I recently had the pleasure of chatting with Dr. Daniel Cameron, M.D., MPH, Lyme disease expert and epidemiologist, about a groundbreaking Lyme disease and COVID-19 survey that he has been conducting for the past year. As a patient and member of this community, I was fascinated to hear about his discoveries.
What can I learn from those patients who are experiencing Lyme and are worried about COVID?
My interview with Dr. Cameron is for informational or educational purposes only. It does not substitute professional medical advice or consultations with healthcare professionals, nor does it represent the opinions of Project Lyme. Considering the sensitive nature of the topic of COVID, both in the world at large and in our community, we were particularly mindful about sharing and discussing the gathered information without bias or recommendation.
Personally, this discussion and survey come as an illuminating follow-up to a webinar in which Dr. Cameron and I participated last year, called “In for the Long Haul, Lyme & COVID-19.” Hosted by Administrative Director Noah Johnston, Project Lyme held a conversation between Dr. Cameron, Dr. Bill Rawls, Medical Director of Vital Plan, and me, a Project Lyme team member and Lyme & COVID patient. We also facilitated a Q&A with the patient community.
During that webinar, we discussed the challenges facing the Lyme community during the pandemic: including but not limited to the similarities between long-haul patients and how to stay healthy. It was a beneficial conversation then and is now an informative snapshot of where we were as a community at the time. Most notably, to me, is how little information anyone had then. The most helpful analysis that anyone could provide was still preliminary.
As it turned out, Dr. Cameron felt the same way. Accordingly, he embarked on a formal cross-sectional descriptive Survey of the Burden of Lyme disease (BOLD) for individuals with or without a COVID-19 infection or COVID-19 vaccine. Watch this video to learn how Dr. Cameron used advanced methods to gather and process as much data as he could as swiftly and accurately as possible to provide Lyme & COVID patients helpful information in real-time.
I could actually look at that group who had been admitted to the hospital and compare it to Lyme patients.
There is so much more information available now regarding real patient experiences. Dr. Cameron is parsing through the data via patient reporting. His survey covers a variety of topics, including Lyme disease with or without COVID-19 infection, symptom burden with or without COVID-19 vaccine, functional changes, hospitalization, and more. Dr. Cameron will be exploring case studies and relevant sub-topics in detailed blogs on his website. I recommend that you follow them as he proceeds with this project.
If you’re a Lyme patient where you don’t think Lyme is resolved, this kind of research might get people to look a second time at whether Lyme disease is there, whether Lyme disease is unresolved, or did the illness, being sick bring the Lyme disease out?
Patient reporting, data collection, and information study can significantly impact how we all decide how to proceed with our plans of care in the future. The more information we have within our reach, the more empowered we will be.
If you get a new bite and every doctor keeps saying “it’s long COVID,” you want to make sure the doctor uses this database, uses this survey to say, “by the way, I [should] include Lyme disease itself in an evaluation in someone with long COVID.
At this time, over 1,100 patients have participated in Dr. Cameron’s survey. The survey is still open and expected to offer additional insights as more people contribute. If you or someone you know can share your experience, Dr. Cameron will continue to expand his study to empower patients with critical information.