Doctors Stumped? It Could Be TB

It seemed a mystery disease, as baffling as it was relentless.

San Fernando Valley businessman David Glasberg went to the top Los Angeles hospitals and even the Mayo Clinic in Minnesota for help.

But his symptoms only worsened: He developed bloating, asthma, diarrhea, chronic vomiting, fevers, a bloody cough, inflammation of the tissues around the heart, and unforgiving pain in his stomach and back.

No one guessed what it was until 11 years after he fell ill, when a doctor tried putting him on tuberculosis medications. He felt better in three weeks.

“I don’t know how I survived it, or how I didn’t shoot myself,” Glasberg, 49, said of what doctors ultimately assumed was a TB infection. “They can find TB in a 5,000-year-old mummy, but they can’t find it in me? There’s something wrong here.”

Experts agree, saying cases such as Glasberg’s are symptoms of a growing concern: Many doctors in the United States no longer recognize TB, one of the most dreaded diseases of the 19th and early 20th centuries.

“It’s the biggest thing that bothers me in my entire career,” said Dr. Lee Reichman, executive director of the Global Tuberculosis Institute at the New Jersey Medical School. “People don’t think of it.”

Though relatively rare in the United States today, tuberculosis remains among the most common infectious diseases in the world, having killed 1.7 million in 2004, according to the World Health Organization. And it remains a danger in the United States, especially in states such as California, with large numbers of immigrants from countries where the disease is endemic. (Glasberg, though a U.S. citizen, was raised in Chile.)

Last year 2,903 of the 14,093 cases in the U.S. were reported in this state -- more than three-quarters of them among foreign natives.

Tuberculosis bacteria can remain dormant for years, then begin multiplying, particularly if the host’s immune system is weakened. The disease still is generally treatable if caught early. But if diagnosis is delayed, it can permanently harm or kill its victims and spread to others.

“Delayed diagnosis is a concern that obsesses people in TB control,” said Dr. Kenneth Castro, director of the division of tuberculosis elimination at the U.S. Centers for Disease Control and Prevention.

“There are many outstanding physicians who don’t see it anymore and therefore lose proficiency to promptly diagnose and treat it.”

Though government officials do not track how often TB is missed or misdiagnosed, some research and high-profile cases have fueled experts’ concerns.

A study of 158 patients in Maryland, published last year in the International Journal of Tuberculosis and Lung Disease, showed 45% to be undiagnosed 30 days after they first contacted a doctor, with 16% remaining so 90 days after.

Some health agencies have mobilized: The National Heart, Lung and Blood Institute has been helping to fund a TB curriculum in medical and professional schools. The CDC has sponsored four national centers for doctors to call to request diagnostic help when TB is suspected. And the California Department of Health Services is participating in a national study of delays in diagnosis of foreign-born TB patients.

Two initially misdiagnosed cases recently grabbed the attention of top health officials because of who was infected: the spouses of CDC researchers.

In 2004, Dr. Claudia Lacson, who was pregnant with her first child, fell into a coma 10 days after she was admitted to an Atlanta hospital complaining of severe headaches and a persistent fever.

Lacson, a physician married to a CDC behavioral scientist, initially went to the emergency room a week before she was admitted; doctors sent her home with sinus medication. Days before she fell into the coma, doctors had been treating her for bacterial meningitis, even though they were reminded that Lacson had tested positive for exposure to tuberculosis in the past, said her husband, Romel.

Lacson was a native of Bogota, Colombia, and had treated many TB patients while she trained as a physician there. And Lacson herself suspected TB was causing her illness, underlining “tuberculosis meningitis” in an internal medicine textbook from her hospital bed, her husband said.

But by the time doctors began TB treatment, it was too late. She died July 31, 2004, at 38, several weeks after she gave birth to a daughter, who also did not survive.

“If they treated her ... from the beginning with TB medication, I do believe she would be alive today,” said Romel Lacson, who worked in the CDC’s Division of HIV/AIDS Prevention at the time and now promotes TB awareness at the University of South Carolina. “Of course I do.”

Castro, the TB division head, said the death was a sad example of what happens when such a case goes unrecognized too long.

“You have a young woman that died of a curable disease. Shame on us, collectively,” he said.

Castro said he was thinking about Lacson when he was called for advice by doctors in another case involving a CDC spouse several months later. It was the husband of Janet Collins, a behavioral scientist who was acting director of the CDC’s National Center for HIV, STD and TB Prevention.

Just after Thanksgiving 2004, Collins took her husband, Richard Gannon, to an Atlanta emergency room.

Gannon, then 53, was suffering from headache and nausea; he had become disoriented and confused. Doctors were perplexed. They suspected a brain tumor, but Gannon was not responding to treatment, Collins said.

Fortunately for the patient, one of the doctors called Castro, who suspected TB and ordered a lab test.

“They just didn’t know if they caught it soon enough,” Collins said. “It was extraordinary.”

If “the CDC’s doctors hadn’t gotten involved, I would have died,” said Gannon, who had tested positive for TB exposure as a child after his father was infected.

Diagnosing TB can be an involved process. The familiar skin test -- required by schools and some employers -- determines only whether a patient has a latent TB infection, not whether there is active, infectious disease. The results are not foolproof. A follow-up chest X-ray and a laboratory culture can help pin down the diagnosis, and the doctor can try TB drug therapy to see if the patient responds, as in Glasberg’s case.

TB isn’t necessarily restricted to the lungs, nor does it always result in the coughing that is widely considered a telltale sign. The bacteria can be harbored in the gastrointestinal tract, the nervous system and other places in the body.

Reichman, the New Jersey-based expert, recalled the case of a high school guidance counselor with TB. The original physician had missed the woman’s infection -- and Reichman suspects it was largely for one simple reason: “Because she’s a white, middle-class American,” he said. “Doctors think, ‘Who gets TB?’ Minority groups, foreign born, AIDS patients, alcoholics. No -- they probably get more than their share, but anybody can get it.”

Even when the patient emigrates from a country where TB is endemic, doctors can miss the signs.

Shanghai-born Lihua Zhang, a 53-year-old Mandarin lecturer at UC Berkeley, suffered for two years with abdominal pains so severe that she had to be admitted to a hospital several times.

Doctors had diagnosed Crohn’s disease, in which an overactive immune system causes inflammation of the stomach and intestines. So she was prescribed prednisone, a steroid, to suppress her immune system.

But that only caused her tuberculosis to blossom. Only when it had spread to her throat, and she lay gravely ill in a hospital, did another doctor -- who was born in Taiwan -- seriously consider TB.

Zhang later had to undergo surgery to remove part of her intestine, which had been scarred as a result of prolonged TB infection.

Later, she was told that the medical team initially hadn’t considered TB, partly because she was an instructor at a university and lived in an affluent ZIP Code.

“They just assumed,” Zhang said, but “I am an immigrant. I lived in a place where TB is quite common.”

A recent study in New Jersey showed that foreign-born TB patients were more likely to live in better-educated and affluent areas than their U.S.-born counterparts.

Reichman said that when in doubt, doctors need to pick up the telephone. But “how do you get an arrogant doctor who says, ‘I’m a specialist in infectious disease,’ who may not be that familiar with tuberculosis, to put down his arrogance and call for help?” said Reichman, whose TB Institute is holding a training session this fall for TB experts.

Castro said complacency was a factor in the most recent resurgence of TB in the U.S., between 1985 and 1992.

“That was a wake-up call for the country, that if you let your guard down ... TB could come back and bite you,” Castro said.

Glasberg, the patient who was not correctly treated for 11 years, said that in retrospect, he might have been better off being treated in Chile, where TB is more common and doctors more likely to suspect it. During one visit there, a doctor friend had offered to check him out.

“Since the United States supposedly has the best medical system in the world, I went back,” he said.

“It was a mistake not to stay.”

*

(BEGIN TEXT OF INFOBOX)

Q & A

An Official Diagnosis of TB Can Prove Elusive

Question: What is tuberculosis?

Answer: Also known as TB, it is a disease caused by Mycobacterium tuberculosis. TB bacteria can multiply in the body and attack organs, destroying tissue.

Q: How does it spread?

A: Generally through the air when someone with TB in his or her lungs sneezes or coughs. A person can breathe in bacteria, which can become lodged in the lung and multiply, and move to other organs, including the brain, spine, kidneys or intestines.

Q: What happens when you’re infected?

A: Usually, people who breathe in TB bacteria don’t become ill; their immune systems keep the bacteria under control. In this latent stage, people do not feel sick and can’t spread the disease. Many people who have latent TB never develop active disease. But active illness can develop, especially if a person’s immune system is weakened.

Q: What are TB’s symptoms?

A: Coughing up blood or phlegm from deep inside the lungs; chest pains; a bad cough that lasts more than three weeks; fatigue; weight loss; lack of appetite; fever; chills; and night sweating.

Q: Why is TB sometimes so hard to diagnose?

A: Some doctors may be unfamiliar with TB because it has become rare in the United States. They sometimes confuse TB with other illnesses, partly because the bacteria can infect any organ. Skin tests, X-rays and lab results can be misleading or inconclusive. Some diagnoses are made only because the patient gets better after receiving TB treatment.

Q: If I was vaccinated for TB, am I protected from falling ill with the disease?

A: No. In countries where TB is a problem, infants and children are sometimes given a BCG vaccine. But it only limits the severity of certain TB strains among children. Even if vaccinated, children and adults can become infected and fall ill.

Source: U.S. Centers for Disease Control and Prevention; Dr. Jennifer Flood, California Department of Health Services