As a follow-up to yesterday’s update here are the remaining emails sent to the World Health Organization. 7th email to the World Health Organization: ________________________________________ From: "Carl Tuttle" To: "Ian Michael SMITH" Cc: "Sylvie BRIAND" , "Dirk A. ENGELS" , "Minghui REN" , "Raymond Bruce J. AYLWARD" , chanm@who.int, asamoa-baaha@who.int, bustreof@who.int, chestnovo@who.int, fukudak@who.int, inoueh@who.int, kienym@who.int, minghuir@who.int, troedssonh@who.int, nord@icddrb.org Sent: Thursday, July 21, 2016 9:13:14 AM Subject: Re: Who’s Global Action Plan on Antimicrobial Resistance July 21, 2016 World Health Organization Avenue Appia 20 1211 Geneva 27 Switzerland Attn: Ian Smith MD, Executive Director of the Director-General's Office Dear Dr Smith, As a follow-up to yesterday’s email regarding Lyme patient Vicki Logan please review the attached seven page autopsy results showing histopathologic findings consistent with neurologic manifestations of chronic Lyme disease. The destructive nature of Borrelia is evident in the liver (nutmeg liver), kidneys, heart, lungs and brain. The patient died after the insurer refused additional IV antibiotic therapy. Lyme disease has been portrayed as hard to catch easily treated: Lyme Disease Is Hard to Catch And Easy to Halt, Study Finds New York Times By GINA KOLATA Published: June 13, 2001 http://www.nytimes.com/2001/06/13/us/lyme-disease-is-hard-to-catch-and-easy-to-halt-study-finds.html Excerpt: “But some who have treated hundreds of patients with long-term antibiotics, like Dr. Sam L. Donta of Boston University Medical Center, were not convinced. The antibiotics in the studies were not given for a long enough time, Dr. Donta said, and he would have chosen different ones. Perhaps all that the studies show, he said, is ‘’that this particular treatment doesn’t work.’’ _______________________ We have been dealing with an antibiotic resistant/tolerant superbug while Post Treatment Lyme Disease Syndrome is simply a fabricated medical condition disguising treatment failure. This thirty year failure to recognize and respond to this destructive superbug has caused untold pain and suffering around the globe. Question for the World Health Organization: Will the Who’s Global Action Plan on Antimicrobial Resistance continue to ignore the overwhelming evidence that Lyme disease is a serious life-threatening/life-altering infection misclassified as a simple nuisance disease? A response is requested. Respectfully submitted, Carl Tuttle Hudson, NH USA 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/ 8th email to the World Health Organization: ________________________________________ From: "Carl Tuttle" To: "Ian Michael SMITH" Cc: "Sylvie BRIAND" , "Dirk A. ENGELS" , "Minghui REN" , "Raymond Bruce J. AYLWARD" Sent: Friday, July 22, 2016 7:44:31 AM Subject: Re: Who’s Global Action Plan on Antimicrobial Resistance July 22, 2016 World Health Organization Avenue Appia 20 1211 Geneva 27 Switzerland Attn: Ian Smith MD, Executive Director of the Director-General's Office Dear Dr Smith, I would like to share the following communication I had with Thomas M. Grier, Executive Director of the Dr. Paul H. Duray Pathology Research Foundation identifying persistent Borrelia infection in a Lyme patient who had been treated with antibiotics for seven years. Dr. Paul H. Duray Pathology Research Foundation: https://durayresearch.wordpress.com/about-2/background/ Tom’s email is imbedded in the letter below addressed to New Hampshire Senator Kelly Ayotte: ---------------------------------------- August 9, 2015 Senator Kelly Ayotte 1200 Elm Street, Suite 2 Manchester, NH 03101-2503 Dear Senator Ayotte, Please take a moment if you will to read the email below from pathologist Tom Grier but first here is an introduction to Tom…… From the following article: Bad Science and Lyme Disease with Tom Grier http://www.holisticsurvival.com/hs-85-bad-science-and-lyme-disease-with-tom-grier/ “Thomas Grier M.S. studied Clinical Immunology and Microbiology at the University of MN Duluth, and began a doctorate program in Geriatrics until the program was discontinued. He then worked on human vaccine development and developed antibody testing to detect bacteria in Pylonephritis. He also worked on a T-cell model of Leukemia in mice trying to target the immune system against Leukemia-Lymphocytic markers to reduce Lymphocyte levels. In 1990, he was misdiagnosed with MS and was finally diagnosed with Lyme Encephalitis in 1991.” Tom’s email to me: (Unedited) ________________________________________ From: "Tom Grier" To: runagain@comcast.net, "Tom Grier" Sent: Wednesday, August 5, 2015 10:58:34 PM Subject: persistent infection case Hello, Thank you for addressing the Wormser mouse study. Also wild strains are difficult to culture. Did he sonicate any organs like the brain to assure Bb escape into the culture media? Attached are two photos from a very special case that I have been working with for years. Scotty Shelton in Saginaw MN lived in a cabin in the largest forest in MN. He was a lumberman for over 30 years and bit by his estimate 30-50x a year. That is over 1000 bites in a lifetime. His health history is as you can imagine complex and dire. His response to antibiotics was unbearable pain. He was on antibiotics for 7+ years and died in Hospice recently. I had his tissues harvested and sent to Excalibur Lab in OK where Paula Pierce did the tissue prep and original staining. Then I sent duplicate samples to Alan MacDonald and they got similar results. Attached are two photos for your web site. Scotty's brain (cerebral cortex) was positive for Borrelia burgdorferi and Borrelia myamotoi, his testicle is positive for Bb. We are now testing other tissues. Seven years of antibiotics and 3.5 years of natural treatments (along with antibiotics) and he was highly highly positive. Alan may present this case at the ILADS meeting. He will certainly use it to promote sexual transmission as Bb was also in Scotty's epididimis. Keep up the fight. List all the things Yale and the IDSA got wrong since 1982 and ask why we call them experts??? Absolute Facts we were told were true for well over a decade by Yale and the IDSA that turned out to be completely untrue. -Only transmitted by the Ixodes dammini tick (a tick that does not exist) Now almost half a dozen species of ticks are implicated in transmission. -Lyme disease is only found in NE USA (Is throughout entire Northern Hemisphere and Australia) -Lyme is only caused by Borrelia burgdorferi (Now 11 species cause Lyme disease) -Lyme is extracellular only (This has been proven wrong repeatedly by pathology) -Lyme is not transmitted from mother to Fetus (once again autopsies going back to 1987 disproves Gary Wormser's denial in 2006) -No evidence of persistence post antibiotics. (Again dozens of pathology studies disprove this statement) -Does not get into the brain (again simply ignoring evidence going back to 1999, and fetal evidence in 1989) -One day dosing prevents Lyme transmission from tick bites. (No evidence for this statement exists see Elizabeth Maloney) -Lyme is only an arthritic disease and does not enter the brain (Alan Barbour MPR 2015) -Lyme species are not related to Tick Borne Relapsing Fever Spirochetes (separating the two diseases serves no useful purpose to patients) -Two-Tiered test is 99-100 percent accurate (CDC web site) -The C6 -peptide is superior to other ELISA tests (it is no better but has the support of people with financial conflicts of interest) -Lyme disease is self limiting and never fatal -Two weeks of doxycycline is adequate treatment and lingering symptoms is Post Lyme Syndrome. -Lymerix vaccine had no significant side effects Green is Bb Red is Bm (See attached pictures) Tom Grier End of email from Tom Grier ______________________________________________ Senator Ayotte, Tom Grier informed me that Scotty Shelton was bedridden for the last 7 years of his life with symptoms starting decades ago. Shelton claimed to have been bitten 30-50 times per year but as he was bedridden this is clearly a case of persistent infection vs. re-infection. For over thirty years now we have been dealing with an antibiotic resistant superbug purposely concealed by the CDC, members of the Infectious Diseases Society of America and The American Lyme Disease Foundation. Post-treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure. The fraudulent handling of Lyme disease and its misclassification (Hard to catch/easily cured) has never been more evident as more and more prominent patients report total disability from a delayed or untreated infection. (Averil Livigne, [1] Amy Tan, [2] Professor Neil Spector, [3] Yolanda Foster [4]) Lyme disease is a life altering infection when not treated immediately. Testing for Lyme disease performs so poorly (As Barbara Johnson’s study proves [5] ) that many infections go untreated. Persistent infection or “chronic Lyme” was commonly accepted prior to vaccine development for Lyme disease [6,7,8,9,10,11,12] but the CDC and academic medicine have focused on vaccination as a “cure-all” for Lyme; a thirty plus year epic failure [13] and deception. What we have here is collusion to deny a chronic disease; a disease that has spiraled out of control into a 21st century plague. The medical establishment has been led to believe that “chronic Lyme” is a fictitious disease and hundreds of thousands perhaps millions of patients around the globe are left untreated and suffering. Foreign health agencies are blindly following what has been deceitfully established here in the United States; a false perception that Lyme disease is a "minor disease". With your past experience here as Attorney General of New Hampshire you should be no stranger to collusion, deceit, fraud and corruption in government. A congressional investigation into the deliberate mishandling of Lyme disease is long overdue. As long as the research dollars are left in the hands of those who have colluded to deny chronic Lyme, Bills to promote research for Lyme disease are of no value. 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 (29,473 signatures and growing worldwide) Letter to the Editor, The Lancet Infectious Diseases Published May 2012 http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70054-3/fulltext Cc: Senator Richard Blumenthal Congressman Chris Gibson REFERENCES (Thanks goes out to Jenna Luche-Thayer for providing the Steere references) 1. 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 2. 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 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. 2-Tiered Antibody Testing for Early and Late Lyme Disease Using Only an Immunoglobulin G Blot with the Addition of a VlsE Band as the Second-Tier Test http://cid.oxfordjournals.org/content/50/1/20.full 6. Yale J Biol Med. 1984 Jul-Aug; 57(4):481-3.Neurological findings of Lyme disease. Pachner AR, Steere AC. http://www.ncbi.nlm.nih.gov/pubmed/651645 7. Neurology. 1985 Jan;35(1):47-53.The triad of neurologic manifestations of Lyme disease: meningitis, cranial neuritis, and radiculoneuritis. Pachner AR, Steere AC. http://www.ncbi.nlm.nih.gov/pubmed/3966001 8. J Infect Dis. 1985 Jun;151(6):1144-9. Surveillance of Lyme disease in the United States, 1982. Schmid GP, Horsley R, Steere AC, Hanrahan JP, Davis JP, Bowen GS, Osterholm MT, Weisfeld JS, Hightower AW, Broome CV. http://www.ncbi.nlm.nih.gov/pubmed/3998509 9. Zentralbl Bakteriol Mikrobiol Hyg A. 1986 Dec;263(1-2):201-5. Clinical manifestations of Lyme disease. Steere AC, Bartenhagen NH, Craft JE, Hutchinson GJ, Newman JH, Pachner AR, Rahn DW, Sigal LH, Taylor E, Malawista SE. http://www.ncbi.nlm.nih.gov/pubmed/3554839 10. Arch Neurol. 1989 Jul;46(7):790-5. Central nervous system manifestations of Lyme disease. Pachner AR1, Duray P, Steere AC. http://www.ncbi.nlm.nih.gov/pubmed/2742551 11. N Engl J Med. 1989 Aug 31;321(9):586-96.Lyme disease. Steere AC http://www.ncbi.nlm.nih.gov/pubmed/2668764 12. N Engl J Med. 1990 Nov 22;323(21):1438-44. Chronic neurologic manifestations of Lyme disease. Logigian EL1, Kaplan RF, Steere AC. http://www.ncbi.nlm.nih.gov/pubmed/2172819 13. Int J Risk Saf Med. 2011;23(2):89-96. doi: 10.3233/JRS-2011-0527. Neurological complications of vaccination with outer surface protein A (OspA). Marks DH1. http://www.ncbi.nlm.nih.gov/pubmed/21673416 9th email to the World Health Organization: ________________________________________ From: "Carl Tuttle" To: smithi@who.int Cc: briands@who.int, engelsd@who.int, renm@who.int, aylwardb@who.int Sent: Monday, July 25, 2016 9:59:35 AM Subject: Fwd: Nicole Greene, Deputy Director for the U.S. Department of Health and Human Services' Office on Women's Health July 25, 2016 World Health Organization Avenue Appia 20 1211 Geneva 27 Switzerland Attn: Ian Smith MD, Executive Director of the Director-General's Office Dear Dr Smith, I was notified on Friday that Nicole Greene who serves as Deputy Director for the U.S. Department of Health and Human Services' Office on Women's Health (OWH) posted a message on Womenshealth.gov regarding her battle with chronic Lyme disease. “My Life With Lyme:” http://www.womenshealth.gov/blog/my-life-with-lyme.html#.V4uRcSKlZAQ.twitter Her life was severely affected by an infection misclassified as a simple nuisance disease by the CDC, IDSA and ALDF. I have forwarded my communication with the World Health Organization to Ms. Greene as world health agencies around the globe are blindly following what has been wrongly established here in the United States. Lyme disease belongs in the same health threat category as all the other life-altering/life-threatening diseases while public health officials continue to ignore evidence that we are dealing with an antibiotic resistant/tolerant superbug. There is no simple cure for the advanced stage as described by Nicole Greene and the growing number of disabled Lyme patients worldwide. When will the World Health Organization step in and question what has been wrongly established? A response to this inquiry is requested. Sincerely, Carl Tuttle Hudson, USA 10th email to the World Health Organization: ________________________________________ From: "Carl Tuttle" To: smithi@who.int Cc: briands@who.int, engelsd@who.int, renm@who.int, aylwardb@who.int Sent: Sunday, July 31, 2016 4:47:32 PM Subject: Re:Dr. Neil Spector’s personal letter addressed to Massachusetts Governor Charlie Baker Dear Dr. Smith, Please see below Dr. Neil Spector’s personal letter addressed to Massachusetts Governor Charlie Baker. Dr. Spector required a heart transplant after his Lyme disease went four years undiagnosed. (This is a nuisance disease?) Dr Spector’s letter: July 29, 2016 Governor Baker, It is with great concern for the welfare of the residents of the Commonwealth that I urge you to support Bill H4491. I have been an academic medical oncologist and cancer researcher who led the development of two molecularly targeted cancer drugs. I have published basic and clinical research in the top tier, peer reviewed journals. My cancer research and clinical oncology career was launched at the MGH and Dana-Farber Cancer Institute. I am also a survivor of a devastating case of Lyme disease that was misdiagnosed for several years. I have been in clinical and basic for 25 years. As a scientist, I understand there are relative absolutes when it comes to human biology. The real world experience changes medical practice. When I was a resident in training, the dogma was that peptide ulcer disease was caused by stress and increased acid production. The notion it could be caused by a bacterial infection was considered by mainstream medicine as being ludicrous and representing quackery. Scientists who proposed that a bacteria, h. pylori, was an underlying cause of peptic ulcer disease were laughed at. Well, two scientists who were laughed at by the medical community ended up winning the Nobel Prize in Medicine for demonstrating that h. pylori caused peptic ulcer disease. That "wacky" idea changed the practice of medicine in terms of how we treat peptic ulcer disease. There are many other examples of how dogma in our medical system thwarted and delayed seminal discoveries that changed medical practice. People in your state and around the country are suffering, falling through the cracks of our medical system. These folks have Lyme disease and the co-infections that accompany Lyme disease. Similar to the days before the acceptance of h. pylori as a cause of peptic ulcer, there is a dogmatic approach that says that chronic problems from Lyme or co-infections that persist beyond the IDSA algorithm of care does not represent persistent infection. However, based on excellent research from prestigious institutions such as Johns Hopkins Medical Center, hardly a bastion of quackery, we know Borrelia burgdorferi, the bacteria that causes Lyme disease, becomes resistant to the standard antibiotics prescribed according to Infectious Disease Society of America (IDSA) guidelines. We know there is persistent infection in primate studies based on peer reviewed research from scientists at Tulane and other institutions. Some may 'poo poo' preclinical research. The reality is, we as scientists rely on research in the laboratory to model human diseases. We would not have made the transformative strides in Cancer if we had turned our backs on preclinical research. Studies suggesting that prolonged antibiotic therapy is not effective, the basis for the dogmatic approach denying access to additional antibiotics to patients who are physically suffering, are grossly flawed in their methodologies. The truth is, we have failed our fellow human beings who are suffering by accepting a dogmatic approach that is not founded on solid science. In 2016, where cancer patients are afforded cutting edge genomic science to guide diagnosis and treatment, Lyme disease diagnostics are still rooted in less than cutting edge and low sensitivity indirect immune response diagnostics (ELISA and Western blot, the latter I have performed hundreds to thousands in my own research so I'm very familiar with the strengths and weaknesses of the assay). This doesn't take into account the fact there are different variants of Borrelia that might not be detected by current diagnostics. I am not a Lyme disease physician. I had to learn more than I ever cared to know about this disease(s) due to my own misdiagnosed case that necessitated a heart transplant and nearly cost me my life. As a physician- scientist, there are more unanswered than answered questions. For example, does everyone with chronic symptoms after antibiotic therapy for Lyme disease have active, persistent infection or some other pathology triggered by the infection? We currently DON'T have the tools to make that determination. There are numerous examples of infectious diseases that require prolonged antibiotics and cocktails of antibiotics. I fully understand the dangers of unnecessary antibiotic therapy on the development of resistant organisms and on the all important protective normal gut microbiome. Having said that, there are folks whose lives were ruined by Lyme disease until they found compassionate and licensed physicians, many trained in infectious diseases and rheumatology but not members of IDSA who treat these folks with cocktails of antibiotics. Many of the people have their lives restored. Does that prove they have persistent infection as credible peer reviewed published research supports? I'll let you decide. I've met so-called LLMDs [Lyme Literate MDs] who have more practical experience with Lyme disease and co-infections than IDSA counterparts. These LLMDs are thoughtful, read the latest literature, and as best they can, try to improve the lives of people in need. We don't restrict treatment of diabetes MRI endocrinology, or treatment of asthma to pulmonary specialists. Why deny people suffering with Lyme disease access to care from highly experienced clinicians? If you want to focus your attention on the many unanswered questions surrounding Lyme disease and co-infections, I would suggest you look to the State of Texas for innovation. Texas established a $3 billion fund called CPRIT (Cancer Prevention and Research Institute of Texas). CPRIT funds researchers in the state of Texas, in a peer reviewed process, to conduct transformative research. I consider the Commonwealth of Massachusetts to be a highly progressive state when it comes to innovative biomedical research and healthcare delivery. Massachusetts is at the epicenter of Lyme disease. What an innovative move for the state government to establish a research fund, which is sadly lacking at the federal level, to help its citizens and ultimately those around the country by funding research at Mass institutions to develop better diagnostics and therapeutics and greater insight into this disease that for many is not so easy to diagnose and cure. Thank you for your time and consideration. Neil Spector, MD Sandra Coates Associate Professor Medicine Duke University Medical Center Durham, NC 27705" 11th email to the World Health Organization: ________________________________________ From: "Carl Tuttle" To: smithi@who.int Cc: briands@who.int, engelsd@who.int, renm@who.int, aylwardb@who.int Sent: Monday, August 1, 2016 10:35:18 AM Subject: Dr. Sam Donta's Clinical Notes August 1, 2016 World Health Organization Avenue Appia 20 1211 Geneva 27 Switzerland Attn: Ian Smith MD, Executive Director of the Director-General's Office Dear Dr. Smith, Dr. Sam Donta spent a career studying Lyme disease as a professor of medicine and Director of the Boston University Medical Campus Lyme Disease Center. I have attached a copy of his clinical notes in reference to my personal case of Lyme disease. I would like to call attention to the Western blot lab results reported in his clinical notes. Positive results here in the United States require specific bands; two out of three IgM and five of ten IgG. In contrast, China’s Western blot requires a single band (Band 41) for positive results: A Study of the Technique of Western Blot for Diagnosis of Lyme Disease caused by Borrelia afzelii in China* 2013 Mar;26(3):190-200. doi: 10.3967/0895-3988.2013.03.006. http://www.ncbi.nlm.nih.gov/pubmed/23425802 Band 41 as you know represents the antibody against the spirochete’s flagella. There are other spirochetal infections that might produce a positive response to band 41; Syphilis (Treponema pallidum) and periodontal pathogen spirochetes (Treponema denticola). These “other” spirochetes can be easily ruled out if there is a question of false positive Lyme results. Dr. Donta has seen all family members in our household as we were all horribly sick living in this Lyme endemic region of New England. None of us tested positive for Lyme disease following the CDC’s strict criteria for positive lab test results. I have attached a copy of my wife’s Western blot for your review. My wife by the way could barely walk up a flight of stairs without excruciating knee pain and we thought she might require knee replacement surgery. I’m happy to report that my wife’s knee pain has resolved completely after long term antibiotics of three year’s duration. The point I would like to convey here is that had we not seen Dr. Donta, none of us would have been treated. This is not an isolated example! Thousands upon thousands of suffering Lyme patients are told they do not have Lyme disease and are not treated as a result of the strict testing criteria. In addition to the strict test criteria, bands 31 and 34 were removed from the Western blot to facilitate vaccine development. Bands 31 (Outer surface protein A) and 34 (Outer surface protein B) are highly specific to Borrelia so a positive result to either of these two bands confirms infection yet the two most important indicators of infection are no longer offered through standard commercial tests. The human Lyme vaccine was a failure while the two most significant Western blot bands have not been restored. Int J Risk Saf Med. 2011;23(2):89-96. doi: 10.3233/JRS-2011-0527. Neurological complications of vaccination with outer surface protein A (OspA). Marks DH1. http://www.ncbi.nlm.nih.gov/pubmed/21673416 Dr. David Volkman (Lyme researcher) wrote a letter to Dr. Tom Frieden, Director of the CDC asking that the strict criteria for positive results be reevaluated. I have attached a copy of Dr. Volkman’s letter to this email. Dr. Volkman did not receive a response from the CDC. “One way to stop an epidemic is to redefine it by narrowing the disease's diagnostic criteria so tightly that it's hard for any chronically ill Lyme patient to fit the profile and obtain insurance reimbursement.” Dr Smith, I ask the following questions, “How long do we continue to turn a blind eye to the mishandling of Lyme disease here in the United States? Does the World Health Organization have any authority in questioning what has been wrongly established?” A response to this inquiry is requested. Sincerely, Carl Tuttle Hudson, NH 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/ 12th email to the World Health Organization: ________________________________________ From: "Carl Tuttle" To: "Ian Michael SMITH" Cc: "Sylvie BRIAND" , "Dirk A. ENGELS" , "Minghui REN" , "Raymond Bruce J. AYLWARD" Sent: Tuesday, August 2, 2016 10:16:41 AM Subject: Re: Who’s Global Action Plan on Antimicrobial Resistance On July 18, 2016 Dr. Ian Smith wrote: “Dear Sir, I am copying my colleagues working in this area, who will be able to respond to your questions. Regards, Dr Ian Smith” Dear Dr. Smith, I have not heard back from any of your colleagues. Sincerely, Carl Tuttle Response from The World Health Organization: ________________________________________ From: "Sylvie BRIAND" To: "Carl Tuttle" , "Ian Michael SMITH" Cc: "Dirk A. ENGELS" , "Minghui REN" , "Raymond Bruce J. AYLWARD" Sent: Tuesday, August 2, 2016 10:32:29 AM Subject: RE: Who’s Global Action Plan on Antimicrobial Resistance Dear Mr Turtle, One team in my department is in charge of developing a global surveillance system for antimicrobial resistance ( GLASS) http://www.who.int/drugresistance/surveillance/en/ However Lyme disease is not one of the priority pathogens currently traced at global level. As it is a new system that requires standardisation across the globe, priority has been given to a limited number of pathogens to facilitate the exchange of information during the initial development phase. Best regards Dr Sylvie C. Briand Director Pandemic and Epidemic Diseases Department (PED) Infectious Hazard Management (IHM) WHO Health Emergency programme (WHE) World Health Organisation 20 Avenue Appia-1211 Geneva 27-Switzerland briands@who.int Tel +41 22 791 2372 – Mobile +41 79 475 54 65 http://www.who.int/csr/disease/en/ 13th email to the World Health Organization: ________________________________________ From: "Carl Tuttle" To: "Sylvie BRIAND" Cc: "Ian Michael SMITH" , "Dirk A. ENGELS" , "Minghui REN" , "Raymond Bruce J. AYLWARD" Sent: Tuesday, August 2, 2016 12:05:41 PM Subject: Re: Who’s Global Action Plan on Antimicrobial Resistance On Aug 2, 2016 Dr. Sylvie Briand wrote: “Lyme disease is not one of the priority pathogens currently traced at global level” Dear Dr. Briand, The Centers for Disease Control here in the United States recently updated the yearly infection rate for Lyme disease exceeding 300,000 new cases annually. Lyme disease is now six times the AIDS epidemic and twice as prevalent as breast cancer. We have hundreds of thousands if not millions of infected Lyme patients worldwide who have no short term treatment options when the infection progresses to late stage similar to TB. The vast majority of these patients never developed the telltale bulls-eye rash so early treatment was missed. My previous communication gave nine examples/comments from horribly disabled Lyme patients as this disease is life-altering/life-threatening. Lyme is not a nuisance disease like strep throat or tonsillitis and belongs in the same health threat category as similar disabling infections. As I reported earlier Johns Hopkins researchers recently found that Borrelia develops into a cyst form when subject to antibiotic treatment rendering current treatment options useless. No disrespect here Dr. Briand but how is this not considered “antimicrobial resistance?” Sincerely, Carl Tuttle Hudson, NH USA Email to the WHO Advisory Group on Antimicrobial Resistance: ________________________________________ From: "Carl Tuttle" To: jstelling@whonet.org, smithi@who.int Cc: aylwardb@who.int, renm@who.int, engelsd@who.int, briands@who.int, jfacar7@hotmail.com, "antoine andremont" , "Peter Collignon" , "John conly" , pidonado@corpoica.org.co, pjcray@ncsu.edu, galasmf@yahoo.com.ar, rshe@food.dtu.dk, "Rebecca irwin" , maislam@icddrb.org, skariuki@kemri.org, hyosun610@gmail.com, smcewen@uoguelph.ca, "gerard moulin" , "arno muller pro" , antongandjio@yahoo.fr, "patrick otto" , ranjithdpperera@hotmail.com, flaviarossi61@gmail.com, hmscott@cvm.tamu.edu, "j wagenaar" , "rosa peran" , "HendrikJan Ormel" , "e erlacher-vindel" , "lothar kreienbrock" , gmatar@aub.edu.lb, "Takiyah Ball" , aidarakanea@who.int, mumforde@who.int, pereze@pan.ops-oms.org, seoy@who.int Sent: Wednesday, August 3, 2016 10:24:07 AM Subject: Report of the 6th Meeting WHO Advisory Group on Integrated Surveillance of Antimicrobial Resistance Report of the 6th Meeting WHO Advisory Group on Integrated Surveillance of Antimicrobial Resistance 10-12 June 2015 Seoul, Republic of Korea http://apps.who.int/iris/bitstream/10665/190954/1/9789241509534_eng.pdf?ua=1 Jacques ACAR, Antoine ANDREMONT, Peter COLLIGNON, John CONLY, Pilar DONADO-GODOY, Paula FEDORKA CRAY, Marcelo GALAS, Rene HENDRICKSEN, Rebecca IRWIN, Mohammad Aminul ISLAM, Samuel KARIUKI, Hyo-Sun KWAK, Scott McEWEN, Gérard MOULIN, Arno MULLER, Antoinette NGANDJIO, Patrick OTTO, Ranjith PERERA, Flavia ROSSI, Harvey Morgan SCOTT, John STELLING, Jaap WAGENAAR, Rosa M. PERAN, HendrikJan ORMEL, Elisabeth ERLACHER-VINDEL, Lothar KREIENBROCK, Ghassan M. MATAR, Takiyah BALL, Awa AIDARA-KANE, Elizabeth MUMFORD, Enrique PEREZ-GUTIERREZ, Yeji SEO Aug 3, 2016 Brigham and Women’s Hospital Department of Medicine Infectious Diseases 75 Francis Street Boston, Massachusetts 02115 Attn: John STELLING Co-Director, WHO Collaborating Centre for Surveillance of Antimicrobial Resistance Dear Dr. Stelling, The reason I am addressing this letter to you is because you are located in Massachusetts where legislators recently passed a bill requiring insurance companies to pay for long term antibiotic treatment of Lyme disease. Mass. Lawmakers Override Veto On Long-Term Antibiotics For Lyme http://www.wbur.org/commonhealth/2016/08/01/mass-long-term-lyme-disease-antibiotics On May 23, 2016 researchers at Johns Hopkins published a study which identified Borrelia as an antibiotic resistant/tolerant superbug. The spirochete has the ability to develop a cyst wall when antibiotics are introduced rendering current recommended antimicrobials useless against this pathogen. It would now appear that Post Treatment Lyme Disease Syndrome is simply a fabricated medical condition disguising treatment failure. Lyme disease was conceptualized early on to fit a vaccine model and misclassified as a simple nuisance disease. We have legislation in two dozen states protecting physicians who treat Lyme disease with long term antibiotics and Lyme support groups in nearly every state with nineteen in Pennsylvania alone. Patients want a cure for this “chronic disease” which has been horribly mishandled for the past three decades and afflicts over 300,000 annually in the United States alone.. (Six times the AIDS epidemic and twice as prevalent as breast cancer) Per the following email thread, I have been communicating with the World Health Organization regarding antibiotic resistance. It would appear that the WHO doesn’t have Lyme disease on the radar and is missing one of the largest global health threats as we have a growing population of horribly disabled Lyme patients worldwide. (See nine Lyme patient comments below) Please take a moment to read my communication below. (and attachments) I would appreciate a response to this serious concern. Respectfully submitted, Carl Tuttle Hudson, NH USA Previous communication to the WHO was attached.