Sit Down Before Reading: A Memoir by Dave Bexfield
Lyme disease holds a unique place in the lexicon of people who are just getting diagnosed with multiple sclerosis, during that fraught time when brains futilely grasp for other answers. It’s always rationalization #2, just behind pinched nerves, as the most logical reason why their bodies are in revolt. Unless, of course, you live in a tick epicenter, then the two flipflop. But both pinched nerves and Lyme disease rarely crop up when the diagnosis gavel clacks down. Pinched nerves are relatively easy to pick up on MRI, and Lyme disease has its own battery of CDC-supported tests, the ELISA and Western Blot.
With one diagnosis quickly dismissed, patients are left to ruminate over the other. In general, I’ve discovered neurologists are not huge fans of ruminations. Especially Lyme disease ruminations. They’ve heard it all before, as patient after patient muses they might have been bitten by a tick, maybe that time they went to a family reunion at a lake in Minnesota. Or went camping with friends in Pennsylvania. Or went grouse hunting in upstate New York.
Or went hiking in Old Lyme, Connecticut.
The more patients grouse, and the longer they’ve lived with an MS diagnosis, the more exasperated, and jaded, neurologists become. After all, there is a straightforward blood test for the Borrelia burgdorferi bacteria (the most common Lyme disease culprit in North America), and for late-stage disease, “100%” of those tested will have positive antibodies according to this seminal 2011 study. Curious. I guess to be technically correct for 2022, that rate must have dropped to 99.99999% (i.e., 100% minus 1 Dave). So, it shouldn’t have come as a complete shock when a family of crickets were suddenly birthed after I informed my neuro of my discovery.
The last time I experienced that many crickets was in a New Zealand glow-worm cave when our guide, nicknamed Kiwi Dundee, turned on his flashlight to show us the ceiling—the ceiling mere inches above our heads—carpeted with thousands of crickets with their spindly legs and long antennae. Quickly turning off his flashlight “to avoid alarming” the bugs, all went dark again as we held our breath lest we cause a sudden insect shower. That’s when Mr. Dundee took the leafy tree branch that he had surreptitiously toted with him into the cave and, ever-so gently, brushed it along the nape of my neck. Despite being unable to run due to my progressing disease, I ran. Oh, hells yeah, I ran! Or at least waddle-shuffled with bug-eyed alarm.
In the pitch blackness of the cave, I just aimed the camera above my head and snapped a quick shot, hoping not to disturb the disturbing crickets.
That tree branch was brushing my neck again. Only it wasn’t a tree branch. And I was in real danger. I could feel that my psychosis, aka the Devil, was lurking, gathering. My only hope was that Lyme-specific antibiotics would beat back the beast. There was only one doctor on my medical team who smartly had recommended continuing antibiotics to treat my recurrent UTIs: my highly regarded primary care physician, whose specialty is “just” (his words) sports medicine. I needed a hero to believe me. I sent him my Zebra Found email, marked urgent, with a personal plea. Help.
In short order a prescription for antibiotics was filled. My case was cogent and persuasive, my PCP said. We’ll start with doxycycline immediately and then we’ll get more testing done and find the right experts. Let him know if he could do anything else. I think every household within a square mile of ours felt a breeze from our collective exhale. There was nothing more to do. Except wait for the doxycycline to take effect. And hope to the ends of the earth that it did have an effect. Any effect.
Like the last drops of freshly brewed java desperately clinging to the coffeemaker before taking that final plunge, the days slowly, agonizingly, dripped by.
Day 1.
Day 2.
Day 3.
Day 4.
My neurologist finally wrote back. “Sorry for delay, had a couple of busy days this week…. Might be a good idea to get together to discuss your concerns with Lyme if you’re interested. We could order some antibody tests to see if anything comes up.” Yes, still interested. Yes, still concerned. A video call was scheduled.
Committed to Getting Committed
I heard a knock at my door. Funny, I wasn’t expecting guests, especially this late at night. But please, come in anyway. Get comfortable, put your feet up! And perhaps tuck in your tail, lest I accidentally roll over it with my wheelchair. That would be awkward, lol. I’ll put your pitchfork in the front coat closet for safekeeping….
Now I officially was in a full-on panic. Time was running short before I was going to get committed. In days (TOMORROW??), a team of EMTs and health providers, backed by police officers, was going to knock loudly on our front door and force me to take antipsychotics. As they took me away, they would explain that my whole wild theory of not having multiple sclerosis was concocted by my deranged brain. It was all for the best, Laura would say, kissing me on the cheek one last time as I was led out in a straitjacket before being shuttled to my new forever home at an appropriate institution. Just like in those horror movies. My chessboard that night deemed it all but a certainty.
I had to develop a failsafe, a strategy, to counter the inevitable. And quickly. Thankfully my definitely-not-crazy mind was up to the challenge. First, I had to reach out to a trusted confidant outside of our normal couple-friend orbit—no, TWO friends in the event one got compromised—with evidence of my Lyme disease diagnosis. (If they were also friends with Laura, she might get the drop, I smartly realized.) Second, I also needed to include my vastly expanded and epically brilliant Breaking Bad idea, since it will eventually rewrite how people work, live, and play worldwide and, for the betterment of society, couldn’t get lost in the ether of getting committed. Third, I needed to have specific instructions for them to follow when I got rubber room-orized. Finally, if the authorities were to gain access to my mobile phone, I had to cover my tracks. Delete all correspondence and establish code words, so if they pretended to be me when texting my failsafes, my trusted friends would know it was an imposter and not to cooperate.
I had rolled out of bed to craft the above definitely-not-crazy 1:15 a.m. email to Confidant #1. And then promptly deleted it from my sent folder, along with the other email that included detailed plans that would fundamentally change society for the better. Laura would be smart enough to check the sent folder. Sometimes I wish she wasn’t so so smart.
The Call
My scheduled video call with my neuro was that morning. It went about as well as expected, you know, for a patient who recently informed his longtime doctor that the diagnosis he confidently made 17 years ago was woefully incorrect. With a chuckle, my neuro said he could sense my enthusiasm for “having discovered what the docs have missed all these years.” He touched on the “true believers” of Lyme disease who are looking for other answers that can be dealt with easily, like antibiotics, and the inherent dangers of that approach. Antibiotic resistance. C-diff. And then worse, when the symptoms inevitably don’t change, then what? Plus, some people actually feel worse on antibiotics and develop new symptoms. Consider the downsides.
Before we hung up, he noted that he detected a slight deviation from my usual analytical process. But that’s understandable—he hears it often. Since I asked, he would test me again for Lyme disease, although he had never in his professional career seen a case of long-term chronic Lyme come back positive. I thanked him for his time and input. We’d talk again soon.
As of this writing, it’s the last time we’ve spoken.
Shortly after the call with my neurologist, I reached out with an unquestionable degree of urgency to Confidant #2 on WhatsApp. The conspiracy theories were now ricocheting around in my head as if my brain had downed four double shots of espresso followed by a chaser of Red Bull—ping-ping-ping!—but clearly they weren’t theories. They were fact.
As the day continued to spiral, my brain continued to dance to the same deranged tune. Maybe my daily exercise with Laura would help settle things down, or at least keep me from generating new theories of devious malfeasance. It did, at least temporarily. But when it was time to stretch, I was already plotting what to do next. Without the pulsating music of our “MMA-inspired exercise program” I felt it was a good time to reassure Laura that my brain was all better. Waaay better. I was getting pretty good at lying to her.
And then I shut up midsentence.
“Uh, honey….” I pointed to my feet. To my totally normal, unswollen feet. My feet hadn’t looked like this for nearly two years. Holy. Shit. Something is happening. And I’m pretty sure the placebo effect can’t spontaneously cause my forever-ballooned ankles to deflate. The doxycycline must be working. THE DOXYCYCLINE MUST BE WORKING!
We were both cautiously excited, perhaps a bit too excited, as we crawled into bed that evening. Sleep, so overrated. Especially for me, now a grandmaster at this chess thing. But something was off. The board was flickering, firing up in fits and starts. By 1 a.m. it had powered down. My brain, at least in that moment, belonged to me again. For reals?
I waited a half hour. It was still dark, the ceiling still a blank canvas. And I was still sane. Or at least as sane as I ever am. Would it last? Was it just a mirage of normalcy before the Devil came out of hiding? If I went to sleep, would I ever feel this way again? I couldn’t take that chance. So I started doing the wake-up-my-soundly-sleeping-spouse-by-accident toss and turn. And toss and turn. And toss and tu….
“What in God’s name,” Laura said groggily with appropriate 1 a.m. annoyance “... is wrong with you?”
“We have to talk. Now. Because it’s me. I’m back. The man you married is back.”