by Jennifer Crystal
This past weekend, November 9 through 12, I had the opportunity to attend the International Lyme and Associated Diseases Society (ILADS) conference in Boston. For four days I woke up at 5:30 a.m. so as to be ready for even the earliest sessions, where I spent hours learning about topics such as hypothalamic and pituitary function, extracorporeal photopheresis, and mycotoxin-induced immuno suppression. You would think so much medical jargon would cause a mental meltdown in a Lyme patient such as myself. But the truth is, I loved every minute of it. Even without a degreed physician’s grasp of the science, I was able to glean the big picture of the conference, which was inspiring and empowering, and filled me with hope. I left feeling invigorated.
As a Lyme warrior and a writer, I strive to serve as a communication liaison between doctors and patients. I hope to make patient narratives accessible and meaningful to physicians, and I try to translate scientific material into readable layman’s terms. So, let me share with you my overall takeaways from the ILADS conference:
The theme of this year’s conference was “Tick-Borne Diseases: The Global Perspective.” Medical professionals and patient advocates came from 20 countries and 41 states including Alaska and Hawaii, and presenters spoke about the latest research and statistics from research institutions in North and South America, Europe, Africa and Australia. I learned about strains of Borrelia—the bacterium that causes Lyme— in Russia and Iran. Brazil has its own exotic tick-borne illness that mimics Lyme, called Baggio-Yoshinaro syndrome. Worldwide, there is an urgent need for research and better testing, but the good news, according to Dr. Christian Perrone, Professor of Infectious and Tropical Diseases on the Faculty of Medicine Ile-de-France Ouest, is that awareness is spreading in both the public and medical sectors. There is some exciting treatment research being undertaken, too. Dr. Omar Morales, founder of Lyme Disease Mexico, is taking a hematological approach, looking at ways to remove bacteria from the blood.
Current tests for Lyme disease are unreliable. Dr. Brian Fallon, Director of Columbia University’s Lyme and Tick-Borne Disease Research Center, pointed out that the standard two-tiered ELISA and Western Blot test, which only has a 40% accuracy rate, was developed in 1994—10 years before there were iPhones, and years before we even had email. In his talk “The Good News About Lyme Research,” Dr. Fallon referred to testing as a “fishing expedition.” The ILADEF Power of Lyme Award recipient, activist Jenna Luché-Thayer, said that beyond faulty diagnostic tests, there are also problems with spotty, misleading surveillance; nebulous medical coding; misinformed policy; insufficient research; and, of course, politics. Researchers are working on new tests, including one that is cellular based, and one that looks at DNA sequencing, which would allow doctors, in Dr. Fallon’s words, to “cast a wider net.” The DNA sequencing test can identify an unknown pathogen in several days. Moreover, scientists are working on vaccines, and are trying to genetically engineer mice to produce Borrelia-killing antibodies. “There’s lots of reason for hope,” Dr. Fallon said. “Science is bridging the great divide.”
Patients often ask me, do you recommend taking antibiotics? Or going the natural route? I always respond that what worked best for me was a blend of Western and Eastern modalities, known as Integrative Medicine. Lyme is a bacterial infection, and antibiotics kill spirochetes. In my experience, homeopathic remedies, nutritional supplements, diet, and other therapies like cranial sacral or neurofascial processing are adjuncts only that can complement but not replace the need for FDA approved medication. The lectures I heard at ILADS reinforced the idea that the best approach to treating tick-borne illness is a holistic one, which incorporates antibiotic treatment, immune reinforcement, nutritional supplements, and lifestyle changes that support well-being and detoxification.
In his talk on eliminating infection, Andrew Petersen, DO, Chief Physician and Founder of Whole Earth Medical Group, Utah, outlined a history of medical theories. The Miasma Theory, accepted from ancient times through the 1880s, postulated that dirty air, water, and bad energy cause illness. We then had Pasteur’s Germ Theory, which posited that specific microorganisms are the cause of specific diseases. Then there was the Béchamps Host Theory that illness is caused by a host having insufficient defense to pathogens.
Dr. Peterson called all of these theories “true, but not true enough; and wrong, but not completely wrong.” Modern Combined Theory looks not just at the pathogen, but also at the host. Infection is part of the picture, but so is the immune system’s ability to respond to it, which can be influenced by body toxin levels. The standard paradigm for treating Lyme disease is to try to eradicate the infection, but the Infectious Diseases Society of America (IDSA) and ILADS have long argued over how long that should take.
Conversely, Dr. Petersen contends, complete assessment of Lyme should include infection, immune dysfunction, and toxins (such as mold, mercury exposure, and toxins built up in the body and brain by both the infection and its subsequent die-off of infection). Other speakers also called for such an integrative approach.
We also need to look toward precision medicine, a model that customizes care for individual patients, especially since every case of tick-borne illness is different and there is no set treatment protocol. Understanding infection, inflammation, and autoimmunity will helps doctors to “make personalized medicine, so we can better treat our patients,” said John Lambert, MD, PhD, of the Dublin, Ireland Infectious Disease Clinic.
Patients are the sick ones, so it only makes sense for their experience to inform research, diagnosis and treatment of tick-borne disease. As Dr. Lambert said, “We need to treat the patients, not the laboratory tests”—especially when those tests are so unreliable.
In her presentation “The Value of Using Big Data in Lyme Disease,” Lyme Disease.org’s‘s CEO Lorraine Johnson J.D., M.B.A., called Lyme “a researched orphaned disease.” The last federal treatment trial for Lyme was funded over 15 years ago. LymeDisease.org has created MyLymeData, where patients can register and provide information that can serve as a research platform to affect quality of care and policy change. Johnson said, “Patient registries are a research game changer…allowing people to act based on best past practice, not best available evidence.”
Another area that needs a patient-centric shift is health insurance. Medical treatment should be determined by physicians, not insurance companies. This was something Sheila Statlender, Ph.D., of the Massachusetts Lyme Legislative Task Force, worked hard for. The Task Force got an act passed in 2016 that requires Massachusetts insurance companies to cover long term antibiotic therapy for the treatment of Lyme. While the legislation has its loopholes, it’s a model toward more sensible statutes in other states. In her presentation “Update on Local Lyme Activism,” Dr. Statlender said that such legislation “empowers licensed physicians to use their clinical skills appropriately,” and that’s good news for patients!
Though there is still much work to be done, Lyme awareness and research have come a long way. Nowhere was that truth more evident than at the ILADS conference. Whether or not you know what the glymphatic system is or understand why chemokine CCL-19 remains elevated among patients with post treatment Lyme doesn’t matter. For patients, what matters most is this: there were 750 people at this year’s ILADS conference. That’s 750 researchers, doctors, and advocates on the front lines of tick-borne illness, working every day to make life better for patients like you and me.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com