TB Diagnosis Sometimes Delayed by Unfamiliarity in the U.S.



Los Angeles Times
August 6, 2006

TB Diagnosis Sometimes Delayed by Unfamiliarity in the U.S.
Tuberculosis afflicts some patients for years before being correctly
treated, because doctors simply don't expect it.
By Rong-Gong Lin II, Times Staff Writer

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."

*

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

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