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.”

Lyme Warrior

(I'm still trying to get this published . . . )

About 15 men and women are stretched out on brightly-colored sticky mats in a carpeted meeting room in which chairs and tables are stacked in a corner. A woman with clear blue eyes and sand-colored hair pulled back with a head band speaks with a conversational lilt as she warms up the class with a few seated asanas.

It’s Monday at the University of Minnesota and this group of students and staff is releasing the stress of their day in a free lunch-time drop-in yoga class. Jeanne Bain, who has taught yoga here for five years, informs the class they will work up to a headstand today. The attendees look around uneasily, but Bain assures them they may only do as much as they feel capable of doing today, building strength and correct posture to accomplish the full pose . . . eventually. “The intention is to get to the full headstand, but that may be next week, next year, or in the next life.” Bain demonstrates how to “build the pose,” starting from dolphin pose. She quickly falls over laughing, explaining that she can’t actually hold the pose for very long, but assures the class it can be done. Bain then hops cheerfully from person to person, helping each one through various stages of the headstand.

By all appearances, Bain is a healthy, joyful, enthusiastic woman. This is a good day. But on a bad day, she can’t drag herself out of bed. Bain has Lyme Disease, a tick-borne bacterial infection that causes a seemingly endless array of symptoms, from muscle and joint pain to dizziness to disabling fatigue. Taken alone, these symptoms could signal any number of common ailments. But Lyme Disease victims suffer from a combination of these symptoms and more, which can compound and worsen if not properly treated. If one is lucky enough to find a doctor who will prescribe the needed antibiotics, treatment can stretch on a year or more.

Although Bain was only recently diagnosed, she believes she has been sick with Lyme for half of her 44 years. She has seen a slew of doctors over the years – an endocrinologist, a neurologist, a cardiologist, acupuncturists, chiropractors, and a hormone OB/GYN/menopause expert – to figure out what was wrong with her. They told her she was just anxious. “I had a major personality change,” she says, recalling the time when she was 20, when she believes she contracted Lyme. “I went from being totally bubbly and full of life and joy to being Goth.” On the bad days she describes herself as “Masha Jeanne,” after the dark, despairing character, Masha, in Chekhov’s “The Seagull.”

Bain may feel dark on the inside, but from the outside people see light; she smiles often and moves at a clip from one task to another. She and her husband, Robert Haarman, decided not to replace their car after it was totaled in an accident, and Bain used her bike to get around for almost a year, logging about 15 miles a day. In addition to teaching yoga at several venues, Bain, with a theater degree and a master’s in human development, facilitates creative writing classes of 4^th to 12^th grade homeschoolers, and is a contributing writer to a Minneapolis women’s magazine. She also raises two sons, four and 12, with Haarman, who is a dancer, waiter, singer and clown. Both boys have Lyme, adding guilt to her burden, because she suspects she passed the disease to them in utero.

The clash of the drugs with the bacteria can be more painful than the disease. Known as a “herx,” (from Jarisch-Herxheimer reaction), Bain describes the die-off of the bacteria as going “backward through your life with Lyme,” experiencing all the symptoms you’ve had in your life in reverse. “There is a squeezing pain in random places. Then depression waves. Then anxiety. Then the ankle goes out. Can't put any weight on it. Then it passes. Then my blood hurts. Feels like it isn't flowing. Pains in my rib cage. Is it my heart? Then the hip seizes up and I can't walk.” She has been on the drugs for three months and doesn’t know if or when she will feel completely well.

Since being diagnosed, Bain has become aware of dozens of other people with Lyme, all who have faced similar obstacles trying to get to the root of the problem. Haarman calls Bain “the Erin Brockovich of Lyme” because she has fervently researched Lyme at the library and on “Dr. Google” and shares her findings through a Lyme support group. She recently arranged a screening of “Under Our Skin,” a terrifying documentary that follows a hand-full of Lyme sufferers for several years through their battles with the disease and the stonewalling of the medical establishment that insists their symptoms are all in their head.

Through it all, yoga has been an antidote to the sickness, which Bain practices at least four times a week. “I feel like I’m pulling a sled around, 24 hours a day, even while I sleep. And my arms are broken. On that sled are my two kids, my husband, all the doctor appointments, the supplements, the drugs,” Bain explains. “Without yoga, I wouldn’t have the strength or courage to continue.”

Vigilante for Social Justice

(Posted on NEED Magazine blog June 4)

Eric Klein was mad as hell. In December 2004, on the same day that a tsunami crashed into Southeast Asia, Klein was hit by a drunk driver. He didn't realize at the time that these two events would converge to shape his life's mission. Along with the rest of the world, Klein watched as relief organizations collected billions of dollars to help the devastated people of Sri Lanka. Six weeks later, little of the money seemed to be getting to the villagers whose lives had been swept away by the storm.

Klein determined to help out with some of the settlement money he got from the car accident. He and two of his buddies would travel to Sri Lanka to support the community however they could. When they arrived, they found untouched stacks of supplies in a warehouse across the street from needy villagers. What was intended to be a five-day trip turned into a four-month relief effort. Klein helped build houses and public bathrooms in several villages. He bought simple necessities for the hospitals, and shoes and toiletries for the villagers. He helped them organize to rebuild their communities.

Because of that experience, Klein founded CAN-DO, or Compassion into Action Network - Direct Outcome. CAN-DO has helped communities by supplying provisions in the wake of the hurricanes that have slashed the gulf coast, flooding in Iowa and Rwanda, and power cut-offs on the Crow Creek Reservation in South Dakota. On the reservation, where people earn less than $4000 a year and the average life expectancy is 44 years, Klein says he saw the worst poverty. The utility company in the region had begun to shut off the power to residents' homes during the extremely cold weather - even against the company's own cold-weather policy - because residents were overdue on their power bill, for amounts less than $100.

As he did in Sri Lanka, Klein asked the tribe how he could help. Peter Lengkeek, the Crow Creek member who brought the power cut-offs to Klein's attention, said, "What CAN-DO is doing is incredible and is the right way." Lengkeek said many people have tried to exploied the tribe for self-promotion or worse. "CAN-DO is coming here and working beside us. They have given us a voice we've never had before." Unfortunately, the power company denies they are doing anything wrong, and campaign to find a solution is ongoing. To spur economic development on the reservation, CAN-DO, Lengkeek and others are partnerning to build a thrift store, among other projects, where residents can purchase at low cost essentials like food, diapers and other dry goods. Another project is a greenhouse, which viewers can watch take shpe via live webcam June 7th through June 15th.

"People think we're this big organization, but we're not,"Klein says of CAN-DO, which is made up of a few friends and his mother and father. When they hear about a community in need, they pool resources and jump in to help. "We don't have a religious or political agenda. We don't cut checks for salaries. We have a low overhead. All the [donated] money goes into the communities we serve. We get the communty involved." Because he founded CAN-DO out of outrage over the inefficient use of relief money by some large relief organizations, he is committed to open communication with his organization's supporters. To measure accountability for people's donations, CAN-DO created the Virtual Volunteer, "the first online, interactive real-time video web site which allows millions world wide to watch LIVE and interact via chat as you personally witness your contributions make it into the hands of those in need."