Chronic Infections And Brain Health
Imagine developing a sudden onset of debilitating fatigue, impaired memory and concentration, sleep disturbances, achy joints, and psychiatric conditions such as anxiety, depression, mood disorders, or even psychosis.
The worst part? You’ve seen six different medical doctors and have spent tens of thousands of dollars out of pocket, only to get a different (inaccurate) diagnosis each time.
Then the panic sets in. You start to wonder if this is your new normal. The anxiety spirals as you grapple with the uncertainty, questioning whether these symptoms, which mimic countless other conditions, will ever be correctly identified and treated.
Many patients who suffer from some, or all, of these conditions can be cured with antibiotics.
That’s because for many, the cause of their physical and psychiatric symptoms is a bacterium wreaking havoc on their body and mind.
We sat down with Dr. Teri Sanor, an associate professor of internal medicine at Northeast Ohio Medical University (NEOMED) with 28 years of combined experience in the medical field, to discuss “the #1 misdiagnosed disease”. Her insights and personal experiences reveal the shortcomings of the medical establishment that result in unnecessary suffering and how to address them.
Here is her story.
Dr. Sanor’s Personal Experiences Broaden Her Medical Education
Dr. Sanor’s understanding that chronic infections can change the way you think, feel, and act came not from her medical school curriculum but from personal experiences. “I was an RN and MD in leadership positions for decades, yet I only knew about acute infections like HSV and syphilis, and brain conditions, yet those are common, and antibiotics are usually effective,” she shares.
Her awakening began in 2020 when her 14-year-old relative, Brooke, suddenly became sick with debilitating fatigue. “She was an excellent student and athlete, and became so ill some days that she could not get out of bed; she had severe joint pain, had trouble concentrating, and could not write her name. She had to be on a disability plan at school,” Dr. Sanor recounts. Brooke even faced skepticism from her peers when a friend from school claimed, “My dad is a doctor, and he says you are faking it.”
After her family spent $20,000 seeking medical help, they ultimately found answers after contacting medical doctors from the International Lyme and Associated Diseases Society. They revealed that Brooke wasn’t “faking it”; she had Lyme disease.
Save The Date
Brain Day, October 9th, 2025
Join us for an enlightening meeting featuring Dr. Or Shemesh, Dr. Deborah Zelinsky, and other experts in person, alongside Nikki Schultek on Zoom, sharing groundbreaking insights on brain health, Lyme disease, and Alzheimer’s. With inspiring patient stories, including those of Nicole Malachowski and Meghan Bradshaw, this event offers hope and knowledge for everyone, especially patients. Tables are available for $50 at the Northeast Ohio Medical University Ballroom, and individual in-person or virtual admission is $20 per attendee. Proceeds will support the Brain Health Initiative for mental illness research and the Alzheimer’s Pathobiome Initiative for dementia root cause research. Follow Teri Sanor, MD on LinkedIn for more registration information. Note: The Brain Inflammation Collaborative is not affiliated with this event, and no proceeds are given to us.
What Is Lyme Disease?
In December 1975, a study was conducted to identify the cause of an abrupt outbreak of ‘arthritis of unknown cause’ in 39 children and 12 adults living in Lyme, Connecticut, and surrounding areas. However, it wasn’t until 1982 that Dr. Burgdorfer and colleagues isolated the pathogen causing the mysterious cases of arthritis, a previously unknown bacterium sharing the name of its discoverer, Borrelia burgdorferi. This spiral-shaped bacterium is transmitted from ticks to humans and is most prevalent in temperate regions like the U.S., Europe, and parts of Asia, where ticks thrive in wooded or grassy areas.
Once inside the body Borrelia burgdorferi can penetrate virtually any organ, including the brain, joints, muscles, and heart, causing a range of chronic symptoms such as debilitating fatigue, impaired memory and concentration, sleep disturbances, achy joints, and psychiatric conditions such as anxiety, depression, mood disorders, or even psychosis.
Lyme Disease Is Commonly Misdiagnosed
A bull’s eye rash can form once Borrelia burgdorferi is deposited below the surface of the skin by a tick bite. However, it doesn’t always make Lyme disease diagnosis easy because the rash:
– may not appear after a tick bite
– can be faint or irregularly shaped
– may fade before medical evaluation
– can be mistaken for other skin conditions
– may not resemble the classic bull’s-eye pattern
Therefore, many physicians might not suspect Lyme disease if they do not see the classic bull’s eye rash. Physicians who suspect Lyme disease will order a test to detect Borrelia burgdorferi-binding antibodies in the blood. However, it takes a week to generate a robust antibody response, making the detection of antibodies nearly impossible if the test is performed soon after infection.
Detecting antibodies that target the bacteria occurs using a two-step test that is “<50% sensitive early when the infection is most treatable.” However, “physicians are not taught that the test is inaccurate, so we think a negative result is negative.” Even a positive test does not mean you will be diagnosed with Lyme disease. “Many physicians dismiss [a positive result as]… ‘probably from a prior infection’.
For these reasons, the misdiagnosis of Lyme disease is incredibly common. For instance, in 2023, over 89,000 cases of Lyme disease were reported to the CDC from state health departments. However, the CDC estimates that the true number of Lyme disease cases in the U.S. each year is closer to 476,000 people.
Borrelia Infections Can Cause Pediatric Acute Onset Neuropsychiatric Syndrome (PANS)
A Borrelia burgdorferi infection not only causes physical symptoms such as fatigue, fever, and swollen lymph nodes, but can also cause the sudden onset of neurological and psychiatric (neuropsychiatric) symptoms in a subset of patients, such as:
- Rapid mood swings, irritability, and aggression
- Reduced academic performance
- Obsessive-compulsive disorder
- Sensory sensitivities
- Behavior regression
- Anxiety
- Tics
These symptoms can occur not only following a Borrelia burgdorferi infection but also from PANS-causing pathogens such as the flu, Group A Streptococcus (GAS), Bartonella spp, and Mycoplasma pneumoniae.
The Diagnostic Dilemma of PANS
Neuropsychiatric symptoms most commonly manifest in children and adolescents and are difficult for pediatricians to diagnose. This is in part due to their lack of familiarity with PANS and the lack of universally accepted diagnostic tests.
Even if a pediatrician suspects PANS, they will try and rule out every other possible explanation for the symptoms before they rule in the possibility of PANS. However, the vast majority of pediatricians will provide a default diagnosis such as functional neurological disorder or, even worse, anxiety or stress, suggesting the symptoms are in their head, an admission that they do not understand what is causing the child’s symptoms.
Lyme Disease Strikes Again in Dr Sanor’s Family
Soon after Brooke became ill, Dr. Sanor’s brother-in-law, Jim, faced a similar health crisis that almost took his life. “He had recurring fevers, sweats, [shortness of breath], severe fatigue,” she says. “After being repeatedly tested for COVID-19 with negative results, he was diagnosed with rheumatoid arthritis and underwent joint surgery.” However, he still felt terrible; on some days could barely get off the sofa, limiting his ability to work. Dr. Sanor recalls Jim saying, “I felt like I was going to die.”
However, Jim didn’t have rheumatoid arthritis. Similar to Brooke, Jim later learned that he was suffering from Lyme disease. However, there was more bad news. Not only did Jim test positive for Borrelia burgdorferi, he also had two other co-infections: a bacterium called Bartonella (cat scratch fever) and a parasite called Babesia, which hides inside red blood cells. Like Borrelia, Bartonella, and Babesia can be transmitted to humans from a tick bite.
He was put on three different antibiotics, taking 6 months total for his symptoms to subside. Dr. Sanor notes that many clinicians stop the antibiotics anyway because of the perceived risks. A Cleveland Clinic infectious disease physician saw Jim and, despite seeing proof in his improved health, he called the research “garbage,” despite hundreds of studies from top researchers.
A Gap in Medical Education
Despite the profound impact of these infections, most medical professionals are not trained to recognize their role in neurological and psychiatric disorders. “Northeast Ohio Medical University does not teach that Lyme [or] Strep Group A are causes of chronic brain disorders,” Dr. Sanor explains. “Neither do most medical schools.”
Therefore, Dr. Sanor couldn’t rely on her medical school training to help Brooke and Jim. Instead, she had to quench her thirst for Lyme Disease knowledge by attending an International Lyme and Associated Diseases Society meeting. It was here that she learned about another bacterium, Bartonella, causing similar symptoms to those of the Lyme disease-causing bacteria. To her surprise, she discovered that both ‘bugs’ can contribute to devastating psychiatric conditions. “Bartonella [was found] in 11 of 17 schizophrenia patients years ago [and] in 43% of psychotic patients.” You would think that a discovery like this would grab the attention of the U.S. National Institute of Health (NIH), but “still no follow-up at the NIH”, explained Dr. Sanor.
This gap in medical education and action from health agencies is partly driving the high misdiagnosis rates. “Almost every patient has seen multiple docs, 7 is average,” before receiving a correct diagnosis, and in extreme cases, like a senator at the Kay Hagan Tick Act signing, 23 physicians missed the mark.
The consequences of a misdiagnosis are dire. Misdiagnosed patients endure prolonged suffering and medical gaslighting, with healthcare providers dismissing their symptoms as “all in their head.”
This is known to exacerbate the mental health struggles of patients, causing them to feel hopeless.
“Almost every patient has seen multiple doctors,” Dr. Sanor notes, highlighting the emotional and financial toll, with Lyme costing an estimated $75 billion annually in the U.S., according to Senator Susan Collins.
A Systemic Failure in Healthcare
The root of this crisis lies in a healthcare system that poorly equips medical professionals to diagnose and address chronic infections. Dr. Sanor explains that, “medical and nursing schools teach a ‘firehose’ of information, much of it at least a decade behind the research.” Medical schools fail to teach the infection-brain connection, and research funding, such as the NIH’s $48 billion annual budget, “lacks coordination”. “NIH/NINDS only funds individual researchers, not by disease,” Dr. Sanor explains.
For instance, Lyme disease grant money is typically given to infectious disease researchers who lack neurology and psychiatry expertise. This leaves promising findings, like Bartonella’s link to schizophrenia or Lyme’s role in psychosis, unexplored while patients suffer.
A Call for Change
The solution is to fund collaborative research grants and programs that integrate expertise from immunologists, neurologists, infectious disease specialists, and psychiatrists to advance our clinical understanding of these infectious diseases in the body and brain. Dr. Sanor proposes reforms to address these failures:
- Prioritize Funding for High-Impact Diseases: Require publicly funded institutions to allocate at least half their budgets to education and research on the most disabling, costly, and misdiagnosed diseases, including Lyme and Bartonella.
- Mandate Testing: Screen for Lyme and Bartonella in prenatal screenings and require testing for root causes like infections, toxins, and nutrient deficiencies in patients with schizophrenia, psychosis, or other brain disorders.
- Coordinate Research: Establish disease-focused teams to ensure follow-up on promising findings, prioritizing clinical trials for root causes over narrow, downstream research.
- Leverage Existing Treatments: Promote the use of proven, affordable treatments like antibiotics.
- Fund Patient-Focused Trials: Fund patient-focused research that allows physicians to better understand patient populations.
A Path Forward
Dr. Sanor’s message is clear: the healthcare system must evolve to recognize the profound connections between infections, chronic inflammation, and brain disorders. By prioritizing education, screening, improving testing, and collaborative research, we can reduce misdiagnosis, reduce medical gaslighting, and restore hope to millions.
The time for change is now.
Written By
Matthew Menendez, Ph.D.
Director of Science Communication, Brain Inflammation Collaborative
Dr. Menendez has a passion for empowering patients navigating complex chronic diseases. Through innovative educational strategies, he bridges the gap between cutting-edge research and real-world understanding, helping individuals advocate for better care and access to timely treatments.
