In this podcast, Sarah talks with Dr. Brian Fallon about the cognitive and mental health manifestations of Lyme disease, and about some of his past and future research collaborations. Dr. Fallon is a physician, researcher, author, and Director of the Lyme and Tick-borne Diseases (TBD) Research Center and the Lyme and TBD Clinical Trials Coordinating Center at the Columbia University Irving Medical Center in New York City. His work is focussed on the neuropsychiatric and persistent symptoms related to Lyme disease. Current research collaborations are looking at the effect of interventions such as vagus nerve stimulation, IV ketamine, tetracycline, and transcranial direct current stimulation (tDCS) and cognitive retraining. The research network is also currently investigating outcomes related to Lyme disease acquired during pregnancy.
Meeting challenges with curiosity
Dr. Fallon’s interest in Lyme disease began in the early 1990’s when a family member contracted Lyme disease and was faced with challenges in diagnosis and treatment of the disease, including treatment of relapsing symptoms. He points out that many physicians are rigid in their treatment of the disease, especially when symptoms persist or recur. Through his work, Dr. Fallon also came to realize that there were mental health manifestations of Lyme disease. These experiences, along with his curiosity and background in research, led him to explore various ways to help people with Lyme disease.
“At that time, in the early 90’s, the experts on Lyme disease were saying that the treatment was curative, so if you had symptoms that persisted or returned, they didn’t know what to do with it. They were sympathetic, but they said it had nothing to do with Lyme disease and they were really not interested in providing repeated treatments.”Dr. Brian Fallon
The early years in Lyme Connecticut
Dr. Fallon first became interested in the psychiatric elements of Lyme disease after he was contacted by Polly Murray. Polly was a mother in Lyme, Connecticut who reported that many people in her community, including herself and her family, were experiencing unusual symptoms from as early as the 1960’s. These symptoms turned out to be caused by what eventually became known as Lyme disease. After Dr. Fallon and his wife, also a psychiatrist, met with Polly Murray and discovered that many patients experienced anxiety and depression. They explored further by means of a survey of Lyme patients. The survey results also illustrated quite clearly the suffering that many patients were experiencing.
“ I learned a lot about the difficulties that Lyme patients have in getting diagnosed, difficulties they have in getting treatments, the rigidity with which some physicians approach people who have uncertain illness, especially when it’s an evolving understanding in the medical community.”Dr. Brian Fallon
The role of inflammation
Sarah points out that Lyme patients experience many manifestations of Lyme disease such as carditis, meningitis, arthritis and encephalitis. Dr. Fallon explains that the outer surface proteins of the Borrelia burgdorferi spirochete lead to inflammation throughout the body, including the brain and nervous system.
Cognitive and psychosocial manifestations
Dr. Fallon explores some of the cognitive manifestations of Lyme disease which include difficulty finding the correct word to say, struggles with short term memory, geographic disorientation and brain fog. He describes brain fog as slowed processing speed which can often result in a feeling of dissociation. Over time, symptoms such as pain or profound fatigue can lead to loss of functional abilities, including the ability to work. In turn, this can cause psychosocial distress for patients and their families.
“The Borrelia burgdorferi spirochete has outer surface proteins, some of which are highly inflammation inducing…as a result you get inflammatory problems on the skin, in the joints, in the meninges, meningitis, so there’s lots of ‘itis’ in Lyme disease.”Dr. Brian Fallon
Brain inflammation and mental health
In addition to the stress caused by the disease, Dr. Fallon points out that patients can also experience symptoms related to inflammation in the brain, or encephalitis. With even a mild encephalitis, patients can experience paranoia or become manic, or even appear to have a serious psychotic disorder. Beyond the more common symptoms of Lyme disease such as muscle and joint pain and fatigue, Dr. Fallon notes that migrating joint pain, shooting and stabbing pains, and tingling are more often seen in patients with Lyme rather than a purely psychiatric illness.
Causes of persistent Lyme symptoms
Although only about 10% of patients with early Lyme may experience psychiatric symptoms, around 40-45% of the patients with persistent or recurring symptoms that come into Dr. Fallon’s clinic present with psychiatric symptoms. He explains that there may be several causes of persistent symptoms such as persistent infection, autoimmune processes where the body mistakenly targets human tissue after an immune response, and inflammatory processes including those induced by cytokine activation.
“If the illness continues, then they have problems with pain and they have to stay home and they’re so sick they can’t work, and they’re profoundly fatigued…it’s quite discouraging for them and it’s discouraging for their family…it’s discouraging for their employer, so it creates a lot of interpersonal and psychosocial stressors.”Dr. Brian Fallon
Research using SPECT scan imaging has shown that Lyme patients, who have demonstrated areas of decreased metabolism and blood flow in their brain. In addition, the study revealed objective findings of microglial activation, indicating inflammation in their nervous systems.
Recent research on Lyme and mental health
When Dr. Fallon was at a conference for PANS and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders), he met up with one of the world’s top mental health epidemiologists, Dr. Michael Benrose. Together they conducted research that looked at data of about 8 million people over 22 years in Denmark. They looked at the rate of depression, suicidal thoughts and behaviours, and suicide, in those diagnosed with Lyme compared with the rest of the population of Denmark. The rate of depression was higher, the rate of suicide was 75% higher, and the rate of suicidal ideation was an astonishing 200% higher in Lyme patients than the rest of the population. Although the study results are alarming, Dr. Fallon knows from his many years of experience that people can and do get better with appropriate diagnosis and treatment.
“There are a variety of mechanisms that have been identified as likely contributing to persistent symptoms. So one of those is persistent infection, and if there is persistent infection, obviously that needs to be treated…a second cause could be autoimmune…sometimes the antibodies that form against the spirochete mistakenly target human tissue…inflammation itself…if cytokines are circulating, some of them can cross the blood brain barrier, especially if it’s inflamed, and that in itself can lead to a whole range of neuropsychiatric problems”Dr. Brian Fallon
Helpful tools for healthcare providers
Dr. Fallon urges physicians to screen patients for depression, suicidal ideation or plans. He points to two instruments that physicians can use: the PHQ-9 questionaire and the Columbia Suicide Severity Risk Scale, which consists of 6 questions to help determine whether a person requires immediate mental health intervention. People can also call 911 for urgent mental health support. Patients are also encouraged to talk with their physician or make use of online resources that focus on mental health support.
Approaches to patient care
Dr. Fallon discusses approaches to psychiatric manifestations of Lyme patients. For patients who require psychiatric attention, he directs listeners to seek out a good psychiatrist who can address issues using psychiatric treatments. Patients who also experience symptoms such as light sensitivity, unexpected cognitive problems could also be referred to a neuropsychologist. Dr. Fallon emphasizes the importance for patients to be validated in relation to their symptoms, and for doctors to admit when they don’t fully understand the health issue.
“We were studying all of these patients who had Lyme encephalopathy…if we take patients with persistent Lyme symptoms and objective cognitive problems…the Lyme patients tended to have areas of decreased metabolism, where the brain wasn’t functioning well…they also had comparable areas of decreased blood flow [compared to healthy patients]…these were really objective findings in these patients with persistent cognitive problems, and that’s really important because anybody who’s had Lyme disease or another tick-borne illness knows that oftentimes, they get disbelieved. Oftentimes they’re told that it’s something else…or that it’s assumed that maybe they’re making it up or exaggerating. But once you actually show that, actually, there’s brain imaging findings that are objective, that certainly gives confirmation to their complaints.”Dr. Brian Fallon
Long term effects after infection
The COVID pandemic has had some impact on perspectives on Lyme disease in relation to long term implications of infection. Dr. Fallon points out that long Covid has been associated with chronic fatigue (ME/CFS), and that different approaches are now being explored to reduce these types of symptoms. In addition, patients may experience symptoms caused by limbic system dysfunction.
Psychiatric symptoms reversed with Lyme treatment
Although the psychiatric symptoms of Lyme disease can have a huge impact on people’s lives, Dr. Fallon reiterates that there is hope. He describes a young patient who had been experiencing acute psychiatric symptoms, was tested and treated for Lyme disease, and went on to recover and attend graduate school.
Acknowledging psychiatric manifestations
The epidemiologic case definition for Lyme disease, developed in the 1990’s, is based mostly on objective manifestations of Lyme disease such as an expanding rash, swollen knee or changes in certain laboratory tests. Although the CDC was clear that the case definition was not meant to diagnose Lyme disease, Dr. Fallon points out that many physicians are still using it to diagnose Lyme. In addition, psychiatric manifestations of Lyme disease may be less well known because they are not included in the case definition.
“The Johns Hopkins group showed that there was microglial activation in the brain of the patients they studied…microglial activation refers to inflammation, so they were able to find markers of inflammation in the central nervous system of the patients they studied.”Dr. Brian Fallon
Collaboration in Lyme disease research
Dr. Fallon informs our listeners about the Clinical Trials Network Coordinating Center which is supported by a grant from the Steven and Alexandra Cohen Foundation. With research support from Columbia University Irving Medical Center, research centers across the US are conducting several Lyme disease trials. Trials include a tetracycline treatment, vagus nerve stimulation for persistent fatigue, IV ketamine for depression in Lyme disease, transcranial direct current stimulation and cognitive retraining for Lyme brain fog, and early neurodevelopmental outcomes of exposure to Lyme in pregnancy.
Hope for the future
In closing, Dr. Fallon maintains that hope is essential, and that collaboration within the academic world along with recent advances toward better treatments are all reasons to have hope. He invites you to visit their website to learn more. Thank you Dr. Fallon for sharing your expertise with us and for continuing to support Lyme patients through your work and through research.
“The [CDC] epidemiologic surveillance criteria were focussing on things that they could measure or see…they clearly stated from the very beginning that clinicians should not be using this as the sole criteria for diagnosis, but nevertheless, clinicians started to use that as the sole criteria for diagnosis, and that was harmful to patients because people started being told ‘oh no you don’t have Lyme disease because you don’t meet the epidemiologic case definition,’ and that’s not at all what the case definition was meant for.”Dr. Brian Fallon
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