What was causing Elizabeth DeVita Raeburn's strange symptoms? Doctors were stumped—so she took charge and found an answer.

Credit: Sue Tallon

Sue TallonOne morning when I was in my 20s, I woke up to the familiar sound of a banging radiator and the unfamiliar sensation of spinning. A half beat after I opened my eyes, I felt a strong swell of nausea. To my single 25-year-old mind, this was the stuff of nightmares. I dragged myself to a drugstore and bought a pregnancy test. Negative. So I resigned myself to waiting it out.

It proved to be a long wait.

Weeks later, I developed abdominal pain. Next, a urinary tract infection that had no regard for antibiotics. My doctor ran tests, looking for red flags—an elevated white blood cell count, a thyroid hormone out of whack, something. But they were all normal. Stumped, he referred me to specialists: a urologist, a gynecologist, a gastroenterologist. I had an endoscopy, a barium X-ray, a colonoscopy. And the theories flew: ulcers, endometriosis, lupus. They kept me up late at night, wondering if the most recent theory would be the diagnostic version of Mr. Right—but without the joy that implies. I just wanted an explanation.

My doctors prescribed even without a diagnosis. I took a drug to speed gastric emptying, prescription antacids, even a drug that put me in faux menopause. Nothing worked. And the side effects were awful. I had hot flashes. My stomach was raw from antibiotics.

My father, an oncologist with a policy of not treating his family, watched anxiously from the sidelines. "Stop seeing specialists," he advised. "They only think about their 10 inches of the body." So I stopped seeing doctors. I still had my symptoms, but I made sure I was always near a bathroom. In that way, I achieved semi-normalcy.

Then one day, five years after that first wave of nausea, sitting in a pizzeria sipping water and eating soup, the smell of pizza hit me full force. I wondered what it would be like to eat without feeling sick. A wave of anger and determination hit me. It was time to resume the search for a diagnosis.

I thought hard about what I wanted in my next doctor the way some people envision their ideal spouse. I wanted to find an internist, someone who looks at the bigger picture. I found one who had studied acupuncture in China; he spent an hour asking me questions. One was whether Id traveled before I got sick, something other doctors had asked me, and to which Id always answered no. Its a flow chart–like question meant to address the issue of parasites. If you havent traveled, they check negative and move toward another explanation. "You know," he said, "I think we ought to test for parasites, anyway." With the way people travel these days, he said, they can bring parasites to us.

One week, a blood test, and a stool sample later, I had an answer: Entamoeba histolytica, a parasite common in undeveloped countries with contaminated water. It can be transmitted by an infected person who has skipped washing his hands after going to the bathroom, then handled your food. Two weeks of the right antibiotics and the symptoms were gone.
Now, like someone whos made a bad choice in spouses on the first go-round, I am exceedingly careful about whose hands I put myself in. I cant fix a medical system reliant on tests. But I can pick doctors who listen, ones who actually think—and not just test—their way to an explanation.