Sit Down Before Reading, A Memoir by Dave Bexfield
Patients put loads of trust in doctors, mound it even higher when it comes to specialists, and routinely shovel it by the bucketful to the world’s leading experts and the renowned facilities that harbor them. There’s a reason people crisscross the States and travel internationally to get the best treatment possible at the Mayo Clinics of the world. That’s what Andy did, one of our closest friends, when he kept shedding weight at such an alarming rate that death was starting to become a plausible outcome before a team of experts at just such a clinic discovered an undiagnosed hernia missed by countless doctors.
When I received my multiple sclerosis diagnosis in 2005, my two sisters in particular—one a physical therapist, the other trained as a nurse—urged me to get a third opinion at the Mayo Clinic, the nearest of which was in Phoenix. Something wasn’t right, they insisted. I poo-pooed the idea. After all, I already had two confirming opinions, including one from New Mexico’s leading MS expert. Why delay the inevitable and toss money at wishful thinking? It was time to move on. I had a textbook case of MS that checked nearly every diagnostic box. Until 17 years later, when it didn’t.
Dave with his very cool sisters over the years
Why did I not pursue the Mayo route? Why, why, why? Ever since discovering my Lyme disease, that question had been beating me up for months and months, haymakers landing every week or so as I masochistically replayed my own misdiagnosis over and over. I should have followed Andy’s lead, listened to my sisters. If only I had just gone to Mayo for one more opinion….
“You would have still gotten diagnosed with multiple sclerosis, guaranteed.” My new Lyme doctor promptly cut off my woulda, coulda, shoulda like any self-respecting New York physician with a specialty in treating tickborne illnesses would. “Your test still would have been negative at Mayo. On the off, off, off chance that they said, to hell with it, and gave you antibiotics, you would have gotten no more than two to three weeks of oral doxycycline, a short course. Months later, maybe a year or two, your Lyme disease would have returned. And you would have been re-diagnosed with MS.”
The world’s leading medical institutions weren’t going to save me. Not Mayo Clinic, not Johns Hopkins, not Stony Brook, not Columbia, none of them. That’s what led me to a small, nondescript three-room office in a cozy New York town outside of Manhattan. A poster with an effusive Sharpie-signed “Thanks!!!” featuring a rock star adorned one wall.
“So, tell me again, who are you and why are you here?”
Laura was dumbfounded. We had just flown 1,800 miles, somehow juggled multiple flights with zero incidents, and were running on fumes after surviving a night at a quaint B&B with a “wheelchair accessible” room that boasted one lone grab bar. A bar that was located up a too-steep, half-assed ramp. In the tiny bathroom. On the far wall. Reachable only from the confines of the bathtub. All to meet this one expert, a Lyme-literate doctor with decades of experience, who now apparently had no clue who her husband was despite talking to him over the phone for nearly a half hour less than two weeks earlier.
At that moment, as Laura looked over at me with eyes channeling a blend of incredulity and “my husband best have a damn good explanation why he chose this doc,” I knew I had the right physician for the tall order of healing me. Of course he knew who I was. And now I knew who he was: a seasoned jokester with questionable humor who joyfully deploys deadpan sarcasm on unsuspecting subjects. Basically me—if I had an MD and less hair. Laura was going to have her hands full with now two wanna-be comedians. Her prodigious eye-rolling skills were going to be pushed to the limit.
After failing to find anyone to treat my Lyme disease in New Mexico and then failing to find a medical practice I was comfortable with in any of the surrounding states, I focused on Lyme experts in the Northeast with minimal woo-woo wellness—and preferably a minimal waiting list. One stood out: my personal Stephen Wright/George Carlin MD: Dr. Deadpan (okay, perhaps not the ideal anonymous nickname for a medical professional now responsible for saving your life, but one that absolutely fits). I could tell Laura was still trying to acclimate to his form of humor when she showed a brief burst of concern after Dr. Deadpan checked my blood pressure—and he uttered a mildly concerning “huh” followed by a very pregnant pause—before announcing that it was totally normal.
After spending nearly two hours reviewing my case, Dr. Deadpan agreed everything in my clinical presentation was pointing to Lyme disease. But without spirochetes poking their heads out of my pores like a very disturbed game of microscopic Whack-A-Mole, there was no way to be 100% sure. In his own clinical practice over the past 30+ years, he had seen countless cases where he personally observed the bullseye rash, even saw the tick, and still couldn’t detect antibodies in bloodwork or spinal fluid, even months later, in patients with clinically confirmed Lyme disease.
He suggested we start treatment conservatively. First, add an antiparasitic to the doxycycline, as coinfections from ticks are extremely common, in particular Babesia and Bartonella. Unfortunately, like the tests for Lyme disease, false negatives are common for these two conditions, which can wreak havoc on the body with odd symptoms not commonly found with MS. Night sweats and migrating pain (muscle, hip, chest) are common with Babesia, while Bartonella can produce everything from pain in the soles of the feet to swollen glands and psychiatric symptoms.
As for ceftriaxone, the “medically necessary” IV antibiotic I had been yearning to get from the moment I discovered that I had Lyme disease, getting it infused was problematic now. Since the recommended course would be a minimum of 28 consecutive days, we’d need to temporarily relocate to New York to receive the daily treatment through Dr. Deadpan. (Convenient for accessing mounds of tasty Italian food, not so convenient for anything else.) Instead, he recommended that we take a different direction and see if the therapeutic lightning that struck me after my stem-cell transplant could be recaptured. Bactrim, the antibiotic that I had taken daily for a year after HSCT, also treats Lyme disease. Perhaps that was the magic pill that jumpstarted my recovery so dramatically that I was able to walk a half mile unaided just a few months after starting the medication. It also might help my newly janky swollen index finger.
Beyond relieved to finally have a direction, a plan, to fight my Lyme disease, I turned my attention back to proving that my case of misdiagnosis was not a random, once-in-a-blue-moon medical misfire. I knew that I wasn’t an outlier. Readers of this memoir had been flooding my inbox for months with words of encouragement to keep writing, keep exposing. Because for many of them, my story, forebodingly, was also their story.
John Connor
The parallels between me and John Connor are striking. If you’ve watched any of the Terminator movies, you are almost certainly familiar with John Connor. John Connor, the son of Sarah Connor, the brave woman who stood up to the first “I’ll be back” Terminator only to befriend him in the sequel, Terminator 2: Judgement Day. John Connor, the messiah and leader of the Resistance who defeated a swath of robotic Terminators bent on destroying the human race. John Connor, the savior of the world.
Not that John Connor.
The John Connor I’m referring to is a 64-year-old British journalist who writes Fall Down Get Up Again for the website Multiple Sclerosis News Today. He was diagnosed with the disease rather late in life at age 48 and started writing his popular weekly column in 2017, numbering more than 260 at last count. Over the years I’ve occasionally popped onto his blog and commiserated with his MS’s aggressiveness, as our two diseases appeared to be trying to one-up each other. I had never directly compared them until the other day when I couldn’t stop reading.
The parallels weren’t just uncanny, they were hide-your-wife-hide-your-kids freaky. Even our writing styles dance to similar tunes, all the way down to our metaphors and pop culture references. Our persistent and unexplained UTIs were causing Cat-5-like destruction, we needed the expertise of Sherlock Holmes to solve the mystery before our diseases cut through us like scythes. Our only hope: lobbing prayerful Hail Marys for any salvation. Our coping mechanisms are even the same—lame humor (or humour with a “u,” he is British after all)—so Monty Python and Groundhog Day make appearances. Of course.
Like me, he kept getting rescued time and again from his suspected UTIs by antibiotics. “Suspected,” because despite frequently negative test results, UTI-squashing drugs spelled immediate relief. But the bladder infections always returned, over and over and over. “I’ve entered some sort of antibiotic time loop,” he wrote. He became so flummoxed at one point that he even referenced Dr. Barry Marshall’s revelatory antibiotic discovery that ultimately lead to his Nobel Prize. That Dr. Marshall, the one I personally wrote the other day.
John’s UTIs became such a predictable occurrence that he’d purchased his own testing kits so that he could get prescriptions filled asap when the next one arrived like the regular 4:35 afternoon express to Poughkeepsie. Indeed, they were so ubiquitous that John kept antibiotics squirreled away for just such emergencies. “A few years back, I also had every single medical test that my urologists could think of,” John wrote of his experience. “I came back with a clean bill of health. A urologist with a camera in my bladder even commented on how clean it looked. He was also impressed by my self-catheterizing routine! It made no difference. UTIs plagued me.”
Another symptom wreaked havoc with his system, one I too was intimately familiar with: swollen feet and legs. John’s feet began to swell after he had started on Lemtrada, one of the most powerful immune-system-depleting MS therapies and one that often puts the disease into long-term remission. Not for Mr. Connor. His issues started almost immediately, and in time his legs began “to impersonate the hindquarters of an elephant,” so much so that it necessitated an overnight hospital stay and “a short, sharp dose of the intravenous antibiotic gentamicin.” What happened next was entirely unexpected and totally predicable.
By the morning, I’d recovered somewhat and was sent home … I made it to the bedroom and honestly wondered if I’d ever make it out again … I couldn’t get up … I was now lying down, unable to move. … It had been a hellish night. I presumed it was a mega-relapse. Morning came, and I could now move my legs a bit. I was also dripping with sweat. The sort of clammy sweat that soaks your body when a fever breaks. I sat up on my own. This was a novelty. … I hope I’m through the worst. I do feel a bit stronger.
A brief bit of respite followed by a total collapse. Then, shockingly, relief and newfound strength, even his edema reduced slightly. “My feet and ankles are still terribly swollen, but I now have shin bones again!” John crowed in a series of blogs about the experience. He turned up the tunes to the one song that expressed his perplexed feelings of the moment: Marvin Gaye’s “What’s Going On.”
Marvin, John, I have a hunch.
Herxing=Working
In Chapter 15 I discussed the temporary bodily mutiny that often occurs when antibiotics are introduced to someone who has a spirochetal infection, the Jarisch Herxheimer reaction. In that situation, feeling as if you’ve been flattened by a dump truck loaded with busted anvils would not be surprising for someone with lurking Lyme disease. And then the resurrective recovery afterward when symptoms improve? Equally not surprising.
Although it was brief, Mr. Connor’s exposure to an IV antibiotic that treats Lyme falls into a likely Herx. Hellish to start—hospital, bedbound, “megarelapse”—followed by the novelty of sitting up in bed and seeing bones in his legs for the first time in months as the swelling had decreased. In contrast, generally my Herxes have been relatively tame on oral antibiotics, prodigiously sapping me of strength but not leaving me totally immobile. That level of response has happened only once, while getting my stem cell transplant.
During that 2010 treatment at MD Anderson, I was given a regimen of five powerful chemotherapies. It took about five days for the chemo to really rev up, at which point my strength totally evaporated and I was trapped in my hospital bed—unable to sit up on my own or even roll over—for three long days, an unusually harsh reaction according to my doctors. And if you are doing the math in your head, that also meant three long days of using a condom catheter and a bedpan, leading to predictable Dave-esque outcomes.
Yes, the condom once slipped off, and for a brief moment I was auditioning for the famous Brad Pitt role as Paul Maclean in A River Runs Through It. Only the river was a pale yellow. And it was a rather large river, as the docs had given me strict instructions to drink copious amounts of water in order to flush out my kidneys, which they made work overtime with Lasix, the same drug that is given to racehorses to make them pee. Yeehaw. And then—while trying to use a bedpan for other duties, specifically duty—things went even more sideways. Literally. Without going into a gross amount of detail, emphasis on gross, I discovered nurses can efficiently change your bedsheets while you are still in bed. But before I could applaud their efforts as they tucked in the final corner of the crisp, fresh sheets, uh, yeah. Another brownout.
But that couldn’t have been a Herx, right? To confirm, I contacted the transplant team to get details of any and all antibiotics I had received during my time in the hospital. Just Cipro, they said, a drug that doesn’t affect Lyme disease, and that was soon discontinued as part of my care due to elevated liver numbers. I only took Bactrim after I was released. Then their note conflicted with my memory. I remembered clearly that I had been instructed to take it for a full year as a prophylactic in the event of infection, which I faithfully did. But the dosage was far lower than I recalled: it was only a maintenance dose taken just Mondays and Fridays, hardly potent enough to significantly impact my Lyme disease post HSCT.
Where did my gains following the transplant come from, gains that were revelatory to my research team? I was the unquestionable star in the trial—I had improved 1.5 EDSS points, easily the biggest disability improvement of any patient in the HALT-MS study, jumping from being barely able to walk 100 meters to being able to walk 500 or more meters unaided, outwalking the disability scale. And incredibly, I was doing that feat within a few months. (The only reason those numbers aren’t reflected at the study’s 6-month mark is because I had broken my leg a couple of months earlier—due to overconfidence and the newness of walking again—and hadn’t yet fully healed.)
I guess it was my turn to ask Mr. Gaye what’s going on or, more specifically, research my patient records on MyMDAnderson. Because chemo and an irregular spritzing of antibiotics shouldn’t have been responsible for my rocketing ascent into the land of the abled. While my memory isn’t failproof (re: Bactrim dosing), it is unusually powerful at recalling important moments when focused.
So, I focused. And I recalled.
During my last round of chemo, while being infused with rabbit-derived ATG, I had developed a fever. I remembered that my physicians were so concerned with potential infection that they rushed me to another floor of the hospital—I can still see the fluorescent lights ticking past as my bed rumbled down hallways and into an oversized elevator—for an X-ray to check for any signs of pneumonia. To get the proper image of my lungs, I remembered that I had to hold on for dear life to remain upright, which at the time was a near impossibility due to overwhelming weakness. And then I remembered they said that to be proactive and safe, I was being given antibiotics as a precautionary measure, administered STAT through the central line in my chest. And I remember thinking at the time that it was overkill, that I didn’t need it. Except, it turns out, that I absolutely did.
Cefepime, an IV antibiotic, is commonly used in stem cell transplants to quell any potential infectious invaders, and in many HSCT protocols it is given as a standard prophylactic procedure. But it is also used to treat Lyme disease. I had received Cefepime by IV for 10 days, just long enough to put a serious hurt on my undiscovered ailment. Just long enough to reset my spiraling health. Just long enough to spur a remarkable turnaround. But not long enough to permanently dispatch it.
Lyme disease is like the Terminator. Without hitting it long enough, hard enough, it will be back in some form. It will always be back. That’s why it returned in my case more than a year and a half later. I still vividly remember the moment—DUNDUN DUN DUNDUN—trying without success to shake awake a sleepy foot one winter morning. It was the first hint that the sickening numbness in my arms and legs that had fully vanished after the transplant was preparing to return with a vengeance.
But now—confirmation. With the right treatment and enough time, my infectious beast can be stopped. I just needed my own Terminator-destroying, double-barreled sawed-off shotgun to take it down. Now if only someone locally in New Mexico would prescribe it for me.
The resemblance is uncanny, really (Terminator image courtesy Wikipedia)