Lyme disease is dangerous but curable
Seacoast cases have swelled over the past 10 years
A female deer tick.Courtesy photo
Lyme disease may be one of the most frightening,
yet misunderstood diseases. It is often missed or misdiagnosed,
sometimes for so long the effects can be devastating.
Lyme disease is contracted from the bite of an infected deer tick.
At a glance
Avoiding Tick Bites
Stay
on trails outdoors: Avoid areas of overgrown brush and tall grasses.
Wear light-colored clothes so ticks can be easily seen. Wear a hat,
long-sleeved shirt and long pants tucked into boots or socks. Check
yourself often for ticks. Use insect repellent containing DEET or
permethrin (follow directions).
Removing an Attached Tick
Remove
the tick promptly: The sooner you remove it, the less chance of
infection. Use tweezers to grasp the tick's mouthparts at the surface of
the skin. With a steady motion, gently pull the tick straight out. Wipe
the bite area with an antiseptic, or wash with soap and water. Be alert
for symptoms of illness over the next 7-10 days. Do not squeeze the
tick. Do not rub petroleum jelly on the tick. Do not use a hot match or
cigarette. Do not pour kerosene or nail polish on it. Wash immediately
with soap and water, and if you suspect Lyme, save the tick in a jar to
bring to the doctor's office.
"We have had a rapid increase of Lyme in the
past 10 years," said Dr. Jodie Dionne-Odom, N.H. deputy state
epidemiologist. "It peaked in 2008, at 1,300 cases. Currently, it is
down to about 1,200 yearly reported cases. This only represents the
documented cases. Some people are never reported."
The
rate of N.H. cases is similar to other New England states. Dionne-Odom
said cases are moving northward, with the greatest prevalence now being
in the Seacoast.
"We do educational seminars
for physicians and the community," she said. "Most primary-care doctors
and pediatricians are well versed in the disease and its symptoms."
The
trademark bull's-eye rash is usually present, but not always, and
finding the infected tick right away makes the difference. Dionne-Odom
said it takes 24 to 36 hours for the tick to regurgitate the contents of
its stomach into the blood stream and that's where the bacteria live.
Caught early, a short course of antibiotics is usually effective. She
stressed Lyme disease is curable. Even if it crosses the blood brain
barrier, IV antibiotic therapy can be used effectively.
"The problem is that many people do not recognize what they have, may not get the rash or see the tick," she said.
Ticks tend to attach to warm, moist areas, like the back of the knee, neck or groin.
"Undetected,
the bacteria will cause organ or joint damage and those can be hard to
repair," Dionne-Odom said. "Some people go years before diagnosed. Lyme
encephalopathy, that cognitive damage to the brain, requires further
testing to determine damage."
Katherine
Lagassie, 18, of Maine, is struggling with college because of her Lyme
disease. She was diagnosed as a high school freshman but she and her
family, who all have Lyme disease, believe she contracted it at the age
of 8.
"When I got sick, they at first
dismissed Lyme because I never got the bull's-eye rash," she said. "I
started going to doctors at the age of 10. I was always sick."
Lagassie was chronically exhausted. Her muscles ached so badly she could no longer ride her bike or swim in the family pool.
"At
10 years old, my back hurt so badly, I would have to lie on the floor,"
Lagassie said. "I was tested for everything — arthritis, even MS. I
spent months at home, not being able to go to school. I just stayed in
bed."
Finally, Lagassie said, in a last-ditch
effort, a Kennebunk doctor tested her for Lyme disease. It was positive.
Lagassie was treated with antibiotics and naturopath medications, 32
pills a day. Eventually, her diagnosis included a secondary infection,
babesiosis, requiring a second type of treatment. She still takes myriad
medications, designed to keep her immune system strong.
"If
I crash, I don't come back easily," she said. "When I started college, I
was pre-med. I had to adjust that because I could not handle the work
load. I still plan to be in health care, but have lowered my sights to a
less strenuous course of study. I had to arrange for extended test
times, because of my cognitive difficulties. I sometimes get so anxious
and paranoid, I can't recover information I know I have inside."
Brian
Lagassie, Katherine's father, said that since the medical community
often does not recognize chronic Lyme disease, insurance plans will not
cover many treatments.
"At points, her
treatments were costing $1,400 a month," he said. "Disability laws
refuse her aid, because while she can't work, they refuse to acknowledge
it. Face to face, you'd never know how devastating this is for her.
Lyme disease patients are much where AIDS patients used to be. They are
stuck in between, and the medical community needs to recognize the human
side."
A common sign of Lyme disease is a red
bull's-eye rash expanding rash 2 inches or more in diameter, which
appears between three days and a month after the tick bite. People with
Lyme disease might get chills and fever, headaches, or muscle and joint
pain, and often feel tired. Early symptoms resemble the flu. They can
come and go. Many people don't get the rash and may have false negative
tests.
There are three stages of the disease.
Stage 1 is localized, meaning the disease has not yet spread to the
blood stream and the body. In stages 2 and 3, there are varying degrees
of dissemination through the blood stream, with accompanying joints,
muscles and organs affected.
If Lyme disease
isn't treated properly, other signs can appear weeks or months after the
tick bite. These include arthritis, numbness or paralysis, often in the
face muscles, problems with heart rhythm and problems with memory or
concentration.
The blood test for Lyme disease
is called ELISA. If it is positive, a western blot test can confirm the
diagnosis. A regimen of high doses of antibiotics is generally begun
within 72 hours of the discovery of the tick.
Complicating
diagnosis is that ticks can transmit other diseases simultaneously,
including anaplasmosis and babesiosis. Symptoms can be similar, but both
require different courses of treatment. If not recognized as parallel
infections, treatment will be ineffective.
Dr.
David Itkin is an infectious disease specialist and the epidemiologist
for Portsmouth Regional Hospital. He said there is no scientific basis
to support long-term symptoms people claim as being part of their Lyme
disease.
"More I would say it's the way
disease affects the person," he said. "For some, their immune system
takes longer to recover. The symptoms are similar to chronic fatigue
syndrome, and appear to be the after-effects of the disease, as the
immune system rebuilds."
Itkin said there is
also no documented evidence to say Lyme causes cognitive defects. The
question is how to treat those patients who do seem to be suffering from
an undefinable ailment.
"We now have a
greater recognition of this disease as a moving target," he said.
"Fifteen years ago, it was not here. It was in Ipswich, Cape Cod, but in
the last decade it has been moving northward."
Testing for Lyme disease is not done routinely. Itkin said he'd be more likely to test based on presentation.
"A
landscaper with the suspect symptoms is more likely to be tested than
an 89-year-old man who lives in a nursing home and never goes outdoors,"
Itkin said. "Lyme does not present as respiratory problems, or with
diarrhea. We need to rule out the obvious and test what fits as
suspicious for the disease."
Some cases are
more serious, requiring IV antibiotic therapy. Itkin said a Seacoast
hospital recently treated a case of Lyme carditis, meaning the patient's
heart had become involved.
Otherwise, a 14-28 day course of antibiotics is what he would prescribe for those with general symptoms such as Lyme arthritis.
David
Hunter heads the Greater Manchester Lyme Disease Support Group. He said
the group, started about four years ago, has more than 500 members from
southern New Hampshire and Massachusetts.
"Twelve
years ago, my daughter was diagnosed," Hunter said. "We lived in
Connecticut at the time and she was in the eighth grade. When she was
diagnosed, I thought it would be easy. Then she proceeded to miss high
school. She was a number one student, soccer player, cello player, and
she lost it all. So, I got involved. I was looking for answers and I
found controversy. People in school, who should have supported her, said
she had 'school phobia.' Suddenly her friends thought she was weird and
they abandoned her."
Hunter's daughter is now
26. She still suffers symptoms but succeeded in getting her GED and
graduating from the University of New Hampshire with high honors.
Hunter continues the support group, gives talks whenever asked and recently started a teen support group.
"Our
meetings are always well attended," he said. "There are always people
wanting to share their stories and get information. My mission is to
make people understand."
To learn more about the support group, call Hunter at 660-3425.
At a glance
Avoiding Tick Bites
Stay
on trails outdoors: Avoid areas of overgrown brush and tall grasses.
Wear light-colored clothes so ticks can be easily seen. Wear a hat,
long-sleeved shirt and long pants tucked into boots or socks. Check
yourself often for ticks. Use insect repellent containing DEET or
permethrin (follow directions).
Removing an Attached Tick
Remove
the tick promptly: The sooner you remove it, the less chance of
infection. Use tweezers to grasp the tick's mouthparts at the surface of
the skin. With a steady motion, gently pull the tick straight out. Wipe
the bite area with an antiseptic, or wash with soap and water. Be alert
for symptoms of illness over the next 7-10 days. Do not squeeze the
tick. Do not rub petroleum jelly on the tick. Do not use a hot match or
cigarette. Do not pour kerosene or nail polish on it. Wash immediately
with soap and water, and if you suspect Lyme, save the tick in a jar to
bring to the doctor's office.
