Re: Living with Lyme, 15 year old kid
- From: "Charles P. Adams.. Elected newsgroup leader since 1997" <KathleenInsane@xxxxxxx>
- Date: 27 May 2007 19:54:02 -0700
On May 27, 10:18 pm, CaliforniaLyme <CaliforniaL...@xxxxxx> wrote:
Living with Lyme
By TODD MCHALE
phillyBurbs.com
CINNAMINSON - Jeff Kolarovic is sick and tired of being sick and
tired.
For more than two years, the former Boy Scout has been engaged in a
battle to beat the debilitating effects of chronic Lyme disease.
"It's been hard. I just want to get better," the 15-year-old said in a
whisper as he sat at the kitchen table of his family's Morgan Avenue
home with an intravenous antibiotic drip draining into his vein.
What started out as typical flu-like symptoms evolved into a situation
that has left the 15-year-old so fatigued that even the simplest tasks
leave him drained.
"It kills me to see him like this," Jeff's mother, Susan, said. "It's
been such a long struggle.
"He was such a good student. We forced him to go to school for the
first two days in eighth grade. It was awful. He was too sick to do
the work. He would come home from school and just drop from exhaustion
and fatigue."
Since then, Jeff hasn't been able to attend school. He's missed the
eighth and ninth grades and if his chronic ailments do not improve, he
likely won't be coming back to school any time soon.
And after two years, most of Jeff's friends seem to have faded away.
"What it really comes down to is that he has no life. He doesn't see
anybody...," Susan Kolarovic said.
She said that what is worse to her is that some people don't believe
her son even has Lyme disease.
"It's extremely hard because a lot of people don't understand chronic
Lyme disease," Susan Kolarovic said.
Lyme disease is the most prevalent tick-born illness in the United
States.
Diagnosed incidence of the disease, named after the northeastern
Connecticut town of Lyme, where it was discovered more than 30 years
ago, has tripled since 1993, according to the federal Centers for
Disease Control and Prevention.
New Jersey ranks third in the nation with more than 3,300 cases,
according to the most recent statistics compiled by the CDC in 2005.
"The disease is decidedly on the rise," said Pat Smith, president of
the Lyme Disease Association based in Jackson Township, Ocean County.
"It used to be primarily found in states like New York, New Jersey and
Connecticut, but now we have seen it in 49 states and the District of
Columbia."
Nationwide, more than 23,000 cases were reported in 2005, but the CDC
says studies have shown that only 10 percent of cases are actually
being reported, meaning nearly 230,000 people could be infected with
the tick-born illness.
Dr. Eddy Bresnitz, state epidemiologist and deputy commissioner of the
New Jersey Department of Health and Senior Services, said there has
been a steady increase in recent years in the number of cases here,
but he said that could be because of better diagnosis of Lyme
disease.
"The increase is not all due to a true increase," Bresnitz said.
He did say, however, that during the last reporting period in 2005,
New Jersey had "the most cases ever," with Hunderton County ranking at
the top of the list with 366 cases reported.
During that same period, Burlington County reported 158 cases of Lyme
disease.
The Infectious Diseases Society of America recently announced new
guidelines for the treatment of Lyme disease. The recommendations
basically state that if a person gets bitten by a tick and begins to
develop symptoms of Lyme, they should be given a 2- to 4-week course
of antibiotics to combat the infection.
So what's the problem with Jeff Kolarovic?
In most cases, the antibiotics work effectively. However, for many
other patients like Jeff, who don't know they've been bitten by a tick
and don't develop the most obvious symptom called a "bulls-eye rash,"
the 2- to 4-week antibiotic treatment has not proven to be the answer.
"The problem is that if you don't know you have it, you're not getting
appropriate treatment, which allows Lyme disease to get out of hand,"
Smith said.
Furthermore, many doctors misdiagnose Lyme because of the similarities
in symptoms, leading to delays in treatment.
Jeff currently is being treated by a specialist in Connecticut for
Lyme disease and co-infections. His prognosis is not clear at this
time, and the specialist is focusing the treatment on his symptoms.
Some of the problems that can arise from untreated Lyme disease
include cognitive, memory and neurological problems, heart-related
complications and tremendous pain in the joints and other areas of the
body.
"It can attack every organ in the body. It can even attack your eyes,"
Smith said. "It's a very serious problem. And it's not just in the
United States, it's now worldwide."
Unfortunately, funding for research and treatment of Lyme disease has
been somewhat limited when compared to other vector-born illnesses
like West Nile virus.
Smith said the CDC and the National Institutes of Health spent a
combined $78 million on West Nile disease, compared to $33.6 million
for Lyme disease.
New Jersey Congressman Chris Smith wants that to change.
Smith, R-4th of Robbinsville, has authored the Lyme and Tick-Borne
Disease Prevention, Education and Research Act of 2007, which would
provide an additional $100 million in funding over the next five
years.
The purpose of the act is to improve testing and diagnosis of Lyme
disease, in addition to enhancing health surveillance systems and
increasing public awareness of the disease. The act would also create
an advisory committee on Lyme and other tick-born illnesses.
The bill was introduced last year but it never made it to the House
floor for a vote.
Smith spokesman Patrick Creamer said the bill is currently in the
House Energy and Commerce Committee. If approved by the committee, the
bill would be forwarded to the full House for a vote.
In the mean time, doctors, advocates, politicians and patients all say
the best medicine is prevention.
"You have to become vigilant," Pat Smith said, when going into wooded
or grassy areas. "It doesn't mean you stop going outside or you stop
living. It's just that when you do go out you need to take proper
precautions such as wearing light-colored clothing, tuck your pants in
your socks, so you can see any ticks climbing on you."
Smith said people also need to do a thorough check of their entire
body, especially if they have been in wooded or grassy areas where
ticks live.
"Ticks will bite you anywhere. They love to attach to the folds and
creases of your body," Smith said.
As for Jeff, his family, which spent nearly $30,000 for medical
treatment last year, just wants him to get back to living a normal
life.
"I would love for him to have some sort of teen-aged life - some sort
of normal existence," Susan Kolarovic said. "It's hard to have hope...
It's been a nightmare."
Jeff closed the conversation the same way he started it an hour and a
half earlier.
"I just want to get better," he said.
He then had to lie down for the rest of the day, his mother said
later.
E-Mail: TODD MCHALE
May 27, 2007 8:29 AM
good article, thanks
.
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