The Lyme Disease Association has “Reprinted from PEOPLE Weekly’s
June 16, 2003 issue by special permission; © 2003 Time Inc. All rights reserved.

People; 16 2003 J.D. Heyman Joanne Fowler in Frederick

Hidden Plague. Forget about SARS. Lyme disease is spreading
steadily, and some experts say it can elude the standard cure

For months no one knew what was happening to Tom Coffey. In the
spring of 2001 the then 34-year-old radio dispatcher was struck by
high blood pressure and double vision. By summer's end he was
suffering from facial palsy, crushing fatigue and joint pain so
intense he walked with an old man's shuffle. Medical visits turned up
nothing. By October his weight had plummeted 105 lbs., to 202. "My
doctor was at the end of his rope," says Coffey. "He kept referring
me to different people."

When he awoke unable to swallow his saliva, Coffey rushed to a
hospital near his Frederick, Md., home and was given blood tests and
brain scans. Doctors returned with a terrifying diagnosis: ALS, or
Lou Gehrig's disease, a degenerative illness likely to kill him
within six months. "Tom's dad said, 'I always thought he'd be burying
me. Now I'll be burying him,'" says Coffey's wife, Tricia, 35.

Hooked to a feeding tube, Coffey waited to die. But a relative who
thought his symptoms might have another cause suggested a trip to Dr.
Greg Bach, a suburban Philadelphia Lyme disease specialist. The
doctor found something everyone else had missed--a "bulls-eye" rash
beneath his patient's hair. Coffey was suffering not from ALS but
from a severe case of Lyme, which is spread to humans by tick bites.
For most people, Lyme manifests in a rash and flulike symptoms easily
treated with antibiotics. Left undiagnosed, however, it can invade
the nervous system. "I always thought Lyme was no big deal," says
Coffey, who rebounded after taking medication."But it damn near
killed me."

In fact Lyme is rarely fatal, but as Americans head outdoors during
the peak infection months of May to July, experts warn that it can be
devastating--and that the threat is growing. In the past decade the
disease has spread from the Northeast to every state except Montana.
Last year the Centers for Disease Control reported 17,000 cases--more
than double the number in 1990--but researchers like Joseph Piesman
of the CDC say the actual incidence may be about 10 times higher.

The illness is also the subject of a growing debate. While most
doctors believe that Borrelia burgdorferi, the tick-borne spirochete
that causes Lyme, is quickly killed by medication, many patients
complain of arthritis, irregular heartbeat, memory loss and motor-
skill problems long after they have undergone the standard two-to-
four-week treatment regimen. That has led some researchers to
conclude that Lyme can return as a chronic illness in perhaps 10
percent of those thought to be cured. "Lyme is much more serious than
the public recognizes," says Dr. Brian Fallon, director of Columbia
University's Lyme Disease Research Center. "People can have severe
cognitive problems for the rest of their lives." The medical
establishment, however, remains unconvinced, and a few doctors have
been penalized for their treatment of recurrent Lyme. Pat Smith, head
of the Lyme Disease Association, a nonprofit group calling for
greater research on the disease, thinks pressure not to recognize the
chronic form comes from insurance companies: "They don't want to

No one disputes that late-stage Lyme is little understood. Tests are
often effective only in early-stage infection, and while sufferers
usually get a rash, they don't always notice it. Worse, many Lyme
symptoms mimic other diseases: fibromyalgia, multiple sclerosis, even
mental illness. That means other diseases may be mistakenly treated
as Lyme--the crux of mainstream objections to the chronic-disease
theory. "People who test negatively for Lyme are still being given
antibiotics to see what happens," says Dr. Gary Wormser, head of
infectious diseases at New York Medical College.

But Fallon argues that a longer course of medication, given
intravenously, may be needed for some patients. Coffey's doctor
agrees. "Half the patients I see have been inadequately treated,"
says Bach. "These people thought they were cured by being treated
only a little."

Coffey, now 37, is taking no chances: He has remained on antibiotics
for 14 months to be sure that his Lyme is really gone. Still, he's
grateful to have escaped his death sentence. "I'm starting over
again," he says. "From here on out, the rest is gravy."

--J.D. Heyman --Joanne Fowler in Frederick