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commentWaterford resident David Hunt knows all too well the reality of Lyme disease. Four members of his family have been diagnosed with the ailment, but his family's path to diagnosis was not an easy one.
"My wife has been battling for 20 years," he said. "I could wallpaper a room in my house with negative Lyme tests that put us in the wrong direction."
In addition to his wife, both of Hunt's children were born with the disease and he said he must travel out of state, to New York for his wife and Pennsylvania for his children, to get treatment.
"We have spent over $350,000 over the last 11 years," he said. "It's wiped us out."
Hunt joined a few hundred residents of Loudoun, Fairfax, Prince William and Maryland at the School Administration Building in Ashburn Tuesday evening to take part in Rep. Frank Wolf's (R-VA-10) forum on Lyme disease. Dr. David Goodfriend, director of the Loudoun County Health Department, Dr. Jorge Arias, manager of the disease- carrying insect program for the Fairfax County Health Department, and Dr. Samuel Shor, associate clinical professor at George Washington University Health Care Sciences, whom Wolf called the most educated in the field, spoke on all aspects of the disease, prevention, treatment, symptoms and the controversy surrounding the diagnosis.
"This is such a significant issue in our community," Goodfriend said. "We are an epidemic area. In Loudoun, many of our backyards are tick-infested areas."
Wolf created the forum for residents after he was approached by constituents with Lyme asking for his help in getting the word out about the disease.
Just days before the forum, Wolf recounted, he was out working in the pasture behind his house and could not help but think about Lyme disease. He said he thought about his grandchildren, who loved to run through the field on his property.
"This is an issue that has a lot of concerns that I am interested in," Wolf said.
According to the data presented at Tuesday's forum, Loudoun has led the Northern Virginia region in Lyme disease cases. In 2007, there were 500 reported cases of the disease, a statistic Goodfriend said accounts for not just an increase in the number of infections, but an increased awareness and reporting by doctors.
When asked to identify themselves, more than half of Tuesday's audience members raised their hand as a person infected with Lyme disease, showing others just how prevalent the disease has become. During the question and answer period, many of those diagnosed expressed frustration with the health care system and its attitudes towards Lyme disease.
For one woman, concerns centered on how she was treated by the military when she got sick. For another it was how her doctor was dealing with the many co-infections she had along with Lyme. For yet another it was determining whether she responded to the drugs used to treat Lyme because of the disease or because of the drug's anti-inflammatory properties. Another woman wanted to know why her dog could be diagnosed and treated for Lyme in six weeks, but she could not find a doctor to properly treat her.
But for many present the biggest concern remained the diagnostic process and the tests being used by doctors. In his presentation, Shor said the two-tier test typically used has only an approximate 35 percent sensitivity to the bacteria that causes Lyme disease. Even the western blot test only has about a 50 percent sensitivity.
Goodfriend pointed out that a negative test does not mean a person does not have Lyme disease, and other symptoms, such as a bulls-eye-shaped rash and flu-like symptoms, must be discussed between a patient and a doctor. But, without a positive test, many residents pointed out, getting insurance companies-and often doctors-to recognize their illness is impossible.
"The bottom line is it's a difficult diagnosis to make based on the technology we have," Shor said.
Shor added that one of the major controversies surrounding Lyme disease is the hard-line opinion of the Infectious Diseases Society of America that chronic Lyme disease is virtually non-existent and that any symptoms after the society's recommended treatment, 28 days of antibiotics, are the result of other factors outside of Lyme. Those opinions were produced in the guidelines laid out by the society in 2006 and it is those guidelines that most of the medical community follows when it comes to Lyme.
"Their criteria for those diagnoses are felt to be flawed by many in the Lyme community," Shor said.
Shor, and many others on the front line of Lyme research and treatment, are looking to the International Lyme and Associated Diseases Society, which has seen its stance evolve over the past 15 years.
"When I first became aware of ILADS, I thought what many in the medical industry thought . . . that they were pariahs. That they didn't know what they were talking about," Shor said. "But I've come around and now I think they're visionaries."
Shor's original work with Chronic Fatigue Syndrome morphed into work on Chronic Lyme Disease and he said he has seen great results with patients that receive continual treatment through antimicobials. Shor said he has heard also from many who say he is making his patients' tolerance to the drugs higher and making them too dependent on them.
"They're absolutely right. But these are people that have an illness that warrants treatment," he said.
All three professionals at Tuesday's forum said the best way to combat Lyme disease is through education, not only of residents, but also of the medical community.
"Fortunately, and unfortunately, it's now so much in the minds of people in Loudoun County and so they are going and getting tested," Goodfriend said. Goodfriend also said, besides Loudoun adopting Lyme disease as a top tier health initiative, Virginia as a whole is looking to address the problem.
"We are at the southern tip of the Lyme problem and it's spreading," he said.
Many residents gave credit to Goodfriend, Shor and Arais for being at the forefront of the Lyme issue and thanked Wolf for his commitment to addressing the disease.
Along with 110 other co-sponsors, Wolf has signed onto a bill by Rep. Christopher Smith (R-NJ-4) that would work to combat the increasing number of Lyme disease cases. The bill has stalled in committee, but Wolf has pledged to help revive it and to work to get it passed.
"We need a good test for Lyme," Hunt said. "We need good treatment. For the sea of sick people in this room and their families."
How To Stay Protected
Protecting against Lyme disease is completely a personal responsibility and a personal decision, Jorge Arias, manager of the disease-carrying insect program for the Fairfax County Health Department, told residents at Tuesday's forum in Ashburn.
"There is no way anybody can protect anyone but themselves," he said. "You have to do it for yourself."
When it comes to personal safety, Arias told residents to wear light-colored clothing when outside because it is easier to spot ticks, people with long hair should pull their hair back and pants should be tucked into socks.
"You might look like a big dork, but it's worth it," he said.
For tick and bug repellent, Arias admitted there is some controversy, but said products like DEET, oil of lemon and picaridin are important to prevent the spread of Lyme. He also recommended permethrin, a controversial insecticide ingredient, which is his choice for tick repellent.
"It is a poison," he said. "So apply it to your clothing, not your skin." Arias recommended spraying clothes outside and letting them dry for two to four hours before wearing them, Permethrin will stay on the clothes for up to five washes, he said.
"It's a matter of health. It's a matter of personal choice," Arias said about the debate over the insecticide. "But for those that have had Lyme disease, or have chronic Lyme disease, they'll tell you permethrin is better."
Since many backyards are tick-infested areas, Arias said one of the best things residents can do to protect themselves is to mow their grass. It is also important to have a tick-safe area between a lawn and any natural or wooded area on a property.
"Ticks do not like sunny, dry areas," he said. "So use gravel, dirt and stone to make a protection zone if you have a wooded area."
Arias said permethrin can also be applied to grass and lawns to prevent ticks from spreading and recommended applying it some time between late March and early May.
In most cases, a tick must be on a person for at least 36 hours for the bacteria that causes Lyme to get into a person's system, so regular tick checks are still the best prevention for Lyme disease.
Arias recommended checking for ticks after you have been outside and making it a habit to check your body when you get out of the shower.
"You are looking for any new freckles and any new freckles with legs," he said.
Lyme Disease Facts
