In late 1975, a group of Yale scientists traveled to Lyme, Connecticut to investigate what they thought was an outbreak of rheumatoid arthritis (Elbaum-Garfinkle, 2011). The most common symptom among the 51 patients was recurrent attacks of knee swelling. Others remembered a round rash before the onset of other symptoms (Fidsa, 2019). We now know these patients were suffering from Lyme disease, named for the town in which it was discovered. Today, Lyme disease is the most common vector-borne illness in the United States (CDC, 2021); in 2019, a total of 34,945 “confirmed and probable cases” of Lyme disease were reported to the CDC (CDC, 2021). In large part due to advocacy efforts by people with Lyme disease, chronic pain due to the condition is gaining awareness from the medical community.
Lyme disease is caused by the bacterium Borrelia burgdorferi, which is transmitted to humans through the bite of infected blacklegged ticks (CDC, 2021). Typical symptoms include muscle and joint aches, fever, chills, headache, and fatigue. Erythema migrans rash is also characteristic of infection – it often resembles a “bull’s-eye,” and occurs in approximately 70-80% of infected persons (CDC, 2021). Clinical diagnosis of Lyme disease is based on symptoms, physical findings like the rash, and the possibility of exposure to infected ticks; blood testing is also performed to detect antibodies (Fidsa, 2019). Around 30,000 cases of Lyme disease are reported to the CDC per year, but the actual number of cases annually is closer to 300,000 according to official estimates (CDC, 2021; Kuehn, 2013). Paul Mead, chief of epidemiology and surveillance for the CDC’s Lyme disease program, noted in a statement that “routine surveillance only gives us part of the picture” (Kuehn, 2013). Most cases can be treated with a few weeks of antibiotics. Still, chronic pain can persist after treatment.
Joint involvement tends to be the most common and persistent manifestation of Lyme disease, leading to swelling and pain known as Lyme arthritis. According to Harvard researchers, “about 60% of people who are infected with Lyme develop arthritis unless they receive antibiotics.” But in most, Lyme arthritis resolves “after 30 days of treatment with an oral antibiotic like doxycycline” or with additional intravenous antibiotic treatment (Fidsa, 2019). Chronic pain due to Lyme disease can also occur as the result of another syndrome – in rare instances, B. burgdorferi may trigger fibromyalgia, a health condition characterized by widespread pain (Steere, 1995). Finally, chronic pain can present as a symptom of post-treatment Lyme disease syndrome (PTLDS), known colloquially as chronic Lyme disease. “[PTLDS] is a real disorder that causes severe symptoms in the absence of clinically detectable infection,” says Dr. John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center (Hopkins Newsroom, 2018). More stringent definitions of PTLDS maintain that symptom onset begin “within six months after completion of antibiotic therapy for physician-documented Lyme disease and [last] for at least six months.” According to the New England Journal of Medicine, approximately 10-20% of people who are treated with the recommended antibiotics will go on to experience PTLDS (Melia, 2016).
The exact cause of PTLDS is not known, leading to debate surrounding appropriate treatment (Murrell, 2018). Some practitioners suggest continued antibiotic therapy, but evidence shows that it does not improve chances of recovery and might even cause complications (NIAID, 2021). A range of medications can be used to reduce pain and discomfort, such as prescription or OTC pain relievers, NSAIDs and intra-articular steroids for joint swelling; some research even suggests TNF inhibitors (Murrell, 2018; Fidsa, 2019). Other sufferers find relief through yoga, homeopathy, and Reiki (Vance, 2021). Fortunately, an increasing number of doctors are “receptive to the existence of PTLDS,” which means that treatment and management approaches will continue to improve.
References
CDC. (2021, April 29). Lyme disease data and surveillance | CDC. Centers for Disease Control and Prevention. https://www.cdc.gov/lyme/datasurveillance/index.html
CDC. (2021, January 15). Signs and symptoms of Lyme disease | CDC. Centers for Disease Control and Prevention. https://www.cdc.gov/lyme/signs_symptoms/index.html
Elbaum-Garfinkle S. (2011). Close to home: a history of Yale and Lyme disease. The Yale journal of biology and medicine, 84(2), 103–108.
Fidsa, J. R., MD. (2019, October 3). Chronic Lyme arthritis: A mystery solved? Harvard Health. https://www.health.harvard.edu/blog/chronic-lyme-arthritis-a-mystery-solved-2019100317959
Johns Hopkins Medicine Newsroom. (2018, February 1). Study Shows Evidence of Severe and Lingering Symptoms in Some after Treatment for Lyme Disease. Johns Hopkins Medicine Newsroom. https://www.hopkinsmedicine.org/news/newsroom/news-releases/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-treatment-for-lyme-disease
Kuehn BM. (2013). CDC Estimates 300,000 US Cases of Lyme Disease Annually. JAMA. 310(11), 1110. doi:10.1001/jama.2013.278331
NIAID. Lyme Disease Antibiotic Treatment Research | NIH: National Institute of Allergy and Infectious Diseases. (n.d.). Retrieved from https://www.niaid.nih.gov/diseases-conditions/lyme-disease-antibiotic-treatment-research
Melia, M. T., & Auwaerter, P. G. (2016, March 30). Time for a Different Approach to Lyme Disease and Long-Term Symptoms [Editorial]. New England Journal of Medicine. doi:10.1056/NEJMe1502350
Murrell, D. (2018, September 17). Chronic (Persistent) Lyme Disease: Symptoms and Diagnosis. Healthline. https://www.healthline.com/health/lyme-disease-chronic-persistent
Steere, A. C. (1995). Musculoskeletal manifestations of Lyme disease. The American Journal of Medicine, 98(4A), 44S-48S; discussion 48S-51S. doi:10.1016/s0002-9343(99)80043-6
Vance, E. (2021, November 9). The Pain Brain. The New York Times. https://www.nytimes.com/interactive/2021/well/chronic-pain.html