Dear Lyme Warrior…Help! Memory Loss and How to Travel with Lyme Disease

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 jennifercrystalwriter@gmail.com.

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?