Lyme Disease and the Autoimmune Connection

Each year, more than 30,000 new cases of Lyme disease are reported to the Centers for Disease Control and Prevention (CDC), although the true prevalence is likely to be closer to 476,000 – and it’s on the rise. While not classified as an autoimmune disease, research indicates that Lyme disease may trigger an autoimmune response and/or its symptoms may mimic an autoimmune disease.

Lyme disease is caused by the bacteria Borrelia burgdorferi and Borrelia mayonii, transmitted through the bite of an infected blacklegged tick. Left untreated, Lyme disease can cause chronic joint inflammation (Lyme arthritis), typically in the knee but also occurring in the shoulders, ankles, elbows, and wrists; neurological symptoms, such as facial palsy and neuropathy; cognitive defects, such as impaired memory; heart palpitations and irregular heartbeat; and nerve pain. Lyme disease usually responds well to antibiotics, and prompt treatment can help avoid these escalating effects on the body.

Meghan O’Rourke chronicles her experience with Lyme disease in the New York Times bestseller and 2022 National Book Award (nonfiction) longlist contender The Invisible Kingdom: Reimagining Chronic Illness. “I began experiencing brain fog, fatigue, night sweats, hives, joint pain, and startling neurologic symptoms when I was 21 – including “electric shocks” that raced over my body. I was sick on and off for years without any doctor acknowledging I was sick,” Meghan explains. “My night sweats were so bad that I had to change clothes in the night. The fatigue and joint pain were debilitating. But it took until I was in my mid-thirties to get a diagnosis and treatment.”

As Meghan described, the first signs of Lyme disease are often flu-like symptoms, such as fever, chills, headache, fatigue, muscle, joint pain, and swollen lymph nodes. In 70-80% of infected people, a rash in the pattern of a target or bull’s-eye will appear. This rash, known as erythema migrans, can spread over a large part of the body over several days. While this rash is one of the hallmarks of Lyme disease, not everyone who has been infected will develop it.

Post-Treatment Lyme Disease Syndrome and Autoimmune Diseases

Even after receiving treatment, some patients may experience post-treatment Lyme disease syndrome (PTLDS), or chronic Lyme disease, with continued flu-like symptoms and cognitive impairment. Development of PTLDS is believed to be immune-mediated. Additionally, some patients may develop autoimmune joint diseases, such as rheumatoid arthritis, psoriatic arthritis, and spondyloarthritis, and other autoimmune diseases, including lupus, polymyalgia rheumatica, thyroid disease, and autoimmune neuropathy. It is not clear whether Lyme disease triggers these autoimmune conditions or if Lyme disease mimics the autoimmune condition, or vice-versa. There is much research being conducted to help the scientific and medical community better understand whether there is a relationship between Lyme disease and autoimmune diseases.

Meghan stresses the importance of gaining a greater understanding of Lyme disease, saying, “We need much more research into diagnostics and treatment for those with what is called either chronic Lyme or post-treatment Lyme disease syndrome (PTLDS). I encourage the scientific and medical community to dig in and learn more, especially about the immunological reality of PTLDS, and follow some of the theories that persistent bacteria may play a role in some cases. It’s urgent for us to get more answers.”

Preventing Lyme Disease

To minimize your risk of getting Lyme disease from a tick bite, take the following precautions:

• When you’re in an area where deer tend to live (such as a grassy or wooded area), be sure to cover up completely, exposing as little skin as possible. For further protection, use insect repellant. Wear long sleeves and long pants, and tuck pants into socks and shirts into pants
• Wear light-colored clothes so ticks will be more visible
• When in a grassy or wooded area, try to stay on trails and away from tall grass
• Keep your yard debris-free. Avoid letting your grass grow long, remove leaves and grass clippings, and keep any wood or logs dry and stacked neatly
• After being outdoors in a risky area, inspect your body and clothing for ticks, place your clothes in a dryer on high heat for 30 minutes, and take a shower
• If you find a tick, remove it very carefully. The CDC recommends using clean, fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible and pulling upward with steady, even pressure. Dispose of the tick by placing it in alcohol, wrapping it tightly in tape, placing it in a sealed bag, or flushing it down the toilet. Clean the bite area thoroughly and visit your doctor if you develop any symptoms of Lyme disease.

Connect with the Autoimmune Disease and Chronic Illness Community

Hear more from Meghan O’Rourke and her experience with Lyme disease and chronic illness at the Autoimmune Community Summit, October 21-22. Meghan’s book draws on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, and offers hope, solace, insight and a new understanding of our bodies and health. To all people living with Lyme disease, autoimmune disease, and other chronic illness, Meghan says, “Hang on and don’t lose hope. You’re not alone. It’s so hard, so be kind to yourself, and know that there is an invisible kingdom out there, as I write in my book.”

Join us virtually for two days of great content and hear from Meghan at the closing session. Learn more and register at go.autoimmune.org/AiCommunitySummit2022.