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Little Falls, Minn. (AP) -- Elizabeth Fadling was only 5, but she
remembers when she got bitten by a deer tick while visiting
relatives in Pennsylvania back in 1985.

      She exhibited classic Lyme disease symptoms following the bite
but no one figured that out - specialists at the University of
Minnesota, Mayo Clinic and other doctors she saw in Brainerd. It
wasn't until last year, after 26 years of suffering from
unexplained and debilitating illnesses, that Fadling was finally
tested by a nurse practitioner who suspected she had Lyme disease
all along. In January 2009, she tested positive for Lyme disease,
as well as two other tick-borne co-infections.


      Fadling, a 1997 Brainerd High School graduate who lives in
Little Falls with her husband, Chris, and 2-year-old daughter,
Paige, is hoping that by sharing her story it will help others
identify tick-borne illnesses sooner, before they end up in a
wheelchair like she is now.


      When Fadling was 5, she immediately got a fever and fell ill
after being bitten by the tick. She also had a rash, but not at the
site of the bite. Doctors told her dad, Dale Rapovich, that she had
the flu and possibly a kidney infection. A couple months later, as
a Baxter kindergartner, Fadling's legs and knees began to grow
stiff and swollen; her joints ached. She would become so exhausted
at school that she'd lie down flat on the floor when she got off
the bus, falling asleep while still wearing her coat and backpack.

      This was not normal behavior for a child, her babysitter would
tell her dad.


      Rapovich, now a retired Brainerd sixth-grade teacher, tried
everything he could think of to get her well. He took her to the
University of Minnesota and the Mayo Clinic. Fadling was diagnosed
in first grade with juvenile rheumatoid arthritis at the University
of Minnesota.

      She suffered from horrible stomach pains and every test and
colonoscopy revealed severe inflammation but doctors couldn't come
up with any explanations. In fourth grade she was put on
antidepressants because her doctors felt she may be causing the
symptoms herself.

      She often suffered silently, not letting on that she was in pain
or fatigued. She tried hard to stay awake in class because she
would be made fun of if she fell asleep. Even when she would suffer
from debilitating headaches or was in pain and vomiting blood, she
knew it didn't do much good to complain.

      "You learn you have to be tough and suck it up," said Fadling.

      "I brought her to doctors," said Rapovich. "There's still a
lot of guilt left over for me."

      "It's not your fault, dad," she told her father.

      At 18, she quit taking antidepressants and for the first time,
she said she felt she was clear-headed. But she continued to be
very sick. Over the years, she has suffered from brain swelling and
has been hospitalized many times. In 2004, a Florida oncologist
told her she had cancer, or lymphoma. She was later found not to
have cancer at all.

      She and her husband, Chris, who married in 2005, suffered the
loss of two babies during pregnancy. Devastated, they moved from
Florida to Little Falls to be closer to family and try to get
pregnant again. After a high risk pregnancy, Fadling gave birth to
their miracle baby, Paige, on Aug. 25, 2007. At five weeks, Paige
had surgery on her stomach, which didn't open into her intestines,
causing frequent vomiting. 

At 9 months, she was sent to Children's
Hospital in Minneapolis and doctors discovered that for some
unexplainable reason she had membranes obstructing her ability to
absorb food and fluids. She also was born with an enlarged muscle
at the top of her heart, as well as a hole in her heart. Her leg
bones also twist inward, causing many trips and falls for the
toddler.


      "Doctors couldn't explain this stuff," said Fadling.

      Paige also was diagnosed with failure to thrive. She began
suffering from uncontrollable muscle ticks and joint pain, just
like her mother. The little girl's joints would become so hot and
painful that her parents would find her leaning up against the
glass patio door to cool them down.


      By last Thanksgiving, months after Fadling was diagnosed with
late stage Lyme disease, she realized her daughter was suffering
from the disease, too. It was devastating.


      "I fought really hard to get her here," Fadling said, sobbing.
"You fight to bring your child into this world and you think
everything will be OK if I can just get her here. I was so naive. I
had no idea. I would do anything for her."


      "As a mom, you just want your kids to be healthy and happy,
running and playing. You feel guilty. If I had known I had late
stage Lyme disease and I would pass this on to my daughter, I would
have adopted. I would never had done this to her intentionally. I
wouldn't have done that on purpose. Not to my daughter. When I see
her suffering, she got it from me. It's hard. Hard to watch your
child suffer."


      Fadling's pregnancy, coupled with the Lyme disease, caused her
endocrine system to go "haywire." Her muscle twitches, spasms,
night sweats, dizziness and pain grew worse. She couldn't think
clearly and would forget things. One of her most frightening
moments was when she had Paige in the car with her and they were
driving in Little Falls when she couldn't remember where she was
going or where she lived. She frantically called her husband at
work and he guided her home. On the counter were their library
books, which she had meant to return that day.


      Last fall Fadling began using a wheelchair because of her
seizures and chronic leg and joint pain. In December Paige began
going to day care because Fadling and her husband agreed that she
could no longer safely stay home with her mother.

      "It's hard to admit when you can't do things anymore," said
Fadling. "It's hard. Her first day of day care I felt my heart was
ripped out of my chest."


      After seeking help in the state and achieving no success in her
treatments, Fadling sought out a Lyme disease specialist in New
York. He accepted them both as patients. On April 7, she and Paige
traveled to Manhattan to see him. She has recently begun an
aggressive treatment plan involving intravenous antibiotics. Paige
is also being treated with a combination of medications.


      Her doctor, Dr. Bernard Raxlen, is featured in "Under Our
Skin," a documentary about late stage Lyme disease. Mother and
daughter also have doctors they see locally who are working
together with Raxlen to help treat their Lyme disease. They return
to see Raxlen in August.


      There is controversy surrounding chronic Lyme disease and
whether long-term antibiotic treatment is safe and effective. The
Infectious Diseases Society of America concluded in its 2006
guidelines, upheld by a review panel last week, according to the
Associated Press, that clinical trials for extended antibiotic
treatment of Lyme disease - usually given intravenously - are
unproven and potentially dangerous. 


In last week's report, the
review panel of doctors and scientists unanimously endorsed the
2006 guidelines. The panel said the guidance was based on the best
evidence at the time and is supported by evidence published since
then, according to the AP. Many Lyme disease patients are critical
of the IDSA's findings.


      Raxlen told Fadling that it could take six months, or maybe even
two years, until she might begin feeling better because of how long
she went undiagnosed.


      Still, for the first time, Fadling said she feels optimistic
that she could be walking in a 5K to raise funds for Lyme disease
prevention next summer.


      "It gave me a tremendous amount of hope," said Fadling. "He
told me that if he can't help me, he'll never abandon me. He does
believe I can get better and Paige can live a pretty normal life."


      Most of the medications that they are taking aren't covered by
insurance and are expensive. Friends have set up a benefit fund for
the family. Donations to help pay for medical expenses may be sent
to: Benefit Fund for Elizabeth Rapovich Fadling, Mid-Minnesota
Federal Credit Union, 13283 Isle Drive, Baxter, MN 56425.


      Fadling also has a CaringBridge website. On her site she has
listed resources for those who also are suffering from Lyme
disease.


      "I lost 26 years of my life when I haven't been able to be
productive," said Fadling. "I'm still 31 and I still want to be
normal and I have hope that I'll get there. It might take a couple
of years but I believe I won't always be in a wheelchair."


      Fadling advises those who suspect they may have Lyme disease to
immediately find a Lyme literate doctor who will treat them.


      "Don't wait," said Fadling. "You know your body. If a doctor
won't treat you, find a doctor who will listen to you."


      She strongly encourages people to use tick repellents with DEET
and to spray their clothing with permethrin, which kills ticks for
up to three months.


      "This is preventable," said Fadling. "This didn't have to
happen."

Gallery

Health

Elizabeth Fadling, who suffers from Lyme disease with her 2-year-old daughter, Paige, is hoping that by sharing her story it will help others identify tick-borne illnesses sooner, before they end up in a wheelchair like she is now.

Lyme disease strikes mother and child

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