Do you know what it's like to have Lyme disease and suffer from disorientation? It can result in confusion or forgetfulness.
The other night while making dinner, I thought of something I needed to add to my to-do list. I walked a few feet into my home office, got to the center of the room, and stopped in my tracks. “What am I doing here?” I said aloud, looking around in confusion.
It’s a feeling many of you have probably experienced: walking into a room to get something and forgetting what you came for; or being in the middle of one task, starting another, and forgetting the first (luckily, I did not leave dinner burning on the stove). Sometimes we can chalk these moments up to the forgetfulness that comes with aging. Sometimes we’re just tired at the end of a busy day. In some cases, these incidents may be early indications of serious conditions like dementia.
And for many, forgetfulness and confusion, particularly as they relate to disorientation, are due to Lyme disease. In their book Conquering Lyme Disease: Science Bridges the Great Divide, Brian A. Fallon, MD and Jennifer Sotsky, MD note that the most typical cognitive effects of Lyme disease are “short-term memory problems (especially working memory), word-finding problems, dyslexic changes, executive problems (difficulties with planning and organization, difficulties with multitasking), and mental slowing.” For some patients, these effects can lead to “spatial disorientation such that familiar routes become suddenly difficult to navigate or appear unfamiliar.”
Luckily for me, even at my lowest points of illness, I never got so disoriented that I didn’t actually know where I was. In those days it might take hours to remember why I walked into a room—I might wake up in the middle of the night and jot down that all-important item on my to-do list—but now, years into remission, I usually remember my task within a few minutes. Drs. Fallon and Sotsky write, “Such errors are readily recognized soon after the fact, but may be sources of alarm or perplexity to the patient and to his or her family.”[i]
For some Lyme patients, alarm bells indeed ring, because the disorientation becomes severe. They may suddenly get lost driving home from work, or go for a walk and not recognize their own neighborhood. They may have to call a family member or neighbor for help. Some stop driving altogether, or won’t go places without company. Disorientation can leave Lyme patients feeling frustrated, angry, confused, and ashamed. It can be yet another blow to their independence.
The good news is that with adequate treatment, disorientation usually gets better or goes away. Neurological symptoms of Lyme disease occur when the Lyme disease bacteria (spirochetes) cross the blood-brain barrier and enter the central nervous system. The infection causes inflammation in the brain, which can manifest in a host of neurological and psychiatric symptoms. Once the infection gets treated, symptoms often subside (though due to Jarisch-Herxheimer reactions, they may get worse before they get better). In other words, though you may literally get lost, with the help of a good Lyme Literate Medical Doctor (LLMD) you can eventually find your way.
 Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (314-15).
[i] Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (314-15).
The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.