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The Alarming Truth About Lyme Disease
By Mary Lou Baker

Marilyn Williams owned and operated a million-dollar business selling antiques and collectibles before a tick bit her in 2002 near her home on Fawns Walk in the Woods Landing community near Annapolis. Today she describes herself as a "totally changed person . . . unable to concentrate" and feels fate has robbed her of her former vibrant self. Her husband, John, says Williams, has been "incredibly supportive."

Mary Byrd Brown, a talented and popular Annapolis-based folk singer-songwriter, is still deep in the throes of recovering from the same debilitating disease, which has put her life on hold since 2002. Sapped of the high energy that made her such a star, she works bravely to overcome the damage to her spirit as well as her body.

Each of these women could write a book about the disease and the toll it takes on the soul. But though they have the time and the inclination, they don't have the energy.

Williams, though feeling much better these days, says simple tasks like brushing her teeth or climbing stairs are painful. She has sold her business and recently discovered a talent for photography, winning first place in the What's Up? Annapolis photography contest (May 2006).

Brown, an Annapolis-based nationally touring performer with five albums to her credit, had reached a pinnacle in her career when the disease struck. Their stories are alike in terms of the delayed Lyme disease diagnosis that permitted the bacteria to infiltrate their immune and neurological systems. Brown, who grew up in a wooded area of Maryland, thinks she may have been infected for years, displaying various misdiagnosed immune system-related conditions that were Lyme disease all along.

And both are evangelical in their efforts to educate the public as well as the medical profession about Lyme disease. Brown has a Web site (www.marybyrdbrown.com) so poignant you can almost feel the pain behind the simply stated chronicle of her experience. A relationship with the "love of her life" deteriorated as a result of her illness, and she now lives alone, depending on friends for assistance. Dick and Judy Crane, a couple from Cape St. Claire, raise funds from her many fans to help pay for medical costs-as well as food and heating bills.

Brown's quest for healing has led her to doctor of acupuncture Ross Stark, who treats post-Lyme disease syndrome and advanced stages of the disease when conventional protocols are not effective. For a while, she was treated with acupuncture weekly in his Annapolis office and experienced positive results. Brown also gives a "huge hats off" to psychospiritual therapist Abby Rosen, PhD, director of InnerSource, Inc., in Annapolis. "Abby is learning a lot about Lyme disease and is becoming familiar with the emotional-neurological struggle that many of us face day to day," she says.

"I have only written a handful of songs during this hiatus, but they feel somehow more substantial, authentic, and meaningful compared to what I've written in the past. This experience of finding my way through healing and recovery is enriching the stories I am telling through lyrics and strings." -Mary Byrd Brown

Williams has also sought help from both traditional and nontraditional healers. She recently attended a Lyme disease conference in Columbia, Maryland, where she met Kenneth B. Singleton, MD, a specialist associated with National Integrated Health Associates. Getting an appointment took 4 months, but she felt the wait was worth it when she was finally diagnosed with the disease-a condition that had been ruled out by other doctors on the basis of what she considers a hopelessly outdated test.

Dr. Singleton prescribed a drug called Levaquin, which in 2 weeks caused a remarkable change in condition. "I felt we were winning the war-but then I couldn't move my right arm." Her doctor suspected she had a ruptured tendon, one of the side effects of the medication, a diagnosis confirmed with an MRI administered in the office of an Annapolis orthopedist.

That was nearly a year ago. She is presently encouraged by a holistic program that focuses on a combination of herbal medicines and purified water and is taking a medication from the Netherlands that she says has helped her over the past month. Williams continues to see Dr. Singleton and believes she is making progress, though she still has "good days and bad days," often dictated by the weather.

Richard N. Peeler, MD, who retired in 1996 after a distinguished career as a popular Annapolis internist and specialist in infectious diseases, vividly remembers his first case of Lyme disease, in the early 80s. The patient had contracted it in Old Lyme, Connecticut, such a hotbed of the disease that the lovely town's name has become infamous. Caused by the bacterium Borrelia burgdorferi, the disease is transmitted by the bite of infected blacklegged ticks. Typical symptoms are fever, headache, fatigue, and a characteristic skin rash.

"When we first began to see Maryland-acquired cases, they were all from the Eastern Shore," recalls Peeler. "The first really local cases occurred in the Sandy Point-Cape St. Claire area." It wasn't very long, however, before he began to see cases from all over Anne Arundel County and other parts of Maryland. Peeler's theory is that some infected ticks hitch a ride to Sandy Point on an Eastern Shore deer, and get to the Western Shore that way. While he hasn't seen statistical distribution maps, he strongly suspects that there is still a higher concentration around the Bay on both shores.

Alarming Statitics Statistics provided by the Anne Arundel County Department of Health show 74 confirmed cases of Lyme disease reported in 2004, 117 in 2005, and 11 for the first 3 months of 2006. They show that Anne Arundel County was fourth in the number of confirmed cases in Maryland, following Montgomery (234), Howard (155), and Carroll (142) counties. The U.S. Centers for Disease Control and Prevention recorded 1211 cases in Maryland last year, with a total of 21,304 cases throughout the United States. These statistics are provisional, since not all cases are reported, and thus counted in the study. According to Elin Jones, public affairs officer for the Anne Arundel County Health Department, laboratories report positive Lyme disease results to her department, which follows up with physicians to complete the Maryland Lyme Disease Case Report. The Maryland Department of Health and Human Services makes the final decision on which cases merit inclusion in the final statistical report. In 2005, when 117 confirmed cases were reported, there were an additional 105 that did not meet the criteria.

Maryland is such a prime location for deer that in March 2005, Maryland Senators Colburn, Dyson, Jacobs, and Stoltzfus introduced a comprehensive Lyme disease bill. Senate Bill 596 was designed to provide necessary treatment for those with Lyme and other tick-borne diseases, permitting physicians to properly treat patients without being persecuted or being required to adhere to restrictive or outdated guidelines and providing basic insurance coverage for treatment. Sadly, SB 596 passed in the Senate but died in the House.

According to Crofton microbiologist and infectious disease specialist Edward McSweegan, PhD, the medical profession has become more vigilant in the prevention, diagnosis, and treatment of Lyme disease, yet there is currently no vaccine against the disease. LYMErix, a vaccine approved by the Federal Drug Administration in 1998, was taken off the market in 2000 because of poor sales. Administered three times over a 3-year period, followed by an annual booster, LYMErix never gained acceptance in the United States.

"In the absence of a U.S. vaccine for Lyme disease, we'll just have to continue relying on personal preventive measures, experienced physicians, and luck," says McSweegan. "We need to educate the public about this disease," he adds. "The bottom line is be aware, but not alarmed." Coincidentally, McSweegan grew up spending summers in Old Lyme and recently detected a rash on his young son's leg after a tick bit him. "We went straight to the ER, got an $8 prescription for an antibiotic-and he was fine," he says. Williams worries about children getting the disease and experiencing the consequences of undiagnosed Lyme disease that manifests itself years later. She disagrees with McSweegan. "Lyme disease is an epidemic-and the low number of reported cases is misleading." Three of her neighbors have been diagnosed with Lyme disease (they all had the telltale bull's-eye rash) and a veterinarian in Bay Hills told her that in a community of fifty-four homes, he knew of thirty-two households that have infected residents.

The Center for Communicable Diseases warns that deer are not the only tick-bearing creatures. Birds, mice, and raccoons are other hosts during the lifetime of a disease-bearing tick. And dogs, as well as people, are their prey. Arnold Pet Station veterinarian Leslie G. Carr says that for the past 3 years, she has included Lyme disease in the annual screening for heartworm in dogs.

Carr believes the incidence of Lyme disease among dogs in the area is high. "One-third of the dogs tested come up positive," she says. "High-risk dogs are those who go camping or hunting with their owners or who live on properties where deer are seen."

Symptoms of the disease in dogs are "shifting leg lameness," although in some cases the disease can be metabolic and affect the dog's kidneys, heart, or both.

Because Lyme disease symptoms often mimic those of other ailments such as arthritis, lupus, fibromyalgia, and even muscular dystrophy, physicians can find themselves stymied-especially if the standard blood test shows no trace of the bacterium. Brown points out that the spirochete does not persist easily in fluid, but rather binds itself to nerve cells and burrows into tissue, causing trauma to the central nervous system, muscles, connective tissues, and bones.

Marilyn William being examined by Kenneth B. Singleton, M.D.

Neurological damage is perhaps the saddest outcome for victims of the disease. My godson Jonathan was the unwitting victim of a tick bite while vacationing with his family on Martha's Vineyard just before his freshman year at a Boston college. Unable to concentrate and plagued with mysterious joint pain, he dropped out of school and for 2 years worked as a housepainter. Eventually he recovered and today he is a PhD candidate at New York University.

My niece Meredith, who lives in a woodsy area of Maine, had a similar experience. Because her Lyme disease test was negative, doctors were baffled by her symptoms of fatigue, blurred vision, and overall weakness. She saw a broad range of specialists, some of whom recommended psychiatric treatment for what they perceived as an illness that was "all in her mind." Ten years later, she still has "good days and bad days" but is able to work as a reporter for a local National Public radio station and her unfailing cheerfulness has been a source of inspiration to family and friends.

There are endless stories about the personal ravages of Lyme disease. Support groups are a source of solace to some, who feel validated among those who share their limbo-like existence. Those of us living in the 10 states where Lyme disease is concentrated need to be aware of the dangers of living in our own backyards. No bigger than a pinhead, the ticks that spread this disease are scary things. Care when walking in the woods, wearing protective clothing, using insect repellant, and daily tick checks are a few simple things you can do to protect yourself. And supporting legislation that acknowledges the rights of victims to insured medical care is another.

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Tips on Reducing Your Risk of Catching Lyme Disease

• Wear protective clothing: long pants, long sleeves, and long socks, when entering wooded and bushy areas.
• Use insect repellent. The Centers for Disease Control and Prevention (CDC) recommends using products that have 20-30% DEET (short for N,N-diethyl-m-toluamide, a commonly used insect repellent) for adult skin.
• According to the CDC, if you remove a tick within the first 24 hours, your chance of contracting Lyme disease is "extremely small." Therefore, check your body every day for ticks, including your armpits, scalp, and groin.
• To remove a tick, use fine tweezers and grasp the tick as near the skin as you can, to gently pull it straight out. Be careful not to squeeze the tick when removing it, this could result in more bacteria being injected. Do not try to remove the tick with your fingers or attempt to remove it with a cigarette lighter, nail polish, or petroleum jelly.
• Once you have removed the tick, save it for identification and testing in the event you or your animals develop disease symptoms. Put the tick in a tightly closed container with a small amount of rubbing alcohol. Mark it with your name, address, and phone number; date collected; host collected from (animal or human); and geographic location.
• Remove ticks from clothing outside; wash exposed clothing in hot water and dry using hot heat for at least one hour to kill any ticks.
• Monitor your health closely and be on the alert for any possible signs or symptoms of Lyme disease, including but not limited to a rash, a fever, or both.