A Suspect Diagnosis
It Just Didn't Feel Like an Infection

By Sandra G. Boodman
Washington Post Staff Writer
Tuesday, April 1, 2008

It was the middle of the night in May 2006 when Alison Raphael, camped out in her daughter's Manhattan sublet, realized she had a problem she could no longer ignore. The faint traces of blood she'd noticed in her urine earlier in the day had become a crimson stream, and the dull ache on the right side of her groin had intensified.

A consultant to UNICEF on a quick trip home from a posting in South Africa, Raphael decided to tough it out. After a sleepless night, she headed straight for the emergency room of a nearby hospital, forsaking the excursion in Central Park that she and her daughter had planned.

There, Raphael recalled, doctors took turns poking various spots on her abdomen, asking her "on a scale of 1 to 10 how much it hurt." They seemed disappointed, she said, when she kept responding "two." Several hours later, after the results of urine and blood tests came back, Raphael was discharged with a diagnosis of urinary tract infection and a prescription for the powerful antibiotic Cipro.

But as Raphael would learn several weeks later, the cause of her problem was not nearly so simple. To readers whose squeamishness trumps their interest in baffling or unusual illnesses: Consider yourselves warned.

Before her trip to New York, Raphael, now 62 and living in Takoma Park, had rarely been sick. There were two notable exceptions in the distant past. She had spent months battling giardia, a water-borne gastrointestinal illness. Along with her family, Raphael had become violently ill from water tainted with amoebas shortly after the family's arrival in Latin America, her husband's first assignment as a Foreign Service officer.

Water, Raphael would later learn, was implicated in her urinary problem, too.

As she left the ER, Raphael doubted she had a bladder infection, because she felt none of the hallmark burning or twinges. On the bus ride back to Washington, she felt steadily worse and realized she was too sick to endure a 23-hour flight back to Pretoria. She delayed her trip and consulted a doctor in Washington.

After considering her symptoms and learning that the bloody urine had cleared up, the doctor gave Raphael more Cipro to knock out any residual infection. Feeling better, she flew back to South Africa, where she consulted a urologist.

Because bloody urine can have ominous causes, including cancer, the doctor ordered more urine and blood tests. A CT scan revealed a uterine fibroid, a common benign tumor. A South African gynecologist suggested she undergo a complete hysterectomy in case the fibroid was causing the symptoms, advice Raphael and her Washington gynecologist rejected as unnecessary.

In June, the urologist called to report that standard blood and urine tests had found nothing suspicious. But less than an hour later, she called back. "Oh, my God," she told Raphael, "another urine test just came back and you have schistosomiasis. "

Schistosomiasis (also known as bilharzia, schisto and snail fever) is an infection caused by parasitic worms that are shed by snails in water. These worms penetrate the skin of people who swim, bathe or otherwise come into contact with contaminated water. The parasite invades the blood vessels, producing eggs that migrate to the intestines or bladder. Urinary schistosomiasis, which can increase the risk of bladder cancer if untreated, can cause hemorrhagic cystitis, the reason for Raphael's bloody urine.

"It's disgusting to think about," said Raphael, who wracked her brain trying to figure out where she had become infected.

One of the most famous recent outbreaks of the disease was documented in 1993 by the Centers for Disease Controland Prevention. The agency's Morbidity and Mortality Weekly Report described severe infections in two Peace Corps workers who had swum in Africa's Lake Malawi.

Two weeks ago the National Institutes of Health reported that researchers have identified chemical compounds that appear promising as potential treatments for schistosomiasis, which affects 207 million people worldwide. Health officials have become increasingly concerned that the parasites will become resistant to the sole drug used to treat the illness, particularly because many cases require annual drug therapy.

"Schisto is quite common in Americans overseas," said tropical medicine specialist Martin Wolfe, lead author of the MMWR report and a clinical professor at the medical schools of Georgetown and George Washington universities. Wolfe, who heads the Traveler's Medical Service, said he has treated hundreds of patients for the disease during his 45-year career, many of them affiliated with the State Department. While living in Africa years ago, Wolfe said, he saw advanced cases of the disease in which the bladder calcified and literally resembled a skull.

Schistosomiasis is second only to malaria as the most devastating disease in tropical regions, according to the Atlanta-based Carter Center. In Africa alone, 100 million people are believed to be infected.

Wolfe said it is not uncommon for doctors in the Washington area to see immigrants from developing countries with chronic infections, the kind Raphael had. (The disease is not contagious, and boiling water kills the parasite.) Raphael took several doses of the worm-eradicating drug praziquantel.

"It's almost a magic bullet," Wolfe said. Until its advent in the mid-1970s, treatment for the infection was dangerous and sometimes harrowing, he said.

Though the mystery of what caused Raphael's infection is solved, the question of how she contracted it may never be answered.

Raphael said the only place she had been swimming was the Dead Sea, where snails cannot survive.

Wolfe said that some patients have contracted the infection from contaminated hotel showers or stepping out of boats; it's possible, he added, that she had been infected several years earlier. Raphael's travels the year before she got sick included Kenya and Ghana, both hot spots of the infection.

"The question we always ask in tropical medicine is where have you been and what have you been doing," Wolfe said. "She might not remember -- but she came into contact with freshwater somewhere." ¿

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