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Chapter 25: The Response

Updated: May 3, 2023

When I heard the news, I don’t remember ever crying that hard. Not over the phone, anyway. And certainly not in front of Laura. I tried apologizing through my wails, but I couldn’t catch my breath fast enough. The waves of life’s inescapable realities had finally breached my optimistic levies. I had tried to brace for the news that I feared was coming the moment I answered the call, as the frail, slurring voice on the other end pressed forward. I could barely stand to listen.

Mike working out at the gym

“It’s time, Dave.” Mike McDaniel, just a few years older than me, was my closest friend with MS. We met during the first months of my diagnosis and our long friendship evolved into something far more than carpooling gym partners. The two of us had struggled in tandem with our diseases for nearly 15 years—always providing each other with understanding, commiserating shoulders—but the last year for Mike had been a full-on assault, his multiple sclerosis shredding what was left of his abilities with the efficiency of an assault rifle. His pain had become unbearable.

Our calls recently had been public affairs, his arms too weak to hold a phone, his speech now garbled and faint. He had been having a caretaker come into the home regularly to assist with bathing and other tasks, but he and his wife had come to the point where even that wasn’t enough. He needed full-time care. He needed to go into assisted living. A nursing home. At the age of 55.

I finally choked out a barely intelligible “sorry” between sobs, an apology that soon turned into a sloppy, blubbery mess of sorries. I urged him to keep going, keep strong, that he could so do this, to think of his daughter’s upcoming high school graduation. College. Marriage. Grandkids. She needed him. His wife needed him. But my tears betrayed me, my urging a hollow call to arm. It was one of the last times we would ever speak.

I became terrified to call, trying to keep the fantasy alive as long as I possibly could, the one of Mike comfortably living at home with his wife and daughter, still bumping his scooter into walls and eating trail mix out of the Ziploc bag his wife dutifully prepared for him daily. If I didn’t know what was happening, have actual confirmation, it might not actually be happening.

We hadn’t talked in weeks. Weeks then turned into months. Did I try to call him a few times only to hang up after Mike’s phone rolled to voicemail without ringing, being comforted by his voice, once again strong, defiant? Surely, I must have. But now I don’t remember. I only remember the moment—in a Dallas hotel room, running one last time through a speech I was preparing to give that evening—when I got a Facebook friend request from his wife. Before we even talked, I knew then it really was time. Mike was never going to allow his disease to get in the last word.

After I spoke to his wife, I started to craft his eulogy.

Not Again

I don’t personally know John Connor. He doesn’t personally know me. We are just two public faces facing down enormous challenges in public with our dueling MS diagnoses, our struggles documented on the screens of computers, phones, and tablets. I started by reviewing his blog posts from his first columns five years ago to get a sense of his journey, zipping through dozens of posts looking for evidence. The more I read of his travails, working my way to present day, the more assured I was that I was right. John has what I have. By all appearances, it looks like he has Lyme disease.

One of John’s most debilitating side effects of his disease, thought to affect 2% of MS patients, is trigeminal neuralgia, or TN, an incredibly incapacitating condition that feels like electric shocks on your face. In John’s case, it was focused as neuropathic jaw pain. “Think of the worst drilling pain you’ve ever experienced at the dentist’s office and multiply it by 10,” John wrote. “I was screaming for three hours.” This deluge of disability arrived immediately after a second round of Lemtrada, among the most powerful, immune-depleting MS therapies. This was no coincidence.

courtesy Wikipedia, full credit in text

TN is common in Lyme disease, so common that dentists are encouraged to look for it when evaluating cases. And it’s no surprise that Lemtrada played a role, because when the body’s immune system goes on a forced, drug-induced “vacation,” those spirochetes come out and play. “From the moment the drug was infused,” he wrote, “my mobility declined and my right hand was also immediately affected.” It triggered the swelling lymphoedema in John’s feet and ankles, and then his trigeminal neuralgia. “Like Germany in 1945—fighting on three fronts!” he wrote of his battles with MS and the pair of accompanying conditions. The near exact same thing happened to me, most recently with Mavenclad (cladribine), an MS therapy that temporarily clobbers the immune system, peaking at the three-month mark after treatment. The three-month mark for me? That was when my UTIs raged like John Wick and my psychosis bloomed like the corpse flower. [image courtesy Wikipedia; Amorphophallus titanum (Aracerae), 15 May 2003, copyright W. Barthlott, Botanical Gardens of the University of Bonn (Germany)]

Dave getting central line port cleaned by Laura

“My handwriting, which has always been terrible, descended into such a state that even I couldn’t read it.” Mine, too, John. He also looked into stem cell transplantation, the riskiest of all MS treatments, but he did not qualify. If he could have, he would have—the danger of dying was of little concern. “I would risk anything to halt the decline into complete immobility.” Right there with you, John, that’s why I did it. (But how about let’s not discuss our mutual erectile dysfunction issues or our mutual bowel issues.)

Dave playing wheelchair tennis
John was probably better than I was at this

Before his MS diagnosis rudely upended his life, John frequently enjoyed the outdoors with his son, even rappelling off cliff faces as part of scouting weekends. All now nothing more than a memory, like his days of playing wheelchair tennis. Like his driving. Like his independence. The flash of relief from that brief course of IV antibiotics, a jolt of caffeinated hope, soon faded and he was once again in disability freefall. As I kept reading, John’s health continued to spiral.

My world is considerably smaller. It’s mostly my bedroom. I can get out of it, but it takes a considerable effort. In the last seven days, I only exited it once. Last night, I managed to get down the stairs, plonk into my new heavy-duty wheelchair and get into a wheelchair accessible vehicle. [continue reading]

By February 2018, walking became a nonstarter. “I’d fought, taken every medication and supplement possible, but I’d lost. Maybe positive thinking and mindfulness would have helped, but for me, that was a step too far!” His gallows humor still intact, John was at one point stuck upstairs for two months. He eventually permanently moved downstairs and had a wheelchair-accessible washroom added. Other aids soon followed, including a swath of hoists to lift him into the bed, onto the toilet, into his wheelchair. To take pressure off his wife, every morning a team of caregivers arrives to assist.

Now I have no idea if I can survive this acceleration of MS. … Losing standing meant losing my last shreds of independence. I couldn’t go to bed when I chose to. I couldn’t get up on my own. Worse, I could no longer transfer to my commode without help. A toddler can happily climb onto the potty with a tad of training. This was now a dream.

In the fall of 2021, this was destined to be my future, too, until suddenly it wasn’t. I kept reading to catch up to today and the words tumbled onto his pages just as they had mine, as we reflected somberly on last times.

I don’t remember all my last times doing something. Some I do. The last time I got to work on my own. The last time I climbed the stairs to bed. The last time I attempted wheelchair tennis. … It’s the opposite of growing up. Milestones turn into yardsticks. My world is shrinking. …

Our struggles, mirror images. Our disability arc, identical. Our thoughts, indistinguishable. Almost. One sentence froze me. “Pragmatically, I’ve talked about future suicide with my wife and neurologist.”

No. No, no, no, no. I immediately stopped reading and sent John an urgent note. “We need to talk.”

A Response

While waiting anxiously for word from Mr. Connor, I finally received a response from another email I had written nearly six months ago. Thirty whole words—ergo, a scintillating typing speed bordering on 1 wpw (one word per week)—from my neurologist in response to my “Improbable Proposal”.

email text from doctor to Dave

“Hi Dave, Hope things are going well. Send me an update if you will. We got a renewal notice for Mavenclad for you but not sure where all that is right now. Best as always, [Doc]”

Mavenclad is the multiple sclerosis drug that is fantastic at treating MS… and equally fantastic at turbocharging Lyme disease. As my second-year dosing window had already come and gone, it appears the drug company had reached out one last time to be sure sure that I was done with their treatment. Yeah, I was done. As for where everything stood, I responded a couple of days later. This seemed like it should do the trick explaining my current standing.

[Doctor], thanks for reaching out. That Mavenclad request must have been in error as I am still waist deep in Lyme disease messiness. And it is getting messier. If you have been following my memoir, you are aware that you and many of your MS colleagues have taken center stage in the latest chapters—Chapter 21: An Improbable Proposal and Chapter 22: Iceberg Right Ahead—as I continue my desperate scramble for appropriate treatment.

I am currently under the care of one of the country’s foremost Lyme-literate doctors. He is based out of New York, and while he can prescribe medication from afar to his patients, he cannot remotely administer the one treatment most effective—and medically necessary—for my neurological form of Lyme disease, Lyme encephalomyelitis: 2 grams daily of IV ceftriaxone (Rocephin) for a minimum of 28 days.

Laura and I are prepared to temporarily relocate to New York if forced to, but our overwhelming preference would be to remain in-state here in New Mexico. My original proposal to you and UNM still stands, and my recent writings will provide more clarity as to my reasoning. If need be, the offices of Sen. Heinrich and Rep. Stansbury have offered their assistance, and I can reach out to my contacts with the governor and mayor as well.

Please know that I harbor no ill will toward you or any of my doctors, as I’ve learned in my research that my misdiagnosis was all but unavoidable. What is avoidable? Any further delay in treatment. It has now been over one year since I discovered I have Lyme disease, and the inability to get properly treated for a treatable disease has become untenable. I plan to do everything in my power to get this treatment started before the New Year.

Please see attached for my up-to-date case summary. I now know why HSCT temporarily worked so well for me: during my hospital stay I received 10 days of an IV antibiotic that treats Lyme disease (cefepime). I am scheduled to see you December 13 at 3 p.m., but I would like to get started immediately on a plan to put my Lyme disease into permanent remission with UNM’s expert assistance. If you or the university are unable or unwilling to help, let me know as soon as possible.

ASAP apparently means different things to different people. Three weeks later and days before our scheduled appointment, after presumably writing and rewriting to avoid any whiff of culpability, my neuro and/or a team of lawyers penned this back.

I read through much of your memoir and have a hard time knowing where to begin. We’ve been working together for many years trying to stay on top of your MS and stabilize your disabilities. In my opinion you do have MS with secondary progressive aspects and that remains difficult to treat reliably. I don’t believe you have a latent or active infection with Lyme that is causing your issues. It creates a dilemma since I am not an ID doc and don’t prescribe or have capacity to carefully monitor the long-term iv antibiotic therapy you are advocating and don’t think that it would work. You have undoubtedly read about the complications that can arise with long term antibiotics but having taken the position that all of your issues are due solely to a latent Lyme complication, you have a focused goal to try it. It is possible you will find a provider willing to prescribe iv abx and, if so, I hope that goes well for you. Perhaps I fit into your definition of a non-LLMD, although I have reviewed the literature and for many reasons, don’t believe there are evidence-based links for your illness to Lyme. The resources of the MS Clinic are always open to you and with perseverance we may yet solve some of the outstanding issues with MS. All the best to you and Laura.

I get it, I do. I would imagine most neurologists on this planet would recoil at the thought of having misdiagnosed a patient, particularly their most famous patient. But mistake Lyme disease for multiple sclerosis? That's a bridge too far and the reason I started writing this memoir, to lay out my case systematically and in enough detail so that there were no outstanding questions. And to point out all the inconsistencies and the flawed assumptions, to break down the reasons my treatments repeatedly failed to slow my presumed neurological disease. And to show the unmistakable, dramatic effect antibiotics have had on my symptoms.

But after reviewing all of that and still refusing to even acknowledge that Lyme disease could be in play despite the tsunami of evidence? Tens of thousands of words later, that evidence is utterly drenching. Other than the lack of a “positive” test, the accuracy of which has long been in doubt, everything about my case screams tickborne illness. We’re talking Janet Leigh in Psycho screams.

My email inbox pinged. It was a colleague of Mr. Connor, who acknowledged that John had received my message and was well aware of my concerns. And that he was having none of it. A disease from a tick? Borderline laughable. “Highly unlikely to be Lyme as I haven’t been outside since Thailand in 2008.”

But the UK has seen a steady rise in cases of Lyme disease, “with incidence rates highest in Scotland and southern counties of England” where London is located. Lyme disease is so prevalent in the region that the nonprofit Lyme Disease UK struggles to overcome the persistent myth that Lyme is not endemic in Great Britain. It has been, and for decades. A year before John “came down” with MS in 2008, he had been camping and rappelling with his son, presumably outside and presumably in the UK. Everything about his case screams nearly just as loudly as my case—LYME. It’s so loud it’s piercing. Is that why fingers are plugging the very ears that need to listen? What the hell is going on?

So, I found the hell out. Boy, did I ever.

Wild horses in East Sussex, UK


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