Madison Area Lyme Support Group

When Lyme disease bacteria (spirochetes) cross the blood-brain barrier, they can cause myriad neurological impairments and nervous system inflammation. Neurological Lyme disease can manifest as brain fog, memory loss, word and song iteration, confusion, anxiety and depression, sleep disturbancesand more. “Lyme brain” is terribly frustrating for patients who could once multitask, but now lose their train of thought mid-sentence, or can’t find their way to the store. Many have written to me to ask what helped me improve cognitive function. Here’s what helped the most:

• Pharmaceutical treatment: Lyme is a bacterial infection, and you can’t improve cognitive function without killing the bacteria that’s causing it. Sometimes symptoms can get worse as bacteria die off faster than your body can eliminate them (a Herxheimer reaction), but in my experience, the payoff is worth the temporary increase in discomfort and decrease in capabilities. Your doctor may want you to pulse antibiotics in order to give your body time to recover. There are particular antibiotics that work best to penetrate the blood-brain barrier and improve cognitive symptoms. Because every single case of tick-borne illness is unique, there is no set protocol, but your Lyme Literate Medical Doctor (LLMD) can tailor one to your needs.
• Supplements: Certain supplements can help reduce inflammation and neurotoxins. Glutathione and Essential Fatty Acids are two that are commonly used (but again, I can’t give specific medical advice; you need to check with your LLMD about which supplements, and what dosage, would be appropriate for you). I’m wary of doctors who sell supplements themselves (you want to make sure your health, not their financial gain, is their top priority). Though supplements may seem good because they’re “natural,” they can have side effects and contraindications, so don’t always assume that natural is better. For me, I’ve needed a combination of both pharmaceutical treatment and supplements to improve all of my symptoms of Lyme disease, babesiosis, and ehrlichiosis.
• Rest: Your body needs adequate sleep to heal. This can be really hard to come by for Lyme patients, and it also can be aggravating and downright boring to be in bed all the time. But your body is working really hard to fight infection, and it needs all the rest it can get in order to do so. Even now, a decade into remission, I still can get neurologically overstimulated and experience a flare-up of cognitive symptoms. When that happens, I need to wind down, give myself some quiet time, and get extra sleep.
• Anti-inflammatory foods: In my post “The Lyme Diet,” I discuss foods that help with reducing inflammation. There are good foods to avoid, like gluten and processed sugar, and good foods to include, like fruits, vegetables, and proteins. Certain foods have antioxidant properties. Whether eating them has helped my cognitive function, I can’t say for sure, but I know it hasn’t hurt, and I’ll take any excuse to have a piece of dark chocolate!
• Pacing: It can be enticing to keep reading a book that you’re really into, or to binge watch a show, but doing either can be taxing on a Lyme-riddled brain. Often, I don’t know I’m overstimulated until it’s too late. I feel fine reading one page, and then another, and then all of a sudden, my head feels like it’s full of molasses. I’ve learned to stop while I’m ahead. You might tell yourself, “I have to stop reading after two pages, even if I feel fine, and rest for twenty minutes.” Eventually, as your infections get better, you’ll be able to do more, but you have to think of improving cognitive function as a marathon, not a sprint.
• Making lists: Because memory can be so impacted by tick-borne illness, it can help to make to-do lists for each day. You can literally write down tasks like “shower” and “eat lunch,” and check them off when you’ve done them (it’s especially helpful to set reminders, either in writing or on your phone, to take your medications). Write out only what you can handle for one day at a time, and put other items on lists for later in the week. Remember to include self-care items, too, like “rest” or “take a bath.”
• Neurofeedback: This non-invasive brain training program helps your brain to work optimally (the system I use is called Neuroptimal). I use it to help quiet my brain down; others use it to sharpen their thinking. The process uses your brain’s own information to figure out what it needs. It’s a relaxing process that involves watching kaleidoscope images on a screen (you can close your eyes if those feel overstimulating) and listening to gentle music while sensors are attached to your head. You’ll hear occasional skips in the music, which are signals that help your brain get back to its optimal state. Neuroptimal is great because it works on the whole brain at once. The neurofeedback practitioners I’ve worked with have cautioned against doing neurofeedback that only works on one section of the brain at once, saying this can actually worsen Lyme brain. I first got connected with my practitioner through a sleep clinic (which meant that sessions were covered by insurance). Your LLMD may want to do a sleep study, or refer you to a practitioner; you can also find one through the Neuroptimal site.
• Body work/cranial sacral massage: I do a type of hands-on therapy called Integrative Manual Therapy, which encompasses cranial sacral therapy and neurofascial processing. This gentle, light touch helps lymphatic drainage, and often calms my limbic system Easing these symptoms reduces my brain fog, allowing for better cognitive function. Some physical therapists offer this type of therapy (which again means that insurance can cover it).
• Play word and memory games: To help sharpen my brain (and keep me busy), a friend used to play writing games with me over email. He’d set rules such as, “Tell a story about a dog using only three syllable words” or “Tell me the name of someone we went to school with, and then come up with another using the first letter of that person’s last name.” I think these games helped improve my memory. It was nice to do them over email because I could take as long as I needed to complete them.
• Recall the music or games of healthier times: Memory care units for the elderly sometimes use music therapy to help prompt long-term memory. People struggling with short-term memory are often able to recall and sing entire songs from their youth. In the midst of convalescence, I played an old card game, “Scrooge.” This elaborate version of double solitaire requires memory, quick thinking, and strategy. These were not functions that I could generally execute well in those darkest days of illness, but while playing that card game, I suddenly could. When I won handily, my opponent quipped, “There’s nothing wrong with that brain of yours!”
• Limit stimulation: I quickly learned that loud noises, crowded rooms, and flashing screens would stimulate my brain to the point of shut down, and then brain fog would settle in. By limiting the amount of time I spent on screens, and avoiding particularly fast-paced shows, I was able to keep my brain calm so I could engage in other activities like writing and reading.
• Accept that there will be setbacks: Healing from tick-borne illness is not linear. You will regain some cognitive function, and then have periods of brain fog, and then start improving again. Eventually, if you follow your doctor’s protocol and stick to some of these tips, you should start to see more good days than bad. I still sometimes struggle with cognitive issues, but they are slight now. When I was at my sickest, I couldn’t read or watch TV. I mixed up my words. My head ached. Now, I can write, teach, read and watch TV in short segments, and generally carry on with good cognitive functioning, so long as I work to maintain my health.

Jennifer Crystal

Writer

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 using her email.

Email: lymewarriorjennifercrystal@gmail.com