In a movie that time has forgotten, Night Shift, the character played by Michael Keaton (“Bill”) calls himself an “idea guy.” And he explains to Henry Winkler at one point that he came up with the idea for handy wipes, only that someone else had already come up with that idea.
I did the same with the description “brain fog.” It was how I began describing what I was going through to my wife and to doctors and I thought it was a Jim Cudahy original. It’s not. And it turns out is a classic symptom of Lyme.
I have to find SOME way to laugh at it now because, at its worst, the brain fog was debilitating. And because I couldn’t describe it well, it felt to me that other people, including doctors, dismissed it.
The brain fog took on multiple forms.
Memory. Those who know me well can tell you about my steel-trap memory. Not only did that vanish, but so did my ready access to words and names that previously arrived to me effortlessly. I’d forget the details of conversations. Trying to remember phone numbers was an exercise of futility. Names? Forget about it.
At one point long before my Lyme diagnosis but well into the onset of the disease, we were watching the movie Forget Alice with Julianne Moore. The movie chronicles the decline of a middle-aged person with early-onset Alzheimer’s. It was hugely upsetting to me because it felt so familiar. In fact, the character Alice was able to get some temporary relief of her symptoms after rigorous exercise, which is something that I definitely noticed. I later would learn that it was the sweating and the resulting detoxification of the Lyme that was responsible for my temporary relief.
But when you’re 48 years old and experiencing memory issues, it’s terrifying.
Because it was my brain and my mind, it occupied my thoughts constantly. As I was talking, I had to maneuver my way around words that would elude me. I continually would challenge myself to remember words or names, searching the recesses of my brain for relief. I couldn’t turn it off. As I was listening to the radio or television or to someone else speaking and I heard them use a particularly poignant term or expression, I would question whether I would be capable of accessing such a thought. This would happen hundreds of times every day. It was like there was a hard drive running in the background of my brain at all times, churning away as the conversations and experiences of life were unfolding in front of me. It instilled a constant anxiety that I just couldn’t shake.
Conversation. I’ve heard someone describe brain fog as the equivalent of trying to swim through Jello. That ALMOST gets it for me. I tried to describe it to my wife, but – surprise, surprise – I never could find the right words to describe it so she never understood. When I would have conversations, particularly at work, it was as if I would sink back into my mind, or down an echoing corridor. At those times, the idea of having to react to questions and to talk and articulate ideas felt impossible. It was terrifying. On top of everything else, it was mentally and physically exhausting.
Still undiagnosed, I continued to attribute the brain fog to hypoglycemia. I had what my wife and I began to call “good sugar days” and “bad sugar days.” They seemed to come in patterns, days or weeks at a time (more bad than good). Some days my brain fog would lift and I would feel like my old self; sometimes that would happen for a few days or even a week at a time. I would feel a euphoria at those moments, thinking I’d kicked the problem, but, inevitably and disappointingly, the brain fog would return.
Lyme bacteria live, die, and regenerate in cycles. That was responsible for the disappearance and re-emergence of my symptoms. As I searched for patterns, the one thing I noticed for certain was that when I exercised vigorously – running hard and sweating – I felt better. Early on, I had fear that exercise would burn blood sugar, which I was told my problem and to some degree was. So I stayed away from vigorous exercise for that reason. But somehow I realized that if I DID exercise, I felt better. And eventually I figured out that the HARDER I exercised, the more mental clarity that seemed to arrive. When I queried a doctor about it, she said that, yes, it made sense, that exercise had a stabilizing effect on the pancreas, which would bring corresponding stability to my blood sugar.
If you follow my wife’s blog, you might know that we would have to go “off the grid” to a Lyme Literate Doctor to get answers. It turns out that Lyme manifests itself differently in different people. While it’s technically true that I had hypoglycemia, the working theory of my new, Lyme-literate doctor is that Lyme was stressing my adrenal glands, which, in turn, was triggering my pancreas to over-produce insulin.
The reason that exercise brought relief was that I was detoxifying and ridding myself of the Lyme symptoms.
The cycles and the fact that exercise brought temporary relief of my brain fog should have been a huge clue. The idea that my description of exercise didn’t trigger Lyme Disease bells for that doctor is symptomatic of the degree to which Lyme Disease, its diagnosis, and its treatment remain a mystery to a great deal of the medical community who thus follow incorrect paths in the diagnosis and treatment of patients who have had prolonged exposure to Lyme.