According to the Lyme Disease Association (LDA), the number of Lyme cases in the US is now approaching 400,000 per year, with Wisconsin ranked 6th in the nation with nearly 20,000-30,000 cases per year. http://labs.russell.wisc.edu/wisconsin-ticks/lyme-disease/ We are also a hotbed for Powassan Virus. http://labs.russell.wisc.edu/wisconsin-ticks/powassan-virus/
Of course, those of us with boots on the ground know this number to still be abysmally low. Many go undiagnosed and unreported.
Having experienced the devastating effects of tick borne illness personally, I can attest to spending between 20-30K out of pocket per year for over three years of treatment for my husband and I. Costs not withstanding, there is a complete disconnect in the mainstream medical community regarding the complexity of this illness(es), with most practitioners following the CDC’s unscientific and outdated information, patients are being tested with testing that misses over half of all cases. https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/ Even if patients win the lottery and test positive, they will be treated with essentially 21 days of doxycycline despite over 700 peer reviewed articles showing that Lyme (borrelia) persists. http://www.ilads.org/ilads_news/wpcontent/uploads/2015/09/EvidenceofPersistence-V2.pdf
On top of the poor testing and treatment, most practitioners do not acknowledge that research shows most of us are infected with far more than borrelia, complicating our cases exponentially. https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
This is important to note as patients with Lyme AND coinfections experience more severe illness, more symptoms, and a longer recovery. Since Lyme disease was first identified in 1981, researchers have found more than 15 tick-borne pathogens that weren’t known before. New ones are still being discovered. Unfortunately, the tests for these coinfections are as poor as the tests for Lyme (borrelia).
It’s a real problem, leaving many in Wisconsin suffering and filing for disability.
Last year, law makers and Lyme Advocates in Massachusetts obtained a victory for patients which calls for mandatory insurance coverage for long-term Lyme treatment, a first of its kind. https://www.lymedisease.org/victory-lyme-insurance-coverage-ma/. The truly great thing about their bill is they keep legislators out of practicing medicine giving “best practices of treatment,” and instead enable licensed physicians to make treatment decisions based upon their best clinical judgment, without interference from third-party insurers. This bill sends a clear and present message to state medical boards and insurers that doctors are the best judges of treatment. It also sends a message to doctors that they no longer have to fear treating those with chronic symptoms.
Insurance coverage and protection of doctors will go a long way in helping Lyme/MSIDS (multi systemic infectious disease syndrome or Lyme with coinfections) patients. Hopefully with this type of legislation, doctors will become ILADS (International Lyme and Associated Diseases Society) trained so they can handle the complexity of tick borne illness, which would support the extended treatment with antibiotics when necessary, because currently, most Wisconsin doctors are woefully ill equipped and following unscientific and outdated IDSA (Infectious Disease Society Association) guidelines which are not even currently listed on the National Guideline Clearinghouse and do not conform to the stringent standards for guidelines development established by the Institute of Medicine. https://www.lymediseaseassociation.org/index.php/lda-news-a-updates/1456-official-word-on-idsa-guidelines-removal-from-ngc
Don’t you think it’s time for something to change in Wisconsin regarding tick borne illness?
I spoke at both the Public Hearing at the Capital last year https://madisonarealymesupportgroup.com/2016/02/04/hearing-on-npr/, as well as the Evidence Based Policy Project https://madisonarealymesupportgroup.com/2016/03/04/health-policy-recap/, of which Lyme – an epidemic in Wisconsin – was essentially a footnote with West Nile and Zika taking center stage. According to Entomology Professor and researcher, Susan Paskewitz, mosquitos in Wisconsin can’t even carry Zika. Why is so much research being done on Zika in Wisconsin when we have a far worse problem? I’m concerned that the 10 million given to a consortium of Midwestern universities will be spent on the tropical disease, Zika, with Tick borne illness research continuing to languish. https://madisonarealymesupportgroup.com/2017/01/27/uwm-center-of-excellence-vector-borne-diseases/
On nearly a daily basis I deal with 3 generations of infected Wisconsinites living under one roof barely surviving, foregoing treatment due to expense and trying to make it on one income. College students have to quit school and move back home. Mothers who have passed MSIDS to their children congenitally are trying to juggle treating numerous family members including themselves. Many go through needless divorces as they aren’t educated that MSIDS can cause a wide range of psychological issues.
Please stand up for chronically ill Wisconsinites and pass legislation protecting Wisconsin doctors who treat Lyme patients and demand insurance carriers to cover chronically infected patients.
Sincerely,
Alicia Cashman
Madison Lyme Support Group
https://madisonarealymesupportgroup.com
https://about.me/lymecoordinator56
Madison Area Lyme Support Group 