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Lyme Brain: The Science and the Experience

by Jennifer Crystal

At the 2019 International Lyme and Associated Diseases Society (ILADS) conference in Boston, infectious disease specialist Francine Hanberg, M.D. gave a talk about the causes and manifestations of “Lyme brain” called “Neuropathology in Patients With Late Lyme Disease and Post-Treatment Lyme Disease Symptoms: CNS Vasculitis, Hypoperfusion, Inflammation and Neuropathy.”  Since I had suffered from many of the symptoms associated with Lyme brain—such as short-term memory loss, confusion, brain fog, word repetition, and word loss— her talk caught my attention.

Dr. Hanberg focused on documenting the severity of tick-borne diseases through brain imaging and neurodiagnostic studies. I was struck by her study “Watershed Sign As a Marker for Late Lyme Neuroborreliosis.” “Watershed” areas of the brain, it turns out, simultaneously receive blood from different arteries, the way a creek might receive water from different outlets that eventually drain into a river.

In a previous post, I described Lyme-brain as a feeling of  “molasses seeping through your brain, pouring into all the crevices until your brain feels…[as if] it will explode.” Reviewing Dr. Hanberg’s slides, I could imagine exactly where my “molasses” was pouring—or, rather, I could see where the inflammation in those areas once made my own brain feel so heavy with pressure.

Because Lyme tends to affect watershed areas, cognitive impairments from the disease are usually broad-spectrum, rather than localized as with stroke. As described in the book Lyme Brain by Nicola McFadzean Ducharme, N.D., a study done by neuropsychologist Marian Rissenberg, Ph.D. and Susan Chambers, M.D. explains the major cognitive challenges of Lyme as affecting seven cognitive categories.[i]

I’ve outlined these categories below. For each, I will explain what the impairment definition is, what it felt like for me in my worst days, and what improvements I’ve seen with remission.

  1. Attention and mental tracking

What it means: An inability to focus on one task through to completion or to multi-task

What I experienced then: If I was talking with someone and there was noise in the background, I couldn’t follow what was being said. Moreover, if I was writing even something as simple as an email, I could not endure any background noise, whereas, when I was in college I’d written papers with music playing and people talking all around me. I could complete tasks, but everything took longer than before. I sometimes had difficulty concentrating on a single task; it was hard for me to finish watching a TV show or reading an article without wanting to stop and do something else.

What I experience now: It’s still difficult for me to concentrate with background noise, though light instrumental music is okay. I can follow conversations with far greater acuity, and I can watch and process full-length TV shows and read articles and books. I can scroll through social media and process all the different things I’m reading without hindrance, and stay focused on the task at hand.

  1. Memory

What it means: Difficulty processing and retrieving information; forgetfulness

What I experienced then: I often could not remember the answers to questions as basic as “What’s your zip code?” or “Who’s the President?” It would take me several minutes to come up with the answer.

What I experience now: Sometimes it still takes me a moment to remember what I had for breakfast, but only when I’m overtired. The same is true for repeating conversations (telling a friend the same thing twice); I also have to remember that I’m getting older, too!). On the whole, I can process and retrieve information fast enough to navigate a busy city, give a lecture or facilitate conversation in my classroom. My long-term memory thankfully remains razor-sharp.

  1. Receptive language

What it means: Difficulty understanding written and spoken language; losing track of conversations, not being able to process ideas quickly enough to comprehend or respond in a timely fashion; difficulty reading

What I experienced then: There was a point when I could only process short emails and couldn’t even read a full magazine article. The words would blur in front of my eyes and I would read sentences over and over, trying to understand them. I’d lose track of what I was saying mid-conversation or even mid-sentence.

What I experience now: I can read full magazines and books, but pace myself in order not to get overwhelmed. I read and respond to many student essays. I read and easily process news articles. Once in a while, I’ll lose track of what I was saying, but that’s only when I’m tired or overwhelmed, and then I quickly self-correct.

  1. Expressive language

What it means: Difficulty communicating through written and spoken words

What I experienced then: When my grandfather was struggling with dementia, I’d watch him know what he wanted to say, but be unable to find the words. So he’d get frustrated and give up, and stop participating in conversation altogether. Sometimes, when I was very sick with tick-borne illnesses, that would happen to me. At other times my words would come out in a jumble. My doctor would ask for an overview of how I’d been feeling recently and I couldn’t summarize anything for him (I started keeping a written log of daily symptoms, so that I could put together a report for appointments).

What I experience now: I still keep that written log, but my ability to express myself has improved tremendously. I write weekly columns, have written two books, give lectures, and lead conversations all without issue. Occasionally I can’t come up with a specific word, but can usually get it when prompted.

  1. Visuospatial processing

What it means: Poor spatial relationships; vision difficulties

What I experienced then: My spatial relations have never been great, because I do not have binocular vision (I only see out of one eye at a time, which means I don’t possess depth perception). With Lyme, my capacity to experience spatial relations worsened. Sometimes I’d miss my mouth with the fork, or knock a glass before getting it into the dishwasher, or bump into furniture. Other Lyme patients find themselves getting lost or forgetting where they were going entirely.

What I experience now: My spatial relationships are still not very good, but I attribute these difficulties mostly to my previous vision issues.

  1. Abstract reasoning

What it means: The inability to grasp issues and reach conclusions, or the inability to understand the consequences of one’s actions.

What I experienced then: Sometimes conversations, which previously I would have been able to follow with ease, just seemed too high-level for me. It was as if my brain would “turn off” when people were discussing intellectual issues. This was frightening because I thought I had lost my intelligence and didn’t have anything worthwhile to say. Many Lyme patients thus afflicted might say or do things they would not have otherwise, which can take a toll on relationships.

What I experience now: I can process and synthesize information from multiple sources, recall it and contribute to a conversation. I’m a reflective person—over-analytical— so I overthink potential consequences too much, but that’s not always a bad thing.

  1. Speed of mental and motor processing

What it means: Inability to keep up with a lively conversation

What I experienced then: Returning to the feeling of one’s brain clogged with molasses, I processed everything very slowly. As mentioned earlier, it took too long for me to comprehend information and respond to it.

What I experience now: On most days, my head feels clear and I can process and express thoughts cogently. I’m best in the mornings, so I’ve learned to do creative work then, rather than in the late afternoons or evenings, and I always take an early afternoon nap. When I’m overtired, the brain fog can return, but it lifts much quicker than it used to, and I experience more sunny days.

Of course, this list begs the question, how did I get better? While there is no single protocol for everyone, my neurological symptoms improved through a combination of antibiotic and antimalarial medication, nutritional and homeopathic supplements, adjunct therapies like integrative manual therapy and neurofeedback, and an anti-inflammatory diet. For more ideas on addressing Lyme brain, check out the aforementioned book, or talk with your Lyme Literate Medical Doctor (LLMD).

Note: for patients with difficulty reading, my “Living With Lyme Brain” post is now available as an audio blog.

________________________

[i] Ducharme, Nicola McFadzean. Lyme Brain. California: BioMed Publishing Group, LLC, 2016 (9-12).

Related Posts: 
Feed Your Body to Fight Lyme
Living with Lyme Brain
Dealing With Brain Fog


jennifer crystal_2

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 [email protected].

brain fog

Dealing With Brain Fog

by Jennifer Crystal

What is brain fog, exactly? What does it feel like? What can a patient do to get rid of it?

Writing a weekly blog post is a thrilling and rewarding process. I love connecting with readers like me over various aspects of living with tick-borne illness, and I’m grateful to be able to share my story. I’m also thankful to have the physical ability to write on a tight deadline, which I haven’t always been able to do. In my worst days of fighting Lyme disease and two of its co-infections babesia and Ehrlichia, I couldn’t write at all. This was in part due to the achiness of my joints, but mostly, it was due to brain fog.

So what is brain fog, exactly? What does it feel like? What can a patient do to get rid of it? Now that I have greater neurological clarity, I can offer some information and tips on what I’ve learned about this frustrating symptom.

What is brain fog?

Lyme is an inflammatory disease. When Lyme pathogens in the form of spirochetes cross the blood-brain barrier, inflammation occurs in the central nervous system. “Common neurocognitive problems include poor memory, slower speed of thinking, difficulty with retrieval of words, and impaired fine motor control,” writes Brian A. Fallon, MD and Jennifer Sotsky, MD, in their book Conquering Lyme Disease: Science Bridges the Great Divide. “The slower mental processing speed contributes to the patient’s experience of ‘brain fog,’”[i]

A Johns Hopkins study published in the Journal of Neuroinflammation showed that scans done on 12 patients with Post-Treatment Lyme Disease Syndrome (PTLDS) all showed a chemical marker for brain inflammation, compared with 19 healthy controls. In an article published by Hopkins Medicine, Dr. John Aucott, Director of the Johns Hopkins Lyme Disease Research Center said: “What this study does is provide evidence that the brain fog in patients with [PTLDS] has a physiological basis and [that it] isn’t just psychosomatic or related to depression or anxiety.”[ii]

A patient with brain fog can experience delayed response times, making it difficult for them to write clearly or comprehend text or conversation. As Drs. Fallon and Sotsky explain, “Patients may have difficulty reading and find that when they move on to the next paragraph, they have forgotten what they [just]read before….Patients may have spatial disorientation such that familiar routes become suddenly difficult to navigate or appear unfamiliar… [Or] patients may have new on-set dyslexic changes, reversing numbers or letters when writing or words and phrases when speaking. They may confuse left and right and may find themselves making verbal errors that are uncharacteristic of them.…Other examples of cognitive errors might include placing the cereal box in the refrigerator or asking one’s spouse to please put the milk back in the radiator.”i

What does brain fog feel like?

During a relapse of my tick-borne illnesses, I had a brain scan done that showed this precise type of inflammation, which made for a lack of oxygen to the left side of my brain. What did those symptoms actually feel like inside my head? In my post, Living With Lyme Brain, I likened brain fog to thick molasses that slowly pours into all the crevices of your brain, until it feels so full that it might explode out of your skull. When I was at my sickest, I felt this fog all the time and wished I could open a spigot to relieve the pressure.

As I got better, my brain fog dissipated, but it still returns from time to time. It can come on slowly, like mist settling over a valley, and can then build into an impenetrable cloud. I get it when I’m neurologically over stimulated: after watching a fast-paced TV show, while hearing loud music, or after reading for too long. “Too long” is defined differently for every patient; at my lowest points, one sentence was hard to comprehend. Eventually, I could read a short article in a light entertainment magazine. Now I can read a whole book, but I still need to pace it out, chapter by chapter.

If I read for too long, I feel pressure start to build, beginning at the base of my cranium and then spreading up over my eyes. Once my head gets full, I struggle to find the right vocabulary, and sometimes I invert my word order. When the brain fog builds to this intense point, it causes me to be very tired. A graduate school professor once joked, “Sometimes, without warning, Jen runs out of steam.” He was right. Suddenly, my eyes would glaze over and I’d zone out.

Sometimes brain fog comes on not from neurological overstimulation but from physical fatigue. When I exercise for too long, or push myself too hard before an afternoon nap, I feel brain fog come on even if I haven’t been doing anything intellectual.

Once I hit this level of fatigue, it becomes hard for me to think clearly. This doesn’t just mean losing the ability to read a book or grade a student’s essay. I get recurring thoughts and feel sensitive and sad. I ask myself, am I actually feeling upset about a situation, or am I just experiencing brain fog?

What I do about brain fog

Once I’ve determined I’m experiencing brain fog, here’s what has helped the most to alleviate it:

  • Antibiotics: To alleviate the symptom of brain fog, you have to eliminate the cause: spirochetes. Lyme is a bacterial infection that needs to be treated with antibiotic therapy. My brain fog did not get better until I’d been on enough antibiotic therapy to really get at the spirochetes in my brain. Due to Herxheimer reactions, the brain fog actually got worse before it got better, but long-term antibiotic therapy eventually cleared up my infection enough to check the inflammation in my brain. The appropriate antibiotic protocol, and length of treatment, is different for every patient. What worked for me might not work for you, so it would not help you to learn about my specific protocol. Please discuss your symptoms and treatment with a Lyme Literate Medical Doctor (LLMD).
  • Anti-inflammatory medication: My LLMD put me on an anti-inflammatory medication that worked in conjunction with my antibiotic to get across the blood-brain barrier. This was a prescription medication, different than over-the-counter anti-inflammatory pills.
  • Herbal/nutritional supplements: Certain supplements such as essential fatty acids can help reduce inflammation in the brain. Talk with your LLMD about which supplements would be best for you.
  • Anti-inflammatory diet: For me, it helped to eliminate sugar and gluten from my diet. For others, it also helps to eliminate dairy. Some foods like certain green vegetables, nuts, lemon, ginger, and blueberries are known to have anti-inflammatory properties.
  • Water: The more you can flush your system, the faster you will eliminate live and dead Lyme bacteria (just be sure to keep your electrolytes balanced; I do so with electrolyte-infused water).
  • Time limits: To stop my brain fog before it starts, I impose time limits on my screen and reading time. Even if I’m feeling okay after an hour of watching TV, I make myself take a break, so that the fog doesn’t suddenly come rolling in.
  • Rest: These days, the very best thing I can do when my brain fog flares is rest, rest, rest. This means sleep, but it also means just having some quiet down time lying on the couch or going for a short walk. Many people think of reading or watching TV as resting, but for a patient with neurological Lyme disease, that is not the case. We need quiet, calm activities like coloring, baths, or soft instrumental music. The idea is to shut your brain off—to get away from screens, noises, and other stimuli.

Brain fog can be overwhelming. When you’re experiencing it, you might feel like the pressure in your head will never go away. With time, rest, and proper treatment, though, the fog eventually lifts so you can enjoy clearer skies.

 

[i] Fallon, Brian A. and Sotsky, Jennifer. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (52, 314).

[ii] https://www.hopkinsmedicine.org/news/publications/hopkins_medicine_magazine/medical_rounds/spring-summer-2019/visualizing-brain-fog-in-post-treatment-lyme-disease

Related Posts:

Living with Lyme Brain
Not All Headaches Are Alike: What’s Causing Yours?
The Aches and Pains of Tick-Borne Illnesses
What to Do When You Hit a Plateau in Treatment


jennifer crystal_2

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 [email protected].