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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].

Living with Lyme Brain

by Jennifer Crystal

Short-term memory loss, confusion, brain fog, and word repetition are just a few symptoms of Lyme brain experienced by many Lyme patients. How has Lyme brain affected you?

Listen to the audio version of this blog here:

I was recently talking on the phone with a friend who is expecting a baby. “I’m so sorry I didn’t call you back earlier,” she said. “I can’t remember anything these days. It must be ‘pregnancy brain’!”

I knew what she meant. I’ve experienced “Lyme brain,” and the symptoms are similar. Throughout my 20-year battle with Lyme and other tick-borne illnesses—eight of which were undiagnosed and untreated—I have wrestled with shortterm memory loss, confusion, brain fog, word repetition, difficulty retrieving vocabulary, and a tendency to mix up words. Other neurological symptoms have included insomnia, hallucinogenic nightmares, migraines, burning extremities and mini seizures.

It’s hard to explain the neurological component of Lyme disease to people who haven’t experienced it. Most people know Lyme causes joint pain, and it does. But when it goes undiagnosed for too long, the bacteria can replicate and cross the blood-brain barrier, invading the central nervous system. A scan of my brain showed that the tickborne parasite babesia was preventing me from getting oxygen to the left side of my brain. The scan also showed lesions caused by Lyme.

But that scan was done years after my initial tick bite, years after I’d first noticed that my hands trembled when I tried to apply eyeliner, years after doctors had written off my migraines as “altitude sickness” or “stress.”

blog_JC_lyme brain_1

Unfortunately, my story is all too common. The neurological symptoms of Lyme disease are some of the most confused with other illnesses. Besides the brush-off diagnoses I received, patients are often misdiagnosed with multiple sclerosis, Parkinson’s, and/or mental illness. Without proper diagnosis, neurological Lyme disease can lead to paralysis, schizophrenia and even death.

I was one of the lucky ones. My sleep disturbances were unbearable at times, but my day time neurological troubles never got worse than brain fog and word loss. So what did that actually feel like? Imagine molasses seeping through your brain, pouring into all the crevices until your brain feels so full that you wonder if it will explode right out of your skull. Imagine that thick substance sticking to the synapses of your brain, dulling your thoughts, slowing your ability to put those thoughts into words.

It became impossible to read or watch TV. Just skimming the opening paragraph of an article left me confused and frustrated. Sometimes I’d be telling a story to my family—something as simple as, “I ran into an old friend at the pharmacy today”—and I’d stop mid-sentence and ask, “What was I talking about?” I had no memory of what I’d just said or what point I was trying to make. I also sometimes mixed up the syntax such as, “I ran into a friend old at the pharmacy today.”

Other times, I couldn’t come up with basic words. While telling my family that story I might say, “I ran into an old friend at the…at the…at the blank today.” I knew that “today” came after the word I was trying to say, but I couldn’t fill in the blank. Usually whomever I was speaking with could fill it in for me, but I was nervous about that happening in public. I’d be at the pharmacy and suddenly not be able to come up with my zip code when prompted by the pharmacist. Sometimes the word or number would come eventually, as if my brain had done a Google search. Other times I would just try to laugh it off, saying something like, “Wow, I must be really tired today!” I wished I had the more obvious excuse of “pregnancy brain.”

As a writer, I have always been exacting in my vocabulary. Losing the ability to come up with precisely the right word was humiliating. Words are my currency, and I was broke.

Luckily, the antibiotics started beating out the spirochetes in my brain, and slowly things improved. Soon I could read an entire magazine, as long as I stopped in between articles to sit quietly and let my brain rest. Eventually, I could type multi-paragraph emails. The word repetition fortunately decreased. I worked my way up to attending graduate school, writing papers and essays —thinking again at a high level.

blog_JC_lyme brain_2

These days, I still wrestle with some neurological symptoms especially when I’m tired. Recently I was writing a chapter of my next book and called my mom to say, “I’m thinking of a word that sounds like ‘synonymously’ and means two things happening at the same time.”

“Simultaneously,” she quickly said. I smiled, filled in the blank, and continued writing.

While working on my book, I’ve been doing some prompts with a writing group to help generate material. Recently we wrote about things we’ve lost and found. “I’m writing about losing my mind,” I told my mother.

“How do you know you’ve found it?” she joked.

I know because I can write about my experiences with some distance, using exactly the words I want. I know because I can teach. I know because I can read student essays and newspaper articles. I know because I can read entire books—albeit slowly—and I’ve even written one, too. And in the rare event that  I can’t think of a word, I know I can always call my mother.

Related Posts:

Dealing With Brain Fog
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-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]

What to Do When You Get Bad News About Your Health

by Kerry J. Heckman
#MyLymeLife

Getting bad news is hard for anyone. For people with a chronic illness, like Lyme disease, it can happen often. Here are 8 tips to help you manage the bad news.

 

I went through three biopsies of my spine trying to find a reason why my MRI was so drastically abnormal. All three biopsies were inconclusive. This process is not for the faint of heart. It consists of fasting for an entire day, getting an IV, laying on your stomach in a CT machine, while the doctor sticks a large needle in a precise location within my back. During my first two biopsies, they took a sample of my bone, which I could feel them chip away. The sedative and twilight anesthesia helped, but caused me to throw up about an hour after I finished the procedure.

Each time I prayed for an answer to my long-awaited question, and each time the lack of a diagnosis stung a little more.

For people with chronic illnesses the medical tests are non-stop. My one good vein has so much scar tissue it’s hard to get blood from it anymore. Sometimes those test results are positive and hopeful, but many times they aren’t. The bottom line is when you get news about your health that isn’t what you wanted to hear, it’s very hard to cope with; and for people with chronic illness, it happens over and over again.

Here is some advice on how to respond:

1. Cry

You better believe I’ve cried a lot after a phone call from a doctor or an email from a lab. It’s okay to be disappointed, sad, and scared when you get bad news. Let the river of tears flow. Life is not always kind.

2. Talk to someone

When the news is bad, it can be helpful to talk to someone. This person can be your partner, parent, best friend, or a professional. Pretending you aren’t hurting and putting on a brave face won’t serve you in the long run.

3. Don’t let the test results define you

Test results are numbers on a page or the label of a diagnosis, but often these things are changeable, not fixed. I know one day my inflammatory markers will go down and the Lyme disease will be in remission. When I get bad news, I know it’s a measure of my current state and it’s only temporary.

4. Get a second opinion

If I hadn’t gotten a second opinion, or a third, or a fourth, I never would have gotten a correct diagnosis of Lyme disease. It’s also important to remember there is a time to gather new information and a time to contemplate what you know; try to find a balance.

5. Write down an action plan

When another spot of inflammation showed up on my CT scan, I was devastated and overwhelmed by the number of follow up tests and conversations with doctors that needed to take place. I was worried if I didn’t get it all done instantly something would get missed. I paused a moment and took the time to make a list of everything that needed to get done. Then, I put each item in order of importance. It helped to take all the anxious noise in my brain and lay it out in a strategic plan.

6. One step at a time

After you have developed your action plan, take one step at a time. You might not get all the calls made in one day. There may be tests that you have to be schedule far in advance or may take weeks for the results to come back. As long as you are marching toward the goal, don’t push yourself too hard.

7. Ask for help

Let’s face it, brain fog doesn’t necessarily lend itself to creating and following through on a detailed health plan. Ask your doctor, partner, or friend to talk it through with you. Maybe they have insights that you didn’t consider.

8. Look for a reason

I don’t necessarily believe everything happens for a reason. But my personal philosophy is even if there isn’t a reason, it still happened, so you have to make one.

When I had my inconclusive biopsy, a good friend said: maybe now isn’t the right time to find an answer. She was right. If I’d received a negative biopsy I might have given up the fight for answers, but since I had no answer I sought out a new doctor who ultimately led me to my Lyme diagnosis.

Each test, whether good, bad, or inconclusive is another clue along the path to recovery.

My mom recently had an abnormal mammogram and had to go through a biopsy of her own. With our stomachs tied in knots, my entire family waited for the results. We breathed a collective sigh of relief when the biopsy came back negative. When you get bad news about your health it’s important to remember that sometimes there is good news. I’ve had my share of positive test results. They’re just overshadowed by the negatives ones. Illness is a journey of ups and downs, for every dark of night there is the light of day. Waiting for the sun to come up is hard, but it’s there hidden just behind the horizon, ready to rise.


Opinions expressed by contributors are their own.

kerry-j-heckman-profile-picture_thumbnailKerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.