UPDATE 9 - Your Comments on Lyme Corps and the CDC Lyme Failures Greetings from Jenna, I just wanted to share some responses to my recent posts on Lyme Corps and the deep governance issues driving CDC's failures to protect the public from the Lyme epidemic. There are so many comments...I am just selecting a small number to represent this wide spread damage. Thank you for voicing your truth! Sharen Spencer, Lowell, IN - 3 IN MY FAMILY HAVE LYME DISEASE Christine Cipra, Oak Park, IL - I've experienced dangerous and disabling effects from Lyme and its co-infections. I've also witnessed ridiculous levels of heart breaking situations because of Lyme Corps and the ignorance it spreads. Lee Stevenson, Mercer, PA - The CDC has trampled too many rights... Something needs done about their total lack of respect for the laws and operations of the government... Mike Kleinman, Monroe, NY- The CDC guidelines are just plain wrong and harmful to Lyme patients Ashley Ferraro, Hewitt, NJ - I was wrongly diagnosed from 2007 until 2011 when I was finally diagnosed with Lyme disease and I have had to be treated continuously since then. I am only 21 years old now. Carl Tuttle, Hudson, NH - A recent taxpayer funded NIH study designed by Dr Gary Wormser of New York Medical College is one example of the ongoing effort to downplay the seriousness of Lyme disease as he excludes the sickest of patients focusing on the acute stage of disease after early treatment. The deceptive results of his study is then assumed to apply to the entire patient population giving the impression that Lyme is a simple nuisance disease and patients who are severely disabled are somehow delusional. A complaint was registered with the Office of Research Integrity. This was a 1.5 million dollar grant from the CDC to Wormser for the ongoing collusion to deny a life-altering disease. It is blatantly obvious. See Phillip Baker and the 21st Century Plague: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/14500086 Kathryn Vast, Healdsburg, CA - My husband's Lyme disease went undiagnosed for 20 years. Lynne O'Kelly, Tyler, TX - I'm signing because I am one of those Lyme patients who cannot get medical care. The CDC is literally allowing me to die from this disease. In the meantime, my family and I are financially and emotionally devastated. Jeff Carmichael, Saint Peters, MO -I have been diagnosed with chronic Borrelliosis Kristin Barta, Lowell, IN - I have Lyme disease and so do my two daughters Barbara Meyer-mitchell, Norwalk, CT - There is no excuse for using tax dollars to disseminate bad information. My life and that of my children could have been vastly different if the CDC was more honest about Lyme testing and treatment. Lyme disabled me, and has had a significant impact on both of my children. Please use our tax dollars for research to find better testing and a cure, not to misinform the public. Esther Barclay Seattle, WA - My cousin has had to fight every step of the way to find and get proper diagnosis and treatment for her Lyme disease. This effort is very important. Thomas O’Grady, Glasgow, United Kingdom - Wake up people are dying from this illness NOEL ARBOGAST, BALTIMORE, MD - I’m signing because at age 38 my life as an active, confident, career-oriented, mother of 2 came to a halt shortly after 3 ticks were found embedded on my body. 3 years later, I continue to suffer each and every day. I can’t keep that a secret and neither should any agency be "allowed" to. Shame on you. Laura Watt-Closser, Springfield, MA - I have chronic neurological Lyme disease Roseann Bufalino, Rocky Point, NY - I have suffered with Lyme since 1980's and there is no excuse for not having proper diagnosis, treatment, medical and insurance benefits. The CDC and other agencies have been put in place to protect and serve us. They need to do their jobs before more die from the disease they claim doesn't exist. Carol Sardhinia – a Healthcare Business, Policy, Marketing Communications and Public Affairs Professional "Recent [Lyme Corps] surveys indicate that provider practices are often inconsistent with current guidelines." That's because almost no one recovers from Lyme disease based on 3-4 weeks of antibiotics. The few Lyme-literate doctors who treat Lyme patients regularly in their practices know that these guidelines are inaccurate, and quite frankly, ridiculous. Lyme is very prevalent in the Mid-Atlantic region where I live, and I know of at least a dozen people who have had it and/or still have lingering symptoms. I worked with someone who had Lyme who had to take antibiotics for 2 years. I know at least three others who were on them for 6-24 months, and one other who was on them for 4 years. (Four of these patients are doing very well at this time but one is not.) "Inaccurate information about Lyme disease is disseminated broadly through internet forums, social media, and traditional media [Lyme Corps]." I guess the CDC is referring to the thousands of stories on the internet, in books, and in newspaper articles, of actual patients who have suffered terribly for years... They can't possibly still have Lyme because, you see, it's cured with 3 weeks of antibiotics... I personally know too many people who -- had they only gone to doctors who followed these guidelines -- either would be disabled or dead by now. Unfortunately, I also know at least two people who are already very disabled by Lyme because they never got diagnosed and treated early and/or aggressively enough. The [Lyme] guidelines are a joke. Unfortunately, the pain, disability, and financial and social hardships suffered by many Lyme patients and their families is nothing to laugh at. I have seen it first hand with my best friend's daughter, and it is horrifying, sad, and tragic beyond words…