Letter written to Dr. Martin Schriefer of the CDC with Cc: to the editors of his article and legislators on three continents….. ________________________________________ From: "Carl Tuttle" To: mms7@CDC.GOV Cc: "Theel Elitza" , asiegel@partners.org, klewandrowski@partners.org, "alexander mcadam" , "ellinor peerschke" , mrpincus2003@yahoo.com, wellsa@upmc.edu, "Countess MAR" , "matt sheehey" , "neva varsalone" , "Dick Blumenthal" , hannon@nysenate.gov, bonacic@senate.state.ny.us, "Serino" , "Daniel Auger" , "Shaylyn Kelly" , "Bud Fitch" , "senator mckenzie" Sent: Sunday, November 29, 2015 12:31:43 AM Subject: Lyme Disease Diagnosis: Serology Clinics in Laboratory Medicine Volume 35, Issue 4, Pages 723-900 (December 2015) Lyme Disease Diagnosis: Serology. Schriefer ME http://www.sciencedirect.com/science/article/pii/S0272271215001006 Excerpt: “The best indicator of stage 1 infection, erythema migrans, is presented in the majority of US cases….” Nov 28, 2015 Centers for Disease Control and Prevention 3156 Rampart Road Fort Collins, CO 80521 Attn: Dr. Martin Schriefer - Chief, Diagnostic and Reference Laboratory, Division of Vector-Borne Diseases, CDC To: Dr. Martin Schriefer, In reference to the quote highlighted above from your published “Serology” article, I would like to point out that the State of Maine is recording the bull’s-eye rash in less than 50% of patients with Lyme disease [1] and rapid transmission of Lyme has been reported. [2] [3] The CDC continues to promote the disinformation that a bull’s-eye rash develops in the “majority” of Lyme disease infections. The 2001 study below found that bites from nymphal ticks were significantly more likely than bites from adult ticks to be associated with erythema migrans. The data shows that none of the 97 people bitten by adult stage ticks developed the bulls-eye rash. Since the bulls-eye is the only clinical sign that was used, people bitten by adult ticks were not followed up for other signs or symptoms. It has been postulated that the bite of a nymph may cause the erythema migrans rash because their mouth parts cannot penetrate the skin adequately. Prophylaxis with Single-Dose Doxycycline for the Prevention of Lyme Disease after an Ixodes scapularis Tick Bite http://www.nejm.org/doi/full/10.1056/NEJM200107123450201 N Engl J Med 2001; 345:79-84 July 12, 2001 DOI: 10.1056/NEJM200107123450201 Since 1988 we have known that early treatment with antibiotics will stop the patient from developing a robust antibody response to Borrelia infection. Dr David Volkman was coauthor to the 1988 study below and has since written a letter to the Editor of the NEJM referencing his study. Quote from Dr David Volkman: (Letter to the editor) “Abrogation of a humoral response by removal of the bulk of microbial antigens has been seen in other settings, including infection with Treponema pallidum. Although the use of repeated courses of antibiotics for a putative borrelia infection is unsupported and may cause serious morbidity, persons with evidence of previously inadequately treated Lyme disease may be seronegative and may benefit from adequate antibiotic therapy” N Engl J Med. 1988 Dec 1;319(22):1441-6. Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi. Dattwyler RJ, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG. The vast majority of patients attending support group meetings here in New Hampshire never saw a bulls-eye rash and many don’t recall a tick bite. Please see the attached Word document identifying sixty five studies referencing seronegative Lyme disease. Lyme disease can become a life altering infection when not treated immediately but has been misclassified as a simple nuisance disease. [4] Unreliable/misleading serology along with a medical community misguided by the CDC/IDSA disinformation campaign [5] is the root cause of many disabilities. Per the U.S. Food and Drug Administration website there appears to be eleven pages of patient complaints regarding faulty/misleading Lyme disease antibody testing and subsequent misdiagnosis: MAUDE - Manufacturer and User Facility Device Experience http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/TextResults.cfm?dls=1&q=lyme&pf=&pn=10&sc= A recent study reported a case of a Lyme disease patient, a teenager, who was misdiagnosed by an “expert” as suffering from “pure psychiatric illnesses” and hospitalized in a psychiatric hospital, based on interpretation of questionable antibody test results. [6] Testimonies from disabled Lyme patients have singled out the restrictive case definition as responsible for their misdiagnoses. His IgG Western blot was positive with four bands which did not meet the five out of ten band criteria for positive Western blot. The correct diagnosis was finally established by finding Borrelia burgdorferi in the patient’s blood with 16S rDNA sequencing, as reported in the following peer-reviewed article: DNA Sequencing Diagnosis of Off-Season Spirochetemia with Low Bacterial Density in Borrelia burgdorferi and Borrelia miyamotoi Infections http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4139787/ To the legislators carbon copied on this email: Serology is inherently flawed and cannot be used to gauge treatment failure or success (which is ideal for concealing a persistent infection) yet the CDC continues to support these tests to maintain the status quo of a dysfunctional system. There is a mountain of evidence [7] indicating that we have been dealing with an antibiotic resistant/tolerant superbug [8] deceitfully concealed by the CDC/IDSA and ALDF. 31,214 individuals from twenty one countries have signed the Change.org petition calling for a congressional investigation into the mishandling of Lyme disease. [9] The continual mishandling of Lyme disease has never been more obvious. Sincerely, Carl Tuttle Hudson, NH REFERENCES ________________________________________ [1] Report to Maine Legislature Lyme Disease http://www.maine.gov/dhhs/reports/lymereport.pdf -- 2009, 59% http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/lyme-legislature-2010.pdf -- 2010, 43% http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2011-lyme-legislature.pdf -- 2011, 42% http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2012-lyme-legislature.pdf -- 2012, 49% [2] Clinical evidence for rapid transmission of Lyme disease following a tick bite http://www.dmidjournal.com/article/S0732-8893(11)00415-9/abstract [3] Lyme borreliosis: a review of data on transmission time after tick attachment http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278789/ [4] Letter to: Editor-in-Chief, Sherwood L. Gorbach, M.D; Clinical Infectious Diseases https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/13301800 [5] Lyme Patient Advocates Document Misinformation Campaign by IDSA Guidelines Panelists http://www.reuters.com/article/2015/10/07/patient-centered-care-idUSnPnq0BkH+45+PRN20151007#MuE7iL0KugrsARIZ.97 [6] Complaint filed with the Massachusetts Medical Board http://www.mdjunction.com/forums/lyme-disease-support-forums/lyme-disease-activism/11288980-nhs-carl-tuttle-petition-investigating-cdc-idsa-ongoing [7] Peer Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf [8] 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/ [9] Calling for a Congressional investigation of the CDC, IDSA and ALDF https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf