Have you ever felt that unsettling sensation of being utterly lost, even in familiar surroundings? For individuals battling Lyme disease, this experience of disorientation is more than just a fleeting moment of confusion – it can be a significant and distressing symptom.
Imagine preparing dinner, and suddenly, upon walking into another room, you’re struck by a blankness. “Where am I going? What was I doing?” This scenario, while relatable to everyday forgetfulness, takes on a different dimension when linked to Lyme disease. While occasional memory lapses are a normal part of aging or a consequence of fatigue, persistent confusion and disorientation can signal more serious underlying health issues, including Lyme disease and neurological disorders like dementia.
Experts in Lyme disease, Drs. Brian A. Fallon and Jennifer Sotsky, in their book “Conquering Lyme Disease: Science Bridges the Great Divide,” highlight cognitive impairments as common effects of Lyme. These include short-term memory problems, difficulties finding words, challenges with reading, organizational issues, multitasking struggles, and slowed mental processing. Critically, they also note that Lyme can induce spatial disorientation, making well-known routes feel foreign and difficult to navigate.
Personally, even during the peak of my Lyme illness, I thankfully never lost the fundamental sense of “where am I.” However, the struggle to recall why I entered a room could stretch for what felt like an eternity. Now, thankfully in remission, those moments of lost purpose are shorter, often resolving within minutes. As Drs. Fallon and Sotsky point out, these episodes, though quickly recognized by the individual, can be alarming for both the patient and their family.
For many Lyme sufferers, disorientation escalates beyond minor incidents. It can manifest as getting lost while driving home from a routine commute or becoming completely turned around in their own neighborhood during a walk. This severity can necessitate calls for help from loved ones, leading some to avoid driving altogether or venture out only with company. This disorientation breeds frustration, anger, confusion, and shame, dealing yet another blow to a Lyme patient’s sense of independence.
The encouraging news is that disorientation linked to Lyme disease often improves or resolves with appropriate treatment. Neurological Lyme symptoms arise when the Lyme bacteria, known as spirochetes, breach the blood-brain barrier and invade the central nervous system. This invasion triggers brain inflammation, which can manifest as a wide array of neurological and psychiatric symptoms. Effective treatment of the underlying infection usually leads to a reduction in these symptoms. It’s important to note that symptom exacerbation can occur temporarily at the start of treatment due to Jarisch-Herxheimer reactions, but this is typically a sign that the treatment is working. Therefore, while Lyme-induced disorientation can be profoundly unsettling, with the guidance of a Lyme Literate Medical Doctor (LLMD), recovery and finding your way back to yourself is indeed possible.
References
Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (314-15).
<span>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. </span>
