MORE THAN BULL’S-EYE RASH AND JOINT PAIN: LYME DISEASE AND NEUROPSYCHIATRIC SYMPTOMS

Written on by Susan Benzie

May is both Lyme Disease Awareness Month and Mental Health Awareness Month. What is the connection? The Center for Disease Control (CDC) estimates that 476,000 people are diagnosed with Lyme Disease each year in the US. In 2022, the states with the highest number of Lyme disease cases were New York, Pennsylvania, and New Jersey. The Pennsylvania Department of Health recently alerted individuals, providers, and caregivers that reported Lyme disease cases have increased this spring and advised healthcare providers to “have a heightened clinical suspicion for tickborne diseases in persons with clinically compatible symptoms.” 1

But what are the “clinically compatible symptoms?” Most of us know about the “bull’s eye rash” and joint pain. Maybe we’re aware that flu-like symptoms (fever and fatigue) can also be a sign of Lyme following a tick bite. What many, even physicians and psychiatrists, are unaware of is that Lyme and other tick-borne diseases (TBD) can manifest in a myriad of ways, including neurological, sensory, and psychiatric symptoms. Since 2017, the federal Health and Human Services has commissioned a Workgroup to study the current state of Tickborne Diseases in the US. Their final report to Congress in 2022 noted Although neuropsychiatric presentations of Lyme disease have been reported for more than three decades in the medical literature, rarely are the neuropsychiatric manifestations and mental health needs of Lyme disease described in medical textbooks or on government websites (Fallon & Nields, 1994; Kohler, 1990; Pachner, 1988). Lack of acknowledgement of this aspect of Lyme disease has led to delayed diagnosis and treatment, and in some cases severe long-term morbidity or, rarely, death due to suicide. These disparities are due, in part, to the reliance by clinicians on objective clinical signs described in the case definition for Lyme.” 2 

Brian Fallon, MD, psychiatrist with the New York State Institute and Director of the Columbia University Lyme and Tickborne Research Center notes that doctors often rely on “signs” (i.e, things that can be confirmed by an outside observer) rather than also considering “symptoms” (i.e., things that are experienced by the person themselves). Without considering both “signs” AND “symptoms”, doctors risk missing a diagnosis of Lyme or other tick-borne illness. The Center emphasizes that diagnosis must take into account both typical and atypical presentations of TBD. 3

Dr. Fallon also shared in a 2021 research study that “it is time to move beyond thinking of Lyme disease as a simple illness that only causes a rash. In addition to the risk of severe cardiac, rheumatologic, and neurologic problems, Lyme disease can cause severe mental health problems as well.” 4 TBD signs and symptoms can manifest on the skin, in the joints, as cardiac, neurological, neuropsychiatric, or neurocognitive symptoms. For individuals and families impacted by mental health issues, it’s important to note that neuropsychiatric symptoms can be a prominent feature of Lyme (or other tickborne infections). Symptoms can include trouble with mood, lack of energy, sensory processing, and/or sleep problems.  Cognitive deficits may include poor memory, slower speed of thinking, difficulty retrieving words, and impaired fine motor control. Although rare, neuropsychiatric Lyme can even manifest as paranoia, hallucinations, mania, and/or obsessive-compulsive symptoms. These difficulties may appear shortly after the initial infection or even many months later. 5

To learn more about Lyme and other tickborne diseases, check out the following links:

Video overview with Brian Fallon, director of Columbia University Lyme and Tickborn Research Center

Interview with Dr. Shannon Delaney, Neuropsychiatrist at Columbia Medical Center and co-director of the Lyme and Tickborne Research Center

https://www.columbiapsychiatry.org/news/lyme-disease-heightens-risk-mental-disorders-suicidality


1 https://www.health.pa.gov/topics/Documents/HAN/2024-746-04-30-ADV-Tickborne.pdf

2 https://www.hhs.gov/sites/default/files/tbdwg-2022-report-to-congress.pdf

3, 5 https://www.columbia-lyme.org/signs-and-symptoms

4 https://www.columbiapsychiatry.org/news/lyme-disease-heightens-risk-mental-disorders-suicidality

Photo by Erik Karits on Unsplash


Guest Author: Susan Benzie, Director of Data, Research and Design. Susan led the Voice and Vision, Inc. Consumer and Family Satisfaction Team (CFST) in Bucks County since 2003, where research led her to the Appreciative Inquiry philosophy of Quality Management, which she quickly adopted. Currently, as Director of Data, Research and Design, she provides support and mentoring to the Coordinators of Bucks, Chester, and Delaware County C/MFSTs. Sue is the mother of five children and grandmother of eleven. She has a special interest in the intersection of physical and mental health – how physical health issues can cause or masquerade as mental health problems and how mental health issues can cause physical health problems.

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