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lyme warrior

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column, “Dear Lyme Warrior … Help!”, to answering your questions. Here are her answers to questions she has recently received. Do you have a question for Jennifer? You can email her at [email protected].


You mentioned that your memory improved. Did it all come flooding back one morning, or was it gradual?

When Lyme crosses the blood-brain barrier into the central nervous system, it can affect your memory. Memory loss can manifest differently for every patient, and so is its restitution. It can come back differently. It all depends how deeply the infection is embedded in your brain, what parts of your central nervous are impacted, and how you respond to treatment.

I never lost my long-term memory. In fact, it got stronger. Perhaps because I am a writer who is attuned to details, my long-term memory has always been good; I can remember what a classmate was wearing on the first day of third grade and what they said to me during recess. As my Lyme got worse, with antibiotics chasing the Lyme bacteria deeper into my brain, my hallucinogenic dreams got wilder, filled with minute details from random points in my past. This has been both a blessing and a curse. I remember exact scenes and conversations from a decade ago that I include in my memoir. But I also remember painful times that I’d rather forget.

My short term memory was affected by Lyme. I sometimes joke, “I can tell you what you said to me two years ago, but don’t ask me what I had for breakfast.” At the lowest point of my illness, my mom would call and ask how my day was— and I couldn’t remember. I would need to look at my calendar to recall what doctor I had seen that day. Now my short-term memory is better, but when I’m having a flare-up of symptoms or am feeling especially tired, I still struggle. I might ask a friend, “Did I already say that?” or repeat at the end of a conversation something I said in the beginning of it. At times I still have a hard time coming up with words mid-sentence. For the most part, though, my memory is relatively okay, and it came back gradually, as the antibiotics slowly killed off the bacteria in my brain.

You mentioned that you traveled to Florida and Mexico, but wrote that going to Europe and other places would have been too far. How did you make that distinction?

When I was first sick with Lyme and two of its co-infections babesia and ehrlichia, I was bedridden. Travel as far as the mailbox was impossible. As I slowly got better, I was able to make short trips to town and then around my small home state of Connecticut, usually with someone else driving. Eventually, I regained enough strength and cognitive function to safely drive myself, first for short distances, and then longer ones up to about an hour. Past that, I would get too tired, reaching that feeling of “hitting a wall” that marathon runners talk about.

Over time, my ability to travel has expanded, but it still depends on how far I can push myself before I hit that wall. I’ve learned to know my limits and when they can and can not be stretched.

Currently, I have good energy in the morning, but it runs out completely by mid-afternoon, and can be restored only with a nap. That means travel is best for me in the morning or evening, but not during nap time. Florida and Mexico are, respectively, three and four hour direct flights from my city. I have traveled to each in the morning, arrived at my destination by nap time, and went to sleep. Both were also due south, with the Mexican location being just one hour west. Pushing the time difference any further than that probably would mess with my circadian rhythms too much for me to enjoy the trip. Going to Europe would require an overnight flight and several time changes. That’s not entirely out of the question—it could possibly be done if someone were traveling with me, and if I had a lot of time to recover built into my schedule upon arrival— and a lot of time to recover upon returning— but that’s time, expense and energy I currently can’t afford.

Having someone with you who understands your health needs can also make a big difference in your ability to travel. I can take longer car rides if someone else is at the wheel. Moreover, it saves me a lot of energy when someone else carries my bags or loads up the car. I didn’t realize until I went to Mexico with a partner what a difference it made to have him lift my carry-on into the overhead bin, let me sleep on his shoulder on the plane, and say to me, “I already found a direct flight that gets us in by lunch time,” and this before we even started planning the trip.

No matter how much someone else helps, though, your physical limits are your physical limits. Only you know what these are. The most important questions to ask yourself include: How far can I go without spending the entire trip recovering? and What’s the greatest distance I can travel and still enjoy myself?


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. 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?

 

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.”

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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.

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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.


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]