experienced overwhelming fatigue.

“I couldn’t go to class. I couldn’t raise my arms for more than 10 seconds without dropping them to my sides,” recalls Delle Donne. She slept up to 18 hours a day. She wore a heart monitor and underwent an MRI. Doctors told her she might have multiple sclerosis. 

Spotting the newspaper stories about Delle Donne’s flu-like symptoms, a family friend asked if Delle Donne had been tested for Lyme disease. She had—but that was in 2008, and she’d tested positive. A course of antibiotics took care of the fatigue and migraines.

The 2010 re-occurrence of her symptoms would pull her out of the lineup for 12 games that season, and although she would recover and go on to play professionally for the Chicago Sky, she had another bout of symptoms in 2012.

Delle Donne is not alone. About 300,000 Americans each year are diagnosed with Lyme disease, according to the U.S. Centers for Disease Control and Prevention. In 2012, 55 out of every 100,000 Delaware residents were affected, giving the state the fourth-highest incidence rate in the United States, reports the CDC.

Yet Lyme disease can be difficult to detect and, in later stages, challenging to treat. It can also cause debilitating conditions, from seizures to heart palpitations to problems speaking and reading.

The disease is also causing some controversy. Many in the medical community maintain that “chronic Lyme” does not exist. Meanwhile, patients with persistent symptoms are frustrated.

“They’re not being treated, or they’re being treated for something they don’t have and they’re not getting better,” says Douglas Fearn, president of the Kennett Square-based Lyme Disease Association of Southeastern Pennsylvania. 

 

A Small Source to a Big Problem

Lyme disease is named for the Connecticut town of Lyme, where healthcare providers in 1975 noticed a number of new cases involving arthritis-like conditions during tick season. 

The culprit is the blacklegged tick, or deer tick, which carries the bacteria Borrelia burgdorferi that causes Lyme. Tinier than a sesame seed, the ticks are prevalent where there are high populations of whitetail deer. But the teeny vampires also feed on mice, birds, raccoons and other wildlife that live in our parks, marshes—even our backyards.

The tick must be attached for more than 24 hours to transmit the disease. A bull’s eye rash is the telltale sign of infection. Yet about 30 percent of people with Lyme disease don’t get the rash, or the rash appears on the scalp or in the groin area, so it’s not spotted.

Other possible symptoms:

Fatigue
Joint and muscle pain and stiffness
Headache
Chills and fever
Stiff neck
Jaw discomfort
Bell’s palsy: the loss of muscle tone on one or both sides of the face

Prompt treatment is key. Days to weeks after the bite, the bacteria infect different parts of the body at different times, then go dormant.

Testing typically includes an enzyme-linked immunosorbent assay, a blood test that looks for certain antibodies (immune proteins) that represent the immune system’s response to the infection. 

A false negative might occur during the early weeks because the body hasn’t had enough time to develop antibodies, explains Dr. Abigail Freedman, attending physician in infectious disease at Nemours/Alfred I. duPont Hospital for Children in Wilmington.

If there are clear symptoms, such as the rash or Bell’s palsy, the doctor may prescribe medication, usually doxycycline.

“The prognosis is good once it’s been diagnosed, and the treatment is usually very effective. People can quite easily be cured of Lyme disease,” Freedman says. 

Many insurance companies restrict coverage to 21 days of antibiotics, says Fearn, who was diagnosed in 1994 and again in 1999, and whose family has had bouts with the disease.

“For a lot of people, that works—but not for everyone. After eight years of treatments, I felt as good as I was going to get. I have some residual issues, but it’s not a real problem.”

left to right: After years of antibiotics, Abby Webb’s system rebelled against the drugs. Webb, shown with her dog, Hope, is bedridden most days. Photo by Ron Dubick • Elena Delle Donne. Photo by Dorothy Hong for Nike Inc • Sarah Davenport, shown with dog Sparky, pays $5,000 a month out of pocket for supplements and treatments not covered by her insurance company. Photo by Ron Dubick


Living with Lyme Disease’s Lingering Effects

That’s not the case for Abby Webb of Rehoboth, who doesn’t remember a day without pain. Initial blood tests for Lyme disease were negative. She was diagnosed at various times with MS, fibromyalgia, Parkinson’s disease, lupus, colitis and irritable bowel syndrome. 

When she was 20, a Western blot test confirmed Lyme disease. Another blood test, Western blot produces a bar code that the lab compares to the Lyme disease pattern. Webb was also diagnosed with other tick-borne diseases. 

After eight years of either IV or oral antibiotics, her system rebelled against the drugs. And the insurance companies rebelled against paying for more. To date, the family has spent $600,000 on treatments, including doctor visits, supplements and other medications.

“I was in a wheelchair until the end of September,” says Webb, who is bedridden most days and has developed a stutter. “I’m scared that I’m going back downhill again.”

Webb believes she was infected in the womb or from her mother’s breast milk. Those who support that possibility note that Borelli burgdorferi and syphilis are both spirochetes, a corkscrew bacteria. A woman can transmit syphilis to an unborn child. The CDC, however, does not support the theory that breast milk can transmit the bacteria, and the debate is still on about infection in the womb.

Sarah Davenport and Kerri Santos of Wilmington also went undiagnosed for a long time. As early as age 10, Davenport experienced joint pain. (Within a few weeks to two years after being infected, about 60 percent of people with Lyme disease develop arthritis.) “Something was not quite right,” says Davenport, who as a teen was a ward of the state and was rarely taken to the doctor. 

As an adult, Davenport pushed through her fatigue, working 80-hour weeks and skating for the Diamond State Roller Girls. “Then I crashed,” she says. She suffered such crippling migraines that she writhed in pain. Then she started having seizures.

Santos, a graphic designer, became worried when she couldn’t concentrate on a layout. One day, she couldn’t get out of bed. “It felt as though my legs weighed 800 pounds,” she says. “I couldn’t even text my boss to say I couldn’t come in.” Her symptoms grew worse, prompting numerous visits to the emergency room.

Santos considered Lyme disease after talking to friend Judy Setting of Wilmington. Setting, who’d sought help at major metropolitan hospitals for neurological issues before finally being diagnosed, was prescribed cocktails of intravenous and oral antibiotics. The treatment has “proven incredibly, undeniably effective,” says Setting, who at one point was quadriplegic. Santos, who also had IV drugs over a year, is also feeling better.

Davenport in the fall had a PICC line put in for IV antibiotics, and her insurer paid for it. But since it won’t cover the antibiotics, she’s in limbo. She already pays up to $5,000 a month out of pocket for supplements and treatments. 

Doctors who prescribe long-term antibiotics risk taking it on the chin. “The insurer reports them to the medical board because they’re not following the standard of care,” says nurse practitioner Rita Rhoads, owner of Integrative Health Consultants near Lancaster, Pa., who treats tick-borne illnesses. To avoid getting into a melee with insurers, her office has patients handle their own reimbursement matters; patients pay the office at the time of their appointment.

Rhoads says the Infectious Diseases Society of America influences the current standard of care and the guidelines are outdated. The International Lyme and Associated Diseases Society and its advocates want the IDSA to broaden Lyme disease diagnosis and treatment guidelines and address requirements for positive diagnoses. According to Rhoads, patients should be treated as long as they test positive and have symptoms. 

Rhoads treats both Davenport and Delle Donne. Santos sees a specialist in Washington, D.C. Webb goes to a clinic in Wichita. The women said they couldn’t find satisfactory treatment in their home state, and that driving to appointments is exhausting. 

Longtime sufferers might say they have “chronic Lyme disease,” but the CDC does not use that term, says Paula Eggers, the state infectious disease epidemiologist. Symptoms that extend past treatment are called “post-treatment Lyme disease syndrome,” which might stem from a compromised immune system or damaged tissues. It’s not a re-occurrence of the infection, she says.

While the debate continues, Webb and Davenport use Facebook and YouTube to raise awareness about Lyme disease.

In February Delle Done partnered with the Delaware 87ers—the NBA Development League affiliate of the Philadelphia 76ers—to host a Lyme disease awareness night at the Bob Carpenter Center in Newark. Davenport, who attended the event in a wheelchair and dressed in lime green, posted a photo on her Facebook page.

Today Delle Donne’s symptoms flair when she feels stressed. “I try to stay calm and get through it.”

She encourages people with Lyme disease or post-treatment symptoms to keep fighting.

“There are a lot of days when you probably will get some bad news. You have to stay on the path,” she says. “I got back on the court, and I won’t give up in an effort to raise awareness and money for treatment.”  

To avoid getting bitten by a blacklegged tick, which can transmit Lyme disease:

Wear light clothing so you can easily spot ticks.
Avoid the woods and grassy areas.
Wear protective clothing that covers your skin.
Use an insect repellent. Reapply after perspiring or swimming.
Regularly check yourself, your children and your pets for ticks.

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