Wednesday, June 16, 2010

Minnesota Woman Talks About Her Lyme Disease

May 8, 2010 8:51 am US/Central
Minnesota Woman Talks About Her Lyme Disease
By JODIE TWEED Brainerd Dispatch

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."

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