There was a time when I thought Lyme disease meant a fever with other flu-like symptoms and a bull’s-eye rash lasting maybe a few weeks. Even when I read that these infections can cause problems with cognition, I didn’t really get it.
Early on as my mind faltered, I thought, “Damn, it’s really happening, I’m getting older and my brain just isn’t working like it used to.” Then I figured, “Wow, the pain and fatigue from this illness are really affecting my ability to think.”
My teenaged son would look at me like I was crazy when I’d forget something we were supposed to do together. I took him to the dentist on the wrong day, even though I looked at the appointment right there on the kitchen calendar a dozen times. On some days, my brain just could not take in information correctly.
I’d blank out on the names of long-time colleagues, or struggle to put together copy for an assignment that should have been easy after many years of writing professionally.
I’d turned 50. I thought the trouble was aging. Turns out it was my brain on Lyme.
Now I understand that Lyme and other illnesses passed on by ticks can affect you in many ways, depending on where the bacteria dig in. Paula Weintraub, author of Cure Unknown: Inside the Lyme Epidemic, calls the cognitive side of Lyme “the shadowland of the mind.”
Over time, I descended deeper and deeper into that shadowland. At the worst, I did crazy things like messing up my cash flow big time by paying my mortgage twice in two days, even though the facts were right there in front of me, on the online banking page.
I had trouble learning new tasks. No matter how many times my patient HR colleague showed me the simple process for submitting my parking stubs for reimbursement, I could not hold the information in my mind.
Colleagues had to walk me through how to post photos on our blog a dozen times; I couldn’t remember. Sometimes I wasn’t even able to follow the notes I made to help myself. I burned with embarrassment every time I had to ask for help more than once. I didn’t know it then, but it wasn’t old age creeping up on me. It was Lyme bacteria invading my brain.
Over time, I was struggling more and more. People who didn’t know me must have thought I was an idiot. I felt bewildered, because I didn’t yet understand what was happening to me.
Then the day came when I could no longer work because my body crashed; I was housebound for months. I wept in frustration over the days it took me to fill out a disability insurance form. My healthy brain could have cranked it out in 30 minutes or less.
Shockingly, at one point I lost the ability to read. I can remember lying in bed staring at my toes for hours because I couldn’t follow a plot in a book (or a movie, for that matter). Books have always as essential as air and food for me. But Lyme had whisked this necessary pleasure away. I was bereft.
The day came when I was able to drag myself out of bed and attend a local Lyme support group. That’s where others talking about similar challenges really opened my eyes.
One woman shared her reliance on a GPS to locate places she’d known for years, which resonated with me because I’d had trouble finding the library where we were meeting even though I’d been there before. A former university professor talked about cognitive challenges that left her unable to teach.
At another meeting, I heard the story of a man who went to an audiologist for hearing aids because he was missing information in meetings at work. The audiologist explained that he was hearing just fine. It turns out that tick-borne infections were affecting his brain’s ability to take in and process the information.
My Lyme doctor said to me, There’s bad news and good news.
The bad news is you have Lyme and co-infections. They’re causing all your symptoms, including cognitive.
The good news is you have Lyme and co-infections. That means we can treat the cause. Unlike an Alzheimer’s patient, you can get better.
Gotta love a doc who makes you laugh at your sickest—and gives you hope.
I did get better. After three months, I started a book and was able to follow a plot and remember it—the day I finished that entire Dick Francis novel was truly a banner day. I couldn’t wait to tell my Lyme doc. Woohoo!
When your brain doesn’t work, hopelessness sets in. These symptoms affect your work, daily tasks, and relationships. The sharp edge of fear adds another layer of complexity to the illness, stabbing at you day in and day out.
But with treatment, I am progressing from mentally empty days to slowly but surely reading and writing.
I’m confident that eventually I’ll get back to thinking as quickly and easily as I used to. One of my favorite authors, Amy Tan, came back to her writing career from a pretty devastating Lyme experience. So will I.
Kindly scroll back to the top for links to more Lyme posts. And don’t miss the videos!
Tagged: Amy Tan, cognitive, cognitive function, coinfections, Cure Unknown: Inside the Lyme Epidemic, lyme, lyme brain, lyme disease, memory, memory loss, mental processing, Paula Weintraub, symptoms, thinking, work, working
Thank you, thank you, THANK YOU so much for this particular post.
I’ve loved reading your blog and this one truly resonated with me. As a blogger, perfectionist, and Lyme sufferer myself, I could identify with every single point you made. I wish I could show what you wrote to every single person I know to get them to understand a piece of the frustration and devastation that Lyme can bring to your brain.
Also, I commend you on writing such an excellent piece, because I know, from experience, that this was not any easy task for you. Even as my brain continues to get better and better, I still find typos in my writing and I labor much more intensively than I did just to express exactly what I’m feeling. Kudos to you for getting back on the horse. I wish you (and me) lots of success in recovery!
Isn’t it amazing how much it helps when you know someone can totally relate? That’s why I love blogs and support groups.
Who cares if we have typos? It’s expressing and sharing insights and feelings that count. Love your blog, starting with the title “Constantly Under Construction.” That says it all!
I so agree with donna! Thank you for this post! It says exactly what my Lyme brain doesn’t know how to spit out anymore.
This post meant so much to me because you really put into words what I am feeling – that my brain just doesn’t work. I can’t get information into my brain and I can’t remember what I read. Thank you for understanding and for having this blog.
But our brains WILL work; treatment takes time. Meantime, we just have to support each other. I know many people whose minds have improved, and mine certainly has come back a lot. Patience!
I really loved reading this article, I have suffered with Lyme disease since around 2006 but wasn’t actually diagnosed with it until January 2014 I have been on every antibiotic combination I could imagine I have done the Cowden protocol and the latest LDI and sometimes the symptoms improve with different things but for about a year I have not been able to work because of the brain confusion,pain and anxiety of it all. I hear many stories of people that have been cured within months and I hope one day I might be too, but as the hours,days,weeks,months and years go by it doesn’t seem like a reality I will every enjoy.
I wonder if you have been treated for confections. I’m very lucky to finally be improving, after four long years on antibiotic treatment- and treatment for the parasite babesia (see my posts). That one was stubborn, and I only really began to get better when it was finally under control. Hope you have a good LLMD (Lyme Literate doc). And patience, always patience. I was once where you are now, so I can tell you honestly that improvement is possible. Stay as positive as you can!
Thank you for writing this. I so relate. I am not who I was. Lost Cognitive function, found a LL Doc, tons antibiotics, got sick on those, so switched to 6 months on cowden. I am better, but not at all who I was. I miss being in business. I miss being sharp. I too depend on GPS, notes, lists, and the friends who are kind and understand my forgetfulness. Hope they find a full cure soon.
Hi there, thanks for writing. I think the biggest point you make is that you are not at all who you were. How many thousands of us feel that way? When your mind goes, so goes your personality, it seems. My spirits got so much better once my mind returned to me. I encourage you to stay on treatment, maybe try another doc’s approach, see if you can find someone who follows the ILADS guidelines.
What treatment cured you????
Note that I’m not 100% cured yet, and it may be that most people who’ve had Lyme for a long time won’t ever be completely rid of it. Having said that, I am drastically better after several years of antibiotic treatment to kill off Lyme and some other confections, as well as additional medication for the parasite babesia. Do your research, find a doctor who you trust. Check out the ILADS guidelines. How long have you been ill?
I was diagnosed with babesia several years ago and now I am having the same memory problems and a lot of the same symptoms you described and it seems to get worse every day. I was treated with antibiotics at the time for a while-maybe not long enough. I think I should get tested again.
Rhonda, you don’t say where you live but perhaps you can seek out a doctor who also treats confections. Babesia is not treated with antibiotics, which target bacteria like Lyme, but with anti-parasite medications. Babesia can be hard to lick. And it can cause all kinds of symptoms. Keep seeking answers!
Please tell me the name of your doctor!!!!!
Chris just seeing this years later are you still out there? I relapsed. How can I contact you?