Chronic (Persistent) Lyme Disease

Written by Anna Giorgi
Medically Reviewed by George Krucik, MD

What is Chronic Lyme Disease?

Chronic or persistent Lyme disease occurs if a patient who is treated with antibiotic therapy for the disease continues to experience symptoms. The condition also is referred to as “post-treatment Lyme disease.”

According to the Centers for Disease Control and Prevention (CDC), approximately 10 to 20 percent of patients who are treated with the recommended antibiotic therapy will have disease symptoms that persist after their treatment is completed. (CDC, 2012) These symptoms can include fatigue, joint or muscle aches, and cognitive dysfunction, and 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.

It is not known why some patients develop chronic Lyme disease while others do not. It is also unclear as to what exactly causes the chronic symptoms. According to Columbia University, doctors should treat cases on an individual basis, using a patient’s specific symptoms, medical history, and the latest research to guide treatment. (Columbia University)

Causes of Chronic Lyme Disease

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

Most patients with Lyme disease are treated successfully with a course of antibiotics lasting from 14 to 21 days. Typically, patients have a rapid and complete recovery from the disease.

Experts are unclear as to why some patients do not fully recover from symptoms after treatment. Some believe that the disease damages your immune system and tissues, and that your immune system continues to respond to the infection even after the bacteria are destroyed, causing symptoms. Other experts think that the symptoms result from persistent bacteria that were not destroyed by the antibiotics.

Risk Factors for Chronic Lyme Disease

You are at a greater risk for chronic Lyme disease if you are 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.

Also, you may be at a higher risk for these long-term symptoms if you are not treated with the recommended antibiotics; however, even patients who receive antibiotic therapy are at risk. Because the cause of chronic Lyme disease is unknown, there is no way to determine if 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. Patients with persistent symptoms often experience lingering episodes of:

  • fatigue
  • restless sleep
  • pain
  • aching joints or muscles
  • pain or swelling in the knees, shoulders, elbows, and other large joints
  • decreased short-term memory or ability to concentrate
  • speech problems

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.

For some patients, the frustration of long-term debilitating symptoms may make them willing to try unproven alternative therapies that claim to offer a cure. Talk to your doctor before beginning any new medications or therapies — use of these potentially toxic remedies can result in further health problems.

Diagnosis of Chronic Lyme Disease

Your doctor will diagnose Lyme disease 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 cannot determine what is causing your continued symptoms.

Depending on your symptoms, your doctor may recommend testing of specific affected areas to determine the level of damage. These tests may include:

  • an electrocardiogram (EKG) or echocardiogram to examine heart function
  • spinal tap to examine cerebrospinal fluid
  • an MRI of the brain to observe neurological conditions

Treatment of Chronic Lyme Disease

When diagnosed at an early stage, standard treatment for Lyme disease is a course of oral antibiotics that lasts about two to three weeks. Doxycycline, amoxicillin, and cefuroxime axetil are the most common medications prescribed. Other antibiotics or an intravenous treatment may be necessary depending on your condition and other symptoms.

The exact cause of chronic Lyme disease is not known, so there is some debate regarding appropriate treatment. Some experts advocate continued antibiotic therapy. However, there is evidence that such long-term antibiotic therapy may not improve your chances of recovery. According to the National Institute of Allergy and Infectious Diseases (NIAID),the prolonged use of these drugs can also cause health complications. (NIAID, 2009)

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

Living with Chronic Lyme Disease

Most patients 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 is not clear why some people fail to recover fully. (Mayo Clinic, 2011)

How to Prevent Chronic Lyme Disease

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

  • use insect repellant on your clothing and all exposed skin when walking in wooded or grassy areas where ticks live
  • 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 you have been bitten by a tick, 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 are infected. Early antibiotic intervention may reduce your risk of developing chronic symptoms.

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

  • a red, expanding bull’s-eye rash at the site of the tick bite
  • fatigue, chills, and general feeling of illness
  • all-over itching
  • headache
  • feeling dizzy or faint
  • muscle or joint pain
  • neck stiffness
  • swollen lymph nodes
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