Resources for Patients
Being informed and educated about Lyme and other tick-borne diseases is the best way of advocating for the health and well being of yourself and your family. Because the risk of Lyme and other tick-borne diseases are not widely accepted nor discussed within Colorado, reliable information is often difficult to locate. We have provided some resources to help you navigate the often unrecognized and complex illnesses that can be acquired through the bite of a tick regardless of where you may live, work, travel or play.
The Lyme Disease Association, Inc.
We are and affiliate and partner with LDA, National leaders in Lyme research, education, prevention and patient support. The organization provides information and resources for patients, physicians and educators including the LymeAid 4 Kids fund to financially assist parents in need to get their children diagnosis and care, the book “Let’s Get Well” a resource written in language that conveys the experience of chronic Lyme Disease to children ages 8–12 and “The ABC’s of Lyme” an educational brochure for parents and educators in regard to the many manifestations of Lyme disease in children as well as other classroom resources on Lyme prevention identification and accommodation. http://www.lymediseaseassociation.org/
National leaders in Lyme providing advocacy, education and research. They publish The Lyme Times (now electronically), an excellent resource for patients, parents, physicians, and educators, and have initiated the patient powered research database, MyLymeData. They provide a simple symptom checklist if you suspect Lyme disease. https://www.lymedisease.org/
The International Lyme and Associated Diseases Society (ILADS)
ILADS provides the only evidence based treatment guidelines for Lyme disease currently published by the National Guidelines Clearinghouse (NGC). They offer a Physician Training Program and a referral program for patients seeking a medical care provider experienced with Lyme and other tick-borne illness. Their goal is to foster excellence in care for Lyme and other tick-borne disease patients, addressing the challenges in effectively diagnosing and treating tick-borne diseases. Scholarships are available. http://www.ilads.org/
For information regarding ticks, diseases, prevention and identification. You may participate in their TickSpotter program to help with surveillance of tick distribution and activity. Visit University of Rhode Island TickEncounter Resource Center
Lyme Disease Challenge
A tremendous source of information for patients and caregivers. Take and support the challenge to take a “Bite out of Lyme Disease”! Visit http://lymediseasechallenge.org/
Dr. Daniel Cameron, MD
As lead author of the 2014 ILADS evidence based treatment guidelines, he offers a thorough compilation of treatment resources, news, and updated information regarding Lyme and other tick-borne diseases as well as patient care http://danielcameronmd.com/
Dr. Richard Horowitz, MD
As previous research has demonstrated, self-reported symptoms can be reliable predictors of health outcomes. Three studies evaluated The Horowitz Multiple Systemic Infectious Disease Syndrome (MSIDS) Questionnaire, a screening questionnaire that is both useful for providers and patients in diagnosing Lyme disease. Dr. Horowitz has also written two books to assist in physicians and patient care.
Ying Zhang, MD, PhD
Dr. Zhang is a Professor at Department of Molecular Microbiology and Immunology, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA. His group recently identified a range of FDA-approved drugs and drug combinations that have excellent activity against Borrelia burgdorferi persisters. These findings have generated considerable interest and opened up new opportunities for more effective treatment of persistent Lyme disease. In collaboration with colleagues, his group is interested to evaluate the promising drug candidates with high activity against Borrelia persisters and drug combinations in animal models and also in patients for more effective treatment of persistent Lyme disease. http://www.jhsph.edu/faculty/directory/profile/786/ying-zhang
Dr. Robert Bransfield
Complied List of articles citing chronic infection associated with tick-borne disease http://www.ilads.org/ilads_news/2015/list-of-700-articles-citing-chronic-infection-associated-with-tick-borne-disease-compiled-by-dr-robert-bransfield/
Sandy Berenbaum, LCSW, BCD, Lyme-Literate Psychotherapist
“Lyme disease can be a debilitating illness having a profound effect on interpersonal relationships and a patient’s ability to function at home, in school, and in the workplace. Making matters worse, most chronic Lyme patients suffer from delayed or inaccurate diagnoses prior to finding a doctor who will treat their illness effectively. Some patients have spent months or even years trying different treatments that don’t work, since their diagnosis was, in fact, wrong. Patients often feel isolated and trapped when those around them do not understand the complexity of their illness and what they are experiencing.” Sandy provides resources for parents, educators and children dealing with these complexities of Lyme in the family and the schools. Visit www.lymefamilies.com
Bartonella brochure http://www.galaxydx.com/web/pdfs/Bartonella_brochure_general.pdf