IT CAME FROM BENEATH THE LAWN CHAIRIF YOU THINK YOU'RE SAFE FROM LYME DISEASE IN YOUR OWN BACK YARD, THINK
AGAIN
By Sharon Bloyd-Peshkin. Sharon Bloyd-Peshkin directs the magazine program
at Columbia College Chicago
August 21, 2005
It started innocently enough. Monday morning, after a campfire with my
10-year-old son in the back yard the night before, I awoke with a painful
spot behind my ear. "It looks like a bite," my husband told me.
The next day the glands in my neck were slightly swollen, and a day later
they had become the size of a small marble. By Thursday, my earlobe was red,
warm and swollen. I peered behind it with a mirror. Sure enough, it was a
bite. Spider? Perhaps. Fortunately the most dangerous biting spiders in
Illinois are the black widow and the brown recluse, and my symptoms-or
rather, my lack of them-didn't suggest either one.
By Friday afternoon my earlobe was so large and tight I thought it was going
to split. By now I was driving to a kayaking symposium in Michigan, so I
called my physician and described my ear. We decided it was likely an
allergic reaction to the bite that could be contained with prednisone, a
corticosteroid, so I stopped at a pharmacy and picked up a prescription.
Over the next couple of days, my earlobe deflated a bit, but the glands in
my neck grew into an angry knot. One evening I felt feverish and exhausted,
but I was fine the next morning. Peculiar, I thought, but not worrisome.
Then the rash appeared-or what I would later come to recognize as the rash.
The area about three inches around my ear was pink, and I had an odd red
streak from my temple down my cheek all the way under my jaw. Some outdoorsy
people at the symposium suggested Lyme disease. I began to wonder too.
I had heard of Lyme, the disease named for the town of Old Lyme, Conn.,
where in 1975 a peculiar outbreak of what appeared to be juvenile arthritis
turned out to be the later stages of an illness caused by a tick-borne
bacterium, Borrelia burgdorferi. I knew that it caused a bull's-eye rash and
light flu symptoms at first, and that left untreated, it could cause chronic
arthritis, cardiac problems and neurological symptoms.
But I also knew-or thought I knew-that Lyme disease wasn't a concern in
Illinois. Even though there were 23,763 cases of Lyme disease reported to
the U.S. Centers for Disease Control and Prevention in 2002-the last year
for which statistics are posted on the CDC Web site-95 percent were in the
northeast (Connecticut, Delaware, Rhode Island, Maine, Maryland,
Massachusetts, New Jersey, New Hampshire, Pennsylvania and New York) or the
upper Midwest (Minnestota and Wisconsin). Illinois had only 47 cases that
year-fewer cases of Lyme than of malaria.
Had I just won the infectious-disease equivalent of the lottery?
In fact, Lyme disease is on the rise in Illinois. In 2000, there were 35
cases reported statewide, according to the Illinois Department of Public
Health. By 2003, there were 71 cases, and in 2004, 87 cases. But these
numbers probably give a false picture of the true incidence of the illness
because it's widely accepted that many cases of Lyme disease go unreported.
"All diseases are underreported," says Dr. Paul Mead, a medical
epidemiologist with the division of vector-borne infectious diseases at the
Centers for Disease Control in Fort Collins, Colo. "Surveillance for any
disease captures only a portion of that disease. The estimates of
underreporting of Lyme disease have been as high as 1 in 10 or maybe 1 in
4."
Mark Schmidt, former deputy director of the Illinois Department of Public
Health, was involved in efforts that began in 2000 to determine the extent
to which Lyme disease goes underreported in this state. "None of us knew
much about the disease at that time," he says. "The total number of cases
amounted to from less than 10 to less than 20 per year, so it wasn't
anything that was very much on our radar."
Schmidt and his colleagues analyzed the illness reports that had not been
included in the official statistics during one year, a process that involved
calling physicians for more information. "We concluded that Illinois
probably had 80 to 100 cases per year on which we had hard-copy reports," he
says.
Not all of those tick bites occurred in Illinois, of course. Wisconsin,
where many Illinois residents vacation, has a much higher incidence of Lyme
disease. "But it was unreasonable to think that Wisconsin has more than 400
cases per year, and . . . Illinois has only 10 cases per year," Schmidt
says.
Subsequent studies have verified Schmidt's observation. Attempts to identify
the locations where Illinois residents were bitten suggest that the
incidence of homegrown Lyme disease is genuinely on the rise. In August
2004, the Illinois Department of Public Health reported that the
black-legged ticks (also known as deer ticks) that are responsible for
transmitting Borrelia to humans were "established"--that is, at least six of
the ticks had been found in two of its three life stages-in Piatt,
Vermillion, Clark and Kankakee counties, as well as along parts of the
Illinois and Kankakee rivers. The ticks had already been established in
JoDaviess and Ogle counties in the northwest corner of the state for more
than a decade.
More recently, in June 2005, a survey by the DuPage County Health Department
and state public health officials found black-legged ticks on public and
private property in DuPage County. One of the captured ticks was found to be
infected with Borrelia.
But no cases of exposure had ever been reported in Oak Park, where I live. I
asked Dr. Maria Picken, a pathology professor at Loyola University Medical
Center in Maywood who has studied Borrelia in northern Illinois, if she was
shocked that I had caught the disease in my own back yard.
"No, not at all," she replied.
"We conducted studies a few years ago and showed how the Midwestern focus is
expanding," Picken says. "We've been predicting this."
But with little funding for research on the prevalence of the black-legged
tick and Borrelia in Illinois, Picken, who also specializes in kidney
diseases, is no longer able to devote her professional time to the subject.
"Unfortunately, there was not enough interest in supporting this type of
research, so we are not doing it full time," she says. "It's more of a hobby
at this point."
The Illinois Department of Public Health is also operating without funding
in its efforts to evaluate the risk of Lyme disease in the state. In April,
the department presented an assessment of its efforts to the CDC. The
report's title: "Preventing Tick-Borne Diseases ('On a Shoestring')."
BECAUSE IT LACKS financial resources, the IDPH concentrates on partnerships
with forest preserve districts, health departments and entomologists instead
of conducting tick research of its own.
This puts the forest preserve districts in a difficult position. "Let's say
you're a typical forest preserve commissioner," says Richard E. Warner, a
professor of wildlife ecology at the University of Illinois at
Urbana-Champaign. "Do you stand up and become a clarion, with the
possibility that it will cause a different recreational pattern by your
clients? With minimal evidence, why should they raise hell about this and
cause people to panic and change their use of the site?
"Few people would disagree that Lyme disease is becoming more common in this
area. I don't want to sound alarmist, but I think the risk is significant,"
says Warner.
On Tuesday evening, nine days after the bite, I paid a visit to my doctor.
Although she had seen only one case of Lyme in the past, she immediately
suspected it was the cause of my rash. The line on my face, she explained,
appeared to be the edge of the classic bull's-eye rash I had heard about.
Called erythema migrans, which means "spreading redness," it is a gradually
expanding circle around the bite that grows over the course of several days.
This rash is regarded by the Centers for Disease Control and the Illinois
Department of Public Health as solid evidence of Lyme disease, so my doctor
immediately started me on doxycycline, an antibiotic that is highly
effective against Lyme disease when administered shortly after infection.
She also drew blood to confirm the diagnosis, because it seemed so unlikely
that I had contracted Lyme disease in Illinois.
I SOON LEARNED what a rat's nest this disease is. The first test, ELISA
(enzyme-linked immunosorbent assay), would not detect the presence of
Borrelia; it would only determine if my immune system had mounted an attack
against the microbe.
ELISA produces a high percentage of false negatives, especially when taken
shortly after infection, before a person is likely to have a sufficient
antibody response. It also has false positives, so the lab also planned to
follow up with the Western Blot test, which is used to confirm a positive
ELISA reading. This test, too, might not yield a positive in the early
stages of infection.
My physician explained to me that I was likely to need follow-up testing
weeks later to obtain a conclusive diagnosis of Lyme disease, but that
waiting for conclusive results could mean failing to treat the infection
while it was still relatively easy to cure. And, she noted, if I turned out
not to have Lyme, it seemed likely that I had another infection that would
respond to the antibiotic.
The effects were dramatic. Within 24 hours, the swelling had gone way down.
Within 48 hours, my neck was no longer swollen and painful. Within 72 hours,
my doctor called to say that both the ELISA and Western Blot tests had come
back positive.
At first I was elated; I knew what I had and I was treating it early enough
to head off the potential long-term effects of the disease.
Left untreated, the consequences of Lyme disease can be quite serious. After
the initial rash and light flu symptoms that I had experienced-the phase
called "early localized Lyme disease"-all symptoms disappear. Then weeks or
months later, during what is called "early disseminated Lyme disease," more
serious symptoms can emerge, including facial palsy, meningitis, heart
arrhythmia and unexplained joint pain. Several months later, the disease can
reach the "late disseminated phase." At this point, it can trigger
arthritis, severe headaches, encephalitis, memory loss and personality
changes.
Not everybody who is infected will get a full-blown illness. "Some people
will fight off the infection," the CDC's Mead says. "Other people don't fare
as well and the disease will spread to other areas and cause other
manifestations. It's a spectrum." But given the severity of the illness when
it does progress to the ultimate phase, it's not a risk you'd want to take.
The problem is, many people miss the initial symptoms. Few people, for
example, see the tick that bit them. "Some sizable fraction-perhaps half of
all people diagnosed and proven to have Lyme disease-never see the tick,"
says Warner.
That's because during the nymph stage, when black-legged ticks bite people,
they are about the size of a poppy seed. "The nymph stage is rather small
and is difficult to notice," says Loyola's Picken. "Many people are unaware
they have been bitten."
The characteristic rash, meanwhile, appears in only about half the cases,
and even then it is easy for someone to miss. "If they are bitten on the
head, foot or back, they may not notice the redness," Picken says. "Seeing
the presence of the rash on people with dark skin is difficult. Unless you
are prepared to examine your skin in good light, you may easily miss the
rash."
The early flu symptoms can easily be ignored too. You feel a little ill, and
then you feel better. Why would you bring this to a doctor's attention?
By the time the more serious symptoms emerge, the bite is likely to have
been forgotten. Without the connection to a tick bite, such symptoms can
easily be mistaken for signs of other diseases, such as multiple sclerosis
or fibromyalgia. At this point, effective treatment is difficult and the
prognosis for full recovery uncertain.
Borrelia burgdorferi, it turns out, is a very squirrely pathogen. It's a
spirochete-the same type of bacterium that causes syphilis. After it enters
the human blood stream, it quickly infiltrates the central nervous system
and, eventually, the brain.
There's a hot debate about what happens in the long run. Some scientists
believe that Borrelia changes form, which allows it to evade the body's
defenses, causing a chronic infection that can be resolved only through the
use of long-term antibiotic treatment. Others believe that the infection
eventually clears up and the long-term symptoms are not caused by the
original infection, but by the body's response to it and that antibiotics
are useless.
"I think reasonable professionals can reasonably disagree," the IDPH's
Schmidt says.
As if this weren't enough, black-legged ticks that are infected with
Borrelia can also carry other bacteria. The most common are those that cause
ehrlichiosis and babesiosis, diseases of the blood cells, and cat-scratch
fever, which affects the lymph nodes. The treatment for Lyme disease will
not necessarily be successful for these illnesses.
ONLY AT THIS POINT did I start wondering about the tick that caused all this
trouble. How had it found me?
The night it bit me, I had been in my back yard with my son. My 13-year-old
daughter and husband had been paddling on the Vermillion River near Starved
Rock State Park. It wasn't out of the question that they had brought the
tick home. But if so, it had survived the shower my husband had taken, had
come to bed with him, and then had crawled off him to bite me instead. Not
impossible, certainly, but darned unlikely.
"As an entomologist, I never underestimate the ability of an arthropod to do
odd things," says Dr. Linn David Haramis, an entomologist with the division
of environmental health at the Illinois Department of Public Health.
"Certainly in science, unlikely things happen."
It seems to me most probable that the tick had been hiding out in my back
yard. But if so, how did it get there?
Black-legged ticks are often transported by deer, which I thought I could
rule out until I spoke with John Hayley, supervisor of Oak Park Animal
Control. "We have had sightings over the years of deer in the village," he
told me. "As early as two weeks ago, there was one prancing around Maple
Park." Maple Park is about half a mile from my home.
I asked him if he would be surprised to find one in a tiny back yard like
mine. "Not at all," he replied. "It's often seen."
But deer aren't the only animals that can transport the ticks. "It's
probably more likely to have been transported by some other mechanism: a
migrating bird, a neighbor's dog, or some object your husband brought back
from LaSalle County," says Haramis.
Moreover, deer only transport ticks, not Borrelia. "What most people have
concluded is that while deer can be very important for moving ticks around,
it's often the small mammal population that becomes the reservoir [for the
bacteria]," explains the U of I's Warner. "There have been well over 100
species of vertebrates that have been found to be moving Borrelia
burgdorferi around."
Black-legged ticks have a two-year life cycle. Adult ticks feed and mate on
deer in the fall. The females drop off and lay their eggs on the ground. In
the summer, the eggs hatch into larvae, who go looking for a blood meal,
which they find courtesy of small mammals or birds. If the animal hosts are
infected with Borrelia, the ticks become infected at this point. The
following spring, the larvae become nymphs and again go looking for a blood
meal. If they carry the bacteria, their hosts-human or small mammal-will be
infected by their bite. By fall, the ticks reach the adult stage and turn to
deer to find both a meal and a mate.
"The larvae tend to want to feed on small rodents," Haramis explains. "But
the nymphs have a wide host preference. They will feed on almost any animal
they can get onto. The adults tend to feed on deer because that's where the
adult ticks get together for mating."
So let's say a hungry, infected nymph was hanging out in my back yard,
seeking a blood meal. I happened to brush by the spot where it was perched.
It sensed my warmth and the carbon dioxide that I was exhaling, and eagerly
climbed aboard. Then it crawled around looking for a moist spot on which to
settle in and begin its banquet.
Here, too, reasonable scientists disagree about how likely it is that an
infected tick will transmit Borrelia to a human. The CDC and IDPH say that
if the tick is removed before it becomes engorged, the chances of
transmission are slim to none. "Ticks have to set up a feeding tube,"
Haramis explains. "They insert their mouthparts and actually glue themselves
to the host." This process is said to take at least 24 hours, though that
figure is disputed. In any case, it's at that point that the tick begins an
exchange of fluids and possibly causes infection.
A report published in the February 2001 Journal of Infectious Diseases
supports the claim that 24 hours must elapse before infection can occur.
Infected ticks were placed on mice and removed every 24 hours so the mice
could be tested for illness. After 24 hours of attachment, none of the mice
were infected. After 48 hours, only a few were infected. But after 48 hours,
most of the mice had the rodent equivalent of Lyme disease.
Warner's experience, however, suggests that Borrelia can be transmitted much
more quickly than that. "I'm cautious about the dogma, such as the claim
that ticks won't transmit the disease if removed within 48 or so hours," he
says. "My son Christopher went fishing and came back with a tick bite. He
was coming down with symptoms within 24 hours."
My experience, too, is at odds with the journal report. I was apparently
bitten after 6 p.m. on a Sunday. (I had not been out of my downtown office
or outside the house, to speak of, all week. I certainly had not been
anywhere that ticks frequent). When my husband looked behind my ear on
Monday morning, the tick was gone, yet I was infected.
"You must be very unlucky," Yasmin Cavenaugh, a public health nurse at the
Oak Park Health Department, told me.
FOR WARNER, being unlucky is putting it mildly-but also beside the point.
Two of his four children have had Lyme disease. His daughter, who contracted
the disease 8 years ago and went undiagnosed and thus untreated for a year
and a half. "Her main symptom, neuropathy of the legs, hasn't gone away," he
says.
His son, who was bitten five years ago and was promptly treated, is fine.
Warner is still frustrated by how difficult it was to convince his
daughter's physicians that they should test her for Lyme Disease, and he
places much of the blame on the poor quality of information that Illinois
physicians receive.
"The thing that unnerved us," he says, "is the oversimplification that the
medical community gets on the disease. When we raised the possibility of
Lyme disease, they immediately dismissed it saying, 'Lyme disease is not in
Illinois.' "
Warner is also troubled by the reassuring language on the CDC's Web site.
The site declares that the people most at risk for Lyme disease are those
who live "in endemic areas [and] who frequent sites where infected ticks are
common, such as grassy or wooded locations favored by white-tailed deer in
the Northeastern and upper Midwest states, and along the northern Pacific
coast of California." It also asserts that transmission of Borrelia is
unlikely to occur if a tick is removed from the skin within 36 hours of
infestation.
"I liken this to a World War II image," Warner says. "There is a huge
difference between saying, 'There is no sub in the harbor,' and saying, 'We
didn't find a sub in the harbor but you need to be careful.' "
Crafting the right message is a quandary for public health officials,
however. "Trying to communicate complex subjects in public health is
difficult," Haramis says. The result oftentimes is advice that Warner and
others find overly reassuring.
"I'm amazed at how dependent people are on the message when they go to the
CDC site," Warner says. "It's the gospel."
MEANWHILE, THE landscape continues to change. "Things aren't static in
nature, and we've seen a slow but steady increase in the number of ticks in
some areas," Haramis says. "It's a complex system."
Adding to the complexity is Illinois' newest tick-borne disease: STARI,
which stands for Southern Tick-Associated Rash Illness. It mimics Lyme
disease and is carried by the lone star tick," Haramis says. The lone star
tick will aggressively bite people in all three stages of its life,
according to the CDC.
STARI emerged in 2001 and promises to make the reporting process for Lyme
disease that much trickier. That's because its initial symptom, erythema
migrans, is identical to the one that characterizes Lyme disease, it has no
serological test of its own yet, and it can be successfully treated with the
same antibiotics used to treat Lyme disease. But it is not believed to have
Lyme's long-term health consequences.
"Certainly there's no question that STARI complicates the issue of
surveillance for Lyme disease," the CDC's Mead says. "The truth is, though,
there is a challenge for surveillance in many diseases."
I have just finished a month on antibiotics. As I nurse the second-degree
burns that I've acquired as a result of the sun-sensitivity caused by the
medication, I wonder whether I'm in the clear yet. There is no test to
determine whether or not a person is free of Borrelia. If I underwent the
ELISA and Western Blot now, I would still test positive and probably will
for a long time to come.
I'll certainly be on the lookout for a new rash or any unusual symptoms. If
I do experience what seems like a light flu in the next month or two, you
can be sure I'll be making an appointment with my doctor.
For now, though, I feel fine, although I think this brush with fate has
changed me. Recently, I was walking through a parking lot with my daughter
when a storm blew in. Under ordinary circumstances, I would have walked
slowly, savoring the scary beauty of the moment. I would have reassured my
daughter that our chances of getting struck by lightning were
infinitesimal-that the very notion of being struck by lightning is a
metaphor for unlikely occurrences.
But that metaphor seems less reassuring than it did in the past. I am now
living, breathing evidence that highly unlikely things do happen, and the
consequences can be long-lasting and life-altering. Recognizing and
responding to them appropriately can make all the difference.
- - -
REDUCING YOUR RISK
There are several steps you can take to reduce your risk of being bitten by
a tick carrying Borrelia burgdorferi, the bacterium that causes Lyme
disease. These include:
- Be alert when you are in an area where ticks are likely to thrive: moist,
shady places with low-lying vegetation.
- Wear light-hued clothes to make ticks more visible.
- Wear long-sleeved shirts and long pants. Tuck your pants into your socks.
- Do frequent tick checks. If you find a tick, remove it carefully with
tweezers.
- Use a repellent containing 20 to 30 percent DEET.
More complete instructions can be found on the Web site of the Centers for
Disease Control and Prevention: www.cdc.gov/az.do. Then scroll down to Lyme
disease.
Finally, if you do get bitten by a tick, the Illinois Department of Public
Health wants to see it. They won't be able to determine if it carries
Borrelia burgdorferi or not, but they'll be better able to discern where in
Illinois various types of ticks have become established. Place the tick in a
crush-proof container, include information about where it was found and
whether it bit a person or a pet, and send to:
Illinois Department of Public Health
Attn: Entomologists
525 W. Jefferson-3rd Floor
Springfield, IL 62761
A "WHO'S WHO" OF LYME DISEASE VICTIMS
AMY TAN, AUTHOR
GARY PLAYER, GOLFER
DARYL HALL, POP STAR
WAYNE SEXTON, FSU QUARTERBACK
GEORGE PATAKI, NEW YORK GOVERNOR
MEG CABOT, "PRINCESS DIARIES" AUTHOR
DIANE VARSI, ACTRESS, NOW DECEASED
PETE SEEGER, FOLK SINGER, ACTIVIST
JAMIE-LYNN DISCALA, "SOPRANOS" ACTRESS
TOM SEAVER, HALL OF FAME PITCHER
ALICE WALKER, AUTHOR
PETE HARNISCH, BALLPLAYER
Copyright � 2005, Chicago Tribune
------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info
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