**BIG NEWS!!** Just this past week, on May 3rd, 2017, Chronic Lyme became a recognized condition! ILADS did an excellent job of laying out the case definition, including 700 peer reviewed case studies to back it up. It will take some time for doctors, insurance companies, the CDC, IDSA, etc., to adopt and accept the recommendations for better treatment and testing….but it was a giant step…no, a giant leap forward, and one of the things that we have all been fighting for….with our very lives. Congrats to the entire Lyme community….please hang on, because this is just the beginning! Pennsylvania also agreed to write the bill to allow coverage for longer term antibiotics this week. Another leap forward…now we just have to be patient a bit longer, and once these take effect….its like a snowball on a hill. WE HAVE BEEN HEARD!! That doesn’t mean we can stop….keep rallying, keep spreading awareness, advocate for yourself and others, research the TRUTH, and call government officials to help pass a bill in every state for better treatment. (Click the link to read the case definition…and print for your doctor ;)) #inthistogether
Now…on to the site….just had to share that, front and center! 🙂
Lyme Disease is the fastest growing vector-borne, infectious disease in the United States. This should be of great concern to every person, in every state, and I’ll explain throughout this site, why it is a much larger problem than the CDC would like our nation, or the world to know about.
Dr. Paul Mead, former chief of epidemiology and surveillance for the CDC’s Lyme Disease program, confirms that Lyme Disease is a ‘tremendous health problem’ in the United States. Although he recognizes the problem, neither he, the vast majority of our healthcare system, the CDC, or the IDSA will recognize Chronic Lyme Disease. This disease is far more prevalent than reported, devastating, and can be fatal in the tertiary stage. Lyme Disease becomes chronic after the 6th week of infection, and at this point, has permeated vital organs, the nervous system, connective tissue, bone, even the brain. Once chronic, it becomes much more difficult to treat, and this is where many problems arise..from treatment options, lack of insurance coverage, debilitating symptoms and the increased presence of other chronic illnesses.
The IDSA set the treatment guidelines for the CDC, and firmly stand behind their claims that every person that contracts Lyme, can be ‘cured’ in 21-30 days of antibiotic treatment. Insurance coverage is cut off at that point, regardless of whether you are better or not. There are a multitude of problems regarding the guidelines, and it has impacted millions of lives, leaving people hopeless, disabled..comparable to living with congestive heart failure, bankrupt, homeless, misunderstood or wrongly labeled as lazy, told it’s ‘all in their heads’, and even suicidal. The Infectious Diseases Society of America (IDSA), have some serious conflicts of interest related to vaccines, insurance and Lyme testing. The sheer fact that they set the guidelines for the CDC is appalling. The IDSA failed to conduct a review for any panelist, regarding conflicts of interest, prior to appointing them to the 2006 Lyme Disease guidelines panel. The chairman of the IDSA held a bias regarding the mere existence of Chronic Lyme, and handpicked likeminded panel members. In 2000, and again in 2006, the panel refused to accept or even consider vital information, presented by reputable scientists and doctors, that clearly showed evidence of chronic, or ongoing infection, after the treatment set forth by their guidelines. They even dismissed a panel member who risked a full consensus, and denied entry of scientists and doctors with differing views on Chronic Lyme, stating that the panel was full, when it was not. They later expanded the panel with more likeminded members who would not challenge their views.
The CDC reported 3,000 cases of Lyme each year, then 30,000, but in 2013 they reported it was closer to 300,000. This could be the result of the award winning, beautifully executed, raw truth brought forward in the documentary ‘Under Our Skin’. It is believed that that number is actually closer to 1+ million each year, since not every doctor, or every state is required to report cases. There are also many myths about Lyme, or misinformation, especially coming from members of the IDSA, and this is incredibly detrimental to the public. If you are someone who was recently diagnosed, or has a friend or loved one that has, or suspects Lyme, I cannot stress enough how VITAL it is to disregard information reported by any member of the IDSA or the CDC. If you want accurate information, the International Lyme and Associated Diseases Society (ILADS) is a reliable, respected, truthful group. You will receive accurate advice regarding all things Lyme, including its co-infections, most reliable testing options, doctors in your area that will treat (Chronic) Lyme, real statistics, symptoms, etc..
If you are new to the ‘Lyme World’, please look around this site for facts, ‘ugly truths’, support, different treatment options shared by patients (including alternative), rants, humor and most importantly…HOPE.