When Lyme Disease Symptoms Linger

By Kathleen Doheny. Medically reviewed by Tom Iarocci, MD. May 7th 2016

Lyme disease, caused by bacteria transmitted through the bite of infected ticks, can bring on a host of troublesome symptoms: fever, headache, fatigue and a red, circular skin rash.

Once diagnosed, usually by noting symptoms and getting a blood test that detects antibodies to the bacteria, doctors typically prescribe antibiotics for two to four weeks. Left untreated, Lyme infection can be bad news for the joints, the heart and the nervous system.

Most people feel better after finishing these antibiotics, but approximately 10 to 20 percent don't. This smaller percentile still reports symptoms weeks, months or even years later. Some patients report they are so disabled that they cannot work or do other normal, everyday activities.

Experts are baffled, still trying to find out why symptoms persist in some and why other cases of Lyme disease linger in others.

What is Post-treatment Lyme Disease Syndrome?  

While many call this problem ''chronic Lyme disease,'' a more accurate term is post-treatment Lyme disease syndrome (PTLDS), according to the CDC.

PTLDS is a better term because it reflects the uncertainty about the cause of the lingering symptoms, according to John Halperin, MD, chair of neurosciences at Overlook Medical Center in Summit, N.J., and professor of neurology and medicine at the Icahn School of Medicine at Mount Sinai, N.Y.

Most experts believe the lingering symptoms are due to damage done to the body's tissues and immune system by the original infection. However, other experts say the symptoms are due to persistent and active infection.

One thing experts agree on, however: The condition of lingering Lyme disease symptoms definitely exists. The main issue, Halperin explains, is that experts don't know why the symptoms persist in only some people, resulting in uncertainty about how to help.

Clues About Lingering Symptoms of Lyme Disease

Ongoing research has produced some clues:

  • Depression most likely does not explain PTLDS. While a substantial number of those with Lyme disease have symptoms of depression, most do not. So, focusing on depression as an explanation for lingering Lyme symptoms is misguided, says Halperin.
  • A person's ''resilience'' — the ability to respond to stressors that are both physical and psychological —  does seem to predict how well and how quickly someone infected with Lyme disease will ''bounce back." In fact, in one study, the Lyme disease patients with the highest levels of resilience when first diagnosed were more likely to recover fully after the initial treatment.

Experts say that how resilient you are depends on both learned behaviors and biological mechanisms. Resilience is a psychological characteristic of an individual, and it’s thought to be intertwined with how much “positive affect” (i.e., feeling upbeat and often expressing gratitude) a person has prior to suffering from the acute symptoms. Those who were lower in positive affect were more likely to develop persistent symptoms.

Take the Next Steps

For now, doctors caring for those with PTLDS may offer them the same treatment options as they do for patients with chronic fatigue or fibromyalgia, according to the CDC, as some symptoms are similar. Those treatments include individualizing the treatment plan and using as few drugs as possible.

There are further suggestions to consider:

  • Always consult your doctor after performing your own research online or elsewhere. On addition, check in with your doctor to ensure you are not suffering any ailments other than Lyme disease that may be causing your symptoms.
  • Be aware that very lengthy, prolonged courses of antibiotics have not resulted in lasting benefits for patients and have been linked with complications. Most patients do tend to recover from PTLDS, although a full recuperation may take months.
  • Focus on getting enough sleep and eating a healthy diet, then track your symptoms to see if you notice improvement.
  • Halperin encourages patients to gradually increase their physical activity: "Try to reprogram yourself to get back to a more normal life.”

For Caregivers

If you suspect a loved one may have PTLDS, here are ways to help:

  • Encourage the loved one to check in with a doctor to rule out other problems that might explain the symptoms, such as another medical condition or depression.
  • Suggest eating a healthy diet, getting enough rest and regular exercise routine.

Suggest seeking help from a counselor for more support.

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