Sit Down Before Reading, A Memoir by Dave Bexfield
“C’mon, we have time, we can be quick!” I wanted to maximize the fleeting remaining hours of our short vacation. We had spent the last few days with my parents doing the tourist thing, but they flew home the previous day. Our flight to Albuquerque didn’t leave until the afternoon, and after a breakfast swimming in calories courtesy of our B&B, a short hike seemed like a positively brilliant idea. Emphasis on brilliant.
Laura was not so sure. Hike=sweat and bug spray=more stink, two unappealing additions right before a day of cross-country air travel with two layovers.
“But it’s only in the 50s, so at most you’ll get a little moist,” I argued, instantly regretting using the term “moist,” a word that does not typically spark joy. “And it’s still early in the day, so the bugs won’t be on the munch.” We could skip the insect repellent for the short hour and stick to the center of the trail to avoid any opportunistic lurkers, I reasoned. I was working every bodily perfume angle I could.
My brilliant idea begrudgingly was agreed to and the innkeepers at the Bee & Thistle steered us to a pleasant local network of short trails just a minute up the road, a mere .7 miles away: The George & Woodward H Griswold Preserve. Kismet.
It was September 20, 2004. In Old Lyme, Connecticut.
Nice breakfast, then hike in small preserve before heading off to airport.
How I Became a Sick Person
When Laura and I started reading the Sunday New York Times, it was more out of necessity than a strategic plan to stay abreast of pressing news. To avoid getting sick before and after my 2010 stem cell transplant in Houston, we mostly stayed in our Montrose neighborhood home. And I had brought zero books to read for our scheduled 3-month stay. The Times was our respite, an escape from our medical appointments and blood draws and endless MRIs. Today it’s still our Sunday routine, and on that October ’21 morning—after it had been broken in by Laura—I settled into the Sunday Review (recently renamed Sunday Opinion), the op-ed section of the paper.
I don’t go out of my way to read missives by hair-on-fire angry-at-the-world columnists, or evenly moderately annoyed, measured columnists. I don’t like to start my Sundays riled up. But the day’s entry by Ross Douthat, a regular columnist for the Times, was a departure from his usual geopolitical observations or religious contemplations. It was about how he became a sick person. A sick person like me.
As someone with a chronic illness, his story was achingly familiar. Puzzling symptoms, a hunt for a diagnosis, the desperate scramble for relief. Funny, he also suspected Lyme disease, just like I had when I got diagnosed with multiple sclerosis back in 2005. Except, it turns out, Mr. Douthat finally got confirmation that he really was struggling with Lyme. My tests for the disease were always negative—the retest I insisted on taking, and then the retest of the retest after that. Always negative.
In the years that followed my MS diagnosis, I often brought up with my neuro at our annual appointments that I believed I may have Lyme disease, that I remembered the tick and the rash. Plucking it out of my scalp in the shower on a warm Indian summer day, my bathroom’s glass block windows rippling the late afternoon sunlight, only to watch the invader swirl down the drain before I could identify the culprit. Just an errant boil or blackhead, probably. Shortly after, hiding the red-striped blemish on my forehead—that I thought at the time was merely a rather bizarre sunburn or a rash from wearing a sweaty baseball cap—with Julius Caesar bangs; I told Laura that I had decided to try the George Clooney look.
The answer from my neuro was always the same: your symptoms are classic MS, but we could retest you. Retest me with the same test that consistently came attached to the all-clear result of “Neg.” every time? Eventually I stopped asking. In 2018.
But now I kept rereading the end of Mr. Douthat’s piece. The antibiotics stabilized him, just as they appear to stabilize me. But his symptoms were way different than mine. We couldn’t have the same disease, could we? Lyme is all about mysterious, murky, hard-to-define symptoms, not neurological MSey ones. Plus, I had all the typical neurological markers for the “many scars” disease: brain lesions, spinal lesions, telltale banding in my spinal fluid, Lhermitte's sign, Babinski's reflex, all of it. But just to confirm, I figured I’d check with the website of the Centers for Disease Control and Prevention, the national public health agency of the United States.
Lyme disease is the most common vector-borne disease in the United States. Lyme disease is caused by the bacterium Borrelia burgdorferi and rarely, Borrelia mayonii. It is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides, and reducing tick habitat. The ticks that transmit Lyme disease can occasionally transmit other tickborne diseases as well. — CDC
Interesting. Plausible. Then I clicked on “Signs and Symptoms of Untreated Lyme Disease.” Let’s put this fantasy to bed.
I froze.
graphic courtesy the Center for Disease Control [CDC]
The stroke-like symptoms when I was diagnosed, when I only half-smiled in the mirror? The spine and brain lesions that followed? All the numbness and tingling in my extremities? Well, duh. This can all be explained—it’s “classic” MS. But add in the intermittent joint pain, swollen knee, odd rash, and irregular heartbeat, and that Lyme disease fantasy just sat bolt upright in bed all movie-cliché like. I rushed to get my journals from that time and started frantically pouring over them as if my life depended on it. Because it did.
*At 10:15 PM noticed side was numb. Waited but did not go away so went to emergency room & got CAT scan to check for stroke. Right side mostly numb, esp. chest.
The evidence bled through the crime scenes of my ’04 Tuscany and Provence, ’05 Weird U.S., and ’06 Get Fuzzy desk calendars.
Sep. 20, “Nice breakfast, then hike in small preserve before heading off to airport.”
Jan. 7, “Wrist in mega pain during dinner [overseas], called docs back [in U.S.].”
Sept. 25, “Went to emergency room and got CAT scan to check for stroke.”
Dec. 14, “[Orthopedist] looked at me and basically said unlikely MS, knee still swollen.”
Jan. 25, “Resting heart rate is 100 beats per minute—way high compared to my usual rate in the mid 70s. Very odd. MS? Something else?”
Feb. 21, “Met with infectious disease doc and got tested for West Nile, AIDS, and Lyme (again, my request). He’s baffled as well. Might just be MS with odd symptoms, which is fine and dandy. If that’s the case.”
“Might just be MS with odd symptoms, which is fine and dandy,” I wrote on February 21, 2005, with this prophetic disclaimer. “If that’s the case.” At that moment it was becoming crystal clear: that most definitely wasn’t the case.
The Smoking Gun
When it comes to my health, I’m obsessively thorough, meticulous, methodical. Actually, that’s not the whole truth. I’m that way with vacation planning, cooking for more than one, organizing my digital music, sorting through vacation photos, cleaning out junk drawers overstuffed with technically-operational-but-shoulda-been-tossed-years-ago ink pens. Okay, fine! That’s the way I am—anal about the details. So, I was sure that when I was getting diagnosed with MS, I had dutifully recorded every twitch, every hiccup, every errant nose hair.
I did. My God, did I ever. In reams of notes. And in letters—to my diagnosing neurologists.
On November 23, 2005, I wrote to the doctor who initially diagnosed me…. “I passed the Visual Evoked Potential test (in normal ranges all around). … After talking with [the MS specialist’s] nurse in more detail later … she said a swollen knee is not common with MS (try Googling MS and “swollen knee” and all you get is pages of Lyme disease misdiagnosed as MS) and suggested I see a doctor about the knee … I am now using a hinged brace.”
But it was my letter to my MS specialist on January 26, 2006, that left no doubt.
“I have a strange symptom that appears directly related to my demyelinating event that triggered my attack Sept. 25. I’ve been tracking my heart rate for a couple months and something is definitely not right. My typical heart rate during the day is now 100-110 bpm. Ever since my attack in late September, my heart rate has been 25-35 bpm higher than normal. As I type this, my heart rate is humming at 104 bpm. As a daily exerciser for the past eight years, I’m in excellent physical condition. At first I thought I was out of shape for not exercising due to my knee pain for a few weeks. But now, after returning to my regime for the last few months, I’m concerned.”
I proceeded to detail five years of heart rates recorded at previous medical appointments; 74 bpm (9/1/05), 72 bpm (5/24/05), 76 bpm (7/29/04), 80 bpm (2/24/04), 80 bpm (12/30/03), 68 bpm (1/25/02), 72 bpm (4/15/01).
“When I exercise now, my heart rate jumps very quickly (often under a minute) into the target zone (130-160+) with minimal effort and the lowest I can get my heart rate to drop to in my cool-down phase is the high 120s; before it would take 5+ minutes to raise my heart rate and I could lower it into the 105-115 range. … I believe the timing of the high heart rate and the attack suggests it is too coincidental” not to be related.
I closed that January letter by spilling the last of my evidence onto the examination table for the conclusive autopsy to come that turned out to be anything but conclusive.
“Any ideas? A reminder, I’ve traveled to some odd (and not so odd) places in the months prior to the onset of symptoms: Vietnam (Jan 05), Cambodia (Jan 05), and Connecticut (Fall 04). … In CT I hiked through the woods of Old Lyme. … The only odd occurrence happened in Cambodia when my right wrist went from mildly achy to very painful over the course of a day.”
Wrist in mega pain during dinner, call docs back home.
File after file in my “MS” health folder on my PC complained about my knee, my heart. But there was one file I almost couldn’t bear to open: one titled simply “Lyme” dated March 17, 2006—54 pages, culled from dozens of websites, all discussing how easy it is to misdiagnose the tick-borne disease for multiple sclerosis. How negative test results could not be trusted. How CSF banding was in no way definitive. How paying attention to the clinical signs was paramount. How lesions on MRI could deceive. “Because encephalomyelitis clinically may result in prominent pyramidal, sensory, or cerebellar syndromes and because the MRI lesions resemble demyelination, patients with Lyme disease may be mistakenly diagnosed as having multiple sclerosis.”
In all, I saw two neurologists, one MS specialist, an orthopedist, an infectious disease doctor, two cardiologists (and a weekend of wearing a Holter monitor), and countless other doctors, from my then PCP to a stream of ER docs. And I told anyone who would listen: knee, wrist, heart. All following a visit to Old Lyme, Connecticut, in the fall of 2004. For the six months it took me to get diagnosed with MS, it was as if I was hollering my concerns into an empty high school gymnasium, my words echoing off the stacked wooden bleachers, basketball backboards standing sentry at either end. Hello, is anyone listening? Hello? Hello….
Dave in a hinged brace; wrist pain in Cambodia; wearing a Holter monitor to check heart rate
100% Confident
“It’s been Lyme disease this entire time.” My hands tightly squeezed Laura’s. No, tighter. I searched her face for agreement. For affirmation. She had to see that the evidence was clear-cut. Indisputable. Unquestionable.
“I want to believe.” Laura, my brilliant scientist of a wife, was either channeling FBI agents Fox Mulder and Dana Scully from the X-Files or just being her normal, let’s-be-sure-about-this-stuff-before-we-reach-conclusions self, especially since my mental state was at the time in one hell of a state. “And I do.”
Even though I was one good breakdown away from a padded room, Laura believed me. She believed me. Now I just had to get my doctors to believe me, starting with my neurologist of 17 years. Days later I was finished with my revelatory email—courteous, professional, and detailed with evidence—and typed into the subject line “Zebra Found! (sit down before reading, sorry).” After one final proof—yes, “I am 100% confident in this diagnosis” and reaffirmed that opinion in my letter—I clicked send. There was nothing more to do than wait.
And wait.
And wait.
But my disease was not going to wait. Two days later I sent off another urgent email to my neurologist, who had always gotten back to me promptly.
I again was back in my high school’s gym, only now my plaintive calls of hello soon turned to panicked screams, screams that futilely bounced off the walls to a crowd of zero.
The Devil had returned.
