Hi! My name is Presley Taylor. As a passionate advocate for Lyme Disease, I’ll be contributing to Generation Lyme to share insights with patients, families, researchers, and anyone affected by this difficult disease. My goal is to provide clarity and validation based on my personal journey as a patient and my efforts as a research lab intern.
A Little Bit About Me
I was diagnosed with Lyme disease at the age of 14, and am currently a college student studying health and human sciences. This past year has been very transformative as I've made a significant recovery and regained much of my life. If you’re interested in my full story, please check out my biography here.
My Research Journey
A year ago, as I started feeling better, my restored brainpower and energy fueled me to dive deeply into microbiology, immunology, and infectious disease research. During this time, I became even more aware of the challenges Lyme disease sufferers face in their ongoing search for answers—a struggle I know very well. This motivated me to seek not just answers but also ways to make information accessible and straightforward.
So, I began to engage with the research community, ask more questions and connect with PhDs, professors, and doctors all over the world. A pivotal moment was when my mentor, Dr. Madeleine Cunningham, offered me a month-long internship in her lab this past April. The experience was a life-changing event that opened my eyes to perspectives I had previously not considered.
The Gap Between Research and Medical Practice
During my internship, I observed a serious gap between research and its application in medical practice. As someone who has endured chronic illness, I understand the frustration many patients feel. The medical community often dismisses and invalidates Lyme disease despite the ongoing research evidence.
Presley Taylor is a Gen Lyme Meet-Up host, blog contributor, and college student from Southern California.
I was shocked by the volume of Lyme disease research available, contradicting the attitudes of many MDs. This issue seems to stem from the differing training and mindsets of PhDs and MDs. The PhD approach intends to solve a question or a lack of information in the medical field to uncover causes and effects, while MDs focus on established knowledge, often with minimal attention to Lyme disease. This leaves MDs with little time or motivation to explore beyond their training. MDs try to treat problems already solved by PhDs and documented in the literature. In contrast, PhDs work to solve new puzzles. When MDs encounter patients with conditions not fully understood by PhDs, despite ongoing research, like Lyme disease, they may struggle to provide effective treatment, leading to poor outcomes. This highlights the need for better integration between research and clinical practice to address emerging evidence for Lyme Disease.
Addressing the Disconnect
There are thousands of research studies on Lyme disease that aren't recognized or translated effectively into medical practice. This disconnect may be a contributor to the dismissal and controversy surrounding Lyme disease. A PhD microbiologist in my lab made a compelling comparison; while some doctors believe Borrelia bacteria isn’t a chronic infection, she compared it to opportunist and chronic viruses such as herpes or varicella. If the contraction of these viruses can lead to lifetime exposure, then Lyme (as an opportunist bacteria) could behave the same.
The point is extensive research exists, and more is coming. However, because it isn’t receiving the proper recognition from the medical community, it isn’t finding its way to the patients. In future blog posts, I aim to highlight valuable studies to bridge this gap and develop a better pathway and understanding.
Thank you for joining me on this journey to make Lyme disease research more accessible and impactful. Together, we can work towards a better-informed medical community, more research, and improved patient care.
About Presley
Presley Taylor is a Gen Lyme Meet-Up host, blog contributor, and college student from Southern California. She aims to create supportive spaces and present the misunderstood and underrepresented aspects of Lyme disease through personal stories and deep dives into existing research.