8/6/01: Lonely disease: Lyme disease sufferers find little support

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Lonely disease: Lyme disease sufferers find little support for their often

misdiagnosed condition

Monday, August 6, 2001

By Kathleen Longcore

The Grand Rapids Press

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After Sanford took her Cornerstone University science class on a

field trip in Muskegon County last spring, she found a tiny bump on her

thigh. It developed a bull's-eye rash, the classic sign that a tick had

burrowed into her skin and deposited the bacteria that causes Lyme

disease.

The college instructor hoped for a simple diagnosis and treatment when she

saw a doctor. But she found herself in the middle of the controversy that

surrounds Lyme disease in Michigan.

On one side are those who fear they have a chronic, disabling disorder

that doctors know little about and are reluctant to treat. Some even

wonder if the government is are covering up an emerging problem to protect

tourism.

On the other side are doctors and scientists who believe worries over Lyme

disease are overblown. They admit it exists, but only in certain

geographic areas. In Michigan, several counties in the Upper Peninsula

have had confirmed cases. But cases have also been confirmed in the Lower

Peninsula, although not in West Michigan.

State officials suspended the license of a Saginaw physician for six

months in 1994 for overdiagnosing and overtreating Lyme disease.

A Grand Rapids infectious disease specialist says there are probably only

a handful of legitimate cases of Lyme disease in West Michigan, and he

believes all of them were contracted elsewhere.

" Doctors here are reluctant to diagnose Lyme because there's not much of

it around here, " said Dr. Baumgartner, vice president of medical

affairs and medical education at Saint 's Mercy Medical Center. " You

could treat a million people that don't have Lyme to find one that does. "

Many who say they have Lyme disease present a list of vague symptoms that

could go with many other disorders, Baumgartner said. " They kind of latch

on to the disease of the year. And for those people, the answer isn't to

give them antibiotics. It's to get to the root of their problem. "

Sanford said doctors' denial about Lyme in Michigan delays treatment for

those who have it and lulls people into thinking there's no risk here.

" People need to know about this. If people here think there is no risk in

West Michigan, they won't take proper precautions, " she said.

'We do have Lyme disease'

This much is clear: there are confirmed cases of Lyme disease all over the

state.

" We do have Lyme disease in Michigan. There's no question about that, "

said Dr. , chief medical executive at the Michigan Department

of Community Health.

Ticks of the type that can carry Lyme disease have been found in several

West Michigan counties, including Muskegon, Ottawa, Allegan and Kent. But

none has been found infected with the Lyme disease bacteria, said.

The tick that can carry Lyme infection needs a blood feeding at each of

three stages. The larval and nymphal stage ticks are most likely to pass

the disease to humans. Adult ticks may live on deer.

In late spring and summer, the infected nymph -- the size of a poppy seed

-- has been living on a mouse that is also infected. When the nymph bites

a human, the infection passes into the blood stream and starts

reproducing. If left untreated, the infection can cause multiple health

problems.

Its symptoms imitate those associated with chronic fatigue syndrome,

multiple sclerosis, Gulf War syndrome, fibromyalgia and other

little-understood disorders.

Officials from the National Centers for Disease Control say Lyme disease

is probably underreported, and Lobes, president of the Michigan Lyme

Disease Association, agrees.

Lobes, who lives in Macomb County near Detroit, believes Michigan doctors

are not familiar enough with Lyme to recognize it -- and they are afraid

to diagnose it.

By law, Michigan doctors must report Lyme disease diagnoses to their

county health departments. A diagnosis is considered official only after

it has been reviewed and accepted by the state health department.

Only 23 diagnoses passed muster last year, and 13 of those came from

out-of-state exposure, said. Of the remaining 10 confirmed

diagnoses, three were in the Upper Peninsula -- in Menominee and Delta

counties. Of the seven Lower Peninsula diagnoses, two were in Iosco County

and there was one each in Isabella, Presque Isle, Monroe, Van Buren and

Branch counties.

State officials say there have been no confirmed diagnoses in Kent and

Ottawa counties.

If doctors are uncertain of their diagnosis, they may hesitate to report

it to the state, said Dr. Whitney Mauer, an epidemiologist with the Kent

County Health Department.

" It's a difficult disease to diagnose, " Mauer said. " But we do get about

four reports a year (in Kent County) of what we call suspect cases, with

conditions similar to those that go with Lyme disease. "

Ottawa County had one suspected case in 1999 and none since, said Bill

Lamain, the county's health director.

A confirmed diagnosis requires two positive blood tests and a list of

observed symptoms, said Mauer, who thinks busy doctors may treat patients

with antibiotics without doing the blood tests that go with an official

diagnosis.

" It's kind of a muddy subject because there isn't just one simple blood

test that says, 'yes, you have it' or 'no, you don't,' " Mauer said.

A new blood test recently approved by the Food and Drug Administration may

make diagnosis easier. The ELISA C6 test detects antibodies the immune

system makes in response to the Lyme bacterium.

Antibiotics, but no diagnosis

The first doctor Sanford saw told the Sparta woman she couldn't have Lyme

disease because it doesn't exist in West Michigan. She had no blood test

and was refused antibiotics.

Within weeks, her face started getting numb and she had joint pain. After

some research, she went back to the doctor. " I said, 'I'm having all these

symptoms; I need to have antibiotics now.' "

The doctor agreed, and Sanford believes she must keep taking antibiotics

until her symptoms are gone.

Still, she has had no official Lyme diagnosis, and two recent National

Institutes of Health studies disagree with long-term antibiotic treatment.

The studies concluded that prolonged treatment with antibiotics is

unnecessary for people with Lyme disease and it risks side effects from

the antibiotics, such as yeast infections.

The state's confirmed diagnoses are only the tip of the iceberg, said

Lobes, pointing out that the Michigan Lyme Disease Association has more

than 500 dues-paying members and 3,000 on its mailing list. Many

association members who believe they have Lyme were diagnosed out of state

or have not been officially diagnosed.

Lobes said a billboard the association put up along Int. 75 near Flint

this spring prompted calls from 405 people who either have Lyme disease,

think they have it, or are worried about getting it. There is enough

interest in West Michigan to start a support group in Grand Rapids, Lobes

said.

Lobes became active in the association because she had undiagnosed Lyme

disease herself, despite seven positive blood tests. She was later

diagnosed at a New York hospital.

Retired state Department of Natural Resources employee Joanne , 53,

ran into a similar wall of denial, even though both her job and an active

outdoors lifestyle may have put the Rockford woman at higher-than-average

risk.

" I had a very distinctive rash. And then I felt like I had a low-grade flu

all the time. But I was told I had everything from MS to hysteria, "

said.

, who is getting treatment outside West Michigan, thought her job

would give her some credibility with doctors, but it didn't. " It was

demoralizing to have people you trust treat you like that. All I wanted to

do was get better. "

Kentwood resident rushed her 14-year-old son, , to the

hospital several years ago with severe head pain and uncontrolled

vomiting. It began a nightmarish three years of going from doctor to

doctor before began getting treatment outside West Michigan for

Lyme disease, she said.

" He's been tested for 120 childhood viruses -- all negative. He's been

hospitalized five times, and he's been diagnosed with 25 different

things, " said.

She believes , who'll be 17 this month, got an infected tick bite

on a family camping trip near Mackinaw City.

" We thank God we found an answer, " said.

, Lobes, and Sanford all declined to name their doctors for

fear of reprisals. They believe doctors who diagnose and treat Lyme

disease in Michigan will get into trouble. Some patients, such as Lobes,

believe the state is downplaying the risk to avoid scaring tourists.

But state officials say that's not the case.

Low incidence

Michigan has " an extremely low incidence of Lyme and an aggressive

surveillance program " for tracking it, said Geralyn Lasher, a spokeswoman

for the state Department of Community Health.

Part of the state's program is to drag for ticks in areas that may be at

risk. People also send in ticks they have found. Then scientists check the

captured ticks for Lyme bacteria.

Lasher said no infected ticks have been discovered in West Michigan.

She also warned that unscrupulous doctors may prescribe unnecessary

treatment for people who believe they have Lyme disease. " Unfortunately,

there are doctors who make a lot of money treating people for Lyme

disease, " Lasher said.

Meanwhile, activists say the risk of getting the infection may be growing

in the state. A study last year in four Detroit-area counties shows ticks

that carry Lyme may be on the increase there.

Blood tests taken by veterinarians on dogs in those counties suggest 2 to

4 percent of the dogs may have been exposed to Lyme bacteria. That was a

slight increase in percentage over two earlier studies in the 1990s

carried out by researchers from a New York university.

The recent study was funded by the Michigan Lyme Disease Association and

state health officials discount its findings, which have not yet been

published.

" We think it's highly inflammatory and not based on sound science, " Lasher

said.

Hearing that is no comfort to those seeking awareness for a disease they

say no one wants to acknowledge.

" When you have Lyme, you have no one to talk to, " said.

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