We’re Not Gonna Take It: Fighting for Lyme Patient Advocacy By Paula Jackson Jones

Not Gonna Take It” came to mind. Allow me to share some lyrics and you’ll see the connection:


We're not gonna take it No, we ain't gonna take it We're not gonna take it anymore We've got the right to choose it There ain't no way we'll lose it This is our life, this is our song We'll fight the powers that be just Don't pick our destiny 'cause You don't know us, you don't belong We're not gonna take it No, we ain't gonna take it We're not gonna take it anymore

12 ELM™ Maine - May/June 2019

hen I was composing this month’s article, eighties rock group, Twisted Sister’s, “We’re

Journalist Mary Beth Pfeiffer first

reported back in 2017, that for nearly a generation, a small group of physician- researchers has directed how Lyme disease is diagnosed and treated in the United States, Europe and, as the disease spreads, Canada and Australia too. As a result, US insurance companies routinely refuse to pay for antibiotic treatments longer than 28 days. Doctors have been punished for prescribing them. Patients have been told their lingering problems are psychological or they have other sickness.

Lyme Disease Care

A lawsuit filed in Texas asserted that the design and implementation of Lyme disease care, as outlined in the treatment guidelines of the Infectious Diseases Soci- ety of America (IDSA), is rooted in corrup- tion. It asserts that key architects of Lyme policy, naming seven physician-research- ers, took money from and worked with insurers to develop guidelines that allowed claims to be denied.

That suit, Torrey v. Infectious Disease

Society of America et al, just advanced last month based on a judge’s decision that there was adequate evidence to proceed. Finally, a federal lawsuit that just may validate the pain of thousands of Lyme disease patients and the flaws in prevailing tests and treatments. Pfei- ffer reported in February 2019 that, “the lawsuit’s progress is a big development in the decades-old struggle of patients whose post-treatment conditions involving myriad neurological, cognitive, musculo- skeletal, and cardiac symptoms have long been misdiagnosed and minimized. Pa- tients have hence had to seek out-of-pock- et treatment from physicians who risk their licenses providing it. The suit is a serious challenge to the Lyme status quo.” [You can read the lawsuit in full here: https:// uploads/2017/11/LymeDisease.pdf]

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