Kristen Kusama-Hinte arrived on-Island in early June. A couple of weeks later, her son had a fever. She tended to him, sleeping on the floor by his side. She checked her own and discovered a 100-degree temperature and didn’t pay much attention. She got a stiff neck and again didn’t pay much heed. When a terrible headache hit, she knew something was wrong.
She thought she was being assaulted by a horrific flu, until part of her face became paralyzed. “I was completely immobile,” she recalled. “All I could do was moan and groan.” The pain, she said, was worse than two bouts of natural home births. When she noticed a small rash on her arm, she finally went to the clinic and was diagnosed with acute Lyme disease. She was treated with the antibiotic Doxycycline, and symptoms subsided, but her doctor wouldn’t answer her most pressing question, “Am I cured?” “She kept saying, ‘You got the Lyme and you’re treating it,’” she said. “I wanted to know I was not dealing with a chronic disease.”
There is a continuing debate over the existence of chronic Lyme. But people like Sue Rhuby of West Tisbury say it is real, something they live with every day. Ms. Rhuby is a member of the Lyme Disease Support Group on the Vineyard. She was first diagnosed with chronic Lyme in 2010, but she had been feeling its effects for seven years. In the meantime, amidst a host of aches and pains, including a “chisel in my back” feeling that caused her to visit the chiropractor three times a week, sometimes three times a day, she was diagnosed with lupus. But she’s now confident she’d been suffering from Lyme all along. In the absence of doctors with answers, she has taken responsibility for her own health. “You have to educate yourself about the problem you have,” she said. “It’s your body, and you know your body best.”
The support group, headed by Enid Haller, a PhD in clinical psychology, provides information and emotional support to its 150 members. For most, after experiencing the effects of a particularly isolating disease, the support group helps them feel heard.
“I think it feels really good for people to talk to other members of the group and feel heard,” said Phoenix Becker, one of the support group’s organizers.
As group members told their stories Wednesday night in West Tisbury, their voices were met with understanding groans of solidarity. They discussed doctors, treatments, anxiety, depression, misdiagnosis. “I feel like I have been run over by a fatigue bus,” a woman from Danvers said, and everyone agreed it’s a good way to put it. As Nick entered the room, he dragged his feet. “I’m doing the Lyme shuffle,” he said, and everyone laughed. The crocs, work boots, hiking boots, Tevas and leather sandals identify them as people from different sectors of society — but the isolating experiences they’ve shared bring them together. They agree on many things—that pain is worst in the morning, for example. But they disagree over whether it’s okay to resort to painkillers. They avoid hospital-bashing for the most part, but sometimes they can’t resist: They feel ignored and unheard by the medical establishment.
Twenty-one members came to the meeting. The group functions much like a referral service. A new group member presents her case, eliciting audible compassion of the people sitting around her, and Ms. Haller suggests a next step. She’s done her research, aided by Ms. Becker, so rarely does a treatment come up that she hasn’t heard of. She keeps a short list of doctors whom she refers to as “Lyme-literate”—the majority of whom do not accept standard insurance plans, but against the doctors who take advantage of people’s desperation. “I don’t mean to call them quacks or whatever,” she said. “But it’s important for people to hear in the group that you have to be careful. Some charge a lot of money.”
But Ms. Haller also acknowledges that some treatments work for some people and not others. Her endorsements are based on the personal experiences of support group members. “We have taken it into our own hands to find our way through the medical system,” she says. Ms. Haller also offers to look at group members’ test results, because she believes some doctors aren’t adequately equipped to read the tests.
Many support group members’ mistrust in medical doctors has prompted them to take on their own illness. Some say they feel they are being forced to doubt their perception of their body. John Casey, of Oak Bluffs, has experienced intense cramping in his hands and feet, joint soreness, and short-term memory loss, among other symptoms, for more than a decade. He saw many doctors over the years, but said none had a clear idea of what caused his pain. One diagnosed him with psychosomatic illness, another said it was fibromyalgia. Finally, he said, they just treated him for the pain. He took vicodin, oxycontin and oxycodon, and finally, methadone. But everything changed when he met Ms. Haller. “In about seven minutes of talking to Enid, she said, ‘John, you probably have Lyme,’” he recalled. “That’s how quickly she got to the heart of it.” He sent for the $470 panel Igenex test and it came back positive for Lyme. After several months of antibiotics, a recent relapse caused him to seek other options. He now takes carnivora, a Venus flytrap extract that is intended to excite the immune system. But he’s still in pain, and still relies on methadone to lead a normal life. When he wakes up, his entire body is in pain, he said.
Ms. Becker got sick with what she suspects is Lyme when she was eight years old, in August of 1988. As a child growing up on the Island, she enjoyed playing in the woods and picking wild blueberries. But when she got sick, she stopped participating in after-school sports, due to fatigue, and was taunted by friends. People also criticized her parents, blaming them for Phoenix’s condition.
She struggled for two decades to get a diagnosis that fit her symptoms. “It seemed like every doctor I saw didn’t think there was anything wrong with me,” she said. For a while, doctors insisted she had rheumatoid arthritis, but every test she took came back negative. Doctors also suggested it might be multiple sclerosis, or blamed symptoms on her Type 1 diabetes. Now she sees a neurologist who treats what the doctor calls Lyme with an extended regimen of intravenous antibiotics — she’s been on Rocephin for over a year. “Within a couple of days of starting it, my family could really tell a difference in me,” she said. “I was speaking a lot faster and my gait really improved.”
Due to its prevalence on the Island, many of those who believe they suffer from lasting effects of a tick bite say that Islanders’ (and visitors’) approach to Lyme must change. “It requires a real shift in thinking,” Ms. Becker said. “A lot of people think they love nature, want to spend time in nature, feel like nature would never hurt them. When they get bitten by a tick, it really shakes their reality.”
Much of the information shared at the support group regards preventative measures. They discuss strategies like putting up mesh fencing to enclose their yards, using DEET and keeping their lawn mowed. “I don’t care what they spray,” said a man whose biggest concern is protecting his three-year-old daughter. “It could be agent orange,” he said, as long as it protects his family against Lyme.
But even after dealing with what they think is Lyme for decades, patients like Ms. Becker remain hopeful about their prognosis.
“It’s important for people to know that they can get better from Lyme,” said Ms. Becker. “A lot of people give up on getting better but it takes patience and persistence to get better. It can take a couple of years of treatment to make a full recovery.”
“Everyone thinks we’re nuts, by the way,” Ms. Haller said, nearing the end of the three hour meeting. “I prefer to say we think out of the box.”
The Lyme Disease Support Group is held at Howes House in West Tisbury at 6:30 p.m. on the first Wednesday of each month.