The Mason Spirit

Artist and writer David Michael Conner, BA English ’01, MFA Creative Writing ’09, knew something was wrong with him in early 2010. He was suffering from cluster headaches, temporary leg paralysis, double vision, panic attacks, hearing fluctuations, and bouts of fatigue so extreme he couldn’t drag himself out of bed. After years of enduring a battery of tests and struggling to get a concrete diagnosis—all while trying to work a full-time job in spite of his many symptoms—Conner discovered that all of his health issues traced back to an inadequate course of antibiotics he took for Lyme disease at the age of 18. Now Conner is speaking out internationally about Lyme disease and advocating for those who are chronically ill with it.

David Michael Conner

What made you finally decide to write about Lyme disease?

I’ve done freelance entertainment and LGBT-centric writing, primarily for Advocate.com, for many years but I lost my ambition and my ability to focus on writing after I became ill. I was re-diagnosed with Lyme in February of 2015 and about six months after antibiotic treatment, I had my ambition back—along with the ability to think clearly for the first time in years. I pitched interviews with Tori Amos and Sara Bareilles to a Huffington Post editor and was given a HuffPost blog. The blog gives me the opportunity to pitch to various verticals, one of which is HuffPost Healthy Living. So I pitched an article that asked: “Is Lyme disease the new AIDS?”

To those unfamiliar with late-stage Lyme disease, this sounds like an egregious exaggeration, but the parallels—particularly the political ones—are staggering. The article discussed everything I wished I had known about Lyme but never would have imagined could be true.

The reaction to your Huffington Post article was impressive. Were you prepared for such a reception?

Not at all. I knew from my writing for The Advocate that personal essays can really make a human connection—some of my Facebook friends are readers with whom I’ve become friends—and I saw that my Tori Amos interview was distributed widely. But I honestly didn’t think there would be much interest in Lyme disease for various reasons. I was wrong.

Within hours of publication, I had emails and calls from Lyme researchers, patients, philanthropists, and others who were entirely supportive. That was surprising. More surprising was the number and intensity of messages from people who are desperate for medical attention, some of them literally disabled, but whose insurance won’t cover antibiotic treatment for their infections.

I’ve become involved, to the extent I can, which is primarily through writing, in Lyme advocacy because there’s so much on the line. As an English major I don’t use the word “literally” casually—and I literally thought I was going to die from around 2011 through 2015. No doctor could tell me what was wrong with me beyond speculating I might be a victim of my own anxiety or possibly an as-yet-unknown disorder, and the verdict was that aside from antidepressants and antiolytics, nothing could help. I thought there was no hope, literally, and that’s the place so many people are in right now.

Do you think the profile of Lyme is rising or is there still much work to do?

It’s rising. Overall frequency of Lyme disease media coverage appears to be increasing; however, the extreme political divide is becoming evident as this happens. For example, the New England Journal of Medicine published a study recently that found that two specific antibiotics administered over 90 days did not effectively treat patients who participated in the study. This study’s limited parameters—only looking at a combination of two antibiotics administered traditionally and for only three months—cannot be interpreted as a definitive study on the effectiveness of prolonged antibiotic treatment. Yet, countless media outlets reported headlines along the lines of “a new study finds that long-term antibiotics don’t work for Lyme disease.” This is a total misinterpretation and irresponsible reporting, and it occurs more often than not.

With between 300,000 and a million new cases of Lyme in the United States each year, and the potential for untreated Lyme to devastate people’s health, the stakes are too high for poorly researched reporting. So there’s still much—very much—to do. Most reporters repurpose information from regulatory authorities without looking at emerging research, and in the case of an emerging, poorly understood epidemic disease like Lyme, this amounts to journalistic malpractice.

The real stories, supported by research, are that the commonly ordered Lyme diagnostic tests fail more often than they work; that Lyme is an epidemic-level disease that can devastate lives; that it often co-occurs with other tick-borne diseases that can go undiagnosed and untreated, and on and on. Most of what we see on the news is advice to be vigilant about ticks and to get tested if you spot Lyme. Unfortunately, there is an urgent need for investigative media coverage about Lyme modeled after HIV/AIDS coverage that came belatedly in the 1980s. As with HIV/AIDS, it appears that a rapidly increasing number of celebrities such as Avril Lavigne contracting Lyme and going through the same diagnostic and treatment hell as everyone else is going to be an important tipping point in getting the reality of Lyme out into the world.

How are you doing right now?

Thank you for asking. From a healthy person’s perspective, I’m ill—I still can’t get out of bed on some days because of a lack of energy. My skin burns most of the time, sometimes I lose feeling in my feet and legs and more often than not I have the short-term memory of a goldfish. My social life is practically nonexistent as a result of all this. But the treatment has significantly reduced my physical pain, and knowing what is wrong with me has been a godsend.

Lyme (and bartonella, one of my co-infections) affect the brain and central nervous system, and the inflammation can cause severe neuropsychiatric problems. Treating for Lyme has had the effect of treating my depression and anxiety far more than psych medications did, and the life I had given up on is coming back slowly and steadily. All things considered, I am doing amazingly well. I appreciate more than anyone can know that my alma mater is investigating Lyme disease and better diagnostics. Just knowing that makes me feel a little better.