Following the list of Representatives below you will find my letter to legislators announcing that the Infectious Disease Society of America is accepting public comments regarding their one-size-fits-all Lyme disease treatment guideline. Once again there is no representation from physicians actively treating the late-stage Lyme epidemic as we see the same cast of characters colluding to deny a disease while controlling the narrative allowing the dogma to prevail. Quote from Dr Kenneth Liegner: “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.” Read more about the IDSA’s “Project Plan” from LymeDisease.org: Why we're alarmed by the new IDSA Lyme panel: http://lymedisease.org/news/lyme_disease_views/idsa-guidelines-revision-process-cause-for-alarm.html IDSA chooses token patient for Lyme panel: http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-the-idsa-chooses-a-token-patient-for-its-new-guidelines-revision-process.html IMPORTANT Please take a moment to call the representatives below who support Lyme disease legislation as these are the legislators who understand that late-stage Lyme is not just a nuisance disease. Respectfully explain that we need to halt the collusion to deny a disease; “Chronic Lyme disease” and include physicians who are actively treating the chronic Lyme epidemic in the IDSA’s treatment guideline revision process. We also need representation from the Lyme patient community. H.R.4701 - Tick-Borne Disease Research Accountability and Transparency Act of 2014 https://www.congress.gov/bill/113th-congress/house-bill/4701 Sponsor: Representative Christopher P. Gibson New York (202) 225-5614 19 Cosponsors: H.R.4701 https://www.congress.gov/bill/113th-congress/house-bill/4701/cosponsors Representative Joe Courtney Connecticut (202) 225-2076 Representative Collin C. Peterson Minnesota (202) 225-2165 Representative Christopher H. Smith New Jersey (202) 225-3765 (Former) Representative Frank R. Wolf Virginia N/A Representative Lou Barletta Pennsylvania (202) 225-6511 Representative Peter Welch Vermont (202) 225-4115 Representative Sean Patrick Maloney New York (202) 225-5441 Representative Bill Posey Florida (202) 225-3671 Representative Robert J. Wittman Virginia (202) 225-4261 Representative Janice D. Schakowsky Illinois (202) 225-2111 Representative Elizabeth H. Esty Connecticut (202) 225-4476 Representative Leonard Lance New Jersey (202) 225-5361 Representative John Shimkus Illinois (202) 225-5271 Representative Paul Tonko New York (202) 225-5076 (Former) Representative John Barrow Georgia N/A Representative William R. Keating Massachusetts(202) 225-3111 Representative Gerald E. Connolly Virginia (202) 225-1492 (Former) Representative Carol Shea-Porter New Hampshire N/A (Former) Representative Daniel B. Maffei New York N/A My letter to legislators announcing that the Infectious Disease Society of America is accepting public comments: ________________________________________ From: "Carl Tuttle" To: "Dick Blumenthal" Cc: "Kemp Hannon" , "matt sheehey" , bonacic@senate.state.ny.us Sent: Wednesday, March 18, 2015 2:58:30 PM Subject: Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan Dear Legislators, From March 9th to April 9th the Infectious Disease Society of America is accepting public comments regarding their one-size-fits-all Lyme disease treatment guideline: http://www.idsociety.org/templates/content.aspx?id=32212267305 Please take a moment to read the following comment left earlier this month. Carl Tuttle’s comment Mar 11, 2015: In reference to the entire “Project Plan” the following critical information must be taken into account. Misinterpretation of laboratory results is the main reason why the medical community is dismissive of patients with Lyme disease and their symptoms. Faulty diagnostic tests create confusion, causing physicians to miss the small period in which they can give successful short-term treatment. As a result, many patients progress to late-stage Lyme disease. Since we only test for antibodies against the infection and not the bacteria itself, we have no way to rule out active, continuing infection. China’s criteria for a positive Western blot diagnosis of Lyme disease were established with only one IgG band and one single IgM band. The CDC's five out of ten band IgG criteria is responsible for countless misdiagnosis. References: -A Study of the Technique of Western Blot for Diagnosis of Lyme Disease caused by Borrelia afzelii in China: http://www.ncbi.nlm.nih.gov/pubmed/23425802 -Per the U.S. Food and Drug Administration website there appears to be seven 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= -Complaint filed with the Massachusetts Medical Board: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/9024981 -Seronegativity in Lyme borreliosis: 103 Peer-Reviewed Studies http://www.lymeinfo.net/medical/LDSeronegativity.pdf -Congenital Transmission of Lyme: 28 Peer-Reviewed Studies http://home.comcast.net/~runagain/Congenital%20Transmission%20of%20Lyme.doc -Case report of persistent Lyme disease from Pulaski County, Virginia http://www.dovepress.com/getfile.php?fileID=18365 -Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html -Persistent Lyme infection: 273 Peer-Reviewed Studies: http://home.comcast.net/~runagain/Persistence%20of%20Lyme%20Disease.doc End of comment ________________________________________________________________ Please take a moment to review the IDSA’s “Project Plan” at the following link: http://www.idsociety.org/uploadedFiles/IDSA/Guidelines-Patient_Care/PDF_Library/LD%20Project%20Plan%20March%202015(2).pdf As you read through the list of panelists you will find no representation from the courageous physicians actively treating the late-stage Lyme epidemic your constituents are currently experiencing. To my knowledge none of the panelists, conflict of interest review group or author of the project plan is on the front lines treating the late-stage Lyme epidemic sweeping across the globe. Do you truly believe this happened by accident? We need to ask the question: “Why are these select few controlling the narrative?” This is reminiscent of the “Flat Earth Society” where opposing knowledge was not allowed while pseudoscience and a disinformation campaign were used as propaganda. Here is just one recent example of the deliberate disinformation campaign involving Lyme disease with an article published in Psychosomatics by Gerstenblith and Stern out of Massachusetts General Hospital, home of IDSA President Stephen B. Calderwood, MD and Allen C. Steere, Principle Investigator of SmithKlineBeecham's failed LymeRix vaccine. My communication with the executive director of Psychosomatics: (Two emails) 1st Email _______________________________________________________________ From: "Carl Tuttle" To: jvrac@apm.org Cc: TStern@Partners.org, gerstenblith@jhmi.edu Sent: Wednesday, February 25, 2015 7:53:56 PM Subject: Lyme disease: a review of its epidemiology, evaluation, and treatment. Psychosomatics. 2014 Sep-Oct; 55(5):421-9. doi: 10.1016/j.psym.2014.02.006. Epub 2014 Apr 19. Lyme disease: a review of its epidemiology, evaluation, and treatment. Gerstenblith TA, Stern TA. Consultation Psychiatry, Massachusetts General Hospital, Boston, MA; Harvard Medical School, Boston, MA; Avery D. Weisman Psychiatry Consultation Service, Massachusetts General Hospital, Boston, MA. Electronic address: TStern@Partners.org. http://www.ncbi.nlm.nih.gov/pubmed/25016354 Feb 25, 2015 PSYCHOSOMATICS The Journal of Consultation and Liaison Psychiatry James Vrac, Executive Director Editor-in-Chief: Theodore A. Stern, MD, FAPM, Dear Executive Director Vrac, I would like to call attention to the article published in Psychosomatics coauthored by Psychosomatics Editor-in-Chief: Theodore A. Stern, MD, FAPM. It is difficult to accept that this article was approved through a “peer-review process” as there appears to be a bias viewpoint of Lyme disease with a great deal of missing and or misleading information. For example, Misleading information: #1 “The transmission of the spirochete requires that the tick be attached to the new host for 24–48 hours.” Stricker et al describes three cases in which transmission of Borrelia burgdorferi, appears to have occurred in less than 24 hours.[1] Dr. Willy Burgdorfer (discoverer of the Borrelia burgdorferi spirochete) was quoted during a conference at Bard College in 1999 stating that about 5-10% of ticks that are carrying Lyme disease have a systemic infection and have the disease in their saliva and can transmit it as soon as they bite. He said, “There is no safety window.” #2 “….erythema migrans rash occurs in more than 80% of individuals with Lyme disease” The State of Maine Department of Health and Human Services has documented on average 48.25% incidence of rash-related Lyme over the last 4 years (See page 3 of each official report.) [2] [3] [4] [5] Dr. Gensheimer served as an Epidemic Intelligence Service Officer with the national Centers for Disease Control and Prevention prior to her assuming her current position in Maine. The 80% number is pure disinformation propagated by the CDC. #3 “Selecting which individuals are appropriate for serologic testing is important, as testing helps support or refute the clinical diagnosis, but it can neither establish nor exclude the diagnosis of Lyme disease.” “Current serologic testing assays are unable to distinguish between active and inactive infection.” So in summary there is no laboratory test to gauge treatment failure or success. The current two-tier FDA approved testing method insures that persistent infection will never be identified. Per the U.S. Food and Drug Administration website [6] there appears to be seven pages of patient complaints regarding faulty/misleading Lyme disease antibody testing and subsequent misdiagnosis. Lyme disease antibody tests landed a sixteen year old Massachusetts boy in a psychiatric ward.[7] The misdiagnosis resulted from faulty/misleading two tier serology as this boy’s Western blot did not meet the five out of ten band IgG criteria for positive results. The physician responsible for the misdiagnosis is regarded as an “expert” in Lyme disease. In addition, this case shows that the “one-size-fits-all” IDSA treatment guideline was a complete failure. Incidentally, China’s criteria for a positive Western blot diagnosis of Lyme disease were established with only one IgG band and one single IgM band.[8] #4 “Serologic testing is more reliable in later-stage disease.” “It is rare to have CSF antibodies without serologic ones, so the absence of serologic antibodies indicates that Lyme disease is not present.” Seronegativity in Lyme borreliosis; 103 Peer-Reviewed Studies [9] “If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.” #5 “…there is no evidence that B. burgdorferi infection persists in humans after a course of antibiotic therapy” Persistent Lyme infection; 273 Peer-Reviewed Studies [10] “In 1991 the Lyme disease organism, Borrelia burgdorferi, was grown from the cerebrospinal fluid of my patient Vicki Logan at the Centers for Disease Control in Fort Collins, Colorado despite prior treatment with intravenous antibiotics. Her case made the front page of the New York Times Science Times in August of 1993.” -Kenneth Liegner, MD [11] Vicki Logan’s CDC Fort Collins Positive CSF Culture Report [12] Vicki Logan/Poughkeepsie Journal article challenging CDC treatment guidelines [13] #6 “Multiple patient advocacy groups that have encouraged patients (many of whom had negative results on serologic testing) to think that they have chronic infections have flourished” Misinterpretation of laboratory results is the main reason why the medical community is dismissive of patients with Lyme disease and their symptoms. Faulty diagnostic tests create confusion, causing physicians to miss the small period in which they can give successful short-term treatment. As a result, many patients have late-stage Lyme disease. Since we only test for antibodies against the infection and not the bacteria itself, we have no way to rule out active, continuing infection. If the Infectious Diseases Society of America and the Centers for Disease Control and Prevention are correct with their single-treatment approach for all stages of Lyme disease and two-tier method of testing, why do we have so much legislation involving Lyme disease? [14] #7 “Some have even encouraged legislative efforts to subvert evidence-based recommendations and demand long-term antibiotic treatment owing to persistent infection.” Texas Senator Chris Harris says he was severely affected by the disease, but “got a lucky break.” His doctor, constrained by a disciplinary board that limited antibiotic use for tick-borne illness to 1 month or less, arranged for 17 physicians to take turns writing prescriptions for Sen. Harris’s treatment. "As a Lyme disease survivor,” says Sen Harris, “I know how important the correct treatment can be. This bill is a vital step forward in properly treating those who have this disease.” [15] Here are some additional studies to consider: (Missing from the Gerstenblith and Stern article) Congenital Transmission of Lyme: 28 Peer-Reviewed Studies [16] Case report of persistent Lyme disease from Pulaski County, Virginia [17] Chronic Borrelia burgdorferi infection: a case report [18] As the reader reviews the article by Gerstenblith and Stern one might begin to question if it was written as a playbook on how to avoid legal accountability for misdiagnosis and perhaps should have been titled “Willful Ignorance for Beginners” In the tragic case of the Lyme patient who committed suicide, prescribing steroids to a patient with infection further suppressing the immune system, certainly led to the demise of this patient. In conclusion: We have been dealing with an antibiotic resistant superbug cleverly concealed to promote vaccine development. A preventive vaccine for Lyme disease would not satisfy the FDA if a chronic persistent infection and seronegative disease exist.[19] Post-treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure. We need to ask the question, “Why are the peer-reviewed studies, case reports and information I provided missing from the Gerstenblith and Stern article and what was the incentive for promoting the existing dogma? Was there influence (bias) by a colleague at Mass General Hospital inappropriately influencing this article? Respectfully submitted, Carl Tuttle, Hudson, NH References ________________________________________ [1] Clinical evidence for rapid transmission of Lyme disease following a tickbite http://www.dmidjournal.com/article/S0732-8893(11)00415-9/abstract [2] Report to Maine Legislature Lyme Disease February 2009 http://www.maine.gov/dhhs/reports/lymereport.pdf -- 2009, 59% [3] Report to Maine Legislature Lyme Disease February 2010 http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/lyme-legislature-2010.pdf -- 2010, 43% [4] Report to Maine Legislature Lyme Disease February 2011 http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2011-lyme-legislature.pdf -- 2011, 42% [5] Report to Maine Legislature Lyme Disease February 2012 http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2012-lyme-legislature.pdf -- 2012, 49% [6] 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= [7] Complaint filed with the Massachusetts Medical Board https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/9024981 [8] A Study of the Technique of Western Blot for Diagnosis of Lyme Disease caused by Borrelia afzelii in China http://www.ncbi.nlm.nih.gov/pubmed/23425802 [9] Seronegativity in Lyme borreliosis: 103 Peer-Reviewed Studies http://www.lymeinfo.net/medical/LDSeronegativity.pdf [10] Persistent Lyme infection: 273 Peer-Reviewed Studies http://home.comcast.net/~runagain/Persistence%20of%20Lyme%20Disease.doc [11] Persistent Lyme Infection 1991 http://cognitiveliberty.net/wp-content/uploads/2014/12/David-Dennis.pdf [12] Vicki Logan’s CDC Fort Collins Positive CSF Culture Report http://home.comcast.net/~runagain/Logan%20CDC%20Fort%20Collins%20Positive%20CSF%20Culture%20Report.jpg [13] Vicki Logan Poughkeepsie Journal article challenging CDC treatment guidelines http://www.poughkeepsiejournal.com/article/20130505/NEWS01/305050094/VIDEO-Rallies-raise-awareness-Lyme-disease-challenge-CDC-treatment-guidelines [14] Letter to the Editor, The Lancet Infectious Diseases Published May 2012 http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70054-3/fulltext [15] Texas legislature passes Lyme bill recognizing long-term antibiotic treatment as option for persistent disease http://www.prohealth.com/library/showarticle.cfm?libid=16308 [16] Congenital Transmission of Lyme: 28 Peer-Reviewed Studies http://home.comcast.net/~runagain/Congenital%20Transmission%20of%20Lyme.doc [17] Case report of persistent Lyme disease from Pulaski County, Virginia http://www.dovepress.com/getfile.php?fileID=18365 [18] Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html [19] Petition: 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 Cc: to Elsevier's senior management team Ron Mobed, Chief Executive Officer Adriaan Roosen, Executive Vice President, Operations Mark Seeley, Senior Vice President and General Counsel Youngsuk “YS” Chi, Chairman Legislators: Sen. Richard Blumenthal Sen. Terry Gipson Sen. Kemp Hannon Sen. John Bonacic 2nd Email ________________________________________________________________ From: "Carl Tuttle" To: "James Vrac" Cc: TStern@partners.org, "r mobed" , "y chi" , Roosen@elsevier.com, "m seeley" , "m balisciano" , gerstenblith@jhmi.edu Sent: Friday, February 27, 2015 9:01:35 AM Subject: Re: Lyme disease: a review of its epidemiology, evaluation, and treatment. Dear Executive Director Vrac, Thank you for your timely response to my letter. I look forward to Dr Stern’s reply. I simply wanted to point out that Elsevier’s journals are being used to misinform the medical and scientific community. If Gerstenblith and Stern were recruited for that purpose it is highly possible they had no idea. An article in The Lancet Infectious Diseases was published with similar intent: Antiscience and ethical concerns associated with advocacy of Lyme disease http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/abstract My Letter to the Editor, The Lancet Infectious Diseases published May 2012: http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70054-3/fulltext Sincerely, Carl Tuttle Cc: to Elsevier's senior management team Ron Mobed, Chief Executive Officer Adriaan Roosen, Executive Vice President, Operations Mark Seeley, Senior Vice President and General Counsel Youngsuk “YS” Chi, Chairman -End of communication with the executive director-