902 Grand View Ave
Duluth, MN, 55812
To: ILADS, MLA, LDA, MLA
Attention – Dr. Elizabeth Maloney, Lorraine Johnson, Pat Smith, Phyliss Mervine,
CC. Dr. Eva Sapi, Dr. Alan MacDonald, Dr. Kenneth Leigner, Dr. Robert Bransfield, Dr. Brian Fallon.
Dear Lyme disease patient advocates and researchers,
The recent decision of the Minnesota Medical Review Board (MRB) to end their five-year moratorium to not persecute Lyme disease doctors who treat aggressively with antibiotics beyond the IDSA recommended guidelines, is a historic decision that cannot go unchallenged.
During the five-year moratorium in MN, which banned the persecution of doctors who treat tick-borne illnesses aggressively with antibiotics, the MN MRB members only cited a single patient antibiotic study for their actions. This study mostly simply looked at patient’s symptoms after antibiotic treatment.
This and other similar studies relied on the use of defective blood tests like the B-31 based ELISA serology tests, which we know only detects just one Borrelia species. The experts refusal to accept that we are now dealing with over a dozen human pathogenic Borrelia-Lyme species continues to be intolerable.
It was the hard work of several people and groups working together almost 10 years ago to get the MRB to originally agree to the moratorium to allow MN doctors to continue to treat Lyme disease as they see fit. Many of these same advocates have worked on political efforts to protect doctors and patients. Now it is time that we combine politics with PATHOLOGY.
I am asking our most influential Lyme activist groups and researchers to work together to petition our legislators to force the Minnesota Department of Health to do pathology-based brain studies to look for the persistence of Borrelia in dementia and MS brains using state-of-the-art research tools such as FISH stains, confocal Laser Microscopy, Atomic Force Electron Microscopy and more emerging technologies.
Or at the very least we must create an independent review council to review Lyme-Pathology studies published and unpublished showing persistence of Borrelia post antibiotics, and the persistence of Borrelia in the brain, and heart. A council to bring to the MRB any pathology-based associations to chronic illnesses like dementia or MS.
We all know the cost of untreated illness, but our medical insurance providers only see the cost in terms of treatments, and not the cost of long-term medical care for untreated seronegative neurologic patients.
To achieve the goal of getting a State-paid brain pathology study or a pathology review committee; groups and individuals will have to come together and form a take-action committee to define and refine our goals and to assemble teams to lobby our legislative body, our health department and the MRB.
Such topics as multiple Borrelia species, poor blood-tests, immune system evasion, and immune sequestered sites are all huge topics much too big for non-medical legislators to fully understand without proper navigation.
Please support this effort!
Thomas Grier 218-216-5670
Microbiologist Tom Greer makes some astute observations:
- A study which only looks at symptoms is very subjective and certainly should NOT become a mandate on how a doctor can and can not treat
- There’s a real problem with a test which only looks at one borrelia species
- We desperately need pathology studies which show pathogen persistence as well as the fact it sequesters in tissues making blood tests nearly worthless
- On top of all of these points, advocate Carl Tuttle continues to drill home the point that those diagnosed and treated early that remain with symptoms have a completely different disease process than those who are diagnosed and treated late. For a great read on this: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/ According to microbiologist Holly Ahern, when you add both groups together, there’s a whopping 60% of patients going on to develop chronic/persistent symptoms.
Also, this is another great reason to write your Wisconsin representative and tell them to squash Assembly Bill 313 if you haven’t already done so. More Minnesotans are going to be coming to Wisconsin for treatment. The last thing we need is a panel dictating how our doctors diagnose and treat: https://madisonarealymesupportgroup.com/2019/11/06/wisconsinites-a-reminder-to-please-write-oppose-assembly-bill-ab313-today/