CDC fails to acknowledge neuropsych symptoms of Lyme and other TBDs
Lyme disease and co-infections can bring on a variety of neuropsychiatric symptoms, such as pain, seizures, and cognitive impairment. Yet, patients often find that their doctors don’t understand the connection.
In a recent study, Sarah Maxwell, PhD, and co-authors compared official public health information, case reports, medical literature, and the self-reported symptoms of patients with Lyme and other tick-borne diseases. In the following article, she explains what the researchers found.
By Sarah Maxwell, PhD
Currently, the Centers for Disease Control and Prevention (CDC) does not recognize most neuropsychiatric symptoms of Lyme and other tick-borne diseases. This leaves medical providers with scant information regarding the full extent of possible symptom presentation, to the detriment of patients.
Patients would be better served by improved public health recognition and communication regarding the full spectrum of possible tick-borne disease related symptoms, some of which can be quite frightening, such as hallucinations.
In our recent lead article in Healthcare, we found that neuropsychiatric symptoms are prevalent in the medical literature and among patients’ self-reports, but are not recognized by public health officials, specifically the CDC’s: Tickborne Diseases of the United States: A Reference Manual for Health Care Providers.
In the article, we note that, “The complexity of diagnosis originates from patients presenting with non-specific and multisystem symptoms, with potential misattribution of symptoms by practitioners, regarding psychiatric and associated neurological problems.”
Our mixed-methods approach included a systematic review of the literature on psychiatric and neurological symptoms of tick-borne diseases. We then compared the medical literature to the CDC’s publication: Tickborne Diseases of the United States: A Reference Manual for Health Care Providers.
CDC only recognizes a few neuropsych symptoms
We found that out of all the neuropsychiatric symptoms reported in the medical literature for common tick-borne diseases, only a few were fully recognized by public health officials.
The table below summarizes the symptoms presented in our study. Column one lists symptoms. Column two lists the tick-borne diseases associated with those symptoms in the medical literature. The third column lists the tick-borne diseases that are associated with the symptom, if any, as recognized by the CDC. The final column shows symptoms that are reported in the literature but not recognized by the CDC.
For example, in the medical literature, the symptom, “difficulty with, or slurred speech (dysarthria),” is associated with five tick-borne diseases: Lyme disease, anaplasmosis, ehrlichiosis, Powassan virus disease (PVD), and Rocky Mountain Spotted Fever (RMSF).
However, the CDC does not recognize dysarthria as a symptom of any tick-borne disease, as noted in the fourth column.
Panic attacks and hallucinations are additional examples reported among Lyme disease patients, but also not recognized in public health guidance to physicians.
Make the comparison
Table 1. Symptom comparison from medical literature and the public health reference manual for common tick-borne diseases.
(RMSF—Rocky Mountain spotted fever; BMD—Borrelia miyamotoi diseases; PVD—Powassan virus disease; TBRF—Tick-borne relapsing fever.)
|Reported in Scientific and Medical Literature||Reported by the CDC||Reported in the Scientific Literature, but Not Recognized by the CDC|
|Lyme disease, BMD, babesiosis, ehrlichiosis, tularemia, anaplasmosis, RMSF, and PVD||Lyme disease, ehrlichiosis, babesiosis, anaplasmosis, RMSF BMD, PVD, and tularemia||None, headache is the most common presenting neurological symptom among all TBDs|
Confusion/Altered Mental Status
|Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, and PVD||Confusion: BMD|
Altered mental status: ehrlichiosis, babesiosis, RMSF, and PVD
|Pain||Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, tularemia, RMSF, and PVD||Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, tularemia, RMSF, and PVD||PVD|
|Seizures||Lyme disease, RMSF||PVD||Lyme disease, RMSF|
|Vertigo/Dizziness||Lyme disease, RMSF||None||Lyme disease, RMSF|
|Tingling/Numbness||Lyme disease||None||Lyme disease|
|Cognitive Function (concentration, memory difficulty, and word recall)||Lyme disease||None||Lyme disease|
|Paralysis: difficulty swallowing (dysphagia) or Bell’s palsy||Bell’s palsy: ehrlichiosis|
dysphagia: Lyme disease
|Bell’s palsy: Lyme disease, ehrlichiosis, babesiosis|
|Dysphagia: Lyme disease|
|Difficulty with, or slurred speech (Dysarthria)||Lyme disease, anaplasmosis, ehrlichiosis, PVD, and RMSF||None||Lyme disease, anaplasmosis, ehrlichiosis, PVD, RMSF|
|Low Blood Pressure (hypotension)||babesiosis, ehrlichiosis, and anaplasmosis (also present in TBRF)||babesiosis||ehrlichiosis, anaplasmosis, and TBRF|
|Fainting (syncope)||Lyme disease, babesiosis||None||Lyme disease, babesiosis|
|Depression||Lyme disease, babesiosis||babesiosis, but uncommon||Lyme disease|
|Anxiety||Lyme disease (also present in TBRF)||None||Lyme disease|
|Fatigue and malaise||Lyme disease, ehrlichiosis, anaplasmosis, and babesiosis||Lyme disease, ehrlichiosis, anaplasmosis, babesiosis, and tularemia (and other TBDs)||None, fatigue and malaise are commonly agreed upon as classic symptoms of TBDs|
|Mania, panic attacks, delusions, or hallucinations||Lyme disease||None||Lyme disease|
We also compared patient self-reported neuropsychiatric symptoms to those recognized by the CDC and the medical literature.
We discovered that patient self-reported symptoms aligned well with the medical case reports, but generally were not recognized by the CDC.
Through an online survey using a convenience sample of patients with self-reported tick bites and concomitant Lyme and other tick-borne diseases, we evaluated patient reports of neuropsychiatric symptoms.
Anxiety, depression, panic attacks
Anxiety, depression, panic attacks, hallucinations, delusions, and pain—ranging from headaches to neck stiffness and arthritis—were common among patients who report a tick-borne disease diagnosis.
Overall, pain and psychiatric symptoms were dominant presentations among survey respondents across all TBD diagnoses, with the majority reporting anxiety, depression, and panic attacks.
Additional reported symptoms also included those not acknowledged by public health officials, including delusions, hallucinations, and Obsessive Compulsive Disorder (OCD).
In contrast, Bell’s palsy, often noted as a classic sign of Lyme disease by public health officials, was reported less frequently by the respondents than psychiatric presentations.
Public health guidance does not align with the medical literature or with patient self-reported symptoms in our study.
We conclude that, “Given the multitude of non-specific patient symptoms this study indicates the need for a revised approach to tick-borne disease diagnosis. Our findings suggest the need for improved awareness of the wide range of associated symptoms and communication from official public health sources regarding tick-borne diseases.”
Sarah Maxwell, PhD, is an assistant provost and associate professor at the University of Texas at Dallas. Her research and grants focus on tick-borne disease surveillance and patient experiences with Lyme disease. She also serves on the scientific board of the Texas Lyme Alliance.