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Lyme disease causes a prolonged illness in some patients that may be more serious and widespread than previously understood—and it costs the U.S. healthcare system an estimated $712 million to $1.3 billion per year, or nearly $3,000 per patient on average, according to a study by researchers at Johns Hopkins University in Baltimore, Maryland. The costs include return doctors’ appointments and testing, likely done to look into patients’ complaints of fatigue, pain, and problems with memory.

Often referred to as post-treatment Lyme disease syndrome (PTLDS), or chronic Lyme disease, the prolonged illness is controversial because doctors disagree on whether it can be a severe and chronic problem, or if it can be managed with reassurance for the patient and symptomatic therapy. There is no approved treatment or blood test for PTLDS.

John Aucott, MD, lead study author and an assistant professor of rheumatology at the Johns Hopkins University School of Medicine, urged clinicians to take PTLDS patients’ symptoms seriously. "These patients are lost," he said in a prepared statement. "No one really knows what to do with them. It's a challenge, but the first thing we need to do is recognize this is a problem. There's not a magic pill. These patients already got the magic pill and it didn't work."

Aucott and his colleagues examined the actual cost of treating patients in the year following their Lyme disease diagnosis. "Regardless of what you call it, our data show that many people who have been diagnosed with Lyme disease are in fact going back to the doctor complaining of persistent symptoms, getting multiple tests and being retreated,” study co-author Emily Adrion, MSc, a PhD candidate in the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health, said in a prepared statement. “They cost the health care system about $1 billion a year, and it is clear that we need effective, cost-effective and compassionate management of these patients to improve their outcomes even if we don't know what to call the disease."

The study examined medical claims data for approximately 47 million people enrolled in a wide range of health insurance plans in the United States between 2006 and 2010. Researchers identified 52,795 Lyme disease patients under age 65 who had received antibiotic treatment within 30 days of either a Lyme disease diagnosis or a test order for the disease. They then compared those claims with nearly 264,000 similar patients who had no evidence of exposure to Lyme disease.

“The researchers found that, on average, people with Lyme disease cost the system $2,968 more than matched controls. They had 87 percent more visits to the doctor and 71 percent more visits to the emergency room within the year following diagnosis,” according to a press release describing the findings. “Those with Lyme disease were nearly five times more likely to have any PTLDS-related diagnosis —fatigue, nerve pain, joint pain, cognitive troubles—within that year and were 5.5 times more likely to have a diagnosis of debility and excessive fatigue.”

Also, for those who had Lyme disease, one or more diagnoses of PTLDS was tied to $3,798 more in healthcare costs compared with those who had no symptoms after treatment.

About 10% to 20% of those treated for Lyme disease with a course of antibiotics for 2-4 weeks continue to have symptoms after completing treatment, according to the Centers for Disease Control and Prevention. “More than 63 percent of those treated for Lyme disease had at least one PTLDS-related diagnosis—a rate 36 percentage points higher than those who did not have Lyme disease,” according to a press release.