Please see the communication below sent to Dr. Aucott/TBD Working Group. Dr. Aucott is the appointed Chair of this Working Group and just published a study on Post Treatment Lyme Disease Syndrome which we all believe to be a fabricated medical condition disguising treatment failure in some patients, and the severity of Lyme disease in general. To my knowledge there was no attempt to rule out persistent infection in this study group or identify immune suppression. Anyone wishing to contact the Lyme Disease Working Group can send an email to: tickbornedisease@hhs.gov First email to Dr. Aucott: ---------- Original Message ---------- From: Carl Tuttle To: "Tick-Borne Disease Working Group (OS/OASH)" , jaucott2@jhmi.edu Cc: Date: January 10, 2018 at 8:59 AM Subject: The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Rebman AW1, Bechtold KT2, Yang T1, Mihm EA1, Soloski MJ1, Novak CB1, Aucott JN1. https://www.frontiersin.org/articles/10.3389/fmed.2017.00224/full Conclusion: Although physical exam and clinical laboratory tests showed few objective abnormalities, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls. Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care. Jan 10, 2018 Johns Hopkins Lyme Disease Clinical Research Center At Greenspring Station Joppa Concourse 2360 W. Joppa Rd, Suite 320 Lutherville, MD 21093 Attn: John Aucott, M.D. Director of the Johns Hopkins Lyme Disease Clinical Research Center Dear Dr. Aucott, We need to understand why Lyme disease ruins people’s lives and not just identify/track PTLDS so as to treat symptoms. Why are Lyme patients wheelchair bound or bedridden from the disease? (These are not the aches and pains of daily living) The vast majority of Lyme patients disabled from Lyme disease went months, years or decades before diagnosis and initial treatment. Patients with a prolonged exposure to infection before treatment are almost always incapacitated. The strong correlation with delayed diagnosis suggests that (silent) persistent infection is an important factor in treatment resistant disease/symptoms. In addition, recent studies point out the pathogen’s ability to shut down the immune system. (B cell AIDS??) “Spirochetes disseminate to the lymph nodes, bone marrow, spleen and brain within a week of infection [1]. Lymph node germinal centers, where B cells are supposed to mature and be assigned an immune system function, are rendered incompetent [2]” 1. http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1002066] 2. http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976 We need to use direct testing as done on autopsy (DNA sequencing on blood and tissue biopsy) in order to find out what is objectively wrong with these patients. The autopsy report enclosed in the attached document clearly identifies a pathogen capable of disability and death. Autopsy report: https://www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0 I understand that you had an interest in DNA testing of tissue samples “which you think may most likely harbor Lyme borreliae and are now being stored at -80C at Johns Hopkins.” How is that going? (Please provide the TBD Working Group with a status update on this) Take Lyme off the low-risk and non-urgent health list and elevate this serious health threat to highest alert level. The misclassification of Lyme as a simple nuisance disease by those identified in the racketeering lawsuit has had a huge impact on public health and clinical treatment while creating a public health crisis/disaster. Recent comment left on the Change.org petition: (This is NOT an isolated case) https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/22217313 Today, my daughter turned 14. Today is the 3rd birthday in a row, she is too sick to have a party. Her 11th birthday, she told me an hr before to please cancel, she was too sick to participate. I didn't bc I was stuck. Her 10th birthday, she was also sick and took a slumber party, to a 2 hr party. The year before that she was 9. It was the last time I can recall my daughter having a good time at own her own birthday. Childhoods are being robbed. Amy Theusch St. Louis, MO Sincerely, Carl Tuttle Hudson, NH Second email to Dr. Aucott: --------- Original Message ---------- From: Carl Tuttle To: jaucott2@jhmi.edu, "Tick-Borne Disease Working Group (OS/OASH)" Cc: Date: January 11, 2018 at 9:12 AM Subject: Re: The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. FYI…. Molecular diagnostics was used in verifying the borrelia infection in the organs of the three patients who dropped dead from Lyme carditis as reported by the CDC in 2013. Why is molecular diagnostics only used post mortem!!!!! Three Sudden Cardiac Deaths Associated with Lyme Carditis — United States, December 13, 2013 / 62(49);993-996 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm Excerpts: -Histopathologic evaluation of postmortem tissues at CDC also was suggestive of Lyme pancarditis (Figure 1) and abundant spirochetes were observed by Warthin-Starry silver stain (Figure 2). Spirochetes also were detected in the myocardium by immunohistochemistry (IHC). Polymerase chain reaction (PCR) assays detected B. burgdorferi in extracts of formalin-fixed, paraffin-embedded heart tissue based on outer surface protein A, flagellin, and plasminogen-binding protein gene targets. No donor tissues were transplanted. -Rare spirochetes were identified in cardiac tissue by Warthin-Starry silver stain and IHC; heart tissues tested positive for B. burgdorferi by PCR. Patient 3. In July 2013, a Connecticut resident collapsed while visiting New Hampshire and was pronounced dead at a local hospital. -Warthin-Starry stain revealed spirochetes in the myocardium, and IHC and PCR assays confirmed the spirochete as B. burgdorferi. WCS and C6 EIAs were positive, IgM Western blot was positive for all three scored bands, and IgG Western blot demonstrated reactivity to one scored band (41 kDa). ______________________________ My note: Only one single IgG Western blot band!!! This patient was dead before the two-tier testing algorithm was fully positive! -Carl Tuttle