Lyme Time with Paula Jackson Jones

National Lyme Disease Association Conference Recap

Tue, 10/01/2019 - 12:00pm

It was a great honor for me to have worked at the 20th annual Scientific Conference on Lyme & Other Tick-Borne Diseases on Sept. 21 and 22 in Philadelphia, Pennsylvania at the Hilton Penn’s Landing on the banks of the Delaware. It was jointly co-hosted by the national Lyme Disease Association (LDA) and Columbia University. Working this conference gave me backstage insight and a front row seat to the transformation of medical minds. I saw that because I worked the registration table and had interactions with all the speakers, scholarship winners and attendees all day long. I witnessed the shift in thinking as the conversations evolved during breaks and lunches. When presented with science, many medical providers struggle with what they know and what they’ve always done with what is new. It takes time for all this to settle in and for them to absorb how to implement this new science in their practices and with their patients. To say they were overwhelmed would be putting it mildly.

It was a pleasure for me to spend time chatting with these providers, knowing that seeds were planted and hoping that when they returned home, they would begin implementing change. I saw a lot of people that I had seen at previous conferences. Knowing that they were coming back for more information and further education was very inspiring. The conference offered regular admission and admission with continued medical education credits (CMEs). The conference was offered to medical providers as well as adult patients, however, the material being delivered was, at times, intense. I spoke with parents, I also spent time with patients and fellow advocates.

Friday evening, following conference setup work, was the advocate dinner. This was a separate event from the conference. It was an opportunity for all the organizations that have partnered with the national LDA to share with one another what they have been up to this year and what they have coming down the pike. Sharing and engaging with like-minded people only lifts your spirits higher and it validates the path that you are on. It also gave us an opportunity to meet face to face as there are advocate organizations all over the United States.

The conference itself was held Saturday and Sunday and packed full of scientific presenters. I stress the word scientific because all too often, the Lyme community gets attacked by medical providers who use the term “quackery” and “witch doctors”. I am choosing to share the speaker line up and topics to hopefully put that to rest once and for all.

The conference features faculty consisting of clinicians and researchers from across the U.S. and other countries. Brian A. Fallon, MD, MPH, Columbia University College of Physicians & Surgeons, the Conference Director, spoke on Clinical Trials: Biologic & Clinical Measures of Change. Other speakers include Charles Chiu, MD PhD: Multi-Omics approaches to diagnosing Lyme & TBD; George Chaconas, PhD: Intravital imaging to study Lyme dissemination; Adrian Baranchuk, MD: Lyme carditis diagnosis & management; Emir Hodzic, DVM, PhD: Post-treatment persistence of Bb in mouse model; Mark Soloski: PhD, LD host immune response; Holly M. Frost, MD: Pitfalls of LD serologic assays; Ingeborg Dziedzic, MD: Lyme disease & the eye; Lance A. Liotta, MD, PhD: Shedding of urinary tick pathogen-specific proteins in patients with tick borne diseases; and Osama Haddad, MD: Mitral Valve Endocarditis: A Rare Manifestation of Lyme Disease.

Do I have your attention yet? If not, there’s more.

Additional speakers are Margaret MacDonald, MD, PhD: Powassan virus; Choukri Ben Mamoun, PhD: Babesia duncani in vitro culture; Philip Strandwitz, PhD: The Gut-Brain-Axis – Potential Therapeutic Targets and J. Stephen Dumler, MD: Human Granulocytic Anaplasmosis-Emerging Faster than Lyme; Daniel Sonnenshine, PhD: Expansion of TBD vectors & implications of spread of TBD; and Paige Armstrong, MD, MHS: Rickettsial diseases; Robert Naviaux MD, PhD: Lyme & Chronic Fatigue Syndrome; Eric Storch, PhD: Obsessive Compulsive Disorder; Peter Novak, MD, PhD: Neurological correlates of Post Treatment Lyme Disease Syndrome; and Joanna Lyon, PharmD, MEd: The possible association between the human ABCB1 gene and Post Treatment Lyme Disease Syndrome. Elizabeth Maloney, MD and Sam T. Donta, MD will be conference facilitators.

Wait! There’s more ...

Speakers represented Columbia University, Johns Hopkins University School of Medicine, Yale School of Medicine, Mayo, Harvard Medical School, Uniformed Services University, CDC, UCSF School of Medicine, Queens University Canada, University of Calgary Canada, Northeastern University, University of Colorado School of Medicine, UC Davis Veterinary Medicine, Rockefeller University, UCSD School of Medicine, University of Maryland School of Pharmacy, Old Dominion University, George Mason University, University of Oklahoma Health Sciences Center, Baylor College of Medicine and an ophthalmology practice.

See? Highly educated professionals from some of the most ivy-league and prestigious colleges and universities. No witch doctors, nothing even remotely close to quackery. Just new science, being presented by experts in their field, and its relationship to Lyme and tick-borne diseases. These are the people who have taken the time, to do the work and to find the connections whether it be in diagnosing or treating tick-borne disease. When I write about providers being on the cutting edge of new science, this is what I am referring to. These presenters and the conference attendees who absorb this new science and return to their practices with a better understanding.

New science isn’t quackery and it’s not witchcraft. If it were, we would not have researchers who continue to work to find new strains of disease and new treatments. Without researchers, we would all have succumbed to something long before now. Even the flu shot is evaluated on an ongoing basis and its formula evolves every year as new strains of bacteria are discovered. And no one is mocking that.

It’s time to accept the epidemic of tick-borne disease because we’re living in it. It’s time to step up and acknowledge one’s knowledge and limitations for the sake of your patients. It’s time for medical providers to work together for the betterment of their patients, to put aside differences, stop the attacks, stop mocking the patients and start behaving as the professionals you profess to be. It’s time to remove the roadblocks for patients accessing care services. The science is there even if you choose to ignore it.

Paula is the president of the MLDSE, former co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org or visit www.mldse.org