September 17, 2008
Tick-Ing Time Bomb
By MEREDITH GOAD
Hazel Raby was surprised when she saw that "Under Our Skin," a dramatic new documentary about the controversial diagnosis of chronic Lyme disease, was making the rounds of film festivals across the country but not appearing in any Portland theaters.
Raby, who lives in Round Pond, arranged for the film to be shown at the Space Gallery, 538 Congress St., at 7:30 p.m. this Thursday. Then she invited a dozen physicians to the screening - all doctors she has seen herself.
Raby has had symptoms of Lyme disease for 14 years, and like the people profiled in Andy Abrahams Wilson's film, believes she has a chronic form of the illness that's being dismissed by the mainstream medical community.
"The average Lyme patient sees 15 doctors before they are diagnosed," Raby said. "My laundry list of people I saw was incredible, from psychiatrists to neurologists. It just kept going.
"I encourage physicians to see (the film) because treated early, it's curable. Left undiagnosed and untreated, it's not. It becomes a chronic lifelong condition that you wrestle with."
Following the screening will be a panel discussion featuring Raby; Dr. Beatrice Szantyr, a Lincolnville internist and pediatrician who has studied the issue for 14 years and is a member of the state's "Vector Borne Disease Workgroup"; and Constance "Happy" Dickey, who worked as a registered nurse at Eastern Maine Medical Center in Bangor for 25 years until she contracted Lyme disease. Dickey, now disabled by her illness, facilitates support groups in Maine for people suffering from chronic Lyme, including an online support group that has more than 200 members.
"Under Our Skin: The Untold Story of Lyme Disease" will also be shown at the Camden Film Festival at 6:30 p.m. Sept. 27 at the Strand Theater. Andy Abrahams Wilson, the director of the film, will be on hand afterward for a question-and-answer session with the audience.
The diagnosis and treatment of chronic Lyme disease has become something of a hot potato in the medical community
Many doctors believe the symptoms these still-suffering patients are experiencing are due to some other chronic ailment, or a catch- all diagnosis known as "post-Lyme syndrome." The mainstream view is that Lyme is hard to catch and easy to treat with a short round of antibiotics.
"Under Our Skin" argues that Lyme can turn into a debilitating chronic illness that, at least in some cases, appears to respond well to long-term antibiotics. But the disease has become so politicized, the filmmakers claim, insurers and physicians are ignoring a growing public health issue in order to save money on long-term treatments and their reputations.
A doctor in the film compares the situation with chronic Lyme to the early days of the AIDS epidemic: a complicated disease that is spreading rapidly, needs open-ended treatment, and is being overlooked by the established medical community.
The film follows several patients' stories, including a physician who ended up in a wheelchair, an event producer who travels with the rock band U2, and a national park ranger who was in so much pain he considered ending his life.
The film portrays Lyme as a bewildering illness that comes and goes, affecting different parts of the body at different times. Many of the patients interviewed have been told they have other chronic illnesses, such as lupus, fibromyalgia or multiple sclerosis. Others have been told their problems are all in their head.
"That's the thing about Lyme," Raby said. "It mimics everything."
Raby believes she contracted the disease in 1994 on her mother's horse farm in New Jersey, which was in a high-risk area for Lyme ticks. Raby never saw a tick or a rash on her body, but later tested positive for Lyme antibodies.
Her symptoms began with a stiff neck, followed by headaches and stomach pain.
"I had a change in smell and taste," she said. "My eyes became extremely sensitive to light. I woke up one morning and I was having a panic attack, and I had never had one before."
TRYING TO GET AN ANSWER
Six months later, she started having joint pain. Then came chills and night sweats, which she thought might be malaria since she had just spent some time in Guatemala. The symptoms continued to migrate around her body.
"It was very bizarre," Raby said. "That went on for four years - me running in and out to the emergency room, to the doctor, to the clinic, trying to get an answer. I saw quite a few specialists."
At times she was told it was all in her head, and that if she took antidepressants, her problems would go away.
Szantyr, one of the physicians who examined Raby, has heard similar stories from other Mainers.
"I get calls virtually every day from people who are ill with something, and they believe it to be late-stage Lyme disease," she said. "Are all of those people suffering with Lyme? No, probably not. But some of them will turn out to be."
Maine reported 529 new cases of Lyme disease in 2007, a 57 percent increase over 2006. The state ranks 12th in the nation in the number of reported cases.
"Ticks are noticeably increasing," Dickey said, "and they're in places people have never seen before, and they're in numbers we haven't seen before."
The highest risk of infection occurs in the summer, when the nymphs of deer ticks - the tick that carries the Lyme disease bacterium - are out looking for blood meals. But deer ticks can be active any time the temperature goes above 36 degrees Fahrenheit, Dickey said, and any ticks discovered in the fall are almost certainly deer ticks.
Dickey said she has seen whole families in Maine that are affected by the disease. In her own case, it took five years to get a diagnosis.
"I am disabled, but I'm a lot better than I was," she said. "I still take antibiotics, and when I stop taking them, I get sicker."
Dickey said there are only a handful of physicians in Maine who will prescribe long-term antibiotics, mostly because they have seen their patients recover after starting them. But other Mainers end up leaving the state for treatment.
The use of long-term antibiotics can have serious side effects, and most medical organizations caution against their use long-term for that reason. Raby tried it, but had some problems and now uses antibiotics only for emergencies.
In "Under Our Skin," doctors who offer long-term antibiotics or otherwise become known as "Lyme friendly" are threatened with the loss of their medical licenses.
"Long term antibiotics are no joke," Szantyr said. "Everybody knows that every decision we make is a weighing and balancing of risk versus benefit, so you have to do all of the things that are required to make it the safest experience you can for any individual embarking on any kind of treatment.
"And that means that you treat and you reassess, and you make sure that you don't have blinders on in any direction. Blinders that tell you that this is never Lyme disease are as bad as blinders that only see Lyme disease."
Staff Writer Meredith Goad can be contacted at 791-6332 or:
HERE ARE SOME Lyme disease prevention tips from the Maine Center for Disease Control and Prevention:
WEAR LIGHT-COLORED CLOTHING (spot ticks easier) with long- sleeved shirts and pants.
CREATE AN EXTRA "no tick" zone by tucking your pants into your socks and you shirt into your pants.
USE INSECT REPELLENT (with DEET) on your skin and apply permethrin (kills ticks on contact) to your clothes. For information on other recommended repellents, go to: www.cdcgov/ncidod/dvbid/ westnile/RepellantUpdates.htm.
CHECK YOUR CLOTHING and skin carefully after being outdoors in likely tick-infested areas and remove ticks promptly.
WASH AREA of any possible tick bites thoroughly with soap and water, and apply an antiseptic to area of the bite.
MARK ON A CALENDAR the date that you were bitten, then watch yourself for signs of Lyme disease or any changes in your personal health every day for the next month.
KEEP YOUR LAWN MOWED, cut overgrown brush and clear away leaf litter from your home.
INSPECT ANY PETS daily and remove any ticks found.
IF YOU GO
WHAT: "Under Our Skin: The Untold Story of Lyme Disease"
WHEN: Doors open at 7 p.m., film at 7:30 p.m. Thursday.
WHERE: Space Gallery, 538 Congress St., Portland
HOW MUCH: $7; $5 for Space members
MORE INFORMATION: www.space538.org or
Hazel Raby likes to take long walks in the meadows and woods surrounding her home, but she must protect herself against re- infection from Lyme disease. Here's how she does it:
She wears white or light colors and always tucks pants into boots. Light clothes make it easier to spot ticks.
When she comes inside, she immediately removes her clothes and puts them in the dryer for 10 minutes on high. Ticks die when exposed to extreme dry heat. Then she does a check of hard-to-see body areas using a hand-held mirror.
She uses natural repellents such as Naturpel or rose geranium oil on skin, and sprays boots and pants with a product called Repel that is good for three weeks or two washings.
She applies a repellent to her dogs and checks them for ticks after every walk.
Originally published by By MEREDITH GOAD Staff Writer.
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