Tag Archives: brain fog

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]

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.