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Chapter 16: Never Ever

Updated: May 24

Never ever. There aren’t enough evers. Not in a million years. Ice ages could come and go, civilizations could be born and extinguished. Less likely than breaking park ranger Roy Sullivan’s record of getting struck by lightning seven times, winning a billion dollars in the Powerball—twice, or avoiding seeing a mattress sale over Memorial Day weekend.

I never should have discovered my multiple sclerosis misdiagnosis. Never ever.

To understand just how incomprehensibly fortunate I was means suspending all knowledge of how odds work. Because everything had to line up just so. Picture setting up the most epic of domino chains, one that runs from New York City to Los Angeles, only it must pass through Kingman, AZ, home of Spanky, an 11-year-old corgi renown for disturbing the dimpled rectangular tiles. One errant tail wag and—eiweiweiweiweiw—game over.

For starters, I had to journal, in detail, my travels and symptoms leading up to my MS diagnosis. And bolster that record with photographic evidence. And then write down all my symptoms in detail and, incredibly, save them for 17 years, transferring them from a half dozen computers to just as many operating systems.

I needed to fail every disease modifying therapy I tried for MS while publicly documenting my efforts. I needed to crater on some drugs, temporarily wildly succeed on another treatment, and enjoy semi stability on other meds. I needed to blog about my travails with the disease and its myriad symptoms and relapses. I needed the world to hear about my story in print, videos, and podcasts.

The spate of UTIs, first in 2009 and then in 2021, absolutely had to happen. My health insurer repeatedly denying the most powerful FDA-approved drug had to happen. And then the pandemic, the failed attempts at self catheterization, my psychosis, the pleading letter to my doctors, and finally, that chance article about Lyme disease by Ross Douthat in The New York Times all absolutely had to happen.

With one overreaction to “Who’s a good boy?!,” a single Spanky could have upended everything—and instead I would still be diagnosed with MS and today resignedly looking into full-time at-home care or assisted living facilities. I was thisclose.

The Medical Record Review

What had I been missing? What were the doctors missing? What were the specialists missing? Could the presence of my Lyme disease have been detected and treated earlier? I started researching my medical history during my 17 years of living with an MS diagnosis to find shards of evidence of an infection, evidence that might be too easily dismissed as static in one’s journey with multiple sclerosis.

I’ve already discussed in detail the regrettable missed symptoms early on (or myriad coincidences, say skeptics) but as my disease progressed, there were other signs. Unfortunately, in a cacophonous roomful of symptoms—hands raised, all shouting, “Me, me, me!”—they were routinely dismissed as “just MS” or “them's the breaks.”

I started my sleuthing by focusing on my unusual sudden cratering in September of 2009 after I initiated a new medication. That month I began taking a beta interferon, Rebif, a common injectable first-line therapy for MS. Instead of a daily shot like the Copaxone I had been taking—more than 1,000 injections in my arms, legs, and stomach—I injected this drug three times a week with a known side effect profile: flu-like symptoms. So I expected I wouldn’t feel bangers. But going from being able to walk a quarter mile without a cane to struggling to cross my living room with a walker in three months made zero sense.

Now it makes total sense. In certain cases of Lyme arthritis, this drug could be beneficial, as one study found it “dramatically reduced arthritis” in mice infected with Borrelia burgdorferi. But generally, this NIH study found that “in most other bacterial infections, particularly during intracellular bacterial infections, type I IFN is detrimental to the host.” Instead of slowing my non-existent MS, Rebif was nothing more than gasoline and a match for my Lyme disease.

And those crushing bladder issues and skyrocketing disability from that time? As well as in 2021 when everything came to a head? Textbook Lyme encephalomyelitis. While that type of Lyme profoundly affects the bladder in only 25% of studied encephalomyelitis cases, when it does, the results can be debilitating, causing “one of the most disabling complications of Lyme disease.” (Neurogenic Bladder in Lyme Disease ( Yay, another short straw.

Without those suspected UTIs, though, I never would have taken antibiotics. Without those antibiotics, I wouldn’t have discovered unexpected gains. Without those unexpected gains, I never would have eventually put two and two together.

The reason my 2010 hematopoietic stem cell transplant failed also was wholly predictable. In fact, a prominent MS specialist, Dr. Brandon Beaber, called out HSCT in his “MS=Lyme Disease?” video, as he discusses the two diseases with a compelling and convincing argument that, no, they are not the same. With HSCT halting or even reversing disability in the majority of MS patients, he asks if this success would be seen with an infectious disease, a level of success where “a patient gets better and stays better? That seems highly improbable.”

He was dead right. My gains soared in the first months after the transplant, so much so that I went from struggling to walk 100 meters unaided to being able to walk nearly a quarter mile cane free. Indeed, I got so excited with my progress that I tried to show off in the kitchen, setting aside my walker and, apparently, common sense. I fell and broke my leg. All the while I documented my successes in pointed detail for members of ActiveMSers, my MS nonprofit. The first time in over a year that I drove, went grocery shopping, made dinner standing up, played Xbox, walked nonstop for an hour, and swapped out my walker for a cane.

I now know that those gains, though, didn’t spawn from the transplant. In the three months prior, I had been on doxycycline, which helped me to qualify for the trial. But afterward? To ward off potentially deadly infections due to my obliterated immune system, I took Bactrim, an antibiotic often used to combat Lyme disease. For a full year. In the first six months, the gains were breathtaking, which continued apace through year one. Year two and three saw modest improvements. Indeed, during that time my disability improvement bested the other 23 in my NIH-supported study. There were no noticeable setbacks.

Well, there was one noticeable setback, at least behind the closed doors of our bedroom. A certain member of my anatomy was not reliably attentive, and Laura sorta noticed. HSCT can knock down testosterone and libido in the early months after transplantation, so I wasn’t overly alarmed. But this was happening 15 months post-transplant. Curious. The endocrinologist prescribed Viagra, preferring not to start hormone therapy.

That may have been a fateful decision.

Looking back, it likely was the first sign B. burgdorferi had resurfaced, three months after I stopped taking antibiotics. Low testosterone levels are associated with increased inflammation and research has found that men with lower levels of the hormone tend to have more severe courses of Lyme disease. Not only was I drawing short straws, but I was also apparently drawing flaccid ones. More than two years (and refills of Viagra) later, the Return of the Spirochetes came to a theater near me. It premiered January of 2014. I was sitting on the couch, enjoying some coffee and flipping through the anemic sports page of The Albuquerque Journal, when I noticed a strange sensation. My right foot felt off. Numb, like before. I shook it, walked on it, and waited for the sensation to return. It never did. My Lyme disease reprieve—after nearly 15 straight months of antibiotics—lasted exactly 2 years and 9 months. A mere mirage. By the end of the clinical trial, I frustratingly had returned nearly to baseline, dropping the hard-earned 2.5 EDSS points I had gained to fall back to a 5.5 (significant disability, able to walk 100 meters unaided).

After that aggressive treatment thoroughly failed over the span of five years, I briefly dabbled with the oral drug Aubagio before moving on to infusions, taking Rituxan and its sister drug Ocrevus. Those two along with biosimilar Kesimpta are popular and effective treatments for multiple sclerosis. From 2017 to 2020 I was on the monoclonal antibody infusions, and while I continued to deteriorate, it wasn’t by any means a cliff dive. Again, there’s a reason. As there is an arthritic component of Lyme disease, that would help explain why drugs that treat forms of arthritis—rituximab, for instance—might provide a level of relief to someone who is infected with Borrelia burgdorferi. I had expected Ocrevus to be the last MS DMT I’d ever take. Without other clear options, it was easy to stick with the lone FDA-approved treatment for progressive MS, paid for and approved by insurance.

That all changed when COVID hit. Those particular immune-suppressing drugs severely blunt the effectiveness of vaccines long term, spurring me and my neurologist to pursue another treatment. We settled on Mavenclad (cladribine), a powerful oral therapy and a form of chemotherapy that targets certain types of white blood cells. I appeared to have had success with others forms of chemo during my stem cell transplant, so the option seemed logical. Unlike Ocrevus, it only temporarily suppresses the immune system… but when it does, it’s a hammer. I started taking it in July of 2021. The percolating UTIs that had pestered me for the past year and a half started arriving more frequently. As literature on the drug warned, my already weakened immune system predictably hit its Mavenclad nadir three-months later—absolute B-cells dipped to 15 (optimal range: 87-690), absolute lymphocytes 0.3 (optimal range: 0.7 - 3.1 x10E3/uL)— the same month my UTIs and psychosis roared like a Cat 5 hurricane.

An Unlikely Savior

That was no coincidence. With no soldiers left to fight the Lyme infection, the disease went on a Grand Theft Auto-esque rampage, kneecapping me at every turn. But as it was pillaging my health, those invading spirochetes unintentionally opened a spigot that, in an unfathomable twist, inadvertently revealed their presence. While making me literally insane, the psychosis brought on by the flexible spirally twisted bacteria also awakened a most-unexpected Life Alert: an unused corner of my brain. For nearly two months it was aflame, connecting myriad—seemingly random—dots my normal brain had no right connecting. My mind was solving problems, vexing problems that I had been working on unsuccessfully for years, overnight. That’s plumb crazy, right?

Right. Spirochetes are legendary when it comes to fueling psychosis, chiefly the spirochetes that cause syphilis. But they also have been fingered as a source of enlightenment in some of history’s most acclaimed luminaries. “Artistic genius and syphilis are strange but habitual bedfellows,” as Vincent van Gogh, James Joyce, Beethoven, Francisco Goya, Oscar Wilde, Édouard Manet, and others have all been linked to the sexually transmitted infection. I couldn’t suddenly compose legendary symphonies or paint masterpieces—my PT sister Karen is the brilliant artist of the family—but something was definitely up.

Side-by-side comparison of my artwork vs. Karen's artwork.

For two and a half weeks after I discovered that I had Lyme disease, that diseased brain of mine whirred at 9,000 rpm to answer swirling questions surrounding my new diagnosis. How did this happen? How could this happen? And what the hell could I do about it? I started seeing connections everywhere with uncanny clarity—think A Beautiful Mind , only instead of starring Russell Crowe, starring a goof in a wheelchair with similarly droopy eyes. Some of those early connections were false starts, dead-end leads, before my mind leapfrogged to answers that could hold up to tight scrutiny.

Alas, before I could ask my brain the more pressing questions of the world (you know, the basics: how to end hunger, secure peace in the Middle East, or find out what really happened to Tony at the end of The Sopranos), that spigot was permanently sealed shut like Deepwater Horizon mere days after starting doxycycline. But not before it gave me a roadmap—a detailed roadmap into Lyme disease and how MS plays a pivotal role in hindering its diagnosis—that has turned into this memoir, Sit Down Before Reading.

Tick Tick-Tock

With three months of doxycycline and a full year of Bactrim failing to completely rid my body of Borrelia burgdorferi after my 2010 stem cell transplant, it was clear that a short course of antibiotics was not going to get me bounding out of my wheelchair to join the Pickleball pro tour. More concerning: stopping antibiotics at this critical juncture could spell the return of my psychosis. My primary care doc agreed, extending my doxycycline prescription while we tracked down the most appropriate medical team to care for me and my 17 years of undiagnosed Lyme disease.

Dave playing pickleball in a wheelchair
My youngest sister's favorite photo of me.

He immediately reached out to his extensive network of infectious disease doctors—specialists, appropriately, in “infectious” diseases, of which Lyme is a big one, maybe the biggest one.

And reached out.

And reached out.

And reached out.

Without a CDC-approved positive blood test for Lyme disease, a grand total of zero infectious disease doctors in the state of New Mexico were willing to see me, much less treat me. All my PCP’s calls and follow-up emails went unanswered, a symphony of silent crickets.

On my personal team, my PCP was doing everything he could while my neurologist was in the wind. That left my urologist, who earlier had been eager to find that zebra. Since there is a major urological component to my form of Lyme disease, I figured she might be willing to test her professional chops on my unique case. I figured wrong.

“Hi Dave, I am sorry to here (sic) that you are having trouble connecting with the experts in Lyme disease. However, I am also glad to hear that you are improving. I can follow your UTI problem. However, I am not interested in Lyme disease. If you are having UTI symptoms, please schedule an appointment.”

My urologist must be well versed with the hidden asterisk in the Hippocratic Oath, the “promise to punt” on any infection that relates to Lyme disease. And, um, shocker, I’m not interested in spirochetes invading my bladder either, but I kinda have to deal with it.

I never ever should have discovered that I had Lyme disease. But the more I pursued getting treatment for the disease, a new never-ever surfaced.

Unless there is an overwhelmingly compelling reason, someone diagnosed with multiple sclerosis should never ever get tested for Lyme disease, much less get treated without a positive confirming two-tiered approved test. Never ever.

That’s the official stance of the infectious disease community, many medical practitioners, and virtually all health insurers. Worldwide. Like countless undiagnosed sufferers of Lyme disease before me, I had walked straight into a plate-glass nightmare scenario.

No one was willing to treat me.


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