You are enjoying your vacation on the East Coast in the thick of the heady, swollen heat of summer. You spend your days roaming swamps, swimming in lakes and sunbathing by the water. One particularly hot day you notice a rash on your leg — it looks a little like a target, or a bulls-eye, but you don’t think much of it. After all, bugs are a consequence of East-Coast weather, and you look forward to when the rash subsides. After a few days, it does.
A few months later, however, you begin to feel tired. You think that you have the flu, but it’s lasting longer than usual. Soon your joints begin to swell and your limbs hurt. You go to the doctor, and he diagnoses you with Lyme disease. He begins administering a treatment regimen of doxycycline to cure you of Lyme disease.
Most people’s struggles with Lyme disease end here since Lyme disease has historically been considered an “easier” disease to treat. But researchers Emily Adrion, John Aucott, Klaus Lemke and Jonathan Weiner from the Johns Hopkins Bloomberg School of Public Health have made startling discoveries about the disease post-treatment. These findings suggest that Lyme disease may not be as easy to cure as doctors and researchers believe.
The study, entitled “Health Care Costs, Utilization and Patterns of Care following Lyme Disease” and published in the journal PLOS One, examined claims of both Lyme disease and post-treatment Lyme disease symptoms, or PTLDS, and their impact on the American health care system. What it found was that about 10-20 percent of patients treated for Lyme disease exhibited PTLDS for weeks, months and even years after being supposedly cured.
The researchers came to this conclusion by studying the medical claims of 47 million people from the age of zero to 64 between 2006 and 2010. All-in-all, over 57,000 cases of patients with Lyme disease were studied and compared to over 260,000 cases of patients who did not show any evidence of exposure to Lyme disease. What the researchers found was that Lyme disease was associated with $2,968 higher total health costs per person, along with a 4.77 times greater chance of having a PTLDS-related diagnosis. This discovery was well above the expected average cost of Lyme disease treatment, and it indicated that the disease is more serious and difficult to treat.
The Hopkins researchers concluded that the total medical cost of Lyme disease in America per year ranged between $713 million and $1.3 billion. But though their research showed evidence of the existence of a post-treatment disease, the authors did not place PTLDS as the primary focus of their paper.
They urged the public not to focus on whether PTLDS existed, but to take steps to increase the effectiveness and compassion of the care of patients with Lyme disease. Even without an understanding of the exact mechanism of PTLDS, both patients and the health care system would benefit from a heightened awareness of the symptoms of Lyme disease and a concerned, skilled doctor who prescribed treatments and improved outcomes more quickly and effectively.
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