Madison Area Lyme Support Group

By Jennifer Crystal

A RECAP OF THE 20TH ANNUAL ILADS CONFERENCE

From November 1 to 3, I had the opportunity to attend the 20^thannual International Lyme and Associated Diseases Society (ILADS) conference in Boston. Tick-borne disease can feel isolating for patients and caregivers, and for doctors who are trying to help them in areas where Lyme isn’t historically endemic. However, the conference assured me that the Lyme community is not only thriving, but making great strides on behalf of its most important members: patients like you and me.

In the coming months, I’ll be writing in-depth blog posts on specific topics covered at the conference. For now, I want to share my general takeaways:

NEW TREATMENT METHODS

Antibiotics have long been the standard course of treatment for Lyme and other tick-borne diseases (sometimes used in conjunction with other types of medications, including antimalarials for certain co-infections). We know unequivocally that antibiotics kill borrelia burgdorferi, the Lyme bacteria. In fact, Eva Sapi, Ph.D., Director of the Lyme Disease Program and Professor in the Biology and Environmental Science Department at the University of New Haven, showed images of Lyme spirochetes being treated with penicillin. First they wiggled, coiled, and fought the treatment, but eventually, they disappeared.

Despite the efficacy of antibiotics against Lyme, they have their limits, especially in patients with late-stage infections. Dr. Sapi’s research has demonstrated that Lyme bacteria can create biofilms (like a greasy buildup, similar to dental plaque) that form around the bacteria, acting as a barrier against antibiotics. Furthermore, some patients who receive antibiotic treatment still experience ongoing symptoms, or a relapse of symptoms, after finishing the standard antibiotic treatment protocol (known as Post Treatment Lyme Disease Syndrome). Therefore, researchers and doctors are exploring new methods of treatment. Leading Lyme expert Kenneth Liegner, M.D., a Board-certified internist with additional training in pathology and critical care medicine, said the solution is “not denial but design of more effective and less costly treatments.”

Based on research (funded by Global Lyme Alliance) by Kim Lewis, Ph.D., Director of the Antimicrobial Discovery Center at Northeastern University, and on work by Stanford University researchers, some LLMDs are trying the antimicrobial drug Disulfiram.More commonly known as Antabuse, this medication is used to treat alcoholism and has proved highly effective against Lyme disease. It may possibly undermine biofilms, and it also seems to help treat babesia. Dr. Liegner has published his experience with three cases in which he used Disulfiram. He and other doctors are seeing great success with it, with some patients enjoying enduring remission (feeling well for at least six months after treatment). However, there can be serious side effects that should be discussed with your LLMD, and there are still a lot of unanswered questions about the drug. My sense from speaking with doctors is that there will probably be at least another year or two of research before we have definitive answers on this drug, but early news is promising.

An antibacterial drug that also got a lot of buzz at ILADS was Dapsone. Richard Horowitz, MD, author of Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease and its sequel, is studying the effects of antibiotics and Dapsone both in combination and alone. He and Phyllis Freeman, Ph.D., Associate Professor of Biology and Curriculum Coordinator of Biology in the Department of Life and Physical Sciences at Fisk University, have published results of these studies in the International Journal of General Medicine. For further information, read this GLA press release on drugs and drug combinations that show success in treating Lyme.

Another alternative to antibiotics that is being studied is phage treatment.Phages are viruses that infect bacteria. In his talk, “Specific Phages as New Strategies for Diagnostics and Treatment,” Louis Teulieres, M.D., Ph.D., of the Department of Infection, Immunity, and Inflammation at the University of Leicester, said phages are used in molecular biology in many countries; one was found for borrelia in Sweden.

UP-AND-COMING DIAGNOSTIC METHODS

While it’s unlikely that we’ll be able to treat Lyme by injecting a live virus into the body, phages may be useful as a diagnostic tool. If phages don’t find bacteria, they die, so their ability to live is a good indicator of whether Lyme bacteria are present. Dr. Teulieres and his team are working on creating a phage-based diagnostic test.

Other researchers are working on biology-based diagnostic tools. James Collins, Ph.D., of the Institute for Medical Engineering at the Massachusetts Institute of Technology, who is associated with the Broad Institute, also of MIT, Harvard and The Wyss Institute, is looking at using human cells as programmable technology. His company Sherlock Biosciences is teaming with Sabeti Labs to create a paper-based diagnostic tool that can be used in a doctor’s office. This type of detection was used in diagnosing the Zika virus, and scientists are now looking at applying it to tick-borne diseases. While the project is still 12-18 months from initial clinical trials, it’s exciting to know that possibilities for better diagnostics are on the horizon.

COLLABORATION, WITH TANGIBLE RESULTS

As described in “The Lyme Wars” (New Yorker, 1 July 2013) the Lyme community is polarized, and even within each camp, there hasn’t always been harmony or good communication. In her talk,“One Health: Forming Collaborations that Transcend Disciplinary Boundaries,” Cheryl Stroud, D.V.M, Ph.D. said doctors and researchers can sometimes get stuck inside their respective professional “silos”. They do important work side by side but don’t have the opportunity to see or discuss what the other is doing despite proximity in the field. She encouraged conference attendees to “step out of [their] silos and see the big picture.” This is the mission of the One Health Commission, which Dr. Stroud chairs.

The Centers for Disease Control and Prevention defines One Health as “… a collaborative, multisectoral, and transdisciplinary approach—working at the local, regional, national, and global levels—with the goal of achieving optimal health outcomes recognizing the interconnection between people, animals, plants, and their shared environment.” As a veterinarian who sees a lot of tick-borne disease, Dr. Stroud feels she has important information to share with our Lyme doctors, and vice-versa. She encouraged LLMDs to broaden their intake questionnaires to include animal exposure (a patient’s dog may have been carrying a tick, or the patient may have bartonella henselae, also known as cat scratch fever).

This big-picture collaboration is something Kristen Honey, Ph.D., P.M.P. is working on as Vice-Chair of the Department of Health and Human Services (HHS) Tick-Borne Disease Working Group, established by the United States Congress in 2016. Through her role with HHS, Dr. Honey co-founded Lyme Innovation, whose mission is “to solve the critical prevention, diagnostic, treatment, and rehabilitation challenges in the Lyme disease field.” Dr. Honey stressed the importance of putting patients at the center of this problem solving, stating that “the lived experience of a patient or caregiver is equally as valuable as an MD with credentials. When we put the patient at the center, we get better outcomes.”

In December 2018, HHS’s Chief Technology Officer hosted the first-ever Lyme Innovation Roundtable, bringing together 80 Lyme leaders including patients, clinicians, researchers, caregivers, and policymakers. In the last year, Lyme Innovation has focused on creating patient-powered technology and innovation, including the Lyme Symptom Tracker app, co-created with Trial X and Global Lyme Alliance. Lyme Innovation helped bring the TICK (Ticks: Identify, Control and Knockout ) Act to the U.S. Congress. Recently renamed the Kay Hagan TICK Act bill in honor of Senator Kay Hagan (D-NC), who passed away in late October from complications of the tick-borne Powassan virus, the bill seeks to improve research, prevention, diagnostics, and treatment for tick-borne diseases, and includes a request for $100M for tick research. Just as the ILADS conference concluded, the Senate Health Committee voted unanimously to advance this legislation; it nows moves to the full Senate.

Moving forward, Dr. Honey notes the importance of collaboration between industry, non-profits, academia, patients, and patient advocates. I feel confident she will continue to lead the charge on bringing people together to effect positive change. She ended her talk by saying, “I look forward to co-creating solutions with you,” and later offered a smaller session, “Together, Transforming Lyme Anecdotes into Data and Action,” where she opened up a dialogue with attendees, asking what they most needed from the government (answers included funding and a standardized reporting protocol). Dr. Honey seems committed to creating innovation and finding funding that will help patients get and stay well.

Overall, I left the conference feeling incredibly hopeful. I first attended an ILADS conference in 2012, and I am so pleased with the progress that has been made in the interim. As Dr. Horowitz said, 

“Researchers out there doing work on biofilms and persisters allow clinicians like me to make advances. We’re very close to a durable answer.”

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com