Chronic Lyme Disease (Post-Treatment Lyme Disease Syndrome)

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 birds. Lyme disease is also called borreliosis or, if the symptoms are neurologic, 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, though there is no evidence to support this conclusion. 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.

You’re at a greater risk for post-treatment Lyme disease syndrome if you’re infected by the bite of a diseased tick. If the infection 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 post-treatment Lyme disease syndrome is unknown, there’s no way to determine whether it will progress to the chronic stage.

Typically, the symptoms of post-treatment Lyme disease syndrome resemble those that occur in earlier stages. People 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

Living with persistent symptoms of Lyme disease after treatment 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.

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:

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

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 post-treatment Lyme disease syndrome 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 will 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 post-treatment Lyme disease syndrome 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.

Most people with post-treatment Lyme disease syndrome 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.

While you may not be able to prevent post-treatment Lyme disease syndrome, 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.

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:

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