MN Lyme Patients have Reason for Hope as Lyme Bill gets Second Hearing at Capitol
Minnesota Lyme activists and opponents assembled before the House Health Care and Human Services Policy and Oversight Committee to give testimony for HF 2597, a bill that would limit the “Board of Medical Practice from bringing a disciplinary action against a physician for prescribing, administering, or dispensing long-term antibiotic therapy for chronic Lyme disease.”
Rep. John Ward, representing the Brainerd area, began by telling the committee and packed gallery, that he, the medical board and a representative of the Minnesota Lyme Action Support Group, were working on an agreement that would supplant the need for legislative action, and moved to “lay over” the vote of the bill until after such an agreement could be voted on by the board.
Rep. Ward said the hearing would continue for educational purposes, then gave an impassioned introduction to the committee, laying out the obstacles to care faced by Lyme sufferers and why the health policy committee should be compelled to enact a bill that allows physicians to appropriately treat Lyme patients without fear of reprisal from the state medical board. He contrasted his wife’s ability to listen to and choose from varying options for treating her cancer, and reminded the committee that other diseases and their treatments were controversial in early stages of understanding, such as AIDS and polio. He said that each of the committee members or someone they love was “just a tick bite away” from having to deal with the ravages of Lyme disease without adequate health care options.
MLASG medical advisor Dr. Betty Maloney gave a thorough, well-reasoned explanation of the science behind Lyme disease, why tests are not reliable and why treatment studies relied upon in the Infectious Disease Society of America guidelines – the prevailing authority on Lyme treatment and diagnosis – are flawed. Science and medicine should not be ruled by the majority but by evidence, said Dr. Maloney, and that clear evidence exists to support long-term antibiotic use in the treatment of many Lyme disease cases. She reminded the assembly that enacting health policy that opens doors to patients who would not otherwise have access to appropriate care is an appropriate function of their committee.
MLASG member Michelle Backes of Lindstrom told of a misdiagnosis of MS when lesions were identified on her brain.Once a Lyme diagnosis was confirmed, unable to find a doctor in Minnesota to treat her, she traveled out of state for treatment. Since she started Lyme treatment, her neurological symptoms have subsided and she said she has not developed any new lesions. Backes also introduced members Chris Erickson and Chris Thompson, giving a brief overview of their stories of failed diagnosis and road to recovery after finally receiving antibiotic treatment for Lyme.
Dr. Laura Keller, a physician and member of Minnesota Pharmacists Association, was another testifier from the medical community who laid out clear and rational uses for antibiotics, explaining that antibiotic resistance is not caused by overuse but by underuse, that is, not giving a strong and/or long enough dose and treatment to kill infections.
Pastor Art Stenberg of Buffalo, wearing a respirator, painted a chilling portrait of his more than two decades of suffering with Lyme disease and misdiagnosis over many years. One doctor told him, “It will either get better, or it won’t.” Once Lyme was diagnosed, he was given a course of antibiotics that began to alleviate his symptoms. When his doctor refused to give him another round of antibiotics, he had to settle for pain management instead of real treatment that might cure him. He told the assembly he is now on an almost continuous narcotic infusion, without which he would be bed-ridden.
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