When Robert Myron and his family returned to New England after living overseas, they thought they had found a little bit of heaven in Sudbury, Mass. But their idyllic wooded neighborhood was also infested with deer ticks. In 2013, Mr. Myron was bitten by a tick infected with Lyme disease.
“Although Lyme disease usually begins with an expanding red skin lesion at the site of the tick bite, it may begin with only flu-like symptoms.”
Luckily, Mr. Myron lives near Massachusetts General Hospital, whose Lyme Arthritis Program is recognized internationally for its expertise in researching, diagnosing and treating the manifestations of Lyme disease, including Lyme arthritis. With an interdisciplinary approach, Mass General clinicians from Rheumatology, Neurology, Infectious Disease or other specialties are available to provide the best possible care and treatment.
“Although Lyme disease usually begins with an expanding red skin lesion at the site of the tick bite, it may begin with only flu-like symptoms,” says Allen Steere, MD, a Lyme specialist in the department of Rheumatology who led the team that discovered Lyme disease in the late 1970s. “For patients who don’t have an expanding bull’s-eye rash, there may be a delay in diagnosis. Moreover, the currently used blood test for support of the diagnosis may take days to get the results. In the meantime, the symptoms of Lyme disease may become increasingly severe.”
Early Lyme Disease Symptoms
In addition to an expanding skin lesion, the symptoms of early Lyme disease include headaches, stiffness and pain in joints, muscles and other soft tissues.
The Centers for Disease Control estimates that around 300,000 new cases of Lyme disease occur annually in the United States. Since 20-30 percent of patients don’t get the telltale bull’s eye rash, and since the early symptoms may appear flu-like, not all cases are recognized and treated early. Left untreated, neurologic or cardiac involvement or arthritis may develop. In other patients, the early stage of the disease is asymptomatic, and the illness begins with these more serious later manifestations of the infection.
Early Lyme disease (the stage with the skin lesion) can usually be treated successfully with an oral antibiotic, such as doxycycline or amoxicillin, for two or three weeks. More than 90 percent of patients improve or resolve their symptoms within several weeks.
When Lyme disease is not treated or recognized early, a second stage, which usually occurs within weeks, can bring increasingly severe symptoms.
Joint Pain Increases
Mr. Myron didn’t have a bull’s eye skin lesion or a rash, but over several months he developed increasing joint pain, his stamina deteriorated and he had neurologic symptoms. His primary care doctor prescribed muscle relaxants, but when a test for Lyme disease came back positive, he went on three weeks of doxycycline.
When Lyme disease is not treated or recognized early, a second stage, which usually occurs within weeks, can bring increasingly severe symptoms. They include neurological signs and symptoms or heart block. The disease usually still responds to antibiotics at later stages, but treatment may need to be 4-to-8 weeks, and some patients require intravenous antibiotics. Despite antibiotic treatment, a small percentage of patients suffer joint inflammation for months or even several years and apparent spirochetal killing, a condition known as antibiotic-refractory Lyme arthritis. Similarly, some patients may experience post-Lyme symptoms. They include joint or muscle pain, neurocognitive difficulties or fatigue for months or years after antibiotic treatment.
About eight weeks after his initial antibiotic regimen, some of Mr. Myron’s symptoms came back. Although he was prescribed a subsequent regimen of doxycycline, followed by amoxicillin and then two weeks of intravenous ceftriaxone, his symptoms grew worse. He saw several doctors before being referred to Dr. Steere
On the Path to Health
“It was only when I saw Dr. Steere that I was properly diagnosed. I had central nervous system infection, and needed a final regimen of antibiotics, which was one month of daily intravenous ceftriaxone,” Mr Myron says. “After this treatment was ended, I began the slow recovery through the ‘post-Lyme disease syndrome’ part of the illness. Dr. Steere’s treatment got me back on the path to health.
“He has been the only doctor who has been ‘right’ about everything in my diagnosis and treatment,” Mr. Myron adds.
Mass General’s Lyme research program is one of a handful in the country to do both clinical and laboratory studies of patients with Lyme disease.
Mass General’s Lyme research program is one of a handful in the country to do both clinical and laboratory studies of patients with Lyme disease. Dr. Steere used his experience with the disease and his access to the lab studies to develop a treatment for Mr. Myron that addressed the disease’s toll.
Developing Better Diagnostic Tests
“Our lab team is trying to understand why this disease is more severe and debilitating in some patients than others, and how to effectively treat more severe or prolonged cases,” Dr. Steere says. “Together with Dr. John Branda in the Clinical Microbiology Laboratory at Mass General, we are also developing better, more rapid diagnostic tests, which would allow faster treatment.”
Mr. Myron continues to recover and has returned to work full time. “But I worry about other people who don’t realize they have Lyme disease and don’t get diagnosed quickly,” he says. “It took me nearly a year to go to Dr. Steere and another to get back on my feet. Research in human studies is vitally important in helping scientists and clinicians better understand this complicated disease and provide proper treatment. Reductions in National Institutes of Health funding for medical research have left a glaring need for more private funding in this area.”
To learn more about how you can contribute to Lyme disease research at Mass General, please contact us.