It’s now 35 years since a corkscrew-shaped bacterium was identified as the cause of Lyme disease. But we still have no safe and effective vaccine, no reliable diagnostic test and no adequate therapy.
What we do have is tens of thousands of lives annually devastated by significant health, personal and financial costs.
The National Institutes of Health, the leading funding body for biomedical research in this country, should scale up research funding for Lyme disease. In its absence, nonprofit organizations like ours have taken up the challenge, while hundreds of thousands suffer in misery from a spring fever that for some may not end.
Lyme disease, first described more than 40 years ago, now infects more than 320,000 Americans each year, and has been identified in every state. Transmitted by black-legged tick bites that peak in the warm months, Lyme disease is now the country’s most common illness spread by a bug bite. Symptoms range from skin rashes to fatigue and joint pain, and for most people, a few weeks of antibiotics are enough to clear the infection. However, researchers at the Lyme Disease Clinical Research Center at Johns Hopkins University have shown that about 10 percent to 20 percent of those infected progress to chronic multi-organ illness, such as severe musculoskeletal pain, cardiac failure and neural impairment, including memory and cognitive loss.
Although the causes of post-treatment Lyme disease syndrome, or PTLDS, are unknown, its devastating toll is well-documented. It’s a condition that can mean months and even years of disability, with a tremendous impact on school attendance and employment. Researchers at the Centre for Infectious Disease Control in the Netherlands calculated more than nine years of healthy life lost in people with persistent Lyme disease. Recently, it was estimated that health care costs for Lyme disease patients exceed $1 billion per year, according Dr. John Aucott of Johns Hopkins University School of Medicine.
Early diagnosis, then, should be key to reducing this health and economic burden. What complicates the treatment of all Lyme disease patients, however, is the lack of a definitive diagnostic test. The standard blood test detects antibodies that recognize the Lyme bacteria, which is called Borrelia burgdorferi. This test is laborious and lacks sensitivity, correctly identifying only 29 percent to 40 percent of patients who have a skin rash commonly associated with tick bites. Furthermore, at least 20 percent of patients do not even develop a skin rash.
Not only is Lyme disease difficult to diagnose, we also don’t understand why some people fail treatment, and for these patients, we have no effective therapy or ways to predict disease course. One of us is a neurologist with decades of clinical experience in treating patients with neurological complications of Lyme disease. Many patients have varying symptoms that mimic different neurological diseases, such as multiple sclerosis or Lou Gehrig’s disease. Often, there are ambiguous diagnostic test results that can lead to potentially wrong treatment. Such confusion is a hallmark of PTLDS diagnosis and treatment, and it frustrates the efforts of doctors caring for these patients. Without clear diagnostic and therapy guidelines, patients are often dismissed as malingering or as hypochondriacs.
Last year, the National Institutes of Health spent $24 million on Lyme disease research, but it’s not enough. It spent almost twice as much for research on West Nile virus, a mosquito-borne virus, which had less than 2,000 reported U.S. cases and a 6 percent fatality rate. Hepatitis C virus infection is now a curable disease, yet received $96 million in funding.
Of course, we should not pit infectious diseases against each other in a competition for research dollars. Instead, we need to increase research on all infectious diseases, because it’s an important investment that protects our country’s health, productivity and security. Infectious diseases like Lyme infect anyone — young, old, military, civilian, sick or healthy. We already have the research and medical infrastructure ready to work toward understanding and curing them, and with additional funding, we will be on our way to better diagnosis and treatment.
The National Institutes of Health should increase funding to study Lyme disease. As the number of infected and disabled grows, it simply makes sense.
Dr. Harriet O. Kotsoris and Mayla Hsu are at Global Lyme Alliance, a nonprofit that raises funds for research on Lyme disease and other tick-borne illnesses. They are based in Greenwich, Conn., at: Globallymealliance.org. They wrote this article for the Hartford Courant.