Clearing the Clouds: Coping with Brain Fog from Lyme Disease

Explore the causes, impact, and management strategies for brain fog in Lyme disease, offering insights and practical tips to help sufferers cope and improve their quality of life.

Recently, when editing an essay someone had written about their onset of Lyme disease in the late 1990s, I came across the term “brain fog”. I wondered if the author had known that term at the time or if it was their older, wiser voice inserting their current knowledge into the scene. I, too, was bitten by a tick at that time period and experienced brain fog and other symptoms, but I didn’t yet have the vocabulary—not to mention an accurate diagnosis—to put words to symptoms like a molasses-feeling in my head (brain fog); burning and tingling in my extremities (peripheral neuropathy); or light-headedness, dizziness, and a racing heart beat (POTS).

Now, I have a deeper understanding of what these symptoms are and why Lyme and other tick-borne diseases can cause them. But I realize these terms can still be confusing for people who are newly diagnosed or those who are suffering but are not yet diagnosed. So, let’s walk through exactly what brain fog is and what causes it, the physical and emotional impact of it, and strategies to cope and manage it. 

What is brain fog?

While “brain fog” was not part of the general lexicon in the late 1990s, it is now thanks to patients with long COVID experiencing it. Indeed, patients with many long-haul illnesses, such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), experience brain fog. In relation to long COVID, The Cleveland Clinic defines brain fog as “a term for a range of symptoms that cause cognitive impairment. This affects your ability to think clearly, focus, concentrate, remember and pay attention. Like its name, these symptoms cloud your mind and make it difficult to perform routine tasks like holding a conversation, listening to instructions or remembering the steps of something you’re doing.” In the article “Is Lyme Disease Associated Brain Fog Real?”, The Johns Hopkins Lyme Disease Research Center describes brain fog as “difficulty with cognitive functions such as concentrating, word recall, processing speed, working memory, mental fatigue, and multitasking.”

Why does Lyme disease cause brain fog?

Lyme disease can cause brain fog when the Lyme bacteria, spirochetes, cross the blood-brain barrier and enter the central nervous system, resulting in neuroinflammation. The Johns Hopkins article states that advanced neuroimaging research shows “objective inflammatory, functional, and structural abnormalities in the brains of Lyme disease patients as compared to healthy controls.” A SPECT scan of my own brain at the height of a relapse showed inflammation and lesions that proved this physiological basis for brain fog as well as other cognitive and neurological impairments contributing to “Lyme brain”.

The physical impact of brain fog

Some Lyme patients, myself included, experience brain fog as a type of Post-Exertional Malaise (PEM)—another term that’s only recently entered the general lexicon—after too much neurological or physical activity. In my blog post “Dealing with Brain Fog: Brain Fog and Lyme Disease” I liken brain fog to a feeling of thick molasses slowly seeping into all the crevices of your brain, until it feels so full that it might explode out of your skull. Different than the pounding or sharp pain of a headache, brain fog feels more like interior swelling.

At my most acute points of tick-borne illness, I felt brain fog all the time. Now that I’m in remission, it comes on when I push myself too hard neurologically (by reading or writing for too long, spending too much time on screen, or getting sensory overload) or physically (by exercising too hard or waiting too long to take an afternoon nap). As I describe in the previous blog post, I feel pressure start to build in my head, beginning at the base of my cranium and then spreading up over my eyes. Brain fog can cause me to invert my words, forget vocabulary, struggle with short-term memory, and have difficulty concentrating. When this happens, I get physically fatigued, even if the brain fog is the result of neurological rather than physical over-exertion.

The emotional impact of brain fog

Hitting that level of cognitive and physical fatigue depresses my whole system, contributing to feelings of anxiety and depression. When I’m wrestling with brain fog, I find myself overthinking, like my needle is stuck in all that “molasses”. It can be easy to get down or for small problems to feel out of proportion.

Brain fog is frustrating, because you don’t always know when it’s going to hit. You may feel fine one moment and then the next, bam, your head feels like it’s full of cotton. It can be embarrassing to suddenly lose your train of thought mid-sentence, or to send an email with mixed up or missing words. At my lowest points, I found brain fog to be more emotionally upsetting than debilitating physical symptoms.

Managing brain fog

The good news is, brain fog can improve. I can go weeks without experiencing it now, and when I do get it, I can take steps to clear it out. Here are some strategies that have helped me (for medical treatments, please remember that there is no set protocol for Lyme disease; talk to your Lyme Literate Medical Doctor to see if these treatments would work well for you).

• Treatment: The single biggest factor in decreasing my brain fog was decreasing the load of spirochetes in my brain. For me, this meant oral and then intravenous antibiotic treatment as well as antimalarial treatment for babesiosis and homeopathic remedies to support that treatment. For others, this means herbs or other natural treatments. I also needed anti-inflammatory medication.
• Supplements: To support treatment, your immune function, and your body’s ability to detox—all of which can help with brain fog—your LLMD may recommend supplements such as essential fatty acids, glutathione, or CoQ10.
• Rest: Besides treatment, nothing helps me more than rest when I experience brain fog. Brain fog is my body’s way of telling me to slow down. For years, I was bedridden with acute tick-borne illnesses. When brain fog rolls in these days, it may just mean that I need extra-long naps, more sleep, or less activity for a few days. Listen to your body!
• Nutrition and hydration: Eliminating or adding certain foods can help with inflammation (see “The Lyme Disease Diet” and “Elimination Dieting for Lyme Disease”). When detoxing, your body will need extra fluids, so it’s important to drink lots of water (and to supplement with electrolyte-infused water, too, so that your sodium and potassium levels stay regulated). Keeping your blood sugar stable rather than spiking and crashing is key, too.
• Mind-body techniques: When experiencing brain fog, our nervous systems are often seeking “rest and digest” mode rather than stimulation. There are many different ways to practice mindfulness, from yoga, to deep breathing, to heightening awareness of the senses. Practices that are calming for some people may be activating for others, so it will probably take some trial and error to figure out what works best for you (for more, see “Mindfulness Practices with Lyme Disease”.)
• Adjunct therapies: For me, integrative manual therapy has helped to relieve pressure at the base of my skull and open up lymphatic drainage. Neurofeedback has helped my brain to train itself to work best despite the complications imposed by tick-borne illness. Talk to your LLMD about these and other adjunct therapies.
• Lifestyle adjustments: Notice when brain fog seems to heighten for you and think about lifestyle adjustments you can make to try to cut brain fog off at the pass. For me, that means putting limits on screen times, avoiding movies or places with flashing lights or loud sounds, and pacing my physical and mental activity.

I know how difficult brain fog can be, but I also know that it can lift. With the right support, there can be sunnier days ahead

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