Symptoms of Lyme disease can vary from person to person and typically affect multiple organ systems. Neuropsychiatric symptoms such as anxiety, depression, and brain fog are quite common in Lyme disease. In 2020, Lyme-literate psychiatrist Robert Bransfield, MD, and his team published their findings of Lyme disease’s most common symptoms. The paper, A Clinical Diagnostic System for Late-Stage Neuropsychiatric Lyme Borreliosis Based upon an Analysis of 100 Patients1, compared the frequency of symptoms of Lyme disease against four control groups. The results were remarkable.
Including Clinical Symptoms for the Diagnosis of Lyme Disease
Laboratory testing for Lyme disease is known to have low sensitivity. Lyme specialty laboratories have improved testing methodologies to increase test sensitivity, but they still produce false-negative results. Furthermore, lab tests only provide objective information. Including subjective clinical symptoms improves diagnostic accuracy. For example, is there another significant lab result that explains the patient’s symptom picture?
“An individualized approach is particularly significant when dealing with complex and poorly understood multisystem diseases. In opposition to this conservative and traditional approach [mainstream medicine], some have attempted to oversimplify the diagnosis of Lyme disease by reducing the diagnosis to reliance upon the U.S. CDC surveillance definition. However, the surveillance definition has never been intended to be a sole diagnostic criterion, particularly in late-stage disease.”
The Study Criteria
The researchers performed a retrospective chart review of 100 patients who tested Positive for Lyme disease by CDC criteria. Thirty of these patients were diagnosed and treated within six months of getting the infection, but continued to have symptoms. The other 70 patients had a delayed diagnosis and treatment, with an average of 9 years since infection. The study used four control groups to validate results – the 100 patients’ symptoms before infection, a group of healthy controls, a group with chronic illness but not positive for Lyme disease, and The National Comorbidity Replication Survey.
On average, people had 4.6 clinical findings before infection with Lyme disease and 82 clinical findings after infection!
The Results
Attention Span
Difficulty concentrating and decreased attention span are common complaints in Lyme disease. What is unique about attention in Lyme disease is the brain is “flooded” with input, whereas in attention deficit disorder (ADD), the attention is “distracted.” Sensory overload also occurs in Lyme disease, manifesting as hypersensitivity to light and sound.
Memory and Retrieval
Patients with Lyme disease experienced the most significant declines in working memory and recent memory, whereas long-term memory was less affected post-infection. Following infection with Lyme disease, patients also struggled more with retrieving information, such as names and words.
Processing Impairment
Processing issues are like dyslexia, in which letters are reversed, spelling errors occur, and word substitutions arise.
Executive Function
Executive function is the ability to create goal-directed behavior, plan, and organize.
Imagery Impairments
Emotional Impairments
Dissociative Symptoms
Depersonalization is the feeling of observing yourself outside of your body or having thoughts or feelings that do not feel like your own.
Behavioral Symptoms
Only 1% of people suffered from substance abuse before becoming infected with Lyme disease, but 12% of people began abusing substances after infection. This may be related to not having a correct diagnosis for a while, so choosing to self-medicate or using substances to reduce symptom severity. Suicidality may be due to the immune activation in Lyme disease or the negative attitude about Lyme by a family member, peers, or healthcare providers. It is estimated that there are about 1,200 suicides per year related to Lyme disease.
Psychiatric Syndromes
Panic disorder related to Lyme disease lasts for a longer duration (more than 30 minutes) than panic not associated with Lyme disease.
Fatigue and Sleep
Fatigue increased significantly in patients after becoming infected with Lyme disease. There was a direct correlation between non-restorative sleep and fatigue.
Insomnia
The study did not collect data on delayed sleep disorder, characterized by staying up late then waking later the following day. Delayed sleep disorder may be due to stimulation overload during the day, causing a person to stay up late when it is quiet, not to feel overstimulated.
Eating Habits
Decreased appetite can occur early in Lyme disease, but eating habits can shift as the disease progresses. Food cravings can increase with time, leading to weight gain.
Sexual function
Decreased libido in Lyme disease is not uncommon, possibly due to other symptoms such as fatigue, pain, and headaches. Hormonal changes from Lyme disease may also contribute to the following sexual functioning symptoms.
Temperature Control
Fevers or night sweats are often associated with infections, but people can also experience the sensation of being cold or low body temperature. Body temperature fluctuations were a commonly reported symptom of Lyme disease.
Headaches
Headaches are a common symptom of Lyme disease, with over 2/3 of patients reporting them. There are different types of headaches, with tension headaches being the most common. Tension headaches manifest as a sensation of pressure inside the head. Cervical radiculopathy is caused by nerve entrapment that can radiate to locations like the back of the eye.
Cranial Nerve Involvement
Humans have 12 cranial nerves, and each can be affected by Lyme disease. Symptoms associated with cranial nerve involvement are determined by which nerve is affected.
Neurological Symptoms
The nervous system is commonly affected by Lyme disease. Some neurological symptoms in Lyme disease frequently occur, such as tingling and burning. In comparison, others are rare, such as a sensation of vibration (which was not included).
Musculoskeletal Symptoms
Cardiovascular Findings
Upper Respiratory, Dental, and Pulmonary Symptoms
Gastrointestinal Symptoms
Genitourinary Symptoms
Other Symptoms
Symptom Patterns
Symptoms of Lyme Disease Confirmed by Other Studies
The authors of this research study reviewed previously published studies on individual symptoms of Lyme disease. They learned that previous studies had found a similar frequency of symptoms among people infected with Lyme disease. In addition to the control groups used in this research paper, this was another way to validate the accuracy of their findings.
Screening and Assessment Forms to Help in the Diagnosis of Lyme Disease
This study’s results enabled the authors to develop assessment forms that clinicians can use to aid in the diagnosis of Lyme disease. Most laboratory tests for Lyme disease have low sensitivity. This is particularly true for reference labs such as Quest and LabCorp, as well as hospital-based laboratories. Specialty labs, such as Igenex, have developed improved testing methodologies that have increased test sensitivity.
Using a screening questionnaire and assessment forms in a clinical evaluation for Lyme disease would increase a diagnosis’s accuracy. A screening questionnaire and assessment forms developed from the data collected in this study are presented in the research paper. The individual symptoms evaluated in this study are not unique to Lyme disease, but the totality of the symptoms can help determine whether they are caused by Lyme disease.
A Multisystem Multisymptom Disease
This study’s analysis of symptoms people had before and after infection with Lyme disease is remarkable. On average, people had five symptoms before contracting Lyme disease and had an astounding 82 symptoms after contracting Lyme disease. The range of symptoms people experienced following an infection demonstrates the widespread effects of Lyme disease. The greater the number of multisystem symptoms, the more strongly correlated with a diagnosis of Lyme disease. This study provides a comprehensive insight into the array of Lyme disease symptoms, which can improve the accuracy of a clinical diagnosis and help monitor treatment progress.
