Additional Resources

Education, Prevention, Research & Advocacy

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Additional Resources

Additional Resources

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Additional Resources

Diagnosis and treatment of Lyme and other tick-borne diseases and conditions is often difficult due to the variable presentation. As these risks continue to grow, Coloradans are in need of medical care providers experienced in recognition, diagnosis and treatment of tick-borne diseases and conditions.

We have provided some additional 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, play or travel.

Federal Resources

The following reports highlight the diseases, the risks, and the need for increased research; and better diagnostic tools, treatment and education:

Diagnosis and Treatment Recommendations

Controversy surrounds the diagnostics, testing and treatment for Lyme disease making decision making between physicians and patients often contentious. Ultimately, medical decisions need to be a shared decision making process made by both fully informed physicians and patients. There are currently two standards of care for Lyme disease that both patients and physicians should be aware of:

For most tick-borne diseases and conditions, successful outcome depends on early diagnosis and adequate treatment. Some diseases or conditions can become chronic, debilitating or even fatal.

The following resources are valuable tools for primary care physicians, emergency room doctors, nurses and specialists in learning how to recognize disease; and to evaluate and properly treat their patients:

Tick-Borne Disease Reporting

Currently, CDHPE requires only 7 tick-borne diseases as reportable. To report a case of tick-borne disease in Colorado, visit Colorado Department of Public Health & Environment here, or contact your County Public Health Department.

2021 CDC New data dashboard: syndromic surveillance of emergency department visits for tick bites by time, region, and age/sex.

Continuing Medical Education

Treatment Research

Breakthroughs in treatment research. Lyme disease continues to be the most prevalent tick-borne disease in the United States and one of the most difficult to treat for a growing number of patients. Researchers across the country are focusing on new treatments for effective eradication of the demonstrated persistent Lyme bacteria.

Congenital Lyme Research

Children’s National Hospital – Congenital Infection Program has launched a pilot study being led by Sarah Mulkey, MD, PhD, “Pregnancy and Early Neurodevelopmental Outcomes Following In Utero Lyme Disease Exposure.”

The study is actively recruiting pregnant volunteers to participate in questionnaires, one fetal MRI and ultrasound, one infant MRI and ultrasound, two in-person neurology evaluations, and two blood draws. The goal is that every pregnant person in the US and Canada who is diagnosed with Lyme disease or PTLDS is given the opportunity to participate in this study. We need your help finding them!

This study will assess the feasibility of evaluation for outcomes of pregnancies of women affected by Lyme disease infection. Brain development of fetuses, infants, and children exposed to Lyme disease in utero will be assessed. Infants will be followed from birth to age 18 months. Study participants will be reimbursed for their travel up to 230 miles each way to Washington, DC for each in-person study visits. An additional qualitative study will be initiated in 2024 to help guide future research on child and family outcomes after congenital Lyme exposure. Clinicians who refer patients to study who are subsequently enrolled in the study will have opportunity to join the Lyme in Pregnancy Working Group.

This study is funded by the Clinical Trials Network for Lyme and Other Tick-borne Diseases which is supported by a grant from the Steven & Alexandra Cohen Foundation, the largest private funder of Lyme and tick-borne disease research in the country. For questions about study, please email Meagan at mewilliams@childrensnational.org.

Link to Screening Survey: Lyme in Pregnancy Study Participant

 

Patients

Being informed and educated about Lyme and other tick-borne diseases and conditions 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 additional 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.

  • Mary Beth Pfeiffer reports on Torrey et al. vs. Infectious Diseases Society of America (IDSA) et al., a lawsuit filed in 2017 on behalf of Lyme disease patients who say they have been denied care and harmed under existing insurance and medical protocols. www.thefirstepidemic.com/lyme-lawsuit-1

Other Organizations

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 LymeAid4Kids fund to financially assist parents in need to get their children diagnosis and care.


Lymedisease.Org
National leaders in Lyme providing advocacy, education and research. They produce The Lyme Times digital publication, an excellent resource for patients, parents, physicians, and educators. They also manage the largest patient powered research database, MyLymeData.


The International Lyme and Associated Diseases Society (ILADS)
ILADS provides evidence based treatment guidelines. 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.


Neuroimmune Foundation
A non-profit organization dedicated to dramatically accelerating physician education of neuroimmune and inflammatory brain conditions; significantly improving outcomes for individuals impacted by these disorders; providing meaningful support to families during their darkest days; and catalyzing research at an unprecedented pace.