Last weekend The Mayday Project protested outside the Infectious Disease Society of America (IDSA) conference in Philadelphia to support those suffering from Chronic Lyme Disease. Specifically they asked for improvement of the IDSA Lyme guidelines, which would allow for more regulated lab testing and treatment for those ill with the disease in its chronic form, which has been scientifically proven, yet not legally recognized.
According to the CDC, Lyme disease is the fastest growing vector borne infectious disease in the US, estimating around 300,000 cases per year. Lyme disease is multi-systemic, affecting even the nervous system, and multi-infectious, including more than just the dreaded Lyme bacteria, Borrelia burgdorferi, but also additional co-infections such as Babesia, Bartonella, Rocky Mountain Spotted Fever, and produced biotoxins, to name a few. This makes the treatment for those chronically infected all the more complex without the right information, and many times unsuccessful with the standard 4 weeks of antibiotics. Documentaries such as Under Our Skin and its sequel, Emergence explain some of the complexities of this invisible, yet very debilitating disease.
On October 10th and 11th, the protesters stood at candlelight in front of the IDSA, encouraging them to revisit current scientific evidence proving the realities of Chronic Lyme, which would ultimately allow patients treatment. The protest focused on the recognition of chronic Lyme, calling for more money for research and treatment. The answer isn’t necessarily longer antibiotics, rather it is recognition of ongoing infection, ongoing oppression of those afflicted, and a striking need for research of this plague that holds eerie resemblance to the 1980’s AIDS epidemic.
Some sufferers of Lyme disease are lucky enough to finally get the correct testing from a knowledgeable doctor, allowing for treatment, and leading to a path of recovery. Even so, many have encountered this only after years of shrugged shoulders from doctors, misdiagnosis, and continued medical isolation. Over 100 people were able to attend the protest in Philly, but hundreds of others shared their support through the live-stream event from home while sick in bed. Many more were still in the fight elsewhere– the fight with insurance companies, the fight with doctors to provide the correct testing, and the fight with their bodies simply to continue the fight.
More About The Mayday Project-
Josh Cutler founded the Mayday Project with Allison Caruana, after his friend’s life was taken by Lyme at 32-years-old. He was struck with the disease himself after a tick bite and forced to replace his career as an engineer with instead agonizing CNS, heart, and fatigue symptoms. After years of misdiagnosis he is finally seeing improvement and regaining his health. They now work with several others who were also touched by Lyme in some fashion: Amber Limbaugh, Tracy Will, Saby Mo, William Duggan, Angele Rice and Crystal OBarr, on the non-profit. They continue to raise awareness about the many injustices of the hundreds of thousands suffering with tick borne illness, and work to encourage more research and advocacy about the disease. As more and more people continue to suffer, and as the numbers of those afflicted by tick borne illness grow, they will be standing in fight for the rights of those who need it most. “I have lost too many friends to this disease,” Josh says, “and I’m not ready to lose more.”