Hidden Plague. Forget about SARS. Lyme disease is spreading steadily,

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Hidden Plague. Forget about SARS. Lyme disease is spreading steadily,

 

 

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

pay. "

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

[bOX]

THE UNSOLVED MYSTERIES OF LYME

--How it works: Recurrent symptoms--from fatigue to joint pain--could

be caused by Lyme itself or by some other factor, perhaps an

autoimmune response that lingers after the spirochete is gone.

--How it eludes detection: The Lyme spirochete may be able to hide

deep in tissue, where it can elude blood tests and antibiotics.

Experts do agree on preventive measures: Use bug repellent; wear long

pants (ideally tucked into socks) and sleeves in brushy areas. And do

a tick-check daily.

[bOX]

For more on Lyme disease, go to www.people.com or AOL (Keyword:

People)

 

 

 

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