Madison Area Lyme Support Group

What causes memory loss specifically? And what does it feel like to experience it?

My long-term memory has always been sharp as a tack. I can repeat verbatim a conversation that happened two decades ago; I can tell you what a friend was wearing on the first day of third grade; I know what I ate at the restaurant my family went to on the last night of a vacation we took when I was in high school. People say, “It’s incredible that you can remember so much,” to which I often respond, “Just don’t ask me what I had for breakfast.”

The joke gets a good laugh, but it’s actually a serious matter: despite my unusually strong long-term memory, my short-term memory has been affected by the tick-borne illnesses Lyme disease, babesiosis, and ehrlichiosis. Some evenings I truly couldn’t tell you what I had for breakfast, and other times I need to look at my calendar to remember what I did that day. Once jogged, the memory comes back to me like a slow Google search, but the hang time between someone asking me about my day and my response can be embarrassingly long.

What causes memory loss specifically? And what does it feel like to experience it?

Though our central nervous systems are generally protected by the blood brain barrier, Lyme bacteria (spirochetes) are sneaky and smart, and can spiral their way across the border. Once that security breach occurs, a patient may experience “Lyme brain”, which can manifest as brain fog, word or song iteration, depression and anxiety, tremors, mini-seizures, headaches, burning extremities and memory loss.

As described in the book Conquering Lyme Disease: Science Bridges the Great Divide by Brian A. Fallon, MD and Jennifer Sotsky, MD, “Lyme disease can directly affect brain and sensorium in multiple ways: via direct infection, immune system effects, changes in neurotransmitter balance, and altered neural pathways.” Inflammation in the brain, as well as impaired oxygen flow to the brain as is often seen with babesiosis, can impact cognitive function. Drs. Fallon and Sotsky write that short-term memory problems are one of the most common cognitive effects of neurological Lyme disease. The book includes images of low blood flow in the brain of patients with memory impairment after Lyme disease (referred to as post-treatment Lyme encephalopathy).

In her book Lyme Brain, Nicola McFadzean Ducharme, ND, references studies in which Borrelia burgdorferi spirochetes were found in the brains of Alzheimer’s patients. While many Alzheimer’s patients don’t have Lyme, and many Lyme patients won’t develop Alzheimer’s, the studies show both how easily Lyme bacteria can cross the blood brain barrier, and how easily their presence can be misdiagnosed as dementia or Alzheimer’s when a chief symptom is memory loss.

The extent to which a patient’s memory is affected depends largely on their response to treatment.

When I started antibiotic therapy, some of my neurological systems worsened at first, as I experienced Herxheimer reactions, and the antibiotics chased those clever spirochetes deeper into my brain. After a couple months, my brain fog decreased, I had better concentration, and my memory improved. Sticking to an anti-inflammatory diet and taking supplements to help rid my brain of neurotoxins also helped. I learned to pace myself and to stay away from overstimulating activities (like big movie theaters or fireworks shows) that rile up my neurological symptoms, including memory loss.

Luckily, my long-term memory was never affected, which is a blessing as a writer. But while my short-term memory problems have improved, they are not fully gone. I especially notice them now when I am over tired or over worked. During those periods, I might leave someone a voicemail in the morning and then leave a similar message later in the day, forgetting about the first. I find myself asking friends, “Did I already tell you this story?” I’m hyper-aware of the deficit, but friends and family assure me that my lapses are relatively infrequent. Rest, quiet time away from screens, and relaxation usually have me back in “working order” in just a couple days.

If you are in an acute stage of neurological tick-borne illness, it’s possible that you’ve read this post and forgotten what it said; that you lost track of where you were whiling reading; or that you’ll tell someone about what you read more than once. Know that you’re not alone, and that with proper treatment through a Lyme Literate Medical Doctor (LLMD) and good self-care, a time will come when everything will seem much clearer.

[1] Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press (2018), 314.

[1] McFadzean Ducharme, Nicola, ND. Lyme Brain. California: BioMed Publishing Group, LLC (2016), 15-16.

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Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.