Letter to the Mayo Clinic: (Feel free to distribute) ________________________________________ From: "Carl Tuttle" To: newsbureau@mayo.edu Cc: "Pritt Bobbi" , mml@mayo.edu, scalderwood@partners.org, rfk1@cdc.gov,txf2@cdc.gov, isaya@mayo.edu, "patel robin" , "kaufmann scott" , "karalius vytas" , "Dick Blumenthal" , "neva varsalone" , "Bud Fitch" , "Kemp Hannon" , "Serino" ,bonacic@senate.state.ny.us, "matt sheehey" , "Daniel Auger" , "Shaylyn Kelly" Sent: Sunday, February 7, 2016 1:05:27 PM Subject: Mayo Researchers Identify New Borrelia Species that Causes Lyme Disease Mayo Researchers Identify New Borrelia Species that Causes Lyme Disease Friday, February 5, 2016 http://newsnetwork.mayoclinic.org/discussion/mayo-researchers-identify-new-borrelia-species-that-causes-lyme-disease/ Feb 7, 2016 Mayo Medical Laboratories 3050 Superior Drive NW Rochester, MN 55901 To Whom It May Concern: Thanks goes out to researchers at the Mayo Clinic for identifying yet another species of Borrelia causing Lyme disease here in America. (Borrelia mayonii) This comes after recent findings of Borrelia bissettii in the south and Widespread Borrelia miyamotoi Tick-borne Fever Found in US. Borrelia bissettii: http://www.ncbi.nlm.nih.gov/pubmed/26846867 Borrelia miyamotoi: http://www.medscape.com/viewarticle/846337 Current serology for diagnosing Lyme disease is designed for one strain; Borrelia burgdorferi so you can be sure patients who have contracted other strains are told they do not have Lyme disease and are not treated for their infections. Seronegative Lyme disease is all too common and yet unrecognized in the medical community. (See attachment) I am the Change.org petition organizer calling for a congressional investigation of the CDC, IDSA and ALDF for the mishandling of Lyme disease here in the United States. https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf The petition has collected signatures and heart wrenching comments from disabled Lyme patients in forty-two countries. (32,580 signatures growing worldwide) My comment posted to the Luxemburger Wort article: 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 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. For the past thirty years the focus on Lyme disease here in the United States has been on the acute stage of disease therefore we have no IDSA established treatment guideline for the advanced Lyme patient who becomes wheelchair bound or bedridden due to a prolonged exposure to infection before diagnoses and initial treatment. Wheelchair bound: http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/ Patients who went months, years or even decades before diagnosis are almost always incapacitated but these patients have been deliberately ignored, chastised and labeled delusional. Late stage Lyme doesn’t exist in the minds of those fixated on the acute stage and this is controlling the narrative. Why? This control has influenced the nation's perceptions and the medical community’s response to Lyme disease. There is a mountain of suppressed scientific evidence indicating that we have been dealing with an antibiotic resistant/tolerant superbug deceptively concealed by the Centers for Disease Control, members of the Infectious Diseases Society of America and The American Lyme disease foundation. Peer reviewed scientific evidence has proven antibiotic resistance time and time again: Antibiotic resistant/tolerant superbug: http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/ Peer Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases after the mandated one-size-fits-all IDSA treatment approach: (700 articles) http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf We acknowledge drug-resistant bugs as a major health problem; methicillin-resistant Staphylococcus aureus (MRSA), vancomycin-resistant Enterococcus (VRE), multi-drug-resistant Mycobacterium tuberculosis (MDR-TB), Neisseria gonorrhoeae and Klebsiellapneumoniae carbapenemase-producing bacteria (KPC). Why is there collusion to deny a life-altering infection? There are Lyme support groups in nearly every state across America with nineteen in Pennsylvania alone! We have Lyme legislation in over a dozen states protecting doctors who treat beyond the IDSA’s one-size-fits-all treatment guideline for Lyme disease. Does this sound like the CDC and IDSA have it right? Collusion: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/14500086 “Post Treatment Lyme Disease Syndrome” is a simply a fabricated medical condition disguising treatment failure. Until governments, politicians and health agencies around the globe wake up and recognize that the United States has had it wrong all along they will continue to blindly follow what has been deceitfully established here in the United States. All citizens of every country will suffer the same fate as the Lyme patient population does here in America and has for the past thirty years. Recognition of the open ended ILADS treatment guideline is the best we have available at this time. ILADS treatment guideline: http://www.ilads.org/lyme/treatment-guideline.php Recent US Government funding from the Centers for Disease Control has been misused in a deliberate and coordinated downplay of the seriousness of Lyme disease with its life-altering consequences while focusing once again on the acute stage of disease after early treatment: Long-Term Assessment of Health Related Quality of Life in Patients with Culture-Confirmed Early Lyme Disease https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/14006106 What is truly needed here is a Manhattan Project on a global scale: Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic Raphael B. Stricker and Lorraine Johnson http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3879353/ This thirty year travesty is a crime against humanity on a scale much larger than the holocaust as this unrecognized 21st Century plague rages out of control and not isolated to a single continent. The Australian senate inquiry should be questioning the United States for the fraudulent handling of Lyme disease now affecting the citizens of Austrailia. Lyme disease: Australians 'being treated worse than a dog riddled with mange', Senator John Madigan says http://www.abc.net.au/news/2016-01-11/lyme-disease-treatment-in-australia-criticised-by-john-madigan/7080708 Respectfully submitted, Carl Tuttle Hudson, NH When “evidence based medicine” has been spun to fit bias agendas and the patient voice has been intentionally ignored who investigates the dishonest science? Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF (32,600 signatures from 42 countries) Letter to the Editor, The Lancet Infectious Diseases Published May 2012 http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70054-3/fulltext Response to the BMJ article: Seven alternatives to evidence based medicine published April 1, 2014 http://www.bmj.com/content/319/7225/1618/rr/692597 I have over 500 pages of comments like the ones below collected by the petition calling for a congressional investigation into the mishandling of Lyme disease: COMMENTS: My 16 year old daughter has late stage, neurological Lyme Disease. I have watch over the past several years as she has had to give up so much. She has stopped playing sports (basketball, soccer, and softball), dancing, eating many different foods, going to school, and even just spending time with friends. We have been to many different doctors with many different specialties looking for answers and have finally received a clinical diagnosis of Lyme Disease from two doctors who are working together to try to help her. The challenge now is to get her strong enough to endure the treatment that she is facing. We are told it may take years of treatment to get her to a reasonable quality of life. It is devastating to see my daughter struggle with all of this at a time when her friends are enjoy things like prom, graduations, and even just youth group activities while she sits at home suffering. This is a terrible disease! Catherine Weakley, Virginia Beach, VA My best friend's life has been devastated by Lyme Disease for the last several years. If only her doctors had taken her concerns and symptoms seriously in the beginning and administered the proper tests, she may not have gone through so many years of pain. I accompanied her to these appointments and watched first hand as her symptoms were ignored and mis diagnosed over and over again. She has gone through years of suffering that could have been prevented had she been diagnosed at the start and given antibiotics. For the sake of her and the many others who are suffering needlessly I urge you to investigate this matter fully and support education, awareness, acceptance and action throughout the medical community. Samantha Erin Barragar, Malibu, CA I have been suffering from Neurological Lyme Disease since I was 15 years old. A year and a half ago, I had a serious flare up that has left me disabled with seizures, tremors, cognitive issues, immobility, and chronic pain. The severity of this disease should not be overlooked, and warrants significant research. The outdated and immoral IDSA guidelines must be investigated for the sake of all current and future persons infected with Lyme. Our voices deserve to be heard! Caren Dandeo, Middletown, NJ I'm positive for lyme and co infections and was getting better with treatment, then insurance stopped paying. I'm wheelchair bound now and cannot stand, move, or take care of myself. United HealthCare cited the CDC guidelines of 28 days of antibiotics of treatment. THAT'S NOT ENOUGH. Doug Frenz, Hudson, OH I'm only 20 years old and I've suffered from Lyme Disease for the past 6 years of my life. For the first few years of my disease I went undiagnosed; doctors would tell me I was crazy, and I continued to get sicker and sicker. My 15 year old sister is also really sick with Lyme and has been for years. It breaks my heart. There has to be something serious done about this epidemic, and fast. Niki Mitchell, Binghamton, NY, NY My 4 Lyme tests came back "negative" according to my PCP's. I was "negative" for 8 years while I did indeed have Lyme. When I visited 2 LLMD's they both verified that I had Lyme. Had it been caught 8 years prior it could have been cured. Instead, it spread to all parts of my body and brain. I in turn became a burden on the healthcare system and lost all of my assets. Accurate testing MUST be developed! Serenaty S, New York, NY I am disabled, in a wheelchair, and currently on IV medicine to try and kill off Lyme, Babesia, and Bartonella. I am in huge debt because insurance refuses to pay for anything - not doctor visits, not medicine, nothing. Too many are sick and dying. Enough. Wendy Vogt, Redwood City, CA My husband has been diagnosed with neurological lyme and the coinfections of bartonella and babesia. We spent years going form doctor to doctor trying to find out what he has. His illness reached the point where he is no longer able to work. Our insurance company will not approve the IV antibiotics he needs to get better due to the current CDC guidelines. The illness does not just affect the patient but the entire family. Lyme needs to be addressed. Kathy Wilder Bichler, Fair Lawn, NJ Spent over $100,000 dollars to get our son well in Oklahoma. 21 doctors would not recognize Lyme disease because of ignorance. We went out of state to find a LLMD. It is an awful disease and in so many ways. His Lyme test only had one band positive so according to the CDC is not proof of Lyme. Well wrong...he was pulled 5 ticks off himself and 3 days later severally I'll for the next 2 1/2 years of being homebound. We where lucky we had a savings but I took our retirement money. Diana Clock, Bixby, OK Message to the CDC: ________________________________________ From: "Carl Tuttle" To: media@cdc.gov Cc: nzp0@cdc.gov, cbb0@cdc.gov Sent: Monday, February 8, 2016 3:58:44 PM Subject: Re: Mayo Researchers Identify New Borrelia Species that Causes Lyme Disease CDC Press Release New Lyme-disease-causing bacteria species discovered Borrelia mayonii closely related to B. burgdorferi http://www.cdc.gov/media/releases/2016/p0208-lyme-disease.html From that article: CDC works 24/7 protecting America’s health, safety and security. Whether diseases start at home or abroad, are curable or preventable, chronic or acute, stem from human error or deliberate attack, CDC is committed to respond to America’s most pressing health challenges. To: Jeannine Petersen and Ben Beard, As more of the world’s population experiences Lyme disease and becomes horribly disabled it has become crystal clear that the CDC has been involved in the collusion to deny a life-altering/life-threatening infection. Carl Ttuttle Hudson, NH