Towson attorney Susan R. Green knows she’s been bitten by ticks at least four times in the past two decades, and thinks her problems started that far back. But when she called her doctor after first noticing a bite, he said not to worry unless she noticed the tell-tale bull’s-eye rash. No rash, no worries. For Green, that was just one of the misconceptions about Lyme that resulted in years of crippling sickness. Long before Western medicine finally acknowledged that she had Lyme disease, she noticed that her memory wasn’t what it used to be. Then, she developed a twitch in her left eye and some anxiety, things she’d never experienced before. She got an MRI brain scan to find an answer to her memory issues, but, mostly, her doctors said she was fine. And she believed them. Until December 1, 2007.
“I had a nick on my abdomen, apparently from a tick, and I remember wondering how I had a nick there, because it was winter.” (Actually, Baltimore winters are too mild to kill off all the ticks.) “It wasn’t like I’d been running around in shorts or something,” she recalls. Within 24 hours, she was flat on her back in bed.
“I felt like someone had dosed my nerves in gasoline and lit them on fire,” she recalls. “I couldn’t lift my head off the pillow, I couldn’t breath. I had a cough. I couldn’t speak in sentences. I didn’t have enough oxygen to walk to the bathroom. I remember it was four o’clock in the morning and I couldn’t sleep, and I remember thinking, ‘Either put a bullet in me or get me to the hospital, just make it stop.’”
So began an epic journey that would take Green from one doctor’s office to the next, and from a career as an attorney to a calling as an outspoken Lyme-disease advocate.
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. According to the Centers for Disease Control and Prevention (CDC), it’s the most commonly reported vector-borne illness in the U.S. When captured early and treated with antibiotics, most people make a full recovery. Untreated, however, it can attack the nervous system and cause an array of symptoms, including facial palsy, arthritis-like pain and swelling, and cognitive defects. Worse yet: Despite her doctor’s assurances, a bull’s-eye rash does not occur in all cases of Lyme. And Green’s infection remained undiagnosed—and therefore untreated.
A statuesque blonde with deep brown eyes and a sense of fashion that lends itself to savage high heels and killer suits, Green is also an aggressive litigator. (Her website is HardBall-Law.com.) She defended Avi Werdesheim in 2012 when he and his brother Eliyahu were accused of assaulting an African-American teenager while on neighborhood watch, a case that sparked tensions throughout the city. (Avi was aquitted.) Pre-Lyme, Green ran five to six miles a day and took no medications. Yet this dynamic, no-nonsense woman (the probably fiftysomething lawyer prefers not to share her age), who describes herself as “a tough old bird,” was deteriorating.
“By February, I had no memory whatsoever. When I would leave the house, I would get to the end of the driveway, and look left and right and couldn’t remember what was in either direction. So I’d sit in my driveway crying,” she says. “I would have blackouts where I’d get up at 7 a.m. to go to work, and I’d go outside and it would be dark and I’d have no means of accounting for what happened to the day. And all my hair fell out.” In that same month, she had a seizure.
The CDC recently revised its estimate of the number of cases reported annually from 30,000 up to an astounding 300,000.
Green realizes now she had fallen prey to yet another major Lyme myth. She had been tested for Lyme, but the results were negative, so doctors misdiagnosed her with everything from menopause to bipolar disorder. Friends and family began to think she was just crazy.
The reason the tests are so often ineffective is that they measure antibodies made by white blood cells in response to infection. But as the CDC now explains, it can take several weeks for sufficient antibodies to be produced so that they show up on a test. The CDC was part of the problem, too: It only recently acknowledged inadequacies in the testing and reporting of Lyme disease, causing the health organization to revise its estimate of the number of cases reported annually from 30,000 up to an astounding 300,000.
Lyme disease is like the climate change of the infectious-disease world, with believers and doubters. The differences of opinion can be seen in even the most basic of statistics: The Infectious Diseases Society of America (IDSA) states that a bull’s-eye rash is apparent in 70 to 80 percent of Lyme cases. The International Lyme and Associated Diseases Society (ILADS) says it occurs in fewer than 50 percent of cases.
These two entities represent two opposing schools of thought on Lyme. Meanwhile, many sick patients are stuck in the middle. Green found herself right in those crosshairs when, on the recommendation of a friend, she went to a Johns Hopkins-trained infectious-disease doctor (she asks that his name not be used) who tested her for Lyme again. This time, it was positive, and she also tested positive for several common co-infections including Babesiosis and Ehrlichiosis. His diagnosis: She was very sick and would require long-term antibiotics to be well. What happened next shocked her.
“He said, ‘I can’t treat you anymore. I belong to the IDSA and my society would drum me out if they knew I gave you antibiotics past 28 days.’”
For those whose Lyme goes undiagnosed, and for a small population who go through antibiotic treatment without success, long-term antibiotics have emerged as a solution. But the practice is controversial—largely because the medical profession considers long-term use an abuse of antibiotics that can cause drug resistance. That’s why the Infectious Diseases Society of America does not recommend long-term antibiotics and insurance companies usually will not pay for the treatment.
Advocates for long-term antibiotics like Green assert, however, that this leaves the seriously afflicted without recourse and ties the hands of doctors to treat the way they feel is most effective. Doctors who choose to treat patients with long-term antibiotics can face consequences including censure by local medical boards.
“If you give me my brain back, I’ll fight to solve the problems you face.”
Green began to search for a doctor, and with each one she met, she made the same promise: “If you give me my brain back, I’ll fight to solve the problems you face.” Ultimately, Green found two so-called “LLMDs,” or Lyme-literate doctors, in Dr. Joseph Jemsek (who was, in fact, eventually represented by Green) and Dr. Kenneth Singleton, author of The Lyme Disease Solution.
On and off for 20 months, Green underwent intensive, intravenous antibiotic treatment, twice a day, several days a week. She also drove to Annapolis to use a hyperbaric chamber for 72 straight days, a therapy believed to have a curative effect on those with Lyme.
She has no doubt the treatment saved her life. And when she gradually began to feel better, she was, in her words, “really, really pissed off,” both at the doctors who didn’t tell her the Lyme test could yield a false negative and at those organizations who had hamstrung the doctors trying to treat her.
She now has three passions in her life: her 16-year-old son, law, and Lyme advocacy. She has made good on her promise to doctors who helped her, having represented many up and down the East Coast to protect them from scrutiny by medical boards.
Green is active with National Capital Lyme and Tick-Borne Disease Association (NatCapLyme), where she’s currently legislative counsel. Together, they wrote Bill 1933 in the State of Virginia that requires doctors to provide patient information about the shortcomings of the Lyme test. Green says they opted to push the bill through in Virginia because it’s a more Lyme-literate state than Maryland, but that it was still “one of the hardest battles I’ve ever fought in my entire career.” She’s organized fundraisers for NatCapLyme, speaks all over the country, and will present at this year’s annual ILADS conference.
“If I could sum Susan up in one word, it would be ‘tenacity,’” says Monte Skall, executive director of NatCapLyme, whose mission is to improve education and public awareness of Lyme, as well as improve patient lives. And, Skall adds, Green never lets her illness keep her down. “She’s vivacious and very committed to this cause.”
Increasingly, states like New York and Vermont are proposing laws to protect doctors who prescribe long-term antibiotics. Green is working on her own bill to protect a patient’s right to elect long-term treatment and to protect that doctor from prosecution.
Today, Green is feeling better. She still takes oral antibiotics when she’s pushed herself too hard and knows she’ll never be completely well. She finds that exercise helps (mostly weight-lifting since she can no longer do cardio) and a healthy diet. After going through what she calls her “goldfish period,” when she could only look out at the beauty surrounding her Worthington Valley home through a window, she’s now getting out more, though always with a combination of DEET spray and all-natural tick repellents. She hopes that, one day, doctors on both sides of the Lyme debate will shelve their biases and come together in a spirit of collaborative research to create a more effective, early-detection test. While she also believes in the efficacy of long-term antibiotic treatment, she won’t say it is the answer.
“I want the doctors to be left alone, to have the right to treat their patients as they feel appropriate,” she says. “So long as they do no harm, they make full disclosure about the risks and benefits, keep good records, and provide good patient care, I think they should be free from interference by medical boards.
“And until we know exactly what treats this disease . . . I think the patient has to have the right to make those decisions.”