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Lyme disease underreported, experts say

When Sally Stees found a large bull's-eye rash on the inside of her left arm after walking on her 106-acre farm in Atglen seven years ago, she attributed it to a spider bite.

prepares a shot for Sally Stees of Atglen. He says first exposure to Lyme (spread by the deer tick, above) may produce no rash and no positive blood test.
prepares a shot for Sally Stees of Atglen. He says first exposure to Lyme (spread by the deer tick, above) may produce no rash and no positive blood test.Read morePeter Fabulian

When Sally Stees found a large bull's-eye rash on the inside of her left arm after walking on her 106-acre farm in Atglen seven years ago, she attributed it to a spider bite.

But after she developed flu-like symptoms, a doctor suspected that Stees might have Lyme disease, a bacterial infection transmitted by deer ticks. The doctor prescribed Doxycycline for a month, but it didn't help. Then she prescribed Zithromax, and after two weeks, Stees started to feel better.

"I was back to normal," Stees, 67, said. "I could bike and run again and clean the house."

But over the next three years, Stees' health began to deteriorate. Her joints and muscles ached, and her knees swelled. She complained of a stiff neck, headaches, and short-term memory loss. She could not tolerate loud noises or bright lights.

Eventually, a neurologist diagnosed Stees with "Lyme neuropathy" because of numbness in her hands and feet.

Meanwhile, her blood work was still testing negative for Lyme disease.

Stees is one of thousands of people diagnosed with Lyme disease in Pennsylvania each year. The U.S. Centers for Disease Control ranked Pennsylvania second in the nation, after New York, with 3,242 reported cases in 2006.

Chester County ranked second in the state in 2006, with 459 reported cases, after Montgomery County, with 461 cases, according the Pennsylvania Department of Health.

Stephen Ostroff, an epidemiologist with the state health department, said Chester County ranks high for Lyme disease because of the number of suburban communities popping up in rural areas, where deer, mice and ticks abound. Deer and mice carry the ticks that spread the disease.

"The highest-risk situation is around the home if the property backs up against woods," Ostroff said, "and there is a lot of that in Chester County."

According to the Chester County Health Department, there were 524 confirmed cases of Lyme disease in 2007 (through Oct. 31) with most of the cases occurring in the eastern part of the county, including East and West Pikeland, Charlestown, Tredyffrin and Willistown Townships, among others.

But Doug Fearn, president of the Lyme Disease Association of Southeastern Pennsylvania, believes the actual number is in the thousands. "The CDC estimates only one out of 10 cases gets reported," he said, "so if you multiply 500 cases by 10, you get 5,000 new cases per year, and that's a conservative estimate."

Some cases of Lyme disease do not get reported because the patient's symptoms do not meet the surveillance criteria established by the CDC, namely a bull's-eye rash or a positive blood test, Ostroff said.

Fearn agrees. "The bar is set too high," he said.

According to CDC medical epidemiologist Paul Mead, underreporting of many diseases is not unusual, because a certain degree of error is inherent in the reporting process.

John Maher, Chester County's health director, said some doctors who treat patients for Lyme disease don't report all their cases because they may be relying on other clinical symptoms besides the bull's-eye rash or the positive blood test to make their diagnosis, and they don't want the hassle of fighting with the insurance companies to get treatment approved. Other physicians worry they will be charged with fraud, while some dread the paperwork required to report the disease to public health agencies, Maher added.

Underreporting of Lyme disease cases is not the only thing that worries Fearn. His organization and others are also challenging the guidelines for Lyme disease diagnosis and treatment recommended by the Infectious Diseases Society of America (IDSA), the CDC, and other public health officials.

One of the biggest organizations protesting IDSA and CDC guidelines - in what has come to be known as the "Lyme Wars" - is the International Lyme and Associated Diseases Society (ILADS), a community of medical professionals dedicated to providing another standard of care for patients suffering from Lyme disease.

ILADS doctors and researchers believe blood tests used to diagnose Lyme disease are unreliable. Fearn cites as evidence a study conducted by Johns Hopkins University in 2005, which reported that the blood tests missed 75 percent of positive Lyme disease cases.

Some infectious disease specialists agree the test is not perfect. "The blood test is lousy and should not be used to diagnose the first stage of Lyme disease," said Todd Barton, an infectious-disease specialist with the University of Pennsylvania Hospital.

But the test is "extremely accurate," Barton said, during the second or third stage of the disease because by then the bacteria, in most cases, has been in the body long enough to produce antibodies, an indication that the body is responding to an infection.

ILADS members also challenge the CDC's claim that 70 to 80 percent of infected persons will exhibit a bull's-eye rash. In reality, Fearn said, fewer than half of those diagnosed with Lyme disease recall seeing a rash.

That does not mean the rash was never there, said Barton. Ticks have a tendency to crawl to places where the rash might not be visible, such as between the buttocks, the groin area, or behind the knees, he said.

Another point of contention is the extent to which antibiotics should be used to treat what some researchers have identified as persistent or chronic Lyme disease.

ILADS recommends treating patients suffering from chronic Lyme disease with antibiotics until their symptoms improve or disappear, even if it takes years.

However, infectious-disease specialists typically recommend only a month of antibiotics, even for second- or third-stage Lyme disease, Barton said, because trials have shown long courses of antibiotics to be ineffective, which is why health-insurance companies refuse to pay for them.

The controversy has become so intense it has attracted the attention of state and federal lawmakers who are considering legislation that would enforce specific diagnostic and treatment standards.

Stees eventually sought treatment with Peter Fabulian, a doctor with a family practice in Kennett Square, who diagnosed chronic Lyme disease. Fabulian has a reputation for being a "Lyme literate" physician who specializes in treating Lyme-disease patients who have had little or no success with infectious-disease specialists, he said.

Fabulian believes a first exposure to an infected tick will create neither a bull's-eye rash nor a positive blood test, a theory disputed by infectious-disease specialists and epidemiologists.

Although Fabulian begins treating his patients with Lyme disease the conventional way, he feels an obligation to try something else if they don't improve. "It's our duty as physicians to find what will help our patients get better," he said.

In January, Fabulian began driving to Stees' farm every Tuesday morning on his way to work to administer a shot of the antibiotic Rocephin. She also takes Zithromax, an oral antibiotic.

Because Stees' weekly shots are not covered by her health insurance, she is paying for them with money she inherited after her mother's death. Still, she feels the shots are worth it.

"Without the antibiotics, the pain is horrible," she said. "It starts in my knees and goes up my hips and into my shoulders. They say long-term treatment does not help, but I would be in bed or in a wheelchair in agony without it."

How to Avoid Lyme Disease

The CDC and Chester County Health Department recommend taking certain precautions to minimize the risk of contracting Lyme disease.

Wear a hat and long sleeves, pants and socks when walking in wooded, grassy areas, especially during May, June and July, when ticks are most active.

Use an insect repellent with 20 to 30 percent DEET on exposed skin and clothing.

While hiking, stay on the trail.

Check yourself and your pets frequently for ticks when you are outside.

Inside the home, inspect all parts of your body, especially your armpits, scalp and groin.

Keep your grass mowed and keep leaves, brush and wood piles away from the house.

Move bird feeders away from the house.

Remove any ticks you find with clean tweezers by pulling the tick upward and away from the skin with one motion.

Clean and disinfect the bite site.

If possible, preserve the tick to show your doctor.

Seek medical treatment if you notice a rash or experience symptoms of fatigue, chills, fever, headache, muscle and joint aches, and swollen lymph nodes.