Per the response below the CDC is refusing to answer any additional questions regarding a new species of Borrelia in the Hudson Valley, NY area found in a serum sample from the CDC’s serum repository. The questions unanswered can be found in Part 2 of these updates: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/15796418 Before reading the CDC reply below, here is a review the CDC’s track record: 1. RFK Jr.: CDC Vaccine Program a 'Cesspool of Corruption' http://www.newsmax.com/Newsfront/RFK-Jr-vaccine-CDC-cesspool/2015/06/01/id/648103/?ref=fb#ixzz43eE2NMxq 2. A recent CDC whistleblower announced the suppression of information linking the MMR vaccine to autism. http://www.morganverkamp.com/august-27-2014-press-release-statement-of-william-w-thompson-ph-d-regarding-the-2004-article-examining-the-possibility-of-a-relationship-between-mmr-vaccine-and-autism/ 3. CDC misled District residents about lead levels in water, House probe finds http://www.washingtonpost.com/wp-dyn/content/article/2010/05/19/AR2010051902599.html 4. U.S. Congressman Compares Corruption in CDC's Vaccine Safety Studies to SEC's Handling of Bernie Madoff Scandal http://www.prnewswire.com/news-releases/us-congressman-compares-corruption-in-cdcs-vaccine-safety-studies-to-secs-handling-of-bernie-madoff-scandal-255471691.html 5. Untreated syphilis in the male negro (Watch video) http://vimeo.com/user5503203/review/103711143/91f7d3d4d8 6. Questions CDC suppression of data regarding links between housing trailers provided to Katrina victims and cancer. http://truth-out.org/archive/component/k2/item/76273:cdc-under-investigation-over-katrina-cancer-risk 7. Congressional inquiry regarding the CDC’s refusal to release study results regarding hazardous waste sites in the Great Lakes region and associated health problems. http://www.care2.com/news/member/597720583/658207 CDC’s final reply: (Refusal to answer) ________________________________________ From: "CDCExecSec (CDC)" To: runagain@comcast.net Sent: Friday, March 18, 2016 11:00:05 AM Subject: Lyme Disease Communication with CDC Dear Mr. Tuttle: Thank you for your continued interest in the Centers for Disease Control and Prevention’s (CDC) efforts related to Lyme disease. CDC appreciates your concerns regarding Lyme disease and Borrelia species. CDC is committed to advancing our understanding of Lyme disease using the best available science. Through past communications, our subject matter experts have provided you with CDC’s most up-to-date scientific information to address your concerns and respond to your inquiries. At this time, we have no new information to share with you. Please send all future communication to my office at CDCExecSec@cdc.gov. I have instructed all CDC staff to forward to my office all future communication from you, as well. Sincerely, Office of the Chief of Staff, CDC __________________________ Follow-up letter to Senator Jeanne Shaheen’s Washington, DC Office: ________________________________________ From: "Carl Tuttle" To: "eric waskowicz" Sent: Friday, March 18, 2016 3:17:27 PM Subject: Email from Carl Tuttle with transcript of today's phone conversation March 18, 2016 Senator Jeanne Shaheen 506 Hart SOB Washington, DC 20510 Attn: Eric M Waskowicz, Staff Assistant eric_waskowicz@shaheen.senate.gov Dear Eric, Thank you for talking with me today regarding the CDC’s inadequate response to Lyme disease. I have summarized our telephone conversation below. I am the Change.org petition organizer calling for a congressional investigation into the mishandling of Lyme disease here in America with 33,100 signatures growing worldwide. (42 countries) https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf There are a dozen states that have enacted legislation to protect clinicians who treat Lyme beyond the one-size-fits-all treatment guideline as these courageous doctors have been harassed by medical boards and some have lost their license to practice. Massachusetts is attempting to pass legislation requiring insurance companies to pay for chronic Lyme disease. Bills aim to expand coverage in treating Lyme disease http://www.telegram.com/article/20150316/NEWS/303169604 The State of Virginia passed a bill requiring physicians to inform patients that a negative Lyme disease test doesn’t necessarily mean that you don’t have Lyme disease. NEWS: Virginia governor signs Lyme bill https://www.lymedisease.org/virginia-gov-signs-lyme-bill-2/ There are Lyme disease support groups in nearly every state across the nation with nineteen in Pennsylvania alone. These support groups help patients navigate a medical system practicing willful ignorance misguided by the CDC and Infectious Diseases Society of America. The CDC has misclassified Lyme as a simple nuisance disease whereas our children end up in wheelchairs, seemingly healthy individuals drop dead from Lyme carditis and Dr Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for four years. 1. Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’ NEW YORK (CBSNewYork) — A 12-year-old girl who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York Thursday was “the most precious moment of my life.” Source: http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/ 2. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. (March 2016) http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract Excerpt: “Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.” 3. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy http://www.dukechronicle.com/articles/2015/05/28/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy#.VYlYnxtViko 4. Yolanda Foster: Yolanda Foster on Lyme Disease: I've Lost Ability to Read, Write, Watch TV http://www.usmagazine.com/celebrity-news/news/yolanda-foster-on-lyme-disease-ive-lost-ability-to-read-write-2015191 5. Amy Tan: SLyme Disease: How A Speck Changed My Life Forever http://www.humanthology.com/lyme-disease/2014/9/15/slyme-disease-how-a-speck-changed-my-life-forever 6. Averil Lavine: Avril Lavigne Opens Up About Her Health Crisis: 'I Was Bedridden for 5 Months' http://www.people.com/article/avril-lavigne-lyme-disease-bedridden 7. CDC Case Study #1: Three Sudden Cardiac Deaths Associated with Lyme Carditis:http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w 8. CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis http://www.cardiovascularpathology.com/article/S1054-8807(15)00025-3/abstract?rss=yes 9. Australians with Lyme disease 'being treated worse than a dog riddled with mange' Source: http://www.abc.net.au/7.30/content/2015/s4386727.htm Eric, is this the Lyme disease you are familiar with? I have roughly 700 scientific articles supporting chronic Lyme disease or persistent infection: (suppressed evidence) 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). It appears that we have been dealing with an antibiotic resistant/tolerant superbug: 1. Researchers’ discovery may explain difficulty in treating Lyme disease http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/ Excerpt: “Northeastern University researchers have found that the bacterium that causes Lyme disease forms dormant persister cells, which are known to evade antibiotics.” 2. Evidence of in vivo existence of Borrelia biofilm in borrelial lymphocytomas http://wtnh.com/2016/02/23/unh-discovers-biofilm-in-those-affected-by-lyme-disease/ Excerpt: “An article by a UNH research team led by Professor Eva Sapi is the first to show that the microorganisms that cause Lyme disease are resistant to treatment due to what’s called a biofilm. A biofilm – which has a protective layer of “slime” – allows the organisms to hide away from antibiotics at the microscopic level.” _________________ Why would our CDC, members of the IDSA and ALDF want to suppress a serious disabling disease or conceal an antibiotic resistant/tolerant superbug? This makes absolutely no sense at all and should be the very first question (among many) for a congressional investigation. Here is another example of the American Lyme Disease Foundation (ALDF) downplaying the severity of Lyme disease: 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 The CDC awarded Dr Gary Wormser of New York Medical College 1.5 million taxpayer dollars to downplay the seriousness of Lyme disease as his study excluded the sickest of patients focusing on the acute stage of disease after early treatment. How obvious is that? You would not see a cancer study where stage IV cancer patients are deliberately excluded. The following link will take you to my complaint against Dr Gary Wormser of New York Medical College registered with the Office of Research Integrity: Scientific misconduct or criminal offense? https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/14006106 I submitted a FOIA request to the CDC asking for the name of the institution and researcher who collected Lyme disease blood samples for the CDC’s serum repository and had difficulty obtaining this information until I got Senator Kelly Ayotte’s office involved. (See attached documentation) The CDC relies on these standard serum samples to evaluate new test kit developments. When blind coded serum samples were sent to Milford Molecular Diagnostics to evaluate a new DNA Sequencing test, other species of Borrelia (The bacterium that causes Lyme disease) were isolated in a number of the CDC serum samples. An entirely new species yet to be identified was completely ignored by the CDC. How can the CDC use these serum samples from their serum repository to gauge the accuracy of newly developed Lyme disease test kits when they don’t know what they contain? There is a four part paper trail for this serious concern here: (This should be read) New species of Borrellia in the Hudson Valley, NY area? https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/15557618 Part 2: New species of Borrellia in the Hudson Valley, NY area? https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/15796418 Part 3: New species of Borrellia in the Hudson Valley, NY area? https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/15826757 Part 4: New species of Borrelia in the Hudson Valley, NY area? https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/15869378 My comment: Current FDA approved Lyme disease tests (Antibody tests) cannot be used to gauge treatment failure or success which is ideal for concealing an antibiotic resistant/tolerant superbug allowing the thirty year old dogma to remain intact. Culture along with DNA Sequencing has the potential to identify persistent infection which the CDC appears to be avoiding at all costs. Confirming an antibiotic resistance/tolerant superbug puts Lyme in an entirely different class of infection requiring immediate attention. As more and more of the world’s population become’s horribly disabled from Lyme it has become crystal clear that the CDC has colluded to deny a life-altering/life-threatening infection. “Post Treatment Lyme Disease Syndrome” is a simply a fabricated medical condition disguising treatment failure. Lyme disease has been portrayed by the CDC and Infectious Diseases Society of America as little more than a “nuisance” disease; hard to catch and easily treated. Lyme disease was pigeonholed into its current status by the two principal investigators of the previous Lyme disease vaccines; SmithKlineBeecham's LymeRix and Connaught's vaccine (which never made it to market) as these investigators conceptualized a disease that would enable vaccine development. A preventive vaccine for Lyme disease would not satisfy the FDA if a chronic persistent infection and seronegative disease exist. The lead author of the one-size-fits-all Lyme treatment guideline (which matches the conceptualized disease) was the principle investigator of Connaught's Lyme vaccine, Dr Gary Wormser. This is a flagrant conflict of interest! Have we been dealing with an antibiotic resistant superbug purposely concealed to promote vaccine development? Senator Ted Kennedy launched an investigation into the CDC’s Tuskegee syphilis experiment where syphilis was injected into unsuspecting black servicemen, left untreated and then followed to see what health consequences developed: http://www.cnn.com/2010/HEALTH/10/01/guatemala.syphilis.tuskegee/ Anyone who thinks that the CDC is incapable of mishandling Lyme disease hasn’t experienced the infection in the later stages of disease which is leaving so many disabled and nowhere to turn. A congressional investigation of the CDC, IDSA and ALDF is long overdue. This deception to the American people has not only caused untold pain and suffering but has influenced the nation's perceptions and the medical community’s response to Lyme disease while ongoing for over thirty years. This is why we are calling for a congressional investigation as Lyme has been horribly mishandled while our medical community has been misinformed and misguided. You are only a tick bite away from experiencing this disaster! We would like a position statement from Senator Jeanne Shaheen in reference to our respectful demands for a congressional investigation. Sincerely, Carl Tuttle 33 David Dr Hudson, NH 03051 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