Mystery Disease

Ill and No Answers

Feverish and half-lucid, I lay on the exam room table, surrounded by bloody gauze and the discarded needles from five failed spinal taps. Monitors beeped quietly in the background and the quiet emptiness of that moment lasted for what seemed both only a few minutes and forever. Some days, it feels like that moment never ended as the memory remains quite vivid.

One June, when I was about 30, I had a headache that wouldn’t go away. Within a few days, the headache was followed by what I thought was the flu. Fast forward another few days, and I was so fatigued that I couldn’t walk up a flight of steps.

I’d already been to my physician twice (to no avail), so when I began to spike a temperature Friday evening, my next stop was the emergency room. After seven hours of poking, prodding, and hydration, I was discharged, prescribed some Tylenol for pain, and told to rest. Within 48 hours I boomeranged right back to the hospital with a seriously elevated temperature—only this time, the ER doc recognized that rest, saline, and Tylenol wouldn’t cut it.

In relatively short order, I found myself relocated to a solitary room at the ER pending transfer to a more secure negative-pressure isolation room. It was in the ER room, immediately following the five botched spinal tap attempts, where I found myself alone and contemplating my very uncertain future.

Today, I’d love to tell you a tale of modern medical success featuring a brilliant physician that just wouldn’t quit and a treatment delivered just in the nick of time that saved the patient from months of pain and discomfort. But this is not that story.

The doctors never diagnosed my disease. And, after five days in the airlock room and undergoing treatment using powerful intravenous medicine for every pathogen they could think of, I simply didn’t die. When they discharged me, my papers said, “Undiagnosed Infection.”

The Missing Link: A New Perspective

It took me over a year after my discharge to get healthy again. This meant regaining the ability to speak full sentences (the disease short-circuited some of my brain), gradually losing the Bell’s Palsy I’d developed, and restoring my strength. Eventually, life returned to normal for me—until the summer of 2011, when the symptoms of headache, fever, and fatigue recurred unexpectedly. Given my prior experience, I knew I had a very narrow runway before I was back in another isolation room.

I refused to ride the same merry-go-round again. This time, I purposefully sought out a brilliant diagnostician to provide me with the insight that others had lacked… and he did.

With my mystery illness, the symptoms and clues were all there; they just required the proper perspective to put them all together. In this case, the culprit was a tick-borne illness: ehrlichiosis. Ehrlichiosis is distinctly different from Lyme disease. My diagnosing physician suspects (but cannot prove) that I had been infected twice, and that it was the culprit causing my prior hospitalization.

(As a public health announcement, I want to share that there are at least 16 different tick-borne illnesses, four of which have been discovered since 2013. The Centers for Disease Control and Prevention’s website has more information about these diseases.)

Lessons Learned

In life and business, as in medicine, we often operate without key facts and suffer from a lack of perspective. Still, even with realizing that, we love to gloat over our wins, talking about our “great decisions” and how we overcame tremendous odds to succeed. However, when we lose, we point the finger in a thousand different directions.

I learned many lessons from my experience with a tick-borne illness. One was that I cannot expect my experiences and perspective to adequately serve me in all situations. (I also can’t blindly expect others’ experiences and perspectives to serve me, even when those individuals come bearing impressive credentials.) It’s my responsibility to seek out experts with perspectives radically different from my own, those who will bring something different to the table.

The second lesson I learned was that making a good decision or the “right” decision is not the same as making the best decision. We’ve all made the “right” call at some point in our lives yet still lost. My health battle made me realize that we often fail to expand our choices, leaving us with options that are “good” or “right” instead of “best.”

I still occasionally think about my brush with ehrlichiosis, and it reminds me that I must always strive to expand my perspective, surround myself with those who possess a different perspective and increase my available choices. Only then, can I make the best possible decisions and avoid spending time in yet another airlocked environment.

Thank you for reading about my journey. Thursday, February 28, 2019, is International Rare Disease Day. I invite you to share some love with the hashtag #RareDiseaseDay or visit rarediseaseday.org to get more involved.