LYME SCI: Finding encouragement at Stanford’s Lyme conference
It had been six years and two months since I’d driven down the lane leading into Stanford. Not gonna lie. Driving past the hospital triggered a little PTSD.
In 2014, my daughter was acutely ill. Referred by her pediatrician, we went from an inpatient stay at Stanford’s pediatric hospital to a series of specialty clinics.
Each doctor was looking for the root cause of her headache, fever, fatigue, cardiac arrhythmia, short term memory loss and a host of other symptoms.
There was no doubt her symptoms were real. They were measurable and visible. You could see the discoloration in her legs. Fevers occurred weekly. Neck was stiff. Blood pressure was 70:50. There was never a time when the doctors didn’t believe something was wrong. But they couldn’t find the cause.
Eventually, a non-Stanford doctor discovered she was CDC-positive for Ehrlichia chaffeensis. Then we started looking into other tick-borne diseases as contributors to her illness.
I always wanted to go back to Stanford and tell them what I learned. This past weekend I had the opportunity to do that. Well, kinda…
On September 14-15, I attended Stanford’s first Continuing Medical Education (CME) conference focused on tick-borne diseases.
The conference, “Emerging Research, Diagnosis and Treatment of Lyme Disease and Tick-Borne Illness,” was fully accredited to provide CMEs for physicians and allied health professionals. My husband, a dentist, and I both got credits for attending.
The goal of the conference was to educate clinicians, health care providers and students on the latest research in Lyme and other tick-borne illness.
The stated objectives were for participants, at the conclusion of the conference, be able to:
- Review microbial infections transmitted through tick bites
- Incorporate diagnostic evaluation strategies for patients following tick bites
- Determine the appropriate management and therapeutic approach for patients following tick bite
- Incorporate appropriate therapeutic approaches for patients that test positive for Borrelia burgdorferi infection on two-tier testing
Multiple presenters covered each of these topics. But, my take-away is that there is currently no simple accurate method for proper diagnosis of TBDs. Nor is there standardized treatment for patients with long-term illness from Lyme disease. In a nutshell, it’s complicated.
Top notch presenters
The program included researchers with backgrounds in allergy, immunology, rheumatology, complementary medicine, family medicine, community health, infectious disease, global health, internal medicine, pathology & laboratory medicine.
The presenters, listed in alphabetical order:
John Aucott, MD
Adrian Baranchuk, MD
Nicole Baumgarth, DVM, PhD
John Branda, MD
Charles Chiu, MD,PhD
Mark Davis, PhD
Ronald Davis, PhD
John S. Dumler, MD
Liz Horn, PhD, MBI
Christine Jacobs-Wagner, PhD
Purvesh Khatri, PhD
Anne Kjemtrup, DVM, MPVM, PhD
Richard Marconi, PhD
Lise Nigrovic, MD, MPH
Sue Pritt, MD
Wei-Gang Qiu, PhD
William Robinson, MD, PhD
Daniel Salkeld, PhD
Allen Steere, MD
Michal Caspi Tal, PhD
Ying Zhang, MD, PhD
Nevena Zubcevik, DO
Turning a new leaf
I’m entering my fourth year of attending conferences on Lyme and tick-borne diseases, and I gotta say, this one felt different. How encouraging to see Stanford recognize the complexity of these illnesses!
I found it especially refreshing to hear researchers acknowledge the tick-borne diseases that are unique to California. Often, I feel like I’m the only person pointing out that “yes, we actually do have Lyme in California.”
Another thing that felt different was the equal representation between researchers, clinicians and patients in the audience. After every group of speakers, members of the audience could directly question the researchers. I found their answers to be open and honest—many of them saying “we don’t know,” or “that’s a good question” or “we are currently looking into that.”
One presenter brought up the use of single-dose doxy as a prophylaxis for Lyme disease. I questioned her reasoning and will write about my objections to that in the future. But other than that, I found the rest of the presentations very much based in science.
I had the opportunity to speak privately with a few researchers and tell my daughter’s story. So, for me the weekend served two purposes—filling my head with science and making peace with some bad memories.
I could probably write 10 separate blogs on the things I learned at this conference. For now, I’ll leave you with a collection of my tweets as well as a bit of hope that things appear to be changing.
LYME SCI is written by Lonnie Marcum, a physical therapist and mother of a daughter with Lyme. Follow her on Twitter: @ Email her at: firstname.lastname@example.org .