Editor’s note: This is the first in a series of articles reprinted from The Brandon Reporter that examine the complex personal, medical and political landscape of chronic Lyme and other tick-borne diseases that have brought so many lives to a standstill waiting for consensus.
BRANDON/PITTSFORD — Luke Zelis and Maddy Erb are very different people. Luke is 10 years old, lives in Brandon, has shoulder-length honey brown hair, sports an infectious grin, and likes cartoons. Maddy is 37 and married, loves dogs, and works as a landscape architect from her home in Pittsford.
But the one thing they share is the one thing they desperately want to be cured of — chronic Lyme disease.
“Almost my whole life has been like this,” Luke said during a recent visit to his house on Rossiter Street. His mother, Rebecca Zelis, sits with him on the couch. He brings out his “Sad, Sick, Mad Book,” a journal he started keeping when he was younger. There is one page where, at six years old, he describes what it’s like to have Lyme disease, grammatical errors and all.
“Having lime is so tireing,” Luke wrote. “You just can’t get out of bed. Wen you see kids playing you get deprest (p.s. you can’t play Wii).”
There are hundreds of other Vermonters like Luke and Maddy who suffer from chronic Lyme and other tick-borne illnesses, and the issue is as timely as ever. But an ironic schism has occurred across the Green Mountain State. A warming climate has led to an explosion in the deer tick population across the Northeast and, by default, an increase in the number of people contracting Lyme disease and other tick-borne illnesses. At the same time, due to a polarization within the medical community over the existence and classification of chronic Lyme, as well as a disagreement over treatment, finding a doctor in Vermont willing to treat Lyme disease can be difficult.
In the Vermont Legislature this spring, two bills intended to strengthen treatment options for chronic Lyme sufferers and educate doctors about the disease failed to see daylight. However, the House Health Committee before the session ended last month penned an important letter to state Health Commissioner Dr. Harry Chen, urging him to adopt new state policies to educate physicians on the various approaches for the proper testing for, diagnosis of, and treatment of Lyme disease and other tick-borne illnesses, and to require doctors to report each case of diagnosed Lyme disease. The committee also urged Chen to track ongoing research and best practices in diagnosis and treatment, and to update the department’s website to include comprehensive information that both reflects changing practices and provides education for the public on Lyme disease and other tick-borne illnesses, as Massachusetts, New Hampshire, New Jersey, and New York have already done.
LIFE ON PAUSE
Maddy Erb was having a perfectly fine life until she was bitten by a tick in 2000 at the age of 24 while working at the Storm King Art Center in New York’s Hudson Valley. She discovered the bite, was treated with short-course antibiotics and thought the illness was behind her. But over the next decade, Erb started suffering a myriad of seemingly unrelated physical ailments: muscle spasms, acid reflux, post-nasal drip, fatigue.
“I was pegged as a hypochondriac,” Erb said. “The doctors couldn’t seem to find anything ‘wrong’ with me.”
Erb’s husband, Jackson Whelan, also suffers from Lyme and has become an activist for the cause. A web developer, Whelan created the website www.vermontlyme.com as a clearinghouse for Lyme-related news and information, as well as a place for Vermonters with Lyme to share their stories and experiences.
“We’re not here for sympathy,” Whelan said during a recent interview at their home in Pittsford. “We’re here for answers. I would never wish this on anyone.”
Erb works from home for a landscape architect in Pleasantville, N.Y. She works from home because Lyme has made it impossible to leave her house regularly for work. Over the last three years in particular, Lyme has affected her immune system, making her susceptible to infections, cold and flu. She is often fatigued and there was a time when she had to stop driving altogether because of double vision. She has trouble remembering things in the short-term, and constantly jots down notes to herself to remember things she has to do.
A tabletop on the porch is covered with the antibiotics, supplements and vitamins that Erb takes every day to fight off the Lyme and keep herself functioning, but she said the disease has still robbed her of what should be a highly productive period in her young life.
“It’s depressing to see my friends move on with their lives, and I just hit the ‘pause’ button for the last three years,” she said. “It’s hard not to be depressed, but honestly, every day it’s one foot in front of the other. Thank goodness we don’t have kids, because I don’t know how I would have done that.”
MOVING TARGET
It’s exhausting just being the parent of a child with Lyme disease and not having the illness yourself. Ask Rebecca Zelis, Luke’s mom. When Luke was three, he started acting out and developing tantrums, obsessive-compulsive behavior and attention deficit hyperactivity disorder. Then he developed double vision in one eye, and lost his peripheral vision. But it wasn’t until he was seven that he was diagnosed with Lyme disease, which often manifests behaviorally in children. Luke was put on antibiotics.
“Within a week, all of his symptoms went away,” his mom said.
But Lyme is a moving target, and symptoms appear and disappear randomly without notice. During one period when Luke was sick, Rebecca said he was standing in the living room.
“He said he had to go to the bathroom,” she recalled. “And we said, ‘O.K., go ahead.’ And he just stood there. We asked him what was wrong and he said he couldn’t move. He was so weak, he couldn’t walk to the bathroom, so we picked him up and carried him in there.”
Like Maddy Erb, Luke’s immune system is extremely fragile due to Lyme disease, and Rebecca and her husband, Mark, take precautions to keep him healthy. There was one period early on when Luke was particularly susceptible.
“He couldn’t have a cold without it turning into pneumonia,” Rebecca said. “He couldn’t get a scratch without it turning into this infection where he had red streaks going up his leg.”
Yet Luke didn’t test positive for Lyme using any of the standard tests.
MORE COMPASSION, LESS JUDGMENT
Maddy Erb and Luke Zelis will both say that Lyme disease has not only affected them, but the lives of those they love.
For Luke’s mom, Rebecca, it led to the difficult decision to close her custom jewelry shop, Adornment, on Center Street in Brandon last year. She would often have to close the shop early or open late because Luke needed to stay home or get picked up early from school. His symptoms were so unpredictable, it was impossible to keep regular store hours.
“People would leave notes that said, ‘You’re never open’ or ‘This is the third time I’ve tried to come here,’” she recalled. “Only one person in two and half years asked ‘Why?’ I would encourage people when they encounter someone who is not performing at their best, not to judge so harshly.”
Zelis said her family has struggled socially as well, as the behavioral issues that accompany Lyme in children can be off-putting.
“The behavior isolated us as a family,” she said. “Looking back, we found out who our real friends were.”
Zelis said not everyone was as understanding when she had to cancel plans again and again because Luke “wasn’t having a good day.”
“Luke’s situation has taught me to see the child through the behavior,” she said. “A lot of people see the behavior and think that’s the child.”
LOCAL HERO
Up until September 2012, Vermonters had at least one physician they could go to to treat chronic Lyme and other tick-borne illnesses. Another thing that Maddy and Luke had in common was that they were both patients of Dr. Jeff Wulfman at Neshobe Family Practice in Brandon
Area Lyme patients describe being under Wulfman’s care as akin to “winning the lottery.” By all accounts, Wulfman was treating hundreds of chronic Lyme patients, some whom traveled across state lines to see him.
“It was like finding Michelangelo at the Santa Monica Pier doing airbrush portraits,” Whelan said. “We felt so lucky to have him as a doctor because we would read about so many people who didn’t have a doctor that would treat them and who travel hundreds of miles to be treated.”
Now, it’s Dr. Wulfman’s patients who are scrambling and driving hundreds of miles for treatment of their chronic Lyme disease. Last September, Wulfman’s consultation patients received a letter from the doctor saying he was taking a three-month leave of absence. When his leave was over, he would be opening a clinic in Middlebury “sometime in the coming months.”
Then in December, Wulfman’s patients received another letter from Neshobe Family Practice, saying that Wulfman had left the practice permanently and would be seeing primary care patients only via Mountain Health in Bristol. It also made clear that the other doctors at Neshobe would not be treating Lyme patients.
Contacted for comment on this issue, Wulfman declined to do an interview about his reasons for leaving Neshobe Family Practice, saying only this:
“I went from doing full-time primary care and consultation of patients with chronic complex illness, including tick-borne disease,” he said. “I’m now doing part-time primary care only for both personal and professional reasons, and I’ll leave it at that.”
Erb and Whelan now travel 250 miles to Hyde Park, N.Y., as patients of Dr. Richard Horowitz, a leading physician in the treatment of chronic Lyme.
As for Luke, his health has been good. He has been off antibiotics for 18 months and is on a balanced regime that includes Chinese herbal supplements, plenty of sleep, and no gluten, sugar or dairy. Still, his parents are prepared for the next flare-up of symptoms, which they know will come again, and in the meantime are hoping the medical establishment will adjust to the needs of a growing population of chronic Lyme patients
“There is a lot of judgment,” Rebecca Zelis said. “We’re operating in a system that does not support us. Medically, educationally, and culturally, there needs to be more room for all people struggling with Lyme.”