June 2019 Issue

Focus on Fitness: Exercising With Lyme Disease
By Jennifer Van Pelt, MA
Today’s Dietitian
Vol. 21, No. 6, P. 48

Summer and outdoor fun bring an increased risk of contracting tickborne diseases, the most common of which is Lyme disease. Spread by the bite of a deer tick (also called the blacklegged tick) carrying the Borrelia burgdorferi bacterium, Lyme disease is named after Old Lyme, Connecticut, where the first cases were observed in the 1960s and 1970s. The cause of the disease—infected ticks and the body’s immune response to the infection—wasn’t identified until 1981. According to medical historians, Lyme disease likely has been around for hundreds, if not thousands, of years, but its symptoms were attributed to other known diseases, such as rheumatoid arthritis. The Centers for Disease Control and Prevention estimates that more than 300,000 cases of Lyme disease occur annually in the United States, and it’s one of the fastest growing vector-borne infections in this country.1 Originally considered to be primarily a Northeastern region concern, Lyme disease has been reported in every state except Hawaii. However, the highest risk and prevalence occur in the Northeastern and Mid-Atlantic states, North Central states (eg, Wisconsin and Minnesota), and West Coast (especially northern California).

If caught and treated appropriately in its early stages, Lyme disease is generally curable. However, because deer ticks are extremely small, they’re easily missed, even by those who are diligent about checking for ticks after outdoor activities. The characteristic bull’s-eye rash around a tick bite also may be missed, depending on the bite’s location, or it may not appear. Therefore, Lyme disease progresses in many cases. Blood tests aren’t always accurate, and because symptoms are common to many other conditions, such as autoimmune diseases, Lyme disease may not be diagnosed immediately and progresses even further. Currently, there’s no effective treatment or cure for late-stage Lyme disease. Even in those treated with antibiotics at an early stage, symptoms can persist after treatment. Ten percent to 20% of individuals who have been treated for Lyme disease continue to have chronic symptoms.2

Originally referred to as chronic Lyme disease because it was thought that the Lyme bacteria were “hiding” in the body and causing continued symptoms, this condition is now called posttreatment Lyme disease syndrome or post-Lyme disease syndrome (PLDS) because it’s believed that persistent symptoms are a lingering immune response to the infection and treatment. Symptoms can range from minor fatigue and joint aches to serious neurologic issues and can occur months or even years after initial treatment. PLDS remains a diagnostic and treatment mystery because there’s no way to predict which Lyme disease patients will get it, or how long it will last. The medical community still is debating and researching it. PLDS affects everyone differently, and most have multiple, co-occurring symptoms, including the following:

  • excessive fatigue;
  • severe headaches;
  • numbness, tingling, and/or shooting pains in the arms, hands, legs, and face;
  • Bell’s palsy (a neurologic disorder causing drooping of one side of the face);
  • joint pain and stiffness;
  • muscle pain;
  • sleep problems;
  • hearing loss;
  • vertigo;
  • cognitive issues, such as difficulty with short-term memory;
  • heart issues, such as slower or irregular heartbeat; and
  • mood issues, such as depression and anxiety.

Exercising with Lyme disease is also a topic of debate. There’s very little research or consensus on exercising with Lyme disease or PLDS. Professional clinical guidelines focus on prevention and appropriate antibiotic therapies. Most available guidance has been shared anecdotally or online in blogs by a few physicians specializing in Lyme disease treatment, by naturopaths, or by patients with Lyme or PLDS. For those being treated for active, early-stage Lyme disease, light to moderate exercise—as much as can be tolerated—is recommended to help alleviate joint and muscle stiffness. Exercising isn’t recommended if the patient has any fever or flulike symptoms. For patients whose Lyme disease has affected their heart, a cardiac stress test should be performed and they should be examined by a cardiologist before beginning an exercise program.

Some physicians have speculated that exercising with Lyme disease can facilitate treatment because it improves blood flow to tissues, which helps speed antibiotic penetration to more bacteria throughout the body. In addition, it’s thought that by increasing body temperature and levels of blood oxygen, exercise makes the body inhospitable to the Lyme bacteria. However, moderate to intense aerobic exercise isn’t recommended because of the potential presence of Lyme bacteria in the heart and because it can adversely affect the immune system and impede healing. One physician affiliated with the International Lyme and Associated Diseases Society proposed an exercise program for those being treated or recovering from Lyme disease. The program, which is designed to increase muscle strength and mobility while protecting joints, tendons, and ligaments that may be weakened by Lyme disease, includes the following3:

  • No extended aerobic conditioning, even low-impact activities, is allowed.
  • Whole-body strengthening and stretching exercises using light resistance and many repetitions are done with weight machines, resistance bands, or other strengthening equipment or bodyweight exercises.
  • Sessions are no longer than an hour and not more frequently than every other day. Some patients may require two or more days of rest in between sessions.
  • Patients should rest on nonexercise days.
  • Aerobic exercise is added to the program only after medication treatment ends and the patient is recovering.

The strict prohibition of aerobic exercise in this physician’s recommended program is considered somewhat controversial and unproven. Other physicians recommend light to moderate aerobic exercise that’s easy on the joints, such as walking and swimming. Gentle or chair yoga, tai chi, and qigong also are recommended for stretching and flexibility, as well as helping balance and joint stability.

For those with PLDS, exercise type and frequency will depend on symptoms, and recommendations are similar to those for patients with fibromyalgia and autoimmune conditions because PLDS also can cause flare-ups in symptoms after exercise. In general, those with PLDS will benefit from regular exercise that’s appropriate for their fitness level and symptoms. Only one guideline mentions exercise—in 2016, the Swiss Society for Infectious Diseases briefly noted that low-impact aerobic exercise is beneficial as one component of treatment.4 Although there are no comprehensive guidelines specifically on exercising with PLDS, the following guidance can be used for developing exercise programs for symptom relief, based on research that has shown benefit for conditions with similar symptoms:

  • For those with joint problems (ie, PLDS arthritis), water exercise, gentle yoga, and tai chi/qigong are most beneficial and the safest activities. Other low-impact activities also may be appropriate, depending on the joints affected and the severity of symptoms.
  • PLDS patients with neurologic symptoms may benefit from exercise programs designed for those with Parkinson’s disease, since the symptoms are similar. If vertigo is a symptom, chair exercises or other supported activities (eg, equipment with handles for balance) may be safest and reduce fall risk.
  • Gentle yoga, tai chi, qigong, and meditation may help with fatigue, cognitive issues, and sleep problems.
  • Light to moderate resistance training and stretching can help with muscle and joint pain and stiffness, as well as improve overall fitness.
  • Support groups and exercise classes for those with fibromyalgia and arthritis may be appropriate for those with PLDS and provide both fitness and social benefits.

— Jennifer Van Pelt, MA, is a certified group fitness instructor and health care researcher in the Lancaster, Pennsylvania, area.


References
1. Lyme disease. Centers for Disease Control and Prevention website. https://www.cdc.gov/lyme/index.html. Updated December 21, 2018.

2. Meyerhoff JO, Steele RW, Zaidman GW. What is the prognosis of post-treatment Lyme disease syndrome (PTLDS)? Medscape website. https://www.medscape.com/answers/330178-101013/what-is-the-prognosis-of-post-treatment-lyme-disease-syndrome-ptlds. Updated November 14, 2018.

3. Burrascano JJ Jr; International Lyme and Associated Diseases Society. Advanced topics in Lyme disease: diagnostic hints and treatment guidelines for Lyme and other tick borne illnesses: sixteenth edition. http://www.lymenet.org/BurrGuide200810.pdf. Published October 2008.

4. Nemeth J, Bernasconi E, Heininger U, et al. Update of the Swiss guidelines on post-treatment Lyme disease syndrome. Swiss Med Wkly. 2016;146:w14353.