By guest blogger Dr. Mark Su
Christine has courageously shared her journey and struggles with Lyme disease. In response, I was moved to share my reciprocal journey and struggles in becoming a physician who evaluates and treats Lyme disease, which I believe sheds some light on the challenges that patients face in being diagnosed or treated for Lyme.
I vaguely remember a couple of patients during my residency years at Tufts University in Boston where Lyme disease was a topic of consideration for their symptoms. It simply wasn’t something we either encountered or considered, for a variety of possible reasons. We were taught the textbook information on Lyme disease, but that was the extent of it.
When I started working in Boston’s North Shore in 2003, my awareness of this illness first took root. Sure, I saw folks with the classic presentation of fever, headache, neck stiffness, muscle aches, and a large red rash or sometimes a “bullseye” not uncommonly following a known tick bite. At the time, I treated them accordingly as I was taught with 2-3 weeks of doxycycline. But I also met patients who reported persistent symptoms that would come and go to various degrees over time, even great lengths of time. These patients commonly had a strong overlap in symptoms with others who carried a diagnosis of fibromyalgia or chronic fatigue syndrome. Often times, we wondered together whether they were being recurrently infected by repeated tick bites? At other times, we would pursue testing for other diagnoses, almost universally to no avail.
Over time, I met more and more patients who would report receiving symptom benefit for their chronic symptoms whenever they were on antibiotics for other reasons; or that they historically had received antibiotics periodically for these “flares” from another physician (or even physician friends, off the record), though an explanation for why the medications seemed to work eluded the prescriber. Listening closely to their stories and recognizing them to be legitimate symptoms, I concluded that they deserved to be treated with antibiotics, even if I couldn’t fully make sense of it. It wasn’t what I was trained to do. It wasn’t the standard of care. But it was the humane thing to do. And to me, the right thing to do.
I continued to see patients who generally fit this type of profile over the years. Symptoms would somewhat vary, but the number of these similar experiences mounted, and they were generally similar stories. In some cases, I was able to create some model of rationale for myself and a given patient, but for the large part, I still couldn’t fully explain this phenomena. I wanted to learn more about persistent Lyme disease and the reported varying presentations of even more acute Lyme disease, but I simply didn’t have the time. Nor did I feel I had the energy or mental space to tackle something that I suspected could cause a rather significant deviation in my professional practice patterns and routines. I was very open minded, but I was also scared of what might be behind that door. And the ramifications of what I’d discover – because I knew that if I uncovered something worth pursuing, for the sake of helping patients, I would feel obligated to do the right thing, the humane thing, and search for the truth, as challenging as it might be.
In the latter years at my previously employed position, we as a practice diagnosed and treated folks with Lyme disease more aggressively than most traditional practices. It wasn’t until I started my own practice here in Newburyport in mid 2014, with primary intentions unrelated to Lyme disease (little did I know), that, upon establishing the regular pattern of using the premier specialty lab for Lyme testing, my eyes were truly opened wide more than I could have expected.
I uncovered enough patients with previously undiagnosed Lyme disease that I owed it to myself to seek more education, so I finally went to a specialized conference with ILADS, the International Lyme and Associated Diseases Society. It was there that I was confronted, in a massive way, with the evidence-based literature that not only substantiated bits and pieces of information I had gleaned from various colleagues over the years in one fell swoop of structured presentation. It was also there that a light went on inside of me – my passion was lit. I realized I had a whole new knowledge base and set of tools to help patients who commonly are left to fend for themselves. These patients typically lack diagnosis or treatment options, finding themselves referred to a multitude of other practitioners in hopes of a diagnosis, trying anything to feel better, and to validate their health experiences often with little to no benefit. Since then, after continually diagnosing and treating patients with this frustrating and sometimes debilitating condition, I have continued to ask myself, with what I believe to be a healthy self-analysis or perhaps even self-doubt, “Is this really real? Do this many people really have persistent Lyme disease?” Yes Mark, they do.
Patients often voice frustration to me about the confusion they experience as a result of the conflicting voices within the medical community about this condition. I really do feel for them. As much joy and fulfillment as I may have to validate a patient’s experiences, that they aren’t “crazy” or “just stressed” or “just getting old,” but that indeed they have Lyme disease and that indeed there is hope for treatment and a better quality of life. I do not take any pleasure in contradicting any previous conclusions they experienced from others in the medical community. Because I was there once before. And I know the struggles I faced to remove those blinders, even as an open-minded practicing physician who had my suspicions. When facing potential scrutiny and criticism from opposing voices, and even more so, a disruption in professional routines and comfort zones in the context of an already stressful and undesirable work-life balance, it’s simply easier to maintain the status quo and to just keep moving on. But wow, am I so overjoyed that I opened that door. It’s been more than worth it to help these patients, and there’s a whole new chapter to be written in this journey.
Mark Su, MD is a graduate of Cornell University and Indiana University School of Medicine. He was later the Academic Chief Resident at Tufts University in Boston and received the national Mead-Johnson Award for outstanding scholastic performance in a Family Medicine residency. He has practiced medicine in the north shore of Massachusetts since 2003, opening Personal Care Physicians in 2014. Mark is passionate about basketball, loves his wife, is religious about fitness, is a dutiful father, and is enamored with photography. With four children and his wife in healthcare research, he often feels like he’s barely able to hang on to his own Monkey Bars! Mark defines himself as a patient advocate, a truth seeker standing for justice, and God-honoring.