LYMEPOLICYWONK: Patient Viewpoints Survey Update. 2,000 Responses! We Are On Our Way.
The Lyme disease Patient Preferences Survey initially posted on October 5 has drawn over 2,000 responses to date! We want to thank everyone who responded and encourage you to distribute the survey to others you know who have Lyme disease. We received many comments on the survey as well with suggestions for future surveys. The two competing guidelines for diagnosing and treating Lyme disease (those of the International Lyme Disease Association and those of the Infectious Diseases Society of America) are both over 5 years old. Because of this, we assume they are in the process of revision. We have contacted the IDSA and asked about their timetable for guideline revision and requested that patient viewpoints be included in any development process. We will keep you posted.
To participate in this survey, click here.
Your responses will be treated with confidence and at all times data will presented in such a way that your identity cannot be connected with specific published data. This survey should take 5-8 minutes. Note that once you start the survey, you will need to fully complete it. (You can not save it and return to it later.)
In 2009 prior to the IDSA hearing, we wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States. The results of that survey were published in Health Policy in a study by Johnson, Aylward and Stricker and summarized in another blog post of mine. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues.
- October 8, 2011 at 12:10 pm
Entire family has Lyme (5)
- October 9, 2011 at 5:45 pm
TO know LYME and Assoc. Disease – is to know medicine, syphilis, neurology, cardiology, gastroenterology, immunology, endocrinology, psychiatry, autism, ecology, law, politics – and MOST IMPORTANTLY ETHICS!!! – in prevention of disability, incapacitating exhaustion, congestive heart failure, crippling headaches, neuro-musculoskeletal pain and suffering, psychosis, seizures, even death!!!
- October 10, 2011 at 9:34 am
A lifetime of horror! This disease and the coinfections that go with it are devastating. It is a multisystem disease affecting us daily (2 household members) with neurological,gastrointestinal, muscular/skeletal, sensory motor difficulties. The financial costs are phenomenal, affecting the whole family (well over $150,000.) Only have relief through Lyme Literate MD's who treat long term with varied approaches, frequent visits and evaluations. Give patients their rightful choice to medications/long term treatment!
- October 15, 2011 at 6:35 pm
In divorce, infected mother/RN w/ (2)minor daughters, brainwashed MBP, Delusional-Somatic after reporting the very lst cases of neurological (CDC)-confirmed Lyme, Erhlichiosis, Bartonella, Babesia, Mycoplasma – w/ sudden taking of: life, liberty and property, including termination of legal/physical custody while under care of out of state (ILADS) Specialists under rights of (ADA).
- October 21, 2011 at 10:17 am
Everyone that I know that has had Lyme disease more than once has never been offered or advised to be retested 6 wks after their course of antibiotics with neg. antigen test to ensure it has been removed from their system. Treat lyme healthcare!
- October 21, 2011 at 8:25 pm
Lyme and approx (10) other tick borne diseases are known to cause multi- systemic infection to major organs: the brain, eyes, heart, lungs, liver, kidneys, and other.
Chronic Group A beta strep w/ heart/brain systemic infection (IDSA) treats w/ long-term penicillin, 6 months up to 10 years.
Lyme-Borrelia, similar to Syphilis, the most pathological bacteria known to man, further complicated by assoc TBD's only require 28 days of one antibiotic. When one suffers known complications of tertiary Lyme and other TBD's (w/ brain, heart and multi-systemic bacterial infection, w/ severe pain and suffering, barely able to walk, talk, eat or sleep) – you are pscyhosomatic "Delusional-Somatoform" w/ taking of: life, liberty, property and privacy, in need of long-term psychotrophics/institutionalization so they can change your diapers at federal and taxpayers' expense.
- October 21, 2011 at 9:43 pm
this site is good , but could be a lot better , i'm 53 living with the long term effects of rocky mountain spotted fever,
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