Please consider taking the following Lyme Survey: https://newpaltz.co1.qualtrics.com/jfe/form/SV_9uWbIKmtwpl6mqN The study was approved by the Human Research Ethics Board of the State University of New York at New Paltz. July 21, 2015 Maryalice Citera, Ph.D. citeram@newpaltz.edu Associate Professor, Department of Psychology State University of New York at New Paltz Dear Prof. Citera, In August of 2011 I scheduled a meeting with the New Hampshire Department of Health which included Lyme treating physicians. Per the attached meeting agenda the focus was on faulty/misleading antibody tests. At the conclusion of the meeting I asked members of our health department, “Why don’t you get involved with the Lyme community and survey the patients to uncover areas of concern and report back to the CDC with, “Houston we have a problem!” I got the deer in the headlights response. Over the years I continued to point out that the DOH was not involved in the patient community and just recently they sent out a Lyme questionnaire to 3,000 physicians and received a pitiful 5% response. Your survey for Lyme patients will point out the serious problems with diagnosis and treatment of Lyme disease. We might as well be in the Stone Age as our medical community practices willful ignorance while the patient voice is deliberately ignored. Below is my recent communication with the New Hampshire Department of Health: Sent: Monday, June 8, 2015 11:33:28 AM Subject: CSTE Annual Conference in Boston New Hampshire Department of Health and Human Services Concord, NH Attn: Elizabeth R. Daly Dear Beth, I was forwarded your abstract below which will be presented as a poster presentation at this year’s CSTE Annual Conference in Boston. I would like to point out that 95% of New Hampshire providers refused to respond to your Lyme disease survey so it is impossible to draw any accurate conclusion with only a 5% reply. I would also like to point out that I have been asking the New Hampshire Department of Health for a number of years now to survey the Lyme patient population to obtain an accurate assessment of the rampant misdiagnosis as we have a growing population of disabled Lyme patients due to ongoing confusion with interpretation of current serology for Lyme disease. If you’re not aware of the issues how can you attempt to address the problems? Your one-sided survey (clinicians only) keeps a broken system intact. I certainly hope that wasn’t your intent. I was recently made aware of a Lyme disease misdiagnosis that left a patient wheelchair bound with seizures causing the loss of employment and medical insurance. In this case it was faulty diagnostic test results that led to the disability. This case is not unusual but the NH DOH would prefer to turn a blind eye than to get involved and learn from this tragedy to insure it is not repeated. Sincerely, Carl Tuttle Hudson, NH 03051 Website: New Hampshire Lyme Misdiagnosis Letter to New Hampshire Governor John Lynch summarizing the Dept of Health Lyme Discussion with agenda link: http://home.comcast.net/~runagain/Governor%20Lynch%20Aug%2022%20Letter.doc Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF (29,000 signatures and growing) NH DOH poster presentation at this year’s CSTE Annual Conference: _____________________________________________ https://cste.confex.com/cste/2015/webprogram/Paper4704.html Lyme Disease Diagnosis, Treatment, and Reporting Practices Among Healthcare Providers in New Hampshire, 2014 CSTE Conference, Boston Monday, June 15, 2015: 10:00 AM-10:30 AM Exhibit Hall A, Hynes Convention Center Elizabeth R. Daly , New Hampshire Department of Health and Human Services, Concord, NH Ramya Vedula , Geisel School of Medicine at Dartmouth, Hanover, NH Abigail Mathewson , New Hampshire Department of Health and Human Services, Concord, NH BACKGROUND: Lyme disease (LD) is a common tick-borne disease in New Hampshire (NH). Incidence has increased significantly in the last 5-10 years, with NH recording the highest in the nation in 2012. Expert panels have published widely-accepted LD diagnosis and treatment guidelines for healthcare providers; some groups have published alternate guidelines, the extent to which they are referenced by NH providers is unknown. In 2014, the NH Department of Health and Human Services (DHHS) administered a survey to characterize knowledge, attitudes, and practices for LD among NH healthcare providers. METHODS: A web-based survey was distributed via email to all 3,041 physicians, physician assistants, and nurse practitioners in NH’s health alert network communication system. The survey contained 47 questions on diagnosis, treatment, reporting, information sources, and patient education practices for LD. Data were analyzed and compared, where possible, to a similar survey of 296 NH physicians conducted in 1999. RESULTS: A total of 136 (5%) providers responded to the survey, including 89 physicians, 27 physician assistants, and 20 nurse practitioners. The majority of providers (84%) had diagnosed a patient with LD in the last year, compared to 37% in the 1999 survey (p<0.001). Most providers referred to IDSA guidelines (80%) with a small minority (4%) referring to alternative guidelines published by ILADS. To assist with the diagnosis of LD, 88% of providers reported using the recommended two-tier testing strategy, 21% reported tick testing, and 7% reported using a non-FDA approved western blot test. Sixteen percent of providers reported ever treating a patient for LD in response to a patient’s concern, even when the provider did not think the patient had LD, compared to 45% in the 1999 survey (p<0.001). Few providers (25%) reported proactively reporting LD to DHHS and instead waited for DHHS to request information following a positive laboratory test result. More than half (62%) of providers were interested in continuing education opportunities if provided by DHHS. Less than one third of providers (29%) routinely provide LD prevention information to patients. CONCLUSIONS: Healthcare providers in NH have significant experience assessing and treating patients for LD. [WRONG!!] While limited by a poor response rate, the survey did identify important provider knowledge and practice gaps that DHHS will use to increase public and provider education through promotion of evidence-based clinical guidelines and control measures, dissemination of a state LD Prevention Plan, and targeted distribution of educational materials and training programs. Sincerely, Carl Tuttle