ANNAPOLIS — New legislation passed by Gov. Larry Hogan is proof that the tick that gave Baltimore Attorney Susan Green Lyme Disease, bit the wrong lady.
Green, who serves as legislative counsel for the National Capital Lyme Disease Association, was convinced she had Lyme Disease, but she spent years trying to convince doctors of her theory. They kept pointing to four negative test results for the fastest growing vector-bourne infectious disease in the United States.
“I felt like I needed to get to the point where they would stop treating me like a hormonal crazy lady and treat me like a person who was truly sick,” said Green.
Her symptoms intensified in 2007.
“I became extremely ill, I couldn’t get out of bed, but I couldn’t fall asleep,” she remembers. “My whole body was burning like it had been doused in gasoline.”
Soon after, Green had a seizure while litigating in court. Her arms and legs locked up, her memory was wiped out. She couldn’t move.
“Doctors believed I had everything from Fibromyalgia to menopause,” she remembers. “I finally got the doctor to give me another test for Lyme’s Disease just 11 days after my last negative test. This time, my results came in as completely off the charts. Yes, I had Lyme Disease, and despite that awful reality, I was actually dancing for joy because I finally knew what was wrong.”
For the next 20 months, Green was on an IV antibiotic, endured 72 two-hour hyperbaric oxygen dyes to remedy her illness and years of oral antibiotics. The treatments saved her life.
“I remember telling my doctors, if you give me back my brain, I’m going to fight this,” said Green.
Legislating Lyme
On May 10, Hogan signed a bi-partisan bill that Lyme Disease advocates like Green called historic. The Centers for Disease Control estimates more than 300,000 new cases of Lyme Disease a year, and many experts believe that the number is actually much higher. The law requires healthcare providers and medical laboratories that draw blood for a Lyme Disease test to give patients a written statement explaining that current testing for Lyme Disease can be problematic and that a negative result doesn’t necessarily mean you don’t have the disease.
“Lyme Disease tests can yield false negatives almost 60% of the time,” said Green. “That’s almost as random as throwing a dart at a dart board and trying to hit the bullseye.”
Cases of Lyme Disease in Maryland are also steadily rising, and the bill, which is aimed at educating the public to the realities of the disease and forcing the health care community to join in that education of the masses, is key to early detection and treatment which is so crucial in patients.
“We are very hopeful that this measure will inform both patients and physicians of the potential for inaccurate test results,” said Delegate Karen Lewis Young (D-District 3A), who was a co-sponsor of the House Bill. “This alert may lead to earlier diagnosis and a better chance of recovery.”
While the Maryland bill is a significant step in the right direction in the eyes of Lyme Disease advocates, it’s not the first.
In 2013, Green pushed lawmakers in Virginia to pass a similar bill and succeeded.
“I’ve represented a lot of people in my time as an attorney,” said Green, “but that was one of the toughest things I’ve ever gotten done because Lyme Disease is the most bastardized disease on the planet. It’s an imitator disease, so people just think that it’s always something else.”
‘The Bug Guy’ Says Beware
Michael Raupp is a nationally known entomologist at the University of Maryland. He’s been on early morning and late night talk show programs on all the major networks talking about everything from Cicadas to mosquitoes to ticks for years. He’s known by his students and from people like Jay Leno as “The Bug Guy.”
In his line of work as an expert of all things bug related, you’d think even he would be able to avoid the dangerous bite of a tick. He’s been treated twice for Lyme’s Disease, and during an interview this week he admitted that he had just mailed a tick that he pulled off his leg for testing.
Raupp says despite the rise in numbers of Lyme Disease related cases, it doesn’t mean that there are more ticks.
“In terms of Lyme Disease, we’ve basically tripled in the number of cases from 1995 to 2014,” he says, “but I think that’s because we have gotten better at diagnosing it.”
Raupp says the northeast is the prime area for ticks that carry Lyme Disease, but that “Maryland and Virginia are always in the top 10.”
Some studies show that ticks carrying Lyme Disease and other bacteria are now found in all 50 states, and Raupp believes that proves the need for legislation Maryland just passed.
“It’s a good bill, and I think it will help with outreach and education about Lyme Disease in the future,” said Raupp. “Thankfully, outreach is light years ahead of where it was a decade ago, and bills like this one, will only help.”