Chronic Lyme Disease (Persistent Lyme Disease)

Medically reviewed by Nancy Choi, MD on November 29, 2017Written by Anna Giorgi

What is chronic Lyme disease?

Chronic Lyme disease occurs when a person who’s treated with antibiotic therapy for the disease continues to experience symptoms. The condition is also referred to as persistent Lyme disease or post-treatment Lyme disease.

According to the New England Journal of Medicine, approximately 10 to 20 percent of people who are treated with the recommended antibiotics will have disease symptoms that persist after they complete treatment. These symptoms can include fatigue, joint or muscle aches, and cognitive dysfunction. They may last up to six months or longer. These symptoms can interfere with a person’s normal activities and may cause emotional distress as a result. However, most people’s symptoms improve after six months to a year.

It’s not known why some people develop chronic Lyme disease and others don’t. It’s also unclear what exactly causes the chronic symptoms. According to the Columbia University Medical Center, doctors should treat cases on an individual basis. A person’s specific symptoms and medical history, as well as the latest research, should be used to guide treatment.

Causes of chronic Lyme disease

Lyme disease is a bacterial infection that’s caused by the bacteria Borrelia burgdorferi. You can become infected if you’re bitten by a tick that carries the bacteria. Typically, black-legged ticks and deer ticks spread this disease. These ticks collect the bacteria when they bite diseased mice or deer. Lyme disease is also called borreliosis or Bannwarth syndrome.

Most people with Lyme disease are treated successfully with a course of antibiotics. People with Lyme disease typically have a rapid and complete recovery.

Experts are unclear as to why some people don’t fully recover after treatment. Some experts think that the symptoms are caused by persistent bacteria that weren’t destroyed by the antibiotics. Others believe that the disease damages your immune system and tissues. Your damaged immune system continues to respond to the infection even after the bacteria are destroyed, causing symptoms.

Risk factors for chronic Lyme disease

You’re at a greater risk for chronic Lyme disease if you’re infected by the bite of a diseased tick. If the disease progresses to the chronic stage, your symptoms might continue for weeks, months, or even years after the initial tick bite.

You may also be at a higher risk for these long-term symptoms if you’re not treated with the recommended antibiotics. However, even people who receive antibiotic therapy are at risk. Because the cause of chronic Lyme disease is unknown, there’s no way to determine whether it will progress to the chronic stage.

Symptoms of chronic Lyme disease

Typically, the symptoms of chronic Lyme disease resemble those that occur in earlier stages. People with persistent symptoms often experience lingering episodes of:

Complications of chronic Lyme disease

Living with persistent symptoms of Lyme disease may affect your mobility and cognitive skills. It can also cause extreme lifestyle changes and emotional stress.

Some people who experience long-term debilitating symptoms may be willing to try unproven alternative therapies. Talk to your doctor before beginning any new medications or therapies. Although they may claim to offer a cure, these potentially toxic remedies can result in further health problems.

Diagnosis of chronic Lyme disease

Your doctor will diagnose Lyme disease by using a blood test that checks your level of antibodies to the disease-causing bacteria. The enzyme-linked immunosorbent assay (ELISA) test is the most common for Lyme disease. The Western blot test, another antibody test, can be used to confirm the ELISA results. These tests may be done at the same time.

While these tests can confirm infection, they can’t determine what’s causing your continued symptoms.

Depending on your symptoms, your doctor may recommend testing of specific affected areas to determine the level of damage or the body parts that have been affected. These tests may include:

Treatment of chronic Lyme disease

When diagnosed at an early stage, standard treatment for Lyme disease is a two- to three-week course of oral antibiotics. Doxycycline, amoxicillin, and cefuroxime axetil are the most commonly prescribed medications. Depending on your condition and symptoms, other antibiotics or an intravenous (IV) treatment may be necessary.

The exact cause of chronic Lyme disease is not known, so there’s some debate regarding appropriate treatment. Some experts advocate continued antibiotic therapy. However, there’s evidence that such long-term antibiotic therapy may not improve your chances of recovery. According to the National Institute of Allergy and Infectious Diseases, prolonged use of these drugs can also cause complications.

Treatment for chronic Lyme disease is often focused on reducing pain and discomfort. Prescription or over-the-counter (OTC) pain relievers may be used to treat joint pain. Nonsteroidal anti-inflammatory medications (NSAIDs) and intra-articular steroids can be used to treat problems such as joint swelling.

Living with chronic Lyme disease

Most people with chronic Lyme disease recover from persistent symptoms with time. However, it can take months, and sometimes years, before you feel completely well. According to the Mayo Clinic, a small number of people continue to experience symptoms, including fatigue and muscle aches, despite treatment. It’s unclear why some people don’t recover fully.

How to prevent chronic Lyme disease

While you may not be able to prevent chronic Lyme disease, you can take precautions to prevent coming into direct contact with infected ticks. The following practices can reduce your likelihood of getting Lyme disease and developing persistent symptoms.

Prevent tick infestation

  • When walking in wooded or grassy areas where ticks live, use insect repellant on your clothing and all exposed skin.
  • When hiking, walk in the center of trails to avoid high grass.
  • Change your clothes after walking or hiking.
  • When checking for ticks, thoroughly examine your skin and scalp.
  • Check your pets for ticks.
  • Treat clothing and footwear with permethrin, an insect repellant that will remain active through several washings.

If a tick bites you, contact your doctor. You should be observed for 30 days for signs of Lyme disease. You should also learn the signs of early Lyme disease and seek prompt treatment if you think you’re infected. Early antibiotic intervention may reduce your risk of developing chronic symptoms.

The signs of early Lyme disease can occur from 3 to 30 days after a bite from an infected tick. Look for:

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