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KNOWLEDGE IS POWER
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Medical Gaslighting and Lyme Disease Survey
This survey is being conducted in collaboration with Lamar University and the Texas Lyme Alliance. The purpose of this survey is to assess experiences of people with Lyme disease navigating the health care system. Your assistance with completing this survey will help the academy and Lyme advocates learn more about the needs of the Lyme community. This is not a test and there are no right or wrong answers. Take your time and please be sure to answer each question based on what you really think. Nothing in this survey should be misconstrued as medical advice.
No medical tests/labs, practitioners, treatments, practitioners, or clinics are recommended. Responses are anonymous and all information obtained from this study will remain confidential. No one from your home, your school, or the community will see your responses. Any information collected from this study is for research purposes only. Your participation in this study does not involve any physical or emotional risks. You are free to stop being in the study at any time. Choosing not to be in this study or to stop being in this study will not result in any penalty to you.
This ANONYMOUS survey asks about your experiences navigating the health care system prior to your (and/or your child's) Lyme diagnosis. Your assistance of completing this survey will help the academy and Lyme advocates learn more about the needs of the Lyme community. It should take approximately 15 minutes to complete. We appreciate your time if you choose to participate!
Lyme Treatment Survey
Help us learn about what treatments are working for different patients.
Texas Lyme Alliance’s goal with this survey is to help fill in research gaps for treatments for Lyme patients. We connected 3 major medical universities to collaborate on this survey to assist patients to optimize treatments.
A study approved by the University of Texas at Dallas Institutional Reviewed Board is being conducted by Dr. Sarah Maxwell of the University of Texas at Dallas in collaboration with, and under the expertise of, Dr. Jayakumar Rajadas at Stanford University. The goal of the study is to gather information regarding the effects of various evolving treatments being developed for Lyme disease. This is a patient-reported study that specifically aims to obtain information regarding the use of disulfiram and any concomitant medications being prescribed to treat Lyme disease and coinfections. Data on medication dosing, symptom resolution and adverse drug effects are being studied. The study involves questions about your health and asks about your treatment. All personal patient information will remain strictly confidential. Please note that this is a research survey, and is not being conducted for medical or diagnostic purpose and is strictly confidential.
You can participate in the study on a monthly basis by taking a quick 5-minute survey that asks questions about symptoms, treatments and results. We encourage participants to complete the survey every month so progress can be determined most accurately. A parent who is a legal guardian may complete the survey for a minor child. Those who reside outside the US are invited to take part in the survey. The researchers appreciate your willingness to complete several monthly surveys over the course of a few months.
Please click here to take this ANONYMOUS survey and SHARE it widely so we can obtain the most reliable results:
Please take every few months so we can follow your treatment journey.