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the book

Sit Down Before Reading by Dave Bexfield is a memoir unfolding in real time. New chapters and/or audio files are released on Wednesdays when available. Due to research demands, production requirements, and essential husband duties too-often shirked, installments may be delayed. Readers can expect the finished book to have four parts. Or maybe five.

cairns on a log at the Pacific Northwest coast

PART I

Preface

The story I'm going to tell you will challenge you to reexamine life with a progressive disease, send shockwaves throughout the disabled community, rewrite the rulebook of healthcare and potentially change your entire future. That's all.

2 min read

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CHAPTER 1

Sit Down Before Reading

That’s the exact subject line of the email I sent my medical team. A message that would ultimately save my life. You’ll better understand after you read this. And I apologize in advance because you should probably take that advice, too.

4 min read

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CHAPTER 2

100 Meters

If I was going to have a chance to avoid entering a nursing home in my early 40s, all I had to do was walk 100 meters. That's all. Easy peasy lemon squeezy.

I was so screwed.

7 min read

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CHAPTER 3

Operation Overturn

One lone, gimped-up disabled guy named Dave wouldn’t dare go toe-to-toe with a $2 billion organization, would he? You mean the guy so motivated that he wallpapered his garage with $198,000 of denied medical expenses? Uh-oh.

7 min read

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CHAPTER 4

The Widow Maker

Water buffaloes are among the most dangerous of all animals. There’s a reason they have the cheery nicknames “black death” and “widow maker.” We jump forward, to the summer of 2020. When things were again feeling off. Really off. The water buffalo was snorting.

8 min read

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CHAPTER 5

Pit of Despair

To my untrained eye, the catheter I was about to insert looked to be five, six feet, something that could lasso a horse or hogtie a pair of criminals. My lesson in self catheterization, though, paled in comparison to planning my own funeral.

7 min read

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CHAPTER 6

Breaking Brain

My white-hot brain had developed an idea to capitalize on Albuquerque’s connection to the hit TV franchise Breaking Bad, one so deep and rich that it would remake the city into an international tourist destination. But something was off. Way off.

9 min read

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CHAPTER 7

Final Hail Mary

My body was collapsing. My brain was splintering. Laura and I were doing whatever we could do to keep it together—twine, duct tape, a tube of three-year-old nearly dried-up Krazy glue—while we sought out answers. This was our final Hail Mary.

6 min read

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CHAPTER 8

Checkmate

I didn’t know what to do. Which direction to turn. Where to hide. I considered taking shelter in my memories, assembling, sorting, and then organizing them into a majestic quilt of my 53 years in this world. But first I needed to play chess. With the Devil.

8 min read

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CHAPTER 9

Fate, Meet Destiny

There was one sentence in my Hail Mary letter to my doctors that unlocked the mystery that had been plaguing me for the past 17 years. Finally, an answer, as this fateful tale meets its unbelievable destiny to conclude Part I of Sit Down Before Reading

6 min read

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PART II

Introduction

As I waded into the horrifying detritus of other lives crushed by my newly discovered disease, I unbelievably uncovered evidence of what could be one of the greatest failures in the history of modern medicine. And it affects everyone diagnosed with MS.

5 min read

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CHAPTER 10

Zebra Found

I finished 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 was 100% confident in this diagnosis—I clicked send.

9 min read

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CHAPTER 11

Crazy Not Crazy

I was getting better at lying to my wife. And figuring out conspiracy theories, a new specialty of mine. But also, I realized that I needed to get on treatment for my newly discovered disease. Just one minor problem: would any of my doctors believe me?

7 min read

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CHAPTER 12

Roll of the Die

The reported odds of being misdiagnosed with multiple sclerosis are frightfully high—1 in 6, the roll of a single die. Was I feeling lucky? Because the consequences of waking up your soundly sleeping wife at 1:30 a.m. for a false alarm could be calamitous.

10 min read

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CHAPTER 13

Joyrified

Question marks swirled around me like a late summer dust devil as I entered my first week of treatment. Would I see improvements? Could I lift that 20-lb. weight? Would my UTIs stop? And how would I tell my friends about my diagnosis?

7 min read

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CHAPTER 14

A Nobel Act

One must be true. Either I win a Nobel prize for discovering that a common antibiotic effectively treats MS … or I win a Nobel for exposing a catastrophic flaw in the diagnosing of Lyme disease that will result in scores of MSers getting undiagnosed.

8 min read

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CHAPTER 15

Jenga

Tests form the backbone of eliminating Lyme disease from consideration when diagnosing MS. The tower of new coincidences in my case kept getting stacked atop the already swaying Jenga tower of coincidences built up over the last 17 years.

10 min read

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CHAPTER 16

Never Ever

I never should have discovered my multiple sclerosis misdiagnosis. To understand just how incomprehensibly fortunate I was means suspending all knowledge of how odds work. Because everything had to line up just so. Unbelievably, it did.

10 min read

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CHAPTER 17

Ipso Facto

When it comes to cases of multiple sclerosis, the unofficial official policy, worldwide, is straightforward: no routine testing for Lyme disease and absolutely no treatment without a positive confirming two-tiered approved test. So says science, ipso facto.

12 min read

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CHAPTER 18

Taking a Stand

The best possibility for me to reverse my myriad disabilities brought on my Lyme encephalomyelitis—to have a fighting chance to be able to put one foot in front of another and walk again—means IV antibiotics, universally deemed “medically necessary.”

11 min read

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CHAPTER 19

The Writing is on the Wall

The writing is on the wall, and it couldn’t be any clearer. Yes, I am sure-sure that I have Lyme disease—despite being diagnosed 17 years ago with “clinically definite” multiple sclerosis. And yes, the gains after taking antibiotics are real. Really, really real.

6 min read

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CHAPTER 20

Clear Eyes, Open Heart

I was struggling to keep lofty expectations in check. I wanted to soar skyward, lift above the clouds. But after months of failing to get appropriate treatment for my Lyme disease, it was hard not to get demoralized. Then an unusual opportunity presented itself.

8 min read

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CHAPTER 21

An Improbable Proposal

Desperate times called for desperate measures. Despite trying for months to find a doctor to treat my Lyme disease, all outreach had been rebuffed. I had to let every arrow fly and think outside the box, outside the state, and outside the realm of probability.

9 min read

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CHAPTER 22

Iceberg Right Ahead

If traditional testing couldn’t detect my neurological form of Lyme disease, it wouldn’t be able to detect anyone else’s either. An unimaginable disaster loomed; I had to warn the world’s leading researchers in multiple sclerosis and Lyme disease.

10 min read

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NOTICE

Author's Note

October 23 marks one year since I made the life-altering discovery that I have Lyme disease, not MS. Before SDBR steams on with abandon into pivotal Part III and its promised groundbreaking revelations, an important note from the author.

4 min read

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PART III

Introduction

The evidence is stark, shattering, overwhelming. Hundreds of thousands of people infected with Lyme disease are being misdiagnosed with MS worldwide, the result of perfect storms colliding. I make sense of it all: how it happened, who's affected, and what's next.

6 min read

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CHAPTER 23

Textbook

Meredith was diagnosed with a “textbook” case of multiple sclerosis. So was Gary. So was Daniel. Gregory was crowned with textbook neuropathy. Good thing none had Lyme disease. But shockingly, Emma did. And her case? Anything but textbook.

10 min read

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CHAPTER 24

The Terminator

For potentially misdiagnosed patients, doctors think they know and understand the predator they are fighting. They don’t. 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.

11 min read

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CHAPTER 25

The Response

Most neurologists on this planet would recoil at the thought of having misdiagnosed a patient. But mistake Lyme disease for multiple sclerosis? That’s a bridge too far, not only for physicians, but ironically for patients potentially living with a misdiagnosis.

10 min read

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CHAPTER 26

The Moronic Wars

There are countless examples of me acting as a moron, so when I see amateurs—rank amateurs—trying to edge onto my turf, it irks me. IRKS in all caps. Enter into evidence the most moronic of wars that don’t involve swords or firearms: the so-called Lyme Wars.

11 min read

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CHAPTER 27

Fathomable

Unless you are in a hotspot for blacklegged ticks and you get a bullseye rash and experience symptoms within 30 days, a negative Lyme test is negative… and a “positive” Lyme test is an error. So say the experts. But could the science be wrong? Unfathomable.

11 min read

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CHAPTER 28

Hidden in Plain Sight

For decades researchers have struggled to conclusively prove that a latitude gradient exists when it comes to the prevalence of MS—the farther from the equator, the greater the risk of developing the disease. If only they had enlisted the assistance of a 5th grader.

13 min read

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CHAPTER 29

Fail Better

In medicine, barring an outright cure, researchers ultimately will face failure. If scientists keep trying and fail a little less with each attempt, that’s progress. But what if the answer lies not tucked away in the incremental successes, but buried deeply within those failures?

11 min read

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CHAPTER 30

Denial of Care

Chronic illness can overrun the strongest of bulwarks, dooming the tightest of relationships—and the waves were breaching our fortifications. Survival was no longer a given. Desperate times called for equally desperate measures.

13 min read

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CHAPTER 31

Math

To get to the bottom of at least one of my pressing issues—this global Lyme disease kerfuffle—it required, of all things, analyzing numbers… and doing math. But one errant number and my 30% MS misdiagnosis hypothesis collapses.

11 min read

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CHAPTER 32

Gathering Clouds

The groundbreaking speech in Miami had every potential to change the course of multiple sclerosis … if only a single researcher in the decades following had managed to put the puzzle pieces together. But fate interceded, irrevocably changing the course of history.

13 min read

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CHAPTER 33

Swirling Winds

For researchers studying MS, they’ve unwittingly fallen into a trap of their own making. The pressure to make a landmark discovery, the insatiable verve to grab that brass ring, blinded them to the possibility that they could be looking at two different diseases.

13 min read

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CHAPTER 34

A Perfect Storm

Everything that could go wrong went wrong. Safeguards put into place to confirm research catastrophically failed. Faulty research was then elevated into canon and crowned settled science. History, tragically embodying the cliché, has repeated itself.

13 min read

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CHAPTER 35

Red Flags

Traditionally, red flags warn of danger. When it comes to Lyme disease and misdiagnosis, readers of this real-time memoir have been extrapolating red flags from its pages for the past year. Some hit you gradually, while others present with far more urgency.

19 min read

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CHAPTER 36

The Bexfield Twist

Did a health advocate with zero formal medical education just make the most monumental discovery in the history of modern medicine? Part III concludes with a series of unbelievable twists.

60+ min read

fall 2023
Part I
Part II
Part III
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