Governor’s Task Force on Lyme disease hears stories of loss, pain and frustration.

By Victoria Ross, Fairfax Connection
Thursday, March 31, 2011

Tricia Platas, a Springfield mother of four, sat in front of Gov. Bob McDonnell’s Lyme Disease Task Force on Tuesday, March 24, clenched her hands together, and testified about losing her 9-year-old daughter, Amber Marie, to Lyme disease.

“It was a few months after her ninth birthday when we really knew something was wrong,” Platas said. “She woke up one morning in so much pain that she could not walk to the bathroom. This was a little girl who loved to laugh, loved to sing and dance, Amber was the light of our lives.”
Platas cried when she told the panel and 120 attendees how desperate she was to make the many doctors she saw with Amber to take her daughter’s “mysterious” illness seriously. In her frantic search for a cure, she took Amber to a doctor who strapped the little girl to a bed, and waved foul-smelling oils in her face. “Amber was screaming. I just can’t believe anyone would do that,” she said.

“I wanted them to treat my little girl right, so I wouldn’t always ask the right questions, or demand answers. I feel terrible about that,” she said. “You have to push for answers.”

Amber Marie Platas died on April 22, 2002, at Children’s National Medical Center.

Platas was one of 25 area patients and caregivers who testified about their experiences with Lyme disease at Immanuel Bible Church in Springfield. They shared stories of pain, fear and fatigue with the eight-member panel of health department officials and legislators’ representatives. It was the fifth public testimony hearing about the spread of Lyme disease in the Commonwealth.

Led by Michael Farris, chancellor of Patrick Henry College in Purcellville, the task force will propose recommendations to the governor after its final hearing April 25. Farris’ wife and seven of his 10 children have been diagnosed with Lyme disease. The task force is comprised of physicians, wildlife officials, veterinarians and other experts.

According to the Centers for Disease Control and Prevention (CDC), 900 new cases of Lyme disease were reported in Virginia in 2009, a number the CDC acknowledges could be ten times higher due to under-reporting and inaccurate diagnostic tests. In Fairfax County, 250 cases were reported last year, according to the Fairfax County Health Department.

A deer tick takes about 36 hours to transmit Lyme disease, according to the CDC. The longer the disease goes undiagnosed and untreated, the greater the chances are for brain, heart and joint problems.

“We’re here tonight to listen to people’s stories, hear their recommendations and advocate for more public awareness and education,” Farris said.

A well-known constitutional lawyer, Farris is the founder of the Home School Legal Defense Association (HSDLA) and Patrick Henry College, a Christian liberal arts college that is aimed at home-schooled students.

“Lyme disease is dramatically misdiagnosed, and there is too much denial by doctors that chronic Lyme does not exist,” Farris said.

Mikey Pedersen, a 14-year-old Vienna resident, told the panel that his case of Lyme disease went undiagnosed for a year despite seven doctor visits. He said doctors attributed his symptoms to growing pains. The delayed diagnosis allowed Lyme and co-infections to spread throughout his body causing rashes, severe joint pain, and fatigue.

Kristina Sheridan, a Vienna mother of a teenage daughter with Lyme disease, told the panel her family spent four years seeing 30 doctors, visiting seven hospitals and receiving more than 15 diagnoses before they found a team of doctors determined to get her daughter well.

She gave the panel a list of specific recommendations for the panel to consider, including spraying the edges of school fields and soccer fields with Permethrin, an insect repellant, to kill ticks as well as West Nile Virus.

“I’ve no doubt both my kids got bitten by ticks on soccer fields,” she said. Sheridan also said parents of children diagnosed with Lyme need to understand the process for Special Education Certification for “other health issues.”

“This certification provides families and the school with the flexibility needed to handle the waxing and waning symptoms, the additional days of absence,” Sheridan said.
Sarah Beasley, a 29-year-old Fairfax woman, told the panel that she is living proof chronic Lyme exists. In 2000, she was a senior at James Madison University and participated in Army ROTC for fun. But then she started having serious muscle and joint pains.

“As soon as each day was done, I’d limp to my apartment and crash into bed,” she said. “My whole life, I had been a six-hours-kind-of-sleep-girl. Suddenly, I would sleep for 13 hours and wake up feeling like I had been hit by a Mac truck.” After 10 years and more than 10 different doctors, Beasley, the director of a local education association, said she is on the path to wellness.

At the end of her testimony, she dumped out a large bag of medications, herbs, supplements and vitamins. “Please understand that it takes all of these to keep me going in the way that I need to function,” she said. “Without them, I will be that girl that is confined again to the downstairs couch.” She added that she wants the panel to encourage research and protect doctors who actually understand “this spreading, debilitating disease.”

Marjorie Veiga, a Lyme disease patient consultant and mother of a teen daughter diagnosed with Lyme disease, said the biggest myth about Lyme disease is that it is easily diagnosed and treated.

“It is difficult to diagnose due to the unreliable screening tests and due to the migrating and remitting symptoms,” she said. “Also, ticks can carry multiple pathogens. If these are not diagnosed and treated, the patient may continue to be unresponsive to multiple therapies.”

“These heartrending cases of misdiagnosis, financial ruin, and social isolation are difficult to hear as we travel throughout Virginia,” Farris said. “But it is important to gather first-hand testimonies about the personal impact of long-term illness. One of our most important goals is to allow people to be heard.”

The final Task Force hearing on the educational needs in Lyme and tick-borne disease will be Monday, April 25, at 1 p.m. in Fairfax. The location of the meeting has not been announced.

“I was so moved by all the stories given at the meeting that night,” Platas said in an interview after the three-hour hearing. “It saddens me to see how many people are still being made sick by this horrible little bug.

Supervisor Pat Herrity (R-Springfield) attended the hearing, and has listed Lyme Disease Awareness as one of his priorities.

In 2009, Herrity, along with Supervisor Michael Frey (R-Sully), conducted a town hall symposium on Lyme disease at Centreville High School. He said he became concerned about the prevalence of the disease after hearing from many of his constituents afflicted with the disease.

“We have an epidemic that we’re largely ignoring,” he said, adding that he hopes the panel considers that one of their recommendations should be to pass legislation similar to that enacted in Connecticut, where doctors are allowed to prescribe extended doses of antibiotics without fear of malpractice lawsuits.

According to “The Connecticut Post,” passage of the bill in May 2009, which allows physicians to diagnose chronic Lyme disease, and treat it with long-term antibiotics was one of the “cornerstone moments of Lyme disease politics over the last decade.”

Similar bills have been introduced in Rhode Island Pennsylvania, Massachusetts, New York and Maryland that would compel insurance companies to pay for antibiotic treatment for chronic Lyme disease CLD.

“For Swine Flu, we went on full red-alert, but more people are afflicted with Lyme disease, and it’s time we take it seriously,” Herrity said.

Those who did not attend the hearings, but want to share how they’ve been affected by the disease may e-mail Farris at lyme@phc.edu.