Email message thread to the Working Group on the Precision Medicine Initiative referencing the latest propaganda article: "Unorthodox Alternative Therapies Marketed to Treat Lyme Disease" -Carl Tuttle ________________________________________________________________ From: "Carl Tuttle" To: "NIH Precision Medicine" Cc: "Francis Collins" , etopol@medscape.net, "richard lifton" , "kathy hudson" , "Dick Blumenthal" , "Kemp Hannon" , "matt sheehey" , bonacic@senate.state.ny.us Sent: Friday, April 10, 2015 10:34:13 AM Subject: Re: PLoS One: Drug Combinations against Borrelia burgdorferi Persisters Gwynne L. Jenkins, PhD, MPH Executive Secretariat NIH ACD Working Group on the Precision Medicine Initiative Dear Gwynne L. Jenkins, I would like to call attention to the following article published in Clinical Infectious Diseases: Unorthodox Alternative Therapies Marketed to Treat Lyme Disease. Lantos PM, Shapiro ED, Auwaerter PG, Baker PJ, Halperin JJ, McSweegan E, Wormser GP. Clinical Infectious Diseases, online first, 2015 Apr 6. pii: civ186. http://doi.org/10.1093/cid/civ186 The authors of this article are the who’s who among persistent infection denialists. Edward McSweegan [1] [2] [3], former NIH Lyme Program Officer was fired from his position at the NIH for harassing Lyme patients and has also criticized the CDC for investigating Morgellons disease which we now know has connections to the Lyme spirochete. Philip J. Baker [4] [5] [6], former NIH Lyme Program Officer for the NIH was overseeing Lyme disease research grants with an overwhelming proportion of these awarded to a few favored members of the Infectious Diseases Society of America (IDSA) who authored the controversial 2006 IDSA Lyme disease guidelines. Eugene D. Shapiro, MD is often heard spreading disinformation as an archived list of his quotes with inaccuracies can be found here: “Memorable and Not So Memorable Quotes by Lyme Disease Denialists” In the New England Journal of Medicice article, “Lyme Disease” Shapiro is quoted, “no documented cases of congenital Lyme” http://lyme.kaiserpapers.org/memorable-quotes-by-lyme-disease-denialists.html#Shapiro http://www.nejm.org/doi/full/10.1056/NEJMcp1314325 Congenital Transmission of Lyme: 28 Peer-Reviewed Studies http://home.comcast.net/~runagain/Congenital%20Transmission%20of%20Lyme.doc John J Halperin, MD, Excerpt from the article: “Study: 9 in 10 ALS patients infected with Lyme bacteria” http://www.als-cure.com/als-lyme/als-patients-infected-with-lyme-bacteria-borrelia-spirochetes/ “There have been several studies that found a strong link between Lyme disease and Amyotrophic Lateral Sclerosis. The Halperin paper is one. The Halperin paper found Lyme infection in nearly all ALS patients in their study group, but Halperin, a long-time “debunker” of chronic Lyme disease dismissed this as a “coincidence” and the paper’s authors even fudged the numbers in their summary to make the Lyme infection rate seem “only” 47%.” Gary P Wormser, MD is the lead author of the Infectious Diseases Society of America (IDSA) Lyme disease treatment guidelines; a “one-size-fits-all” treatment guideline for a nuisance disease that is easily diagnosed and cured with a standard course of antibiotics. Wormser was Principle Investigator of Connaught's vaccine (which never made it to market) and consultant to Baxter’s current Lyme vaccine. We have to ask the question, “Why are we producing vaccines for a nuisance disease?” Have we conceptualized a disease that would enable vaccine development? A chronic relapsing disease does not fit the vaccine model. Paul G Auwaerter, MD Auwaerter will launch an attack on patients with persistent symptoms and the courageous clinicians who treat those patients outside the IDSA guidelines in a Lancet article: "Lyme Disease Antiscience" but then add his name to a study using antibiotics to treat "Borrelia burgdorferi Persisters." http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/abstract http://www.ncbi.nlm.nih.gov/pubmed/25806811 The authors in this article are against the use of long term antibiotics for persistent Lyme infection and now “Alternative Therapies Marketed to Treat Lyme Disease.” The reader might consider this a continuation of a Tuskegee-like syphilis experiment where no treatment is offered and late-stage Lyme patients remain debilitated. Paul Lantos by the way is one of the guideline authors of the IDSA’s “Project Plan” accepting public comments regarding their one-size-fits-all Lyme disease treatment guideline. You can be sure his article; "Unorthodox Alternative Therapies Marketed to Treat Lyme Disease" will be referenced somehow in the upcoming treatment guideline revision. http://www.idsociety.org/templates/content.aspx?id=32212267305 This letter was not meant to be disrespectful to anyone reading the letter or to individuals identified in the letter. It is time to recognize that a congressional investigation into the mishandling of Lyme disease is long overdue. Respectfully submitted, Carl Tuttle Hudson, NH Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF (27,445 signatures and growing) References ________________________________________ [1] Edward McSweegan Ph.D., is an American microbiologist, science writer and fiction author. http://en.wikipedia.org/wiki/Edward_McSweegan [2] Poughkeepsiejournal.com Ties that bind? http://archive.poughkeepsiejournal.com/Interactive/lyme_ties/mcsweegan.pdf [3] Lyme Disease Community Blows the Whistle on Corruption Within the CDC http://www.prohealth.com/library/showarticle.cfm?libid=18502 [4] Poughkeepsiejournal.com Ties that bind? http://archive.poughkeepsiejournal.com/Interactive/lyme_ties/ [5] LYMEPOLICYWONK: Bogus Grassroots Groups – Who’s Who and What’s What with the American Lyme Disease Foundation (ALDF) http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-bogus-grassroots-groups-%E2%80%93-who%E2%80%99s-who-and-what%E2%80%99s-what-with-the-american-lyme-disease-foundation-aldf.html [6] LYMEPOLICYWONK: A Baker’s Dozen?—Or Is it Six of One a Half Dozen of another? http://lymedisease.org/news/lymepolicywonk/612.html ________________________________________________________ From: "Carl Tuttle" To: "NIH Precision Medicine" Cc: "Francis Collins" , etopol@medscape.net, "richard lifton" , "kathy hudson" , "Dick Blumenthal" , hannon@nysenate.gov, "matt sheehey" , bonacic@senate.state.ny.us Sent: Thursday, April 9, 2015 10:01:57 AM Subject: Re: PLoS One: Drug Combinations against Borrelia burgdorferi Persisters Gwynne L. Jenkins, PhD, MPH Executive Secretariat NIH ACD Working Group on the Precision Medicine Initiative Dear Gwynne L. Jenkins, Thank you for taking the time to respond to my emails. I would like to say that I am cautiously optimistic about the “Precision Medicine Initiative” but given the past track record of our public health agencies and the influence of the Bayh–Dole Act of 1980 [1] any advancement in the diagnosis and treatment of late-stage Lyme disease will most likely come from outside the United States. Did you know that Leprosy (Now known as Hanson’s disease[2]) is curable with long term antibiotics? In some cases it may take two years to clear the infection. The NIH funded antibiotic clinical trials for Lyme disease lasted three months.[3] On a personal note, it took me two years to clear a chronic prostatits in my early twenties and when symptoms returned no one questioned the need to prescribe additional antibiotics or a different combination. We learned recently that Morgellon’s disease[4] is associated with Borrelia spirochetes that cause Lyme disease[5] not the “psychiatric condition” or “delusional infestation” promoted by the CDC. There is far too much evidence to overlook that Lyme has been deliberately mishandled and the dogma is deep seated within the medical and scientific community with studies generally funded by the NIH. Sincerely, Carl Tuttle Hudson, NH Website: New Hampshire Lyme Misdiagnosis Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF (27,400 signatures and growing) References: ________________________________________ [1] Bayh–Dole Act of 1980 http://en.wikipedia.org/wiki/Bayh%E2%80%93Dole_Act [2] CDC: Hansen's Disease (Leprosy) http://www.cdc.gov/leprosy/treatment/index.html [3] National Institute of Allergy and Infectious Diseases "Chronic Lyme Disease" http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx# [4] CDC Study of an Unexplained Dermopathy http://www.cdc.gov/unexplaineddermopathy/ [5] Exploring the Association Between Morgellons Disease and Lyme Disease http://www.medscape.com/viewarticle/841141 _______________________________________________________ From: "NIH Precision Medicine" To: runagain@comcast.net Sent: Wednesday, April 8, 2015 4:33:42 PM Subject: RE: PLoS One: Drug Combinations against Borrelia burgdorferi Persisters Dear Mr. Tuttle: Thank you for your interest and enthusiasm in the Precision Medicine Initiative (PMI) and for providing information about Lyme disease. Dr. Collins passed your email along to me. The design of the Initiative is still in the early stages, and we are currently planning several workshops in the coming months to seek input from individuals and organizations that have the expertise and experience in precision medicine and building a large research cohort. We fully agree that all areas of research, including that which focuses on diseases like Lyme, should be considered. More information about the Initiative is available on the NIH website: http://www.nih.gov/precisionmedicine/, which is frequently updated with information on upcoming PMI events and opportunities. Thanks again for reaching out. Please stay tuned for updates! Best, Gwynne L. Jenkins, PhD, MPH Executive Secretariat NIH ACD Working Group on the Precision Medicine Initiative