Reality Bites: Lyme Disease

I got my case of Lyme disease from a tick bite while working as a park ranger in the western foothills of the Sierra Nevada on June 14, 1998. We rangers are one-size-fits-all fixers of any problem you could imagine, and we get called upon to act in situations you might not associate with us. If we come upon a fire, we are expected to get out our shovels and start building line. If there’s a baby to be born and the woman isn’t making it to the hospital, we’ll deliver it, right where we are. And if someone commits a criminal act, it’s our job to make sure they don’t get away.

I was on patrol that afternoon when I heard a deputy sheriff on the radio, pursuing a suspect on foot in the canyon below me. He was inside my park, so I went down to the river to assist him. This sort of thing was common enough that I can’t remember what the particular guy we were looking for had done, but I recall the sting of the star thistles on my bare legs as I ran down from the road. I was wearing shorts because I’d been on boat patrol earlier that day and shorts were easier to swim in if you had to dive off the boat to get someone out of the water.

We lost our man. I dusted myself off and drove back to the ranger station, where I caught up on paperwork. The incident had been sufficiently anticlimactic that I never wrote a report on it. So it can be with pivotal things; they can come dressed in normalcy, like the Texas Schoolbook Depository or the spaghetti dinner I had with my friend and fellow ranger Kyle Pattee before he burned to death fighting the Shiprock Fire up in Idaho. They say he didn’t have his gloves on, so he couldn’t hold down his foil shelter when the fire overran his position. So it was with me, running into the weeds in that warm afternoon in those shorts with no insect repellent. They hadn’t told us about ticks and Lyme at our ranger academy. To this day, they still don’t.

The following morning, my day off, I slept in. Sometime after coffee I found a tick-small, brick red-doing a headstand with its mouthparts buried in my skin just below where my gunbelt had been. I carefully removed it with tweezers and put it in a plastic sandwich bag to take to my family doctor.

My physician didn’t see much point in testing the tick. Lyme was a rare disease in California, he said, and if by some wild chance the tick in the bag was carrying it, I was unlikely to get it. Expect some localized redness around the bite; ticks are dirty animals, he said. I followed his advice. When a classic Lyme rash appeared around bite, I didn’t worry; I’d never seen one before.

The first thing I noticed in the weeks that followed was a crushing fatigue that didn’t improve with rest. In August, I went to see another doctor-a cool young general practitioner in running shoes and a white lab coat. I told him about the tick bite, the rash, the fatigue. He sent me to get blood drawn.

“Good news,” he told me on a follow-up visit, “Your tests are all normal.” He felt my belly. “Your spleen’s enlarged, though.”

“What does that mean?”

“I’m not sure.” He finished examining me and washed his hands at the sink, then scribbled something on a prescription form.

“What’s that?” I asked.

“I want you to take Prozac.”

“Prozac? Wouldn’t I know it if I were depressed?” I responded. “I don’t feel sad-well, if I am, it’s only because I’m too tired to play with my children anymore.”

“You wouldn’t necessarily know you were depressed,” he replied, peering at me through his wire-rimmed glasses. “From what you’ve told me you’ve got a stressful job, and there are some forms of depression that are experienced only as fatigue.”

I left his office, feeling embarrassed.

I limped through the next year, working part-time. I had bouts of severe diarrhea, which came without warning and then disappeared just as quickly. Back to the running-shoe doctor; stool samples were run; no intestinal parasites were found, all normal. I ran out of sick leave. At 43, perhaps I was getting too old for ranger work, I thought. Then that September, one morning I woke up and couldn’t feel my hands.

Once, in Alaska, before the advent of GPS devices, a friend and I spent a day crawling over mossy logs in a dripping spruce forest, unable to discern where we were. The next morning the clouds lifted and we climbed a tree on a ridge, where we could shoot compass azimuths on a nearby peak. Nowadays people don’t get lost very much. Everything is made to make us more and more found, connected as we are by PDA, cell phone, and GPS. But as the Lyme got worse, my own body became a terra incognita, full of signs and features I didn’t recognize.

The numbness and pins and needles in my hands soon progressed to my feet. Then there were shooting and stabbing pains; the first time I had one, I tore my shoe off, thinking a spider had crawled into it. My vision grew blurry. I got motion sickness during car rides, a problem I had never known in my life. My ears had begun to ring, a piercing whine.

The beginning of the end of my ranger career came one day at the pistol range. We were required to qualify with our weapons four times a year. We stood facing our row of human silhouette targets; the rangemaster called out, “Gun!” The rangers on either side of me drew and fired, and I was left struggling to get my gun out. The loss of feeling in my right hand made it impossible for me to operate the releases on my holster. I could not be on duty in that condition.

I saw a rheumatologist who sent me to a neurologist, who did a spinal tap. I had elevated protein in my spinal fluid. The neurologist stuck electrodes on my arms and legs through which he delivered electric shocks to test my nerves. This test revealed nerve damage, he said, and coupled with the elevated protein in my spinal fluid seemed to indicate that the protective sheaths of my nerves might be melting away. But the cause was unlikely to be Lyme, he said, because Lyme wasn’t found much in California. I would later find out that a county lab had been collecting ticks in the park where I had been bitten, and 4 to 11 percent of them had tested positive for Lyme.

Finally, in January of 2000 I went to see a prominent Lyme disease researcher.

“Why didn’t anybody see this?” he said, leafing through my thick patient file. “You’re a classic case. A park ranger-an occupation prone to tick-borne disease-known tick bite, subsequent rash, typical symptoms…”

He put me on oral antibiotics.

This is the point in a medical narrative where things ought to get better, but they got worse. Now I developed painful arthritis in my feet and hands. Later it would appear in my shoulders. One day, quite suddenly, my nose filled with the most horrible odor-like the smell of death mixed with noxious chemicals. The odor went away only to return again, over and over. Sometimes I tasted it in my mouth.

Two years after my tick bite I began feeling decidedly drunk, but this was a far more unpleasant intoxication than an alcohol buzz. I was having trouble with minor computations, balancing a checkbook, the tip on a restaurant bill. I forgot the words for things, lost my parked car, got lost while driving in familiar places. The identities of people who apparently knew me pretty well were becoming obscure to me. Writing a note to my wife or something in my diary, I would write the second letter of a word before the first. Why not the third? It was always the second. The brain is a labyrinthine organism, its complexity most apparent when the flawless functioning we take for granted begins to unravel.

In year three, the specialist called for a small tube to be inserted through my chest into the large veins at the portal to my heart. It was a handy little thing; I could coil up the tube and tape it to my chest under my clothing. I had been a trained as a ranger medic and knew how to prepare and infuse intravenous drugs, so I didn’t need to stay close to a refrigerated drug supply or a nurse. On a couple of occasions I even stayed overnight in the forest-what joy there was in that!-hanging my bag of intravenous antibiotics from a tree branch as I infused myself, as we might have done on a backcountry rescue. But I was retired on disability now, and it was clear I would never rescue people again. The fatigue was beyond measure, yet I couldn’t sleep. I wanted, more than anything, to sleep. I thought about shooting myself.

After eight months of IV treatment, I had a week when I could think, reason, remember names and words. Although I would soon descend back into what my Lyme doctors refer to as “brain fog,” it was like that time in Alaska where I had climbed that little spruce and shot my azimuths. Now I had something to navigate by. It appeared that the equipment was largely intact; it was just that the capacity to use it had been confiscated for an indefinite period. Maybe I could win it back.

I am still on antibiotics. There are doctors in this country who do not believe in such treatment, a position most insurers and HMOs are more than happy to agree with, since prolonged treatment isn’t cheap.

Whatever the opinions about chronic Lyme, when I am being treated with antibiotics, my arthritis and the swelling in my joints gets better; I can write, think, play with my children, and to a more limited extent, enjoy life as I did before. So far, when I go off them I suffer a rapid return of painful arthritis, numbness and nerve pain, memory loss, blurred vision, sleeplessness, ringing in the ears, and the rest of it. Scientists have found that Lyme’s spiral bacteria-spirochetes-make a home in your tissues. More sinister yet, they kill critical immune cells, hijacking their genetic material to evade the body’s defenses. Pathologists have found Lyme spirochetes in the brains of patients who received antibiotics and later died.

I’ve thought a lot about how things might have been different-long pants, bug repellent, and a tick check that evening when I got home from work. The bottle of doxycycline pills that most experts agree is capable of preventing Lyme if given immediately after the bite costs $16 at the government’s discount. A recent tally of costs of my illness totals over $200,000. Then there’s the question of why it took five doctors to get diagnosed. If there is one thing Lyme has taught me, it is how potent a longstanding belief-for example, excessive faith in laboratory tests that are known to be less than perfect, or a notion that Lyme is not a problem in a given region-can be in the face of the evidence at hand. The lesson for me is clear: In this, like everything else in the outdoors, we must learn to watch out for our own safety. At least for now.