- The following pages contain information about Lyme Disease and links to other websites that contain resources
and other guides to understanding Lyme Disease more thouroughly.
This website is designed to provide practical and useful information on the subject matter covered. However, it is
being shard with the understanding the Minnesota Lyme Action Support Group is not engaged in rendering the
medical or other professional service. If medical or other expert assistance is required, the services of a
competent professional should be obtained.
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The Minnesota Lyme Action Support Group (MLASG) is a 501c3 nonprofit organization located in Forest Lake, Minnesota.
The mission of this corporation is:
The purpose of this corporation is:
With your generous support we were able to:
Our goals for 2010 are to continue the programs we established in 2009 while taking on these activities:
2008 was a pivotal year for the Lyme disease community. Release of the Lyme documentary “Under Our Skin” and the book Cure Unknown brought
national attention to Lyme disease and other tick-borne illnesses. Andy Abraham Wilson, the producer and writer of “Under Our Skin”, describes his
work in these words: “Our film tells the hidden story of Lyme disease, while shining light into the dark fissures of our healthcare and medical research
systems. It is meant to open eyes to a danger under our skin that has gone far too long ignored. Awareness literally will save lives.”
Cure Unknown was a 6-year project for Pamela Weintraub. Pam, a science writer and investigative reporter delivers a compelling and definitive book
about Lyme disease. Her nuanced picture of the uncertainty surrounding Lyme disease highlights the need for further research on the illness.
The mission of this corporation is:
- MLASG's mission is to support and conduct education and informational activities to increase public awareness and prevention of Lyme Disease
and other tick borne illnesses
The purpose of this corporation is:
- to support those people that have been diagnosed with Lyme disease and their families and significant others
- to promote the education of health care professionals pertaining to the diagnosis and treatment of Lyme disease and other tick borne illnesses
- to raise funds for education and prevention involving Lyme disease and tick borne illnesses
With your generous support we were able to:
- Held 12 monthly support meetings with a total attendance of over 1100 people
- In addition to support meetings, MLASG participated in the Chisago and Forest Lake Homeshows, Lindwood Days and Warner Nature Center to
help raise Lyme disease awareness in the community - Meet with state and federal legislators to increase their understanding of the need for the physician protection bill and additional research funding
- MLASG along with the Forest Lake Community Education Program sponsored a two part series "Under Our Skin" and "I've Been Bitten by a Tick,
Now What"? - Host public screenings of the award winning documentary "Under Our Skin", a moving examination of the problems faced by Lyme disease patients
- MLASG had a booth at the Minnesota Family Physician Conference. This event was vital to the Lyme community as we need to introduce
physicians to new Lyme disease information. - MLASG also had a booth at the Horse Expo. The Horse Expo draws 30,000 people from 4 states was held at the Minnesota Fair Grounds.
- Hosted 3 National speakers: Phyllis Mervine, President of the California LDA, Pam Weintraub, author of Cure Unknown, and Pat Smith, President
of the Lyme Disease Association - Sponsored the Minneapolis premier of the award-winning documentary, "Under Our Skin," at the Oak Street Cinema. Jordan Fisher Smith, the
park ranger who tells his harrowing story in the film, emceed the event and Dr. Betty Maloney was on hand for questions - The Oak Street cinema event was part of the effort to pass legislation that will give doctors more freedom to treat Lyme disease (Minnesota State
Senate Bill S.F. 1631). State Senator Ray Vandeveer (R-MN), co-author of the Senate bill, and Representative John Ward (D-MN), sponsor of the
House bill, spoke at Sundays shows. - We had our third annual Lyme Walk/Run at the Sunrise Prairie Trail in Wyoming, Minnesota and raise twice what we did the year before.
- Membership is over 300 and our board averages 15
Our goals for 2010 are to continue the programs we established in 2009 while taking on these activities:
- Host national speakers
- Provide continuing education seminars for physicians and nurses
- Partner with local school districts to develop an ongoing Lyme disease outreach program which will educate parents and children about Lyme
disease - Participation at the Minnesota Academy of Family Physicians Spring Refresher. This event is vital to the Lyme community as we need to introduce
physicians to new Lyme disease information and our physician continuing education program
2008 was a pivotal year for the Lyme disease community. Release of the Lyme documentary “Under Our Skin” and the book Cure Unknown brought
national attention to Lyme disease and other tick-borne illnesses. Andy Abraham Wilson, the producer and writer of “Under Our Skin”, describes his
work in these words: “Our film tells the hidden story of Lyme disease, while shining light into the dark fissures of our healthcare and medical research
systems. It is meant to open eyes to a danger under our skin that has gone far too long ignored. Awareness literally will save lives.”
Cure Unknown was a 6-year project for Pamela Weintraub. Pam, a science writer and investigative reporter delivers a compelling and definitive book
about Lyme disease. Her nuanced picture of the uncertainty surrounding Lyme disease highlights the need for further research on the illness.
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| A big thank you to Rapid Press of Forest Lake. |
High Risk Areas for Tick-borne Disease in Minnesota - click here to see the updated map.
Click here to view a map where we have support for Bill S.F. 1631
Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process,
IDSA Agrees To Reassess Guidelines, Install Independent Arbiter
IDSA Violates Lyme Antitrust Settlement Agreement with Connecticut Attorney General - 02/2010
HOW DID THE HEARING GO??!!
HF 2597
Rep. Ward gave an impassioned introduction to the House health policy committee, laying out the
obstacles to care faced by Lyme sufferers and why the health policy committee should be compelled
to enact policy 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.
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 IDSA guidelines are flawed. She reminded the assembly that enacting health policy that opens
door to patients who would not otherwise have access to appropriate care is an appropriate function of their committee.
MLASG member Michelle Backes told her engaging story of developing brain lesions, which lead to a misdiagnosis of MS. 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 brain lesions. Backes also introduced members Chris Erickson
and Chris Thompson, and gave a brief overview of their stories of failed diagnosis and road to recovery after finally receiving antibiotic treatment for
Lyme.
Dr. Laura Keller, a pharmacist 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, wearing a respirator, painted a chilling portrait of his more than two decades of suffering with Lyme disease and misdiagnosis
over many years. One 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 to mute his pain.
Many legislators asked probing, educated questions of all the testifiers, proving that our messages got through to them and they really did their
homework.
Like I said, a very successful hearing!
So far, only the mp3 has been posted on line (it starts about a quarter of the way in, after the first hearing – worth a listen!):
http://ww2.house.leg.state.mn.us/audio/mp3ls86/healthpol021710.mp3 If there is a video of the hearing, it will be posted on mlasg.com.
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.”
As far as the Board resolution (the official name for the compromise), we need to keep up the pressure. Mark you calendar and plan to attend these
MN Board of Medical Practice meetings to capitalize on our hard-won leverage.
MBMP Public Policy Committee will hear the Resolution
Tuesday, February 23, 5:30 PM
2829 University Ave. SE, Minneapolis
4th Floor, Conference Room A
MBMP Board Meeting - Resolution will be heard before entire board
Saturday, March 13th, 9:00 AM
2829 University Ave. SE, Minneapolis
4th Floor, Conference Room A
Good job, everyone!!
Happily,
Monique Dubos
Communications & PR
MLASG
When writing your letters please let them know:
Rather than this being the legislature telling the medical board what to do, it is instead a reaffirmation
of the legislature's commitment to strong relationships between doctors and patients that will give them
the opportunity to make Lyme Disease-related treatment decisions on a 'case by case' basis.
Dear Minnesota Lyme Action Support Group members,
The Minnesota Lyme Action Support Group is working with state Senators John Marty (DFL) and Ray Vandeveer (R), and state Representatives
John Ward (DFL) and Bob Dettmer (R) to pass a bill (SF 1631) that will protect physicians’ and patients’ rights in the treatment of Lyme disease. The
bi-partisan support, which now includes Senator Jim Carlson (DFL) and Representative Carol McFarlane (R), is growing. These brave legislators now
need our help to pass the bill by contacting their legislative colleagues to discuss the importance of this crucial bill.
You can help by:
1. Contacting your State Representative and State Senator
2. Asking your friends and family to contact their State Senator and State Representative.
An on-line instruction sheet and form letter are available for your use.
Thank you for your assistance with this important and historic legislation.
Regards,
Legislative Committee
Click here to view a map where we have support for Bill S.F. 1631
Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process,
IDSA Agrees To Reassess Guidelines, Install Independent Arbiter
IDSA Violates Lyme Antitrust Settlement Agreement with Connecticut Attorney General - 02/2010
HOW DID THE HEARING GO??!!
HF 2597
Rep. Ward gave an impassioned introduction to the House health policy committee, laying out the
obstacles to care faced by Lyme sufferers and why the health policy committee should be compelled
to enact policy 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.
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 IDSA guidelines are flawed. She reminded the assembly that enacting health policy that opens
door to patients who would not otherwise have access to appropriate care is an appropriate function of their committee.
MLASG member Michelle Backes told her engaging story of developing brain lesions, which lead to a misdiagnosis of MS. 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 brain lesions. Backes also introduced members Chris Erickson
and Chris Thompson, and gave a brief overview of their stories of failed diagnosis and road to recovery after finally receiving antibiotic treatment for
Lyme.
Dr. Laura Keller, a pharmacist 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, wearing a respirator, painted a chilling portrait of his more than two decades of suffering with Lyme disease and misdiagnosis
over many years. One 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 to mute his pain.
Many legislators asked probing, educated questions of all the testifiers, proving that our messages got through to them and they really did their
homework.
Like I said, a very successful hearing!
So far, only the mp3 has been posted on line (it starts about a quarter of the way in, after the first hearing – worth a listen!):
http://ww2.house.leg.state.mn.us/audio/mp3ls86/healthpol021710.mp3 If there is a video of the hearing, it will be posted on mlasg.com.
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.”
As far as the Board resolution (the official name for the compromise), we need to keep up the pressure. Mark you calendar and plan to attend these
MN Board of Medical Practice meetings to capitalize on our hard-won leverage.
MBMP Public Policy Committee will hear the Resolution
Tuesday, February 23, 5:30 PM
2829 University Ave. SE, Minneapolis
4th Floor, Conference Room A
MBMP Board Meeting - Resolution will be heard before entire board
Saturday, March 13th, 9:00 AM
2829 University Ave. SE, Minneapolis
4th Floor, Conference Room A
Good job, everyone!!
Happily,
Monique Dubos
Communications & PR
MLASG
When writing your letters please let them know:
Rather than this being the legislature telling the medical board what to do, it is instead a reaffirmation
of the legislature's commitment to strong relationships between doctors and patients that will give them
the opportunity to make Lyme Disease-related treatment decisions on a 'case by case' basis.
Dear Minnesota Lyme Action Support Group members,
The Minnesota Lyme Action Support Group is working with state Senators John Marty (DFL) and Ray Vandeveer (R), and state Representatives
John Ward (DFL) and Bob Dettmer (R) to pass a bill (SF 1631) that will protect physicians’ and patients’ rights in the treatment of Lyme disease. The
bi-partisan support, which now includes Senator Jim Carlson (DFL) and Representative Carol McFarlane (R), is growing. These brave legislators now
need our help to pass the bill by contacting their legislative colleagues to discuss the importance of this crucial bill.
You can help by:
1. Contacting your State Representative and State Senator
2. Asking your friends and family to contact their State Senator and State Representative.
An on-line instruction sheet and form letter are available for your use.
Thank you for your assistance with this important and historic legislation.
Regards,
Legislative Committee
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This website was created to help raise awareness about Lyme disease in and around Minnesota.