Every week or so, we in the Lyme community hear of another Lyme - TopicsExpress



          

Every week or so, we in the Lyme community hear of another Lyme advocate who has died from Lyme Disease. This week its Leslie Feinberg, a trans activist who went undiagnosed for 30 years. In Causality of an Undeclared War, she asked: Why is the testing, diagnosis, and treatment of Lyme a battlefield, especially at a time when Lyme and other tick borne co-infections have reached epidemic proportion across the United States and around the world, and are still growing? She goes on to outline what she sees as the main causes of this conflict, through a dialectical and historical materialist lens (shes a marxist). It occurs to me how much I owe to these advocates. It is on their lives, and in their bodies that this battle has been fought. Thanks to their work, I was diagnosed within 6 months of infection, which may mean that I can live longer, and with less pain, than they did. Yet still, to this day, Chronic Lyme Disease is not recognized by the Center for Disease Control as a real condition. Therefore: Insurance companies do not cover treatment for the disease. In many places it is illegal for doctors to treat Chronic Lyme Disease. There is very little research being done to understand its transmission and its unprecedented ability to thwart antibiotic treatment. Many people still go undiagnosed for decades simply because most doctors do not know the signs of Lyme infection. It also occurs to me that the work I will undoubtedly do throughout the remainder of my life to raise awareness about the medico-political situation surrounding Lyme Disease will not be done for myself. There is little hope that things will change in time to help me. These things move slowly, after all. But just like I am indebted to people like Ms. Feinberg, I am responsible to the people who, 10 years from now, will be fighting the same fight that she, and I, and thousands of others in this country are fighting today. Ive never felt so much a part of history, before, or so much a part of anything, really. Ive never been a part of something I didnt have the ability to leave if I so wished. From this, one last thought that occurs to me: community, that thing we in the US (and especially in academia) so often lament the loss of, is inevitable, but it cannot grow from or be founded on anything other than necessity.
Posted on: Thu, 20 Nov 2014 03:58:27 +0000

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