I just ‘attended’ the 2020 International Lyme and Associated Disease Society (ILADS) 21st Annual Scientific Conference entitled: “One Health Lyme: The Intersection of Lyme and COVID.”

As most everything else in 2020, ILADS was extremely different this year with the entire conference presented virtually.

It was a bitter-sweet conference for me. Bitter in that ILADS is typically one of the only times each year I get to see in-person friends and researchers from around the world that I normally only communicate via text, Twitter and e-mail. Sweet because I could avoid expensive travel and attend the conference from the comfort of my own home.

Online, pre-recorded

Overall, I was impressed with how smoothly the conference operated. All of the presentations were pre-recorded. They ran on schedule via a format that allowed you to chat with the presenter and other attendees in real-time. At the end of each day, there were “meeting rooms” where you could watch a virtual panel discussion with that day’s speakers and ask questions via the chat feature.

One of my favorite panel discussions took place after the Saturday session. Doctors Mozayeni, Ehrlich, Kauffman, and Teulieres entered into a deep discussion about the newly developed phage testing and prospects of phage-based therapies for tick-borne diseases.

(In the United States, phage therapy was just recently approved by the FDA for certain types of antibiotic-resistant infections.) I felt like I was watching geniuses brainstorming for a new clinical trial. I’ll keep you all updated as I learn more about this.

For the fifth year in a row, I live-tweeted the ILADS conference for LymeDisease.org. Rather than recounting everything that was said during the conference here, I suggest you look at my tweets that we have compiled for you in each of the sections below.

The intersection of Lyme and COVID

Friday featured a total of 10 world-class speakers who focused on some of the similarities and differences between Lyme and COVID. Mainly, that they are both zoonotic diseases, meaning they are spread from animals to humans and that the “One Health” approach is the best way to tackle pathogens that have potential to spread worldwide.

ILADS president Dr. B. Robert Mozayeni opened the meeting by stating his goal of bringing more medical science, better diagnostic tools and better decision making to the clinical setting. Dr. Mozayeni was trained in Internal Medicine and Rheumatology at Yale and at NIH, where he was a Howard Hughes Research Scholar and later, Senior Staff Fellow.

As a Fellow of the non-profit Think Lead Innovate Foundation and a co-founder of the Foundation for the Study of Inflammatory Diseases, Dr. Mozayeni brings a deep understanding of complex conditions related to inflammatory diseases.

Like many of us, as the COVID-19 pandemic unfolded, Dr. Mozayeni wondered “How can we use the situation to learn and grow? What can we learn from COVID to inform Lyme disease management?”

“Long haul” vs “chronic”?

COVID-19 isn’t even a year old, so not a lot is known about its long-term effects. But we are beginning to see a subset of patients who have prolonged symptoms, lasting six months or more. Many calling these COVID “long-haulers” rather than “chronic” COVID. This is a familiar theme to Lyme patients who are left with chronic symptoms following standard treatment, but are forbidden from calling it “chronic Lyme.” (In June, I wrote in great detail about the similarities and difference between Lyme and COVID here)

With COVID-19 researchers are just now discovering how persistent inflammation triggered by infection adversely affects the severity of the disease process. But for Lyme patients and physicians who treat them, the inflammatory pattern is familiar. As Dr. Mozayeni said, “all of us have been working in this paradigm for years and know it all too well.”

See my tweets about Friday’s speakers here.

Neil Spector Humanity Award

Saturday opened with Dr. Mozayeni’s heart-wrenching introduction of the Neil Spector Humanity Award. Dr. Spector, who passed away on June 14, was a hero to the Lyme community for his contributions in advancing research on tick-borne diseases.

Not only was Neil a great friend to the Lyme community, he was on the verge of a breakthrough discovery with Lyme and Bartonella. His passing is a great loss to me, the medical community and frankly, the whole world.

The award was given to Rob J. Kulathinal, PhD, of Temple University. His ILADS talk was entitled, Mining for Lyme: Novel Informatics-Driven Frameworks to Study Disease.

Dr. Kulathinal is an evolutionary genomicist and bioinformatician. His lab’s primary research interests focus on how rapid evolutionary processes generate the remarkable molecular patterns of diversity within and across genetic systems.

Dr. Kulathinal is currently an Associate Professor at Temple University’s Department of Biology and Director of the PhD in Bioinformatics graduate program. He is also a founding member of the Center of Computational Genetics & Genomics (CCGG) and the Institute of Genomics & Evolutionary Medicine (iGEM).

Big Data Implications for Patient Care 

The overarching theme on Saturday was to encourage patients and clinicians to pool and utilize data to share their experiences. The goal is to report their data in such a way that others can collectively generate best practices and shorten the cycle of translational medicine.

Among the eight presenters was Lorraine Johnson, JD, MBA, CEO of LymeDisease.org and principal investigator of MyLymeData, our patient powered research project with over 13,000 participants. MyLymeData, launched in 2015, is already compiling data in a way that researchers and patients can learn from.

During her presentation, Lorraine shared information from two studies that have yet to be published, including details from a sub-set of MyLymeData patients whose health has improved. This is an important piece of the puzzle as everyone really wants to know why some patients get better and others do not.  The fact that a portion of the patients in MyLymeData consider themselves “well” is very encouraging. (We will share this information with you as soon as it is published.)

Click here to see the details of Saturday’s session.

Mental Health and the Brain: Implications for Tick-borne Diseases

Sunday’s track was designed to help providers improve their neuropsychiatric diagnostic and treatment skills for the special needs of patients with neurological symptoms caused by tick-borne diseases.

Dr. Robert Bransfield and Dr. Leo Shea went into great detail about what to look for and how to diagnose patients with neuropsychiatric Lyme and Lyme encephalopathy.

Dr. Linda Williams finished the day by going over the extremely complex factors involved in treating patients with neuropsychiatric Lyme and tick-borne diseases. Like most patients with chronic/persistent Lyme know, it requires a compassionate physician who is willing to believe your symptoms and stick with you until the right protocol is found.

I was happy to hear Dr. Williams frequently has medications and creams custom compounded for her patients knowing that many are allergic to the dyes and fillers in their medications. On a personal note, finding out that my daughter with MCAS was allergic to the fillers in her medication was a HUGE turning point in her healing journey.

Click here to see the details of Sunday’s session

Looking Forward

No one knows how long it will take for the COVID-19 pandemic to slow down. I was heartened to see that ILADS didn’t let the situation keep them from sharing the important information so many of us rely upon.

More encouraging news: ILADS plans to launch a virtual program to include shorter more frequent scientific sessions. We will share details when more is known.

I hope you all enjoyed what you have learned here. I will end with a quote from Dr. Mozayeni while remembering the gifts of Neil’s legacy that “love is the answer,” and a reminder from Dr. Williams to “be the keeper of hope.”

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. In 2019-2020, she served on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org .