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Letter to the editor

It wasn't Lyme disease; or was it? A harrowing medical mystery

Doctors said no, you don't have Lyme disease. Overwhelming symptoms told another story.

By TRAVIS ATRIA Special to the Times
Published June 10, 2007

Snap.

The surgeon panics.

Despite the sedatives, my pulse pounds.

"Get him on the table, " the surgeon barks. His orders come in clipped, determined bursts.

The nurses scramble. Arms awkwardly cradle and lift me from the gurney onto the operating table.

This procedure should have been simple, but my IV port has been in so long - more than two years - that muscle and tissue have fused to it. I have delivered more than a thousand bags of medicine straight to my bloodstream through it and it no longer works.

Usually they just give it a good yank and it comes back out the way it went in - from the aortic valve, through the left jugular vein and, finally, out the small hole in my chest.

But my body will not release it.

Snap.

Half of the IV tube dangles in the surgeon's hand, the other half still embedded in my body. The surgeon's fear is that it will travel up my vein and get lodged in my heart.

He digs his thumb into my flesh. I can feel the pressure of his hand through the local anesthetic.

"I think I've got it, " he says. He has pinned down the tube so that it cannot move inside me. The only thing staving off possible death is a surgeon's thumb.

All this, just when I was starting to feel better.

* * *

I've been sick for nearly a decade.

It started in 1995. One day when I was 13, I left school covered in hives - arms, legs, nostrils, tongue, throat, everywhere. A few months later, a mysterious fever struck one afternoon and lifted by nighttime. Doctors didn't have enough evidence to make a diagnosis and I forgot about both episodes. But those were warning shots, the first volleys in a vicious war.

I remember the moment everything changed. Sitting on the couch after school, about a year after the hives, my brain began a process that would become sickeningly familiar. A panic attack. It started with a thought that, to a healthy mind, wouldn't make any sense: God is going to kill you. But to my brain, festering with disease and full of Catholic schooling, the thought became reality.

Soon I was the only eighth-grader planning his funeral. The scene played over and over again, unrelenting, like a movie in my head - who would attend, what they would say, how they would feel afterward. I stopped laughing. I didn't smile for months. I went from a happy child, the family cut-up, to a brooding, morose, humorless teenager, solitary as a steeple, silent as a church.

High school was dark. For four years, it felt like someone was holding my head underwater. I was there but not really present.

Desperate, I saw 10 doctors, from ophthalmologists to psychologists to infectious disease specialists. None could explain the crushing anxiety, obsessive-compulsive behavior, spots in my vision or complete change in my personality.

I was the sickest perfectly healthy kid in school.

Slowly, I learned how to live with my sickness. I could smile and joke just enough to hide it from my friends.

My aunt, whose entire family contracted Lyme disease in Massachusetts in the late 80s, recognized the symptoms, but every time my mother or I mentioned the possibility to doctors, they sternly instructed us that the disease did not exist in Florida.

* * *

Toward the end of my senior year of high school, I took my aunt's advice and saw the only Lyme disease specialist in South Florida.

I sat in her waiting room, filling out a tedious questionnaire of medical history and symptoms. Anxiety? Check. Insomnia? Check. Trouble breathing? Check. Joint and muscle pain? Check. Hives? Check. Brain fog? Check. Depression? Check. The list went on and on.

The doctor took a few vials of blood and sent them to a lab in California for testing. I waited for weeks.

The relief was otherworldly. No one has ever been happier to hear he has a disease. I learned they even had a term for what happened to me: drastic personality change. Of course, back then it didn't seem so medical and stuffy. More terror than textbook.

But the diagnosis wasn't the end. Lyme disease regenerates every 30 days, and since those doctors and specialists didn't catch it for years, it had grown into a fearsome whale of a crisis.

I started oral antibiotics, doxycycline, in 2000. Other than the fact that the drug made me vomit and my skin photosensitive - standing in the sun for 15 minutes blistered my lips - I felt good.

I took the pills through college and graduated in 2003 feeling better than I could ever remember. I was done with the disease; it was not done with me.

Driving home from a celebratory night on Miami Beach after graduation with my brother and then-girlfriend, we crested a small hill on I-95. Panic ignited in my stomach, unprovoked. It spread through my body until I couldn't breathe. I clenched the wheel, every muscle tense. Terror instantly overtook laughter.

"I don't feel good, " my voice wavered. I yanked the car to the shoulder, unbuckled my seat belt and crawled in the back. "Drive me to the emergency room, " I commanded my brother. "Now."

We sat in the waiting room as I fought to stay conscious and that movie played yet again in my head - the funeral, who would come, what they would say. This is it, I thought: dead at 21.

Doctors found nothing wrong. Maybe an allergic reaction to something I had eaten - they pumped me full of Benadryl and sent me home at 7 a.m. We'd been in the hospital all night.

* * *

Three days later, I went back to my Lyme doctor and she ran a full blood test - $4, 000 out of pocket.

She sent me to have an MRI and a spectral scan of my brain. The report came back, "white matter lesions" on my brain, which are signs of multiple sclerosis and acute disseminating encephalomyelitis, but are also consistent with the diagnosis of Lyme disease.

At long last, I found the bug lived in my brain. Oral antibiotics are absorbed through the stomach, and only a small percentage of the drugs break the blood-brain barrier, which is a system of cells that prevents certain materials in the blood from entering the brain. Since the antibiotics needed to reach my brain, my doctor recommended a controversial treatment: intravenous antibiotics.

I rose before dawn July 7, 2003. No breakfast as per the surgeon's instructions. The drive to the hospital was still as a hurricane eye, my parents in the front seats, me in the back, gripped by nervous silence.

The procedure took 20 minutes at most - a quarter of an inch slit below my collarbone, and then a 30-inch long tube jammed through my jugular vein, into my aortic valve. The whole thing felt somewhere between awkward lovemaking and alien probing. A nurse wheeled me to the outpatient area where I had to wait a few hours as a precaution. That was the first time I felt it against my body, the cold plastic catheter tip dangling from 21 inches of tubing coming out of my chest.

I didn't feel human.

Everything had to be negotiated anew - how to put on a seat belt, how to take a shower, how to lie in bed. I couldn't look at myself in the mirror for weeks.

Throughout high school and college I could act normal enough to avoid the difficult questions, but finally there was the ugly, bloody truth, screaming from a hole in my chest: I am sick.

For two years, one month and nine days, I pumped antibiotics straight into my bloodstream. The whole process took about three hours, five days a week. I sank into a severe depression, partly from the heavy medication, partly from spending my afternoons hooked up to an IV pole.

I started taking antidepressants. Between them and the antibiotics, my head reeled with drugs. I felt dizzy and half alive every day, sleep the only dubious rescue.

One year passed and I had a terrible relapse. The depression deepened to the point where I stood alone in the kitchen one night after midnight, holding a knife. I was ready to hasten the death I had feared for so long. But some sane sliver of my mind held me back.

Still, I was terrified of myself. I slept with the lights on.

* * *

Another year passed and finally the symptoms eased to the point where I decided with my doctor that I was ready to have the catheter taken out. My troubles had slowly gone away. Everything I had read in the Lyme literature - that when the disease is no longer present, the symptoms, which may have seemed to be deep-seated, simply vanish - was shockingly true. For the first time in 10 years, I felt like myself.

And when the surgeon stopped that IV tube from snapping up into my heart, I took it as a sign that everything would finally be all right.

Recently I returned to an ear, nose and throat doctor I had seen long enough ago to not remember the details. "The last time I saw you was in 2000, " he said, looking at my chart. "I think you were going to get tested for Lyme.

"How did that turn out?"

Travis Atria, 25, recently finished work on his master's degree in mass communications. He lives in Gainesville.

FAST FACTS

Lyme disease

Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted through deer tick bites. It is most prevalent in the Northeast. According to the Centers for Disease Control and Prevention, Florida has had 40 to 80 cases a year since 2000, some of which cannot be attributed to out-of-state travel. Many Lyme sufferers think the number of cases is actually much higher, and that many cases go untreated because of doctors' belief that the illness can't be contracted in Florida.

Symptoms

Lyme disease can mimic many other diseases, which makes diagnosis difficult. Sometimes a bull's-eye rash, the most telltale symptom, appears several days after infection and can last from a few days to several weeks. However, not all people develop the rash, and it is common not to notice it.

Several days or weeks after a bite from an infected tick, you might experiences flu-like symptoms such as aches and pains in the muscles and joints, fever and profound fatigue.

Other possible symptoms include sleep disorders, memory problems, a drastic personality change, panic attacks, disorientation, hallucinations, impulsive violence, obsessive behavior, paranoia, schizophrenic-like states, eating disorders, fainting, dizziness, stroke, abnormal brain waves or seizures, difficulty in word finding, decreased concentration or extreme agitation.

If you are bitten

Nymph ticks are tiny - about the size of the "o" in the phrase "In God We Trust" stamped onto a dime. You might not ever see the tick, and you almost certainly won't feel its bite.

But early removal of the tick is extremely important because it takes more than 24 hours for a tick to transmit the Lyme bacteria. To remove a tick, use fine-tipped tweezers, grasp the tick as close as possible to the skin and slowly pull it straight out. After removal, apply only antiseptic or alcohol to the bite area. Save the tick and take it to your doctor.

If Lyme is caught early, six weeks of antibiotics will most likely kill it. But if it grows unchecked for months or years, the symptoms get stranger and more serious.

For more information, see www.cdc.gov and search "Lyme disease."

[Last modified June 9, 2007, 18:50:36]