“People who get bit this year will be us in 25 years,” said Jeanne Bain, who said she has lived with Lyme disease for that long though she received the diagnosis just two years ago. Named for a town in Connecticut where a number of cases were identified in 1975, Lyme Disease is carried by ticks.
Bain said that recently her sons, ages 14 and 6, were also diagnosed through an experimental test that involved immune responses; it’s assumed she transmitted it to them in utero before knowing her own situation. “I felt good during pregnancy, better than I had in years – but I was putting all my toxins off to my children,” she said. “It’s what happens.” Husband Robert Haarman, who was tested after a strange heart condition developed, also is positive for Lyme.
When a person finds and removes a tick, if they get the characteristic “bulls eye” rash or even before that, physicians routinely treat or prevent with a 10-day course of antibiotics. This wasn’t the case years ago. Bain said anyone who was bitten but doesn’t see a tick or a rash these days could be living with the life-long limitations and pains that the chronic disease brings. Even those who receive antibiotics and assume they are okay may find the disease surfaces years later with a vengeance.
The infecting organisms are spirochetes, which clear from the blood stream rather quickly, making it hard to confirm with traditional tests. But the spirochetes are not gone, they’ve instead invaded the organs, according to www.lyme.org, the website of the Lyme Disease Foundation, the first non-profit organization that started working on the subject.
According to Ilads.org, the website for the International Lyme and Associated Diseases Society, “like syphilis in the 19th Century, Lyme Disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult to diagnose multi-system illness,” such as multiple sclerosis, Parkinson’s, ALS, Addison’s, or even heavy metal poisoning.
People coping with the chronic fatigue Lyme brings have generally dragged themselves to physician after physician and had test after test to rule out other illnesses. Meanwhile, the organisms are in the blood stream attacking joints, brain, heart and other organs randomly. Lyme “moves around,” said one sufferer.
Most Lyme diagnoses are “clinical,” Bain said, where a physician who understands Lyme concludes that the combination of symptoms points to the disease. She had been tested several times and came up negative before finding a physician who “gets Lyme.” She and others have said it’s almost better to not have been tested, if the test comes up negative, it predisposes the doctor to order other disease tests rather than pursue a clinical diagnosis.
Fatigue, lack of stamina, disorientation, in some cases anxiety, and migrating pains make it harder and harder for a person with Lyme to function in a traditional job, or to trust that they will be able to function. There are good and bad days. Homeopathic treatments and antibiotics may reduce some symptoms, but also cause flu-like and cold-like symptoms as the body deals with the die-off of cells, Haarman said.
“There is virtually no research going on. I don’t understand why they’re not working on a cure,” Bain said.
To raise awareness as well as raise funds to help the family cope financially, neighbors and friends are putting on a benefit party at the Ritz Theater Sunday, Oct. 31, 1-5 p.m. Called “Tick or Treat” with a $10 to $25 suggested donation per person, it’s intended as a “light hearted benefit with a Halloween theme, featuring live music, dancing, improvisational performance, a costume parade, a silent auction and more.” For details, see www.tickortreat.info. Donations are also accepted at any Wells Fargo Bank: The Bain/Haarman Healing Fund.
As their neighbors who are organizing the benefit say, “as with other poorly understood illnesses, insurance does not cover the cost of much of the treatments needed for chronic Lyme, creating a severe financial burden for the family.”
“For Robert, who is a dancer, motion capture artist, and waiter, and for Jeanne, who is a yoga instructor and youth worker, this means at the very time their medical costs are increasing exponentially, their ability to earn a living is severely hindered.”
Bain and Haarman evaluate every other monetary need in terms of how many of the treatments and doctors they are working with they would have to forego.
“There is no light at the end of the tunnel but we are not dying. People wonder ‘why aren’t we well yet.’ A year ago I was walking with a cane, and now I can walk without it. But now I can’t fold laundry,” Bain said, showing how she can’t lift her right arm, and movement in her hands is restricted, a disability that wasn’t there last year. “A good day is when I catch up. I would like to be able to do a handstand.”
“I cringe whenever I see kids playing in leaves,” Bain said, explaining that autumn and the months of April and May (Lyme Disease Awareness month) are the most common times that ticks are out in quantity. Disease-carrying ticks have been found in all metro areas, not just in the woods.
She said there are a lot of Lyme sufferers in Northeast, she’s met a lot of them online. When they start chatting about resources or businesses in the neighborhood, they realize they’re talking about the same places. “I also meet a lot of people who are suspicious that they have Lyme.”
Writer Monique Dubos, a Northeast resident who does not have Lyme but who got interested while doing interviews for an article, does publicity for the Minnesota Lyme Association, the group that helped the Minnesota Medical Board decide to put a five-year moratorium on investigating doctors who treat Lyme with long-term antibiotics (allowing them to treat without fear of losing their licenses).
She said the Infectious Disease Society of America, considered the prevailing authority by most doctors, believes that there is “no evidence of chronic Lyme,” and that if a person has symptoms after receiving the recommended course of antibiotics, “it’s no longer Lyme.” In some states, physicians who treat outside of these guidelines do risk losing their licenses. “We in Minnesota now have five years to try to convince doctors that there are potentially successful treatments.”
Northeast’s congressional representative Keith Ellison and US Senator Amy Klobuchar are two authors on federal legislation HR 1179 and S 1352 dealing with the need for better testing for Lyme disease. “This is an all-Minnesota issue, not a special interest,” Dubos said.
“It’s going to take more people like Monique getting involved,” Bain said. “Everybody knows somebody with Lyme.” She’s encouraged by a new book, Healing Lyme Naturally which uses the example of the AIDS epidemic.
Haarman said when AIDS was declared an epidemic (largely because Americans were getting diagnosed with it), “then money went flying to it. We could get on that trajectory.”
Here are links to websites and articles on Lyme Disease and the recent Minnesota Medical Board decision:
The Minnesota Group: http://www.mnlyme.com/
Some local info on the Minnesota Medical Board decision to put a five-year moratorium on investigating doctors who treat Lyme with long-term antibiotics (allowing them to treat without fear of losing their licenses):
Articles and commentary by Dr. Elizabeth Maloney, and Monique Dubos