Tick, tick, tick

(This article was published in the summer 2011 issue of Lyme Times)

Anne Myre remembers the day she woke up with aching muscles and severe joint pain. It hurt to turn her neck. Within days, her feet were so sore, it hurt to walk, and an overwhelming fatigue set in, making it nearly impossible to drag herself out of bed. Although she showed her doctor the bull’s eye rash she had developed after being bitten by a tick, she was told she had arthritis, bursitis, flu, plantar fasciitis, and depression. Her job was threatened for taking so many sick days. She was 24.

She also remembers the day many months later when she saw Lyme Disease being discussed on a talk show and recognized her symptoms. It was a relief to be able to name it, she says, a relief to realize she wasn’t going crazy. After 10 days of antibiotics, her doctor told her she was good to go. And she did feel better – mostly. But foot pain, insomnia, fatigue and depression would return sporadically over the next 20 years.

Then, in 2005, Myre tested positive for Chronic Lyme Disease (CLD). Wanting to find others who were dealing with the frustrations of this confounding disease, she traveled from her home in Forest Lake to support group meetings in the Twin Cities, but only a few people attended. In her disappointment, she took steps to form her own support group. “I don’t know why I started it, because I’m not a public person at all. I was moved. I needed support myself and there just wasn’t anything around here.” Members of her parish, the Hosanna Lutheran Church, helped her get started and provided a meeting place. She hung flyers around town and posted an ad in the local paper that invited “you or anyone you know with Lyme Disease” to come to the meeting. Myre was nervous before the first meeting, fearing nobody would show up. “But when people started to come in I was exhilarated. I couldn’t believe there were that many people in this little town of ours” with Lyme Disease. “I cried the first several meetings because, finally, there was somebody out there like me.” As Myre sees it, the support group’s growth has gone far beyond the initial hope that she could learn more about the disease with others. “It’s just been phenomenal.”

That was three years ago, when Myre founded the Minnesota Lyme Action Support Group (MLASG). Based in Forest Lake, one of Minnesota’s epicenters of Lyme Disease, the group draws membership from a wide radius: Milaca, Duluth, Hudson, Taylors Falls, Osceola, Hayward, Stillwater, Woodbury, the Twin Cities. And today it has become a locus of activism. Membership has grown from 15 at that first meeting to its current mailing list of 276. MLASG is known by people in the Minnesota Lyme community as a leader because of their efforts to raise awareness of this misunderstood disease. They have hosted seminars that feature Lyme experts for the public and health professionals, and hold a once-monthly support group meeting. To fund these efforts, they organize an annual 5K walk/run, which, last year, brought in $10,000.

The Minnesota Department of Health (MDH) reported 1,239 cases in 2007, the most recent reporting year. Those who study or treat Lyme believe the true number of cases, including those that go unreported or misdiagnosed, could be 12 times higher. Melissa Kemperman, an MDH epidemiologist, said suburban sprawl has created ideal tick habitat with lots of forest edge, such as the area in and around Forest Lake, where ticks thrive in the cool, damp shade of the underbrush and leaf litter.

This is what we know: When someone is bitten by a black-legged tick in Minnesota, they have at least a one in three chance of being infected with the bacteria that causes Lyme Disease. An MDH survey of black-legged ticks (in Minnesota, these are mostly deer ticks) once found mainly in eastern Minnesota, finds them moving across the state. Doctors agree that a person who is infected by a tick bite has a good chance of warding off disease if they are treated within several days of the bite. But here’s where the issue gets thorny: Many doctors either don’t know what to look for, and some don’t even believe in CLD. For one thing, they are conditioned to expect to see the tell-tale bull’s eye rash, but not all Lyme rashes display this characteristic. Thirty percent of those infected never develop a rash at all. Because ticks carry other bacteria that may complicate a Lyme infection, symptoms vary from person to person, often mimicking symptoms of other diseases. For these reasons, Lyme can go for many years without being properly treated, compounding the symptoms as the bacteria multiply and invade many systems of the body, including tissues, organs and brain. This is the late stage known as CLD.

Dr. Elizabeth “Betty” Maloney is the group’s advisor and a frequent speaker at MLASG’s public presentations. She devotes most of her waking hours scouring the Lyme research and findings of doctors who have treated CLD. Maloney’s self-imposed education mandate also extends to the medical community. She has developed classes for registered nurses and physicians to make them aware that CLD is real and rampant in Minnesota, and that the Infectious Disease Society of America (IDSA) guidelines for diagnosis and treatment – the accepted law of Lyme Land – are inadequate and inappropriate. For starters, the diagnostic blood test most commonly used doesn’t detect all forms of the disease. It is based on the assumption that, if a person is infected, they will develop antibodies that can be detected. However, the test only searches for a selection of the antibodies, those that would be present in Lyme arthritis, and not others that are present in other manifestations of the disease. These antibodies take time to build up. In some patients, the antibodies themselves elude detection because they’re bound together in so-called immune complexes. And patients with neurological symptoms, such as dizziness, numbness of limbs, blurred vision and headaches – common in CLD – tend to have a muted immune response. The tests could miss patients at any state of the disease.

Maloney and other Lyme-aware doctors, believes Lyme Disease is best detected by clinical diagnosis. “Diagnosis of Lyme . . . should be done by listening to a patient’s history, knowing that they live, work, play in an area where Lyme is, by doing an exam. People always think that tests are infallible, because, by gosh, it involves technology and technology is great! But the Lyme tests were created by people and they are not perfect. Unlike the HIV screening test, which has . . . to catch 95% of all HIV cases, the Lyme tests don’t have to prove it and they aren’t catching it.”

Treatment protocol is another dispute. Dr. Joseph Burrascano, an icon of the Lyme community who has been treating CLD in New York State since the early 80s, admits in his 2008 treatment guidelines, that while long-term antibiotic treatment has been effective, the type of drug and dosage will “vary for different people based on multiple factors.” These include how long the person has been sick, whether they have co-infections or immune deficiencies, whether they have taken medications that can aggravate the Lyme infection (like steroids, which are often prescribed for arthritis), their age, weight, tolerance to antibiotic treatment, and other factors. The IDSA calls for a single, short round of antibiotics and contends that long-term therapy is dangerous.

With all this disagreement, it’s no surprise that insurance coverage should become another bramble, causing long-term antibiotic treatment to go underground. Insurance companies have placed doctors who defy the IDSA guidelines on state medical board watch lists. Burrascano himself was brought in front of the New York State medical board and forced to defend his treatment protocol. Unlike others who have been similarly persecuted, he did not lose his license. Because of this threat, it’s not easy to find a doctor who will administer antibiotics long-term. For this article, I spoke with a dozen people being treated for CLD. Not one wanted to “out” their doctor.

A main driver behind MLASG’s work is Jan Thietje, who came to the group when she learned that some family members where diagnosed with Lyme and was looking for information on the disease. Immediately she saw the need for more organization. “They were very open to suggestions, very willing, very tired, very ill.” She recommended the group form a board of directors, register as a nonprofit for fundraising purposes, and get on their legislator’s radar. She explained, “I come from Illinois, and in Illinois if you want to get anything done you have to get close to your legislators.” The first guest speaker Thietje brought in was Pat Smith, the national Lyme Disease Association’s president, for a three-day symposium, which she coordinated with the Forest Lake mayor. Both state legislators from the district were in attendance.

Ray Vandeveer is the state senator for district 52, which envelopes parts of the suburban counties of Anoka and Washington, containing Forest Lake. He knew people who were dealing with a variety of health issues that seemed unrelated to each other, and if “they went to three different doctors they got three different opinions.” Some of them believed Lyme might be the culprit. So, when he was invited by MLASG to learn more about Lyme, he readily accepted. At group meetings he has attended since then, he has talked to many people, who, prior to long-term antibiotic treatment, had to quit their jobs, “quit doing things most of us do. When they got the long-term treatment [for CLD], they got better. Some were health professionals themselves with a lot of credibility. These people weren’t running around looking for ways to be sick. Their experiences were documented and very persuasive.” Vandeveer’s interactions with the group have convinced him that long-term antibiotic therapy works for many CLD sufferers, and that doctors need to be able to provide that treatment. At the group’s request he has co-authored a bill, currently awaiting a committee hearing at the state legislature, which would provide doctors protection to do just that.

The hope for the legislation is that doctors who are now cautious about long-term antibiotic therapy won’t feel so at risk, which would increase the number of doctors willing to provide much-needed treatment. Brenda Morency, the board treasurer, was given the run around by doctors who failed to connect the dots of her various ailments, which included extreme headaches, Bell’s palsy and blurred vision. Allowed to go untreated, the nerve damage to her left eye and left side of her face is irreversible. Finally, five doctors and 14 months after the symptoms began, she started antibiotic treatment for CLD. Morency was given treatment for five months and declared “cured,” when most of her symptoms went away. But within two months she started to lose feeling in her legs, or they would feel as if they weighed “a thousand pounds each,” causing her to fall a lot. She went back on antibiotics, which she credits with keeping her out of a wheelchair. But she can’t always depend on being able to get in for a doctor visit. There are so few in Minnesota who treat so many CLD patients, waiting lists can be six months long or more. Plagued with fatigue, Morency wonders, “How can I drive three hours north or south for treatment without falling asleep behind the wheel?”

In addition to being debilitated by sickness, many CLD sufferers are also devastated by the money they shell out for their expensive treatments. Kim Mitchell, whom I met at a MLASG event, is a well-paid engineer and business entrepreneur with good health coverage. He and his wife, who also has CLD, have been on intravenous antibiotics as well as oral dosages, natural remedies, like probiotics to offset the effects of the antibiotics, and vitamin supplements. Insurance companies don’t pay for these alternative treatments, and Mitchell figures his out-of-pocket costs in 2008 were $40,000.

Eight women currently serve on the board of MLASG, and all but Thietje struggle with CLD’s confounding symptoms. Despite their various disabilities, the women work doggedly toward their educational goals. They have hosted public events that showcase experts from the Minnesota departments of health and natural resources and experts from around the country, and they staff booths at home shows and physicians’ conferences. To increase the number of doctors who recognize Lyme and know how to treat it, they have sponsored attendance for two doctors at the International Lyme and Associated Diseases Society (ILADS) annual conference. ILADS recognizes CLD and works to improve the standards of treatment for the disease.

It’s a Thursday night in the Forest Lake Area High School media library. Forty or so men and women and a couple teenagers sit around rectangular tables, many furtively taking notes of Maloney’s presentation about the diseases ticks can inflict and what to do if they get bit. Myre, Morency and three other board members sit together by the door, greeting people as they arrive and handing out literature. They are wearing last year’s 5K T-shirts, lime green with “Tick Tick Tick Lyme Disease!” printed in black across the front. Because high-season for ticks in Minnesota is June through August, Maloney suggests that if anyone gets what feels like a summer flu, they should get to a doctor. A young woman who was recently bitten by a tick asks, “If you get treated for Lyme, are you guaranteed to get better?” Although optimistic that research will lead to better treatment, Maloney pauses, and, with resignation in her voice, responds: “No. There isn’t a guarantee. I think your odds are very good, but no, there is no guarantee.”