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:

• 2021 Reported County-Level Distribution of Lyme Disease Spirochetes, Borrelia burgdorferi sensu stricto and Borrelia mayonii (Spirochaetales: Spirochaetaceae), in Host-Seeking Ixodes scapularis and Ixodes pacificus Ticks (Acari: Ixodidae) in the Contiguous United States
• 2021 Estimating the frequency of Lyme disease diagnoses —United States, 2010-2018
• 2020 A National Public Health Framework for the Prevention and Control of Vector-Borne Diseases in Humans
• 2020 HHS Tick-Borne Disease Working Group Report to Congress
• 2019 NIH Strategic Plan for Tickborne Disease Research
• 2018 HHS Tick-Borne Disease Working Group Report to Congress
• 2018 CDC- Vital Signs-Vector-Borne Diseases Trend Report

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:

• ILADS: Evidence Assessments and Guideline Recommendations in Lyme Disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease, 2014
• Clinical Practice Guidelines by the Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), and American College of Rheumatology (ACR): 2020 Guidelines for the Prevention, Diagnosis and Treatment of Lyme Disease

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:

• Columbia University Medical Center’s Lyme and Tick-borne Diseases Research Center :extensive information regarding Lyme and other tick-borne diseases as well as a second opinion evaluation program for Lyme
• Johns Hopkins University Lyme Disease Research Center: Patient consult and the importance of research in regard to the Lyme epidemic.
• Dr. Daniel Cameron, MD is the lead author of the 2014 ILADS evidence based treatment guidelines. Website provides thorough compilation of treatment resources, news, and updated information regarding Lyme and other tick-borne diseases as well as patient care.
• Dr. Richard Horowitz, MD:  studies evaluating The Horowitz Multiple Systemic Infectious Disease Syndrome (MSIDS) Questionnaire, a screening questionnaire that is useful for providers and patients in diagnosing Lyme disease. Dr. Horowitz has written two books  and published several articles to assist physicians and care of patients.
• Dr. Robert Bransfield: Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist’s Clinical Practice
• Centers for Disease Control and Prevention (CDC): Diseases worldwide are also emerging. The CDC provides information on Tick-Borne Diseases Abroad.
• Peer-Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases

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.

Continuing Medical Education

• The International Lyme and Associated Diseases Society (ILADS)
• Invisible International
• Lyme CME
• The Lyme Disease Association, Inc., Conferences
• LivLyme Summit Conferences
• LymeMind Conferences

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.

• Dr. Ying Zhang, Johns Hopkins Bloomberg School of Public Health: Selective Essential Oils from Spice or Culinary Herbs Have High Activity against Stationary Phase and Biofilm Borrelia burgdorferi
• Dr. Eva Sapi, New Haven University: Effectiveness of Stevia rebaudiana whole leaf extract against the various morphological forms of Borrelia burgdorferi in vitro.
• Dr. Richard Horowitz: Precision medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/post-treatment Lyme disease syndrome: part 1
• Dr. Kenneth Liegner: Disulfiram (Tetraethylthiuram Disulfide) in the Treatment of Lyme Disease and Babesiosis: Report of Experience in Three Cases.
• “Repurposing” Disulfiram in the Treatment of Lyme Disease and Babesiosis: Retrospective Review of First 3 Years’ Experience in One Medical Practice
• Dr. Brian Fallon: Columbia University Lyme and Tick-Borne Disease Research: Clinical Trials Network.

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.

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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.

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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.

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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.