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Dr. Talks: Healing Lyme Summit Highlights

June 10, 2024

The Dr. Talks: Healing Lyme Summit took place virtually over 7 days, June 4-10th, 2024. The Summit was hosted by Dr. Richard Horowitz, MD and Dr. Myriah Hinchey, ND, FMAPS. The Summit featured over 50 of the leading doctors, researchers, and advocates in the field of Lyme and other tick-borne diseases (TBDs) and conditions, as well as patient experience. Topics included treatment innovations, disease management strategies, the latest in research advances, challenges, related conditions, and tick-bite and disease prevention. View the Healing Lyme Summit Program for a full list of speakers and topics.

Key takeaways from the Summit:

Prevention: The key to prevention of tick-borne diseases and conditions is tick-bite prevention. Increasing awareness of different tick species and their habitats is critical to understanding how to avoid or reduce the risk of exposure to tick-bites. Tick repellants mentioned include permethrin treated clothing and various skin repellants effective against ticks, including but not limited to: Picaridin, Deet, IR3535, Lemon Eucalyptus oil, and Cedar oil. Tick tubes were recommended for reducing ticks in yards and school playgrounds. Tick checks, and early and proper tick removal is critical. It was recommended to save ticks for identification and testing. It is easier to test a tick for pathogens than a human.
Lyme and other TBDs: Lyme & TBD’s are complex, and manifestation of chronic disease may be influenced by exposure to other pathogens (co-infections), pre-existing health conditions, and/or other environmental exposures.
Acute & Chronic Lyme disease: Doctors stressed the importance of collecting a thorough patient history, especially regarding potential for exposure to ticks or tick habitat. Lyme is commonly misdiagnosed as other illnesses, yet early diagnosis and initiation of treatment is critical to the best outcome for patients. Doctors discussed differences in symptoms at each stage of the disease and how some patients can progress to chronic stage very quickly depending on how the pathogen moves through the body or by the proximity of tick-bite to head and neck. Biofilms make treatment challenging. Doctors speak to the multiple systems that Lyme disease impacts including but not limited to: the neurologic system, endocrine system, gastric system, immune system, respiratory system, cardiovascular system, eyes, joints, and brain.
Acute Treatment: Lyme Literate Medical Doctors/Naturopathic Doctors (LLMDs/LLNDs) agreed that a minimum of 4-6 weeks (6 weeks stated as optimal) of antibiotic treatment for acute Lyme disease. Initiation of treatment should be within 1 week of exposure for best success. Doxycycline is safe for children and pregnant women for these short courses. It is important to consider potential co-infections, especially if acute treatment of Lyme disease is unsuccessful at resolving symptoms. Dr. Hinchey discussed proper removal of a tick and immediate tick-bite response protocols.
Chronic Treatment: The balancing of all of the bodies systems are critical to treatment success (herbal treatments, pharmaceutical treatments, alternative treatments, or a combo). Dr. Hinchey’s 10 bases protocol and Dr. Horowitz’s Multiple Systemic Infectious Disease Syndrome (MSIDS) model were presented. In addition to treating pathogens, they stress the importance of restoring/supporting the immune system by managing stress, inflammation, gut health (microbiome), biofilms, detoxification, hormones, and other environmental factors such as mold and chemical exposures. Dr. Hinchey discussed the benefits of using modified citrus pectin (PectaSol) to block Galactin-3 which decreases inflammation, helps with binding and detoxification, breaks down biofilms, decreases Herxheimer reactions at the beginning of treatments, and increases natural killer (NK) cells and promotes healthy collogen production. She also discussed and explained herbal treatment therapy protocols and presented many published studies on effectiveness of the herbals in treating Lyme disease. Dr. Horowitz discussed his Dapsone Combination Therapy protocol (protocol published in 2023) and the need for clinical trials. Eighteen of Dr. Horowitz’s patients that achieved remission of Lyme symptoms using the Dapsone Combination Therapy presented their success stories. Multiple other approaches to Lyme & TBD treatment were discussed including: SOT therapy, Infrared Sauna therapy, Integrative therapy, Botanical/herbal therapies, PEMF therapy (magnetic therapy), and approaches to manage Herxheimer reactions.
Lyme and Pregnancy/Childhood Lyme: Lyme is currently ranked as the 3rd most common infectious disease in the US. Sexually transmitted diseases, chlamydia and gonorrhea are ranked 1st and 2nd, and syphilis is 4th. Borrelia (Lyme and Tick-Borne Relapsing Fever), Anaplasma, Ehrlichia and Bartonella bacteria, as well as Babesia protozoan infections may be transmitted from mother to fetus during pregnancy. However, screening for Lyme and other TBDs is not yet routine in pregnancy care. Many women are asymptomatic of disease and do not exhibit a bull’s eye rash or other “classic” symptoms of Lyme disease because their immune system is downregulated while pregnant. Many antibiotics/antimicrobials are safe to administer during pregnancy, but detection of disease is the challenge. Adverse outcomes of pregnancy have been documented for women, fetuses, and babies born with TBDs. Cardiac malformation was the first documentation (1985) of congenital Lyme disease infection. Congenitally acquired Lyme disease may present as autism, ADHD, PANS (Pediatric Acute Neuropsychiatric Syndrome), severe behavioral issues, and other neuropsychiatric symptoms. Physical symptoms include POTS, muscle weakness, fatigue, food sensitivities, and others. The proceedings of The Banbury Center, 2022 Scientific Conference on “Perinatal Transmission of Lyme Disease” will soon be published and is expected to heighten the awareness and education on this underappreciated risk of Lyme & other TBD transmission.
Testing: Though direct and indirect tests are evolving (Jyotsna Shaw, MSc, PhD, IGenex Lab; Felix Scholz, PhD, T-cell testing; Holly Ahern, MS, MT (ASCP), pending innovative lab test), the diagnosis for most TBD diseases/conditions currently must be made clinically as direct testing for pathogens are often time-sensitive, inaccessible, or unreliable for many diseases, and treatments must be initiated early to avoid debilitating illness or death.
Symptoms: Symptoms are highly variable among individuals and may include physical, neurological, and neuropsychiatric manifestations including cognitive dysfunction. Symptoms that relapse and remit, migrate or increase in intensity without other known causes are suspect for Lyme and other TBDs. Neuropsychiatric manifestations, learning, cognitive, behavioral, and sleep disorders are often unrecognized as symptoms of TBDs.
Exposure: Tick-borne pathogens or tick saliva may trigger a cascade of auto-immune dysfunctions, nerve dysfunctions, and related conditions that may require additional treatments: PANS, Autism, ADHD, (MCAS) Mast Cell Activation Syndrome, Alpha-gal, Vagal Dysfunction, Mitochondria dysfunction, Mental Health and Sleep Disturbances, Morgellon’s Disease, Mycotoxin illness, and Long COVID. Many experts in the field presented on these various issues that add to the complexity of disease management and treatment.
Co-infection: The cumulative effect of multiple pathogens plays a big role in disease complexity. The three B’s (Borrelia, Bartonella, Babesia) are a common trio in chronic disease cases, and must be addressed, especially in patients that fail initial treatments. Pre-existing viral exposures may also be reactivated after new pathogen exposures contributing to more severe or complex symptoms.
MyLymeData: The MyLymeData patient registry was presented by Lymedisease.org (LDAnet member)CEO, Lorraine Johnson. This is the largest Lyme patient registry in the US and is being used to answer key questions important to patients, treatment approaches, and research priorities. Patients may register to be a part of this research at MyLymeData.
Alpha-gal syndrome: It is estimated that 500,000 people are impacted by alpha-gal meat allergy, and the lone star tick responsible for this condition is expanding distribution. Advancements in potential management of alpha-gal syndrome are promising. The FDA just approved the drug Xolair for food allergies. Xolair is showing a reduction in the rate of reactions in peanut allergies, though data is not yet published. With avoidance of red meat over time, some patients are showing resolution of allergy. The key is to avoid additional tick bites. Additional tick bites extend the time and potential severity of the syndrome. Key research questions to be answered as stated by Dr. Scott Commins, Md, PhD, include “What is the risk of a single tick bite in development of the alpha-gal allergy” and “Can an allergy shot/vaccine be developed against tick saliva to desensitize allergy reactions?”
Advocates: Rachel and Dorothy Leland shared their personal experiences as daughter and mother navigating Lyme disease. They discussed the experiences published in their book, “Finding Resilience: A Teen’s Journey Through Lyme Disease.” Advocate and film maker, Lindsay Keys, discussed her advocacy efforts with “The Quiet Epidemic” and the use of this documentary in advancing medical education and research.