A bite from a bacteria-infected tick causes Lyme disease. If you get the disease, you might have lingering symptoms. Some people have ongoing pain and fatigue, says Afton Hassett, PsyD, principal investigator at the Chronic Pain and Fatigue Research Center at University of Michigan.
The continued symptoms are known as chronic Lyme disease, or post-treatment Lyme disease syndrome (PTLDS).
When Shannon Coleman was diagnosed with ankylosing spondylitis (AS), she was surprised by how hard the condition hit her.
“I’d had issues with my back for more than 10 years before I finally got a diagnosis in May 2014,” she says. “I thought I’d be prepared because I work in the health care field -- I’m a medical assistant at a spine clinic -- but I was struck by how debilitating it was to suddenly not be able to live my normal life as a working mom.”
Coleman, like many other people with AS, had...
If you think you may have this syndrome, experts suggest these tips:
Don’t assume. Tell your doctor your symptoms, and let her check you.
Don’t rush to a specialist. For an accurate diagnosis, start with a primary care doctor, says Eugene Shapiro, MD. He's a professor of pediatrics, epidemiology, and investigative medicine at Yale School of Public Health.
Do take your antibiotic as prescribed. Even if you feel better, continue the course. It’s 4 weeks of medications at most. Some experts believe stopping the drugs before your prescription ends may cause symptoms to linger.
Do find experts who can help your symptoms. Ask your doctor if it would be worth your while to visit naturopaths, traditional Chinese medicine doctors, psychologists, or other experts. Many medical centers have complementary and alternative medicine experts on site.
Talk with your doctor about:
Low-dose antidepressants. These are sometimes prescribed for chronic pain and related symptoms.
Meds to help you sleep. “Disrupted sleep could very well be making many of these symptoms worse,” says Hassett.
Chinese medicine. Herbs may be used to tame reactions that trigger inflammation, and help symptoms such as joint pain and “brain fog.”
Exercise. “Slowly increasing movement can be incredibly helpful,” says Hassett.
Stress reduction. Mindfulness-based techniques may also help.
Fun activities. Don’t stop doing things that make you happy. “Positive emotions can be critical to recovery,” says Hassett.
What Causes Chronic Lyme Disease?
The CDC says 10% to 20% of people treated for Lyme disease develop ongoing symptoms. These can include fatigue, joint and muscle pain, and thinking problems. The symptoms can last more than 6 months.
No one knows what causes chronic Lyme disease. One theory is the infection damages tissues or alters the immune system.
Some pain experts think the immune system’s reaction to the Lyme infection causes changes that increase pain sensations and contribute to fatigue and poor sleep.
More research is underway.
No matter the cause, the symptoms are real. But most patients get better over time.
Centers for Disease Control and Prevention: “Post-Treatment Lyme Disease Syndrome.”
National Institute of Allergy and Infectious Diseases: “Chronic Lyme Disease.”
Phillip Baker, PhD, executive director, American Lyme Disease Foundation.
Eugene Shapiro, MD, professor of pediatrics, epidemiology of microbial disease, and investigative medicine, Yale School of Public Health.
Afton Hassett, PsyD, licensed clinical psychologist; principal investigator at the Chronic Pain and Fatigue Research Center and associate research scientist in the Department of Anesthesiology, University of Michigan Medical School.