Chronic Lyme disease dismissed by many
Editor’s note: This is the second 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 — Lyme disease has been around for almost 40 years, yet despite thousands of cases, including many deaths, chronic or long-term, debilitating Lyme disease has become one of the most controversial medical issues of our time.
Patients charge a web of deceit woven within the policy-making faction of the medical community, who are accused of partnering with major health insurance companies to dismiss chronic Lyme as a non-disease in order to keep claims down and save money. But medical boards across the country are adhering firmly to the guidelines set by the Infectious Diseases Society of America, which holds that not only is acute Lyme disease hard to get and easy to treat with four weeks of antibiotics, but that chronic Lyme does not medically exist.
Most doctors and the American Medical Association strictly adhere to those guidelines as well. As many have discovered, their professional lives depend on it, and doctors who choose to treat chronic Lyme often face having their medical licenses suspended and being dropped by major medical insurance carriers.
This ongoing controversy is why it is so difficult to find a doctor willing to treat chronic Lyme disease.
It all began in 1975, when a Connecticut housewife noticed that all of her neighbors in Lyme, Conn., were experiencing arthritic symptoms and fatigue.
By 1977, the first 51 cases of Lyme arthritis were described, and the Ixodes scapularis (black-legged) tick was linked to the transmission of the disease. During 1982, Borrelia burgdorferi, the bacteria that causes Lyme disease, was first identified. In 1987, Lyme disease became a reportable disease, and all Connecticut doctors were required to report any and all cases of the disease. By 1988, the news of Lyme disease spread and national media picked up the story. The first federal funding for Lyme disease surveillance, education and research became available in 1991. The first Lyme disease vaccine became available in 1997.
Yes, there was a vaccine called Lymerix, but manufacturer GlaxoSmithKline withdrew it from the market in 2002 citing poor sales. A Feb. 28, 2002, New York Times article reported, however, that Lymerix had $40 million in sales its first year on the market, and hundreds of thousands were vaccinated.
That same year, the vaccine efficacy study ended, and Lyme disease was removed from the list of laboratory reportable findings; however, it remained a physician reportable disease.
But despite having a name, a pathology and thousands of patients, Lyme is still at the center of one of the largest medical controversies of the modern age. The 2008 film documentary “Under Our Skin” about chronic Lyme was screened at the Brandon Town Hall this spring in front of an audience of 125 people. The film follows patients from all walks of life through their quest for treatment. They talk of doctors telling them that “it’s all in their head,” that they need therapy, that they are hypochondriacs. Many of those in the audience, local people who either know someone with chronic Lyme or suffer from the disease themselves, can relate.
In the film, patients also talk of countless misdiagnoses. The nickname for chronic Lyme disease is “the great imitator” because it is often misdiagnosed as another condition such as multiple sclerosis, fibromyalgia, chronic fatigue, ALS, Alzheimer’s disease, or anxiety.
WAY OUT OF POCKET
And not only are Vermonters traveling hundreds of miles out of state to find “Lyme literate” doctors for treatment of chronic Lyme, they’re paying dearly for it.
“Even with insurance, we’re paying $8,000-$10,000 a year out-of-pocket for Luke’s treatment,” Rebecca Zelis of Brandon said. Like many children with Lyme, her 10-year-old son Luke struggled with behavioral issues like attention deficit disorder and obsessive compulsive disorder as his Lyme disease began to manifest at the age of three.
Maddy Erb and her husband, Jackson Whelan, have both been diagnosed with Lyme. Whelan, 33, was diagnosed in 2010 after spending hundreds of dollars on more sophisticated tests that his insurance would not pay for. For Erb, 37, it was a decade from the time she was bitten by a tick in 2000 until her diagnosis. While Whelan’s Lyme is under control thanks to a 10-month course of antibiotics, for Erb it has been more of an uphill battle thanks to a stroke of bad timing. Whelan had been seeing Dr. Jeff Wulfman at Neshobe Family Practice in Brandon, a Lyme specialist that consultation patients from all over the Northeast would travel to see. Each visit cost the couple $175 each out-of-pocket. But Wulfman stopped seeing his Lyme patients last fall and left the practice in January, leaving hundreds of Lyme patients to look elsewhere for treatment.
After doing one course of antibiotics through Wulfman, the couple discovered black mold in the upper level of their Pittsford home. Thinking that perhaps that was contributing to her health problems, Erb went off the antibiotics while they had the mold removed and renovated part of the house. But before she was able to go back on antibiotics for another course, Wulfman had stopped his Lyme consultations.
“We felt so lucky to have him as a doctor,” Erb said. “I would always ask him and joke about what would happen if he left, and he’d always laugh and say, ‘Don’t worry.’”
While Wulfman has declined to discuss his decision to leave Neshobe Family Practice, or why he no longer sees chronic Lyme patients, Whelan and Erb have a theory. They believe that, like so many doctors spotlighted in “Under Our Skin,” Wulfman was likely trying to preserve his medical career.
“We know that he was conflicted daily in his office,” Erb said. “His medical partners disagreed with the concept of prolonged, chronic Lyme disease.”
“Wulfman was a square peg in a round hole,” Whelan added. “Our symptoms can change on a daily basis, the office staff was not equipped to handle that, and they were probably annoyed by it. We always felt persona non grata.”
GREEN MOUNTAIN STATS
As our landscape and our environment changes in the Green Mountain State, so does the level of tick infestation. Changes in land use in Vermont and an increase in the deer population are some of the reasons for the explosion in the deer tick population. The once clear-cut Vermont landscape more suited to grazing landscape has grown up and filled in, creating a perfect habitat for ticks.
Then there is the warming environment. Even if you disagree that climate change exists, Vermont has seen milder winters and warmer, earlier springs. The same can be said for Connecticut and Massachusetts. According to the Vermont Department of Health, the number of reported Lyme cases has steadily increased since 2005. In 2011, there were roughly 600 reports of people with Lyme disease who were likely exposed in Vermont.
The number of confirmed and probable human cases reported climbed from 105 cases in 2006 to 623 cases in 2011.
According to the VDH website, most Lyme disease occurs in residents of the four most southern Vermont counties. Although Chittenden County also has a large number of cases, when adjusted for population size, the four southern counties have the highest number of cases per 100,000 people.
“An increase in infected tick populations, better recognition and reporting by healthcare providers, and habitat and environmental changes may account for the high number of cases reported in the Green Mountain State,” the VDH website says.
HOPE SPRINGS AS DEBATE RAGES
Maddy Erb got lucky. Despite the setback, she found a new doctor, an eminent chronic Lyme specialist, Dr. Richard Horowitz. The only problem was, Horowitz’s clinic is in Hyde Park, N.Y., over 200 miles away in the Hudson Valley.
Now, once every six weeks, Erb and Whelan make the six-hour round trip to see Dr. Horowitz, but Erb feels good about her care.
“I feel he’s the best for me,” Erb said. “He looks at allergens, molds, bacteria … I actually feel I have more information and better care than I’ve received in the last two years.”
Whelan was quick to add that nothing against Wulfman, but Horowitz’s entire practice is centered around diagnosing and treating chronic Lyme.
“He has an entire staff dedicated to this,” he said.
Still, Erb currently spends over $200 a month on vitamins and supplements. On top of that, Horowitz does not accept insurance, so he is not beholden to it. Erb paid $1,050 for the initial intake, then $375 for the second visit, and now $225 for each visit after that.
Despite the cost, she is more hopeful than ever.
“This is the only way to be sure that my treatment is based on what me and my doctor believe is best, not what’s profitable for my insurer,” she said. “I’ve got many, many months of hard work ahead of me, but at least I’m not without a guide on this journey.
“It’s frustrating to have lost so much ground in the battle because of lack of care here in Vermont,” she said. “I’m one of the lucky ones; I have a flexible job, retirement savings to deplete, and a supportive family. There are many people that don’t have these options.”
Because of his wife’s uphill battle for treatment, as well as his own, Whelan started the website www.vermontlyme.org, to help tell their story as well as others’, and to share information as chronic Lyme patients across Vermont push for change in diagnosis and treatment guidelines.
“There has got to be a better way of treating these people other than denying that chronic Lyme exists,” Whelan said.
STOP THE BITE
The best way to prevent Lyme disease is to prevent tick bites. It is important to take measures to prevent exposure to ticks and reduce the risk of contracting Lyme disease. The Vermont Department of Health recommends the following preventative actions:
• Wear light-colored clothing with a tight weave, so you can spot ticks easily.
• Wear enclosed shoes, long pants and long sleeves. Tuck pant legs into boots or socks and shirt into pants.
• Apply insect repellent containing DEET or permethrin, following label instructions carefully.
• Avoid sitting on the ground or on stone walls.
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