Doctors need to embrace the ‘power of yet’

I believe in the power of yet. Doctors should, too, especially the one who used my daughter’s “case” as grist for a short-sighted article without her permission.

The power of yet is a concept promoted by Stanford psychologist Carol Dweck as part of her research on the differences between growth and fixed mindsets. It tells us that there is always room to learn and to grow through practice, discovery, and research. There is — or at least there should be — a lot of “yet” involved in medicine, especially when it comes to diagnosing and treating tick bites.

Back in 2008, my daughter and I were apprentice bird banders. We were both bitten by ticks in the woods around Hopewell, New Jersey, despite taking precautions. I was lucky enough to get the classic bull’s eye-rash, suggesting that I had Lyme disease. She pulled two ticks from her abdomen that were not engorged and had been attached for less than eight hours.

We both took antibiotics for four weeks. I got better. She has been sick ever since: mostly bedridden for two years, she lost weight, lost hair, and developed postural orthostatic tachycardia syndrome — an uncomfortable rapid increase in the heart rate when standing up after sitting or reclining. Open sores periodically erupted on her legs and then mysteriously disappeared, which were dismissed as nothing by her primary doctor and two dermatologists.

I stepped away from working as a researcher and news editor to become her caregiver. I put my Ph.D. to work to find the right doctors and treatment protocols, though the well was pretty dry.

Fast forward 10 years to an appointment with Warren R. Heymann, a New Jersey dermatopathologist, to get a better understanding of, or diagnosis for, my daughter’s condition. After he completed his examination, he suggested that she come back for a second visit when she had a fresh sore so he could biopsy it; otherwise, he had nothing to offer.

Before we left his office, I pointed out the long white lines behind my daughter’s knees, lines that look like the stretch marks that women often see during and after pregnancy.

I tried to employ the growth mindset, the power of yet approach. “See these marks?” I asked Heymann, pointing to the white lines — technically called striae — that had appeared years before as angry red streaks. I told him that such lines are commonly seen in people with bartonellosis, a variety of diseases caused by infection with Bartonella, a group of bacteria transmitted by ticks, fleas, and other vectors.

I could tell almost immediately that he dismissed what I was saying.

I didn’t know quite how much he dismissed what I had said until his two-year old essay, “Striae Due to Bartonella is a Stretch” recently landed in my email inbox. My power of yet approach had no effect.

“The story he told sounded like it could be you and your daughter,” a friend wrote. It was. In the article, Heymann recounted our conversation about my daughter, which had occurred just two weeks before he published his opinion piece in “DW Insights and Inquiries,” an online publication of the American Academy of Dermatology. (He didn’t ask permission to use this example. I tried to submit a rebuttal to the American Academy of Dermatology, but its journals seem to accept submissions only from members.)

Heymann found an article published in the journal Parasites and Vectors by Ricardo Maggi, co-director of the Intracellular Pathogens Research Laboratory at North Carolina State University School of Veterinary Medicine, and colleagues that addresses these striae. Heymann dismissed their work. Although he acknowledged that no one knows what causes these marks, he conjectured that they occur “when excessive stretch overwhelms the dermal integrity of the skin, resulting in a wound‐type response with abnormal and/or incomplete repair.” Not exactly a power of yet response.

Maggi works with Ed Breitschwerdt, a doctor of veterinary medicine and the man I call the Bartonella guru. He has been studying Bartonella since the death of his father and, more recently, the death of his mother, both likely from Bartonella infections. Breitschwerdt calls Bartonella a “stealth” pathogen. He and others working to understand tick infections have learned that individuals infected with Bartonella exhibit red striae, now referred to as Bartonella tracks. They don’t know why — yet.

Heymann overlooked the work of Marna Ericson, an assistant professor of dermatology at the University of Minnesota School of Medicine, who is also trying to determine what causes these tracks in people infected with Bartonella. Her research began when her son developed them. (Ericson happens to be the second author on the Maggi paper that Heymann targeted.)

The dermatopathologist invoked Koch’s postulates, four criteria that scientists use to identify agents that cause disease, to dismiss Bartonella as a cause of the stretch marks. “Even if confirmed by other studies, an association does not equate with causation — this was not a fulfillment of Koch’s postulates,” he wrote.

Not so fast. Breitschwerdt, who has written about the limitations of Koch’s postulates, says it is difficult to apply them when “attempting to attribute disease causation to stealth pathogens that can induce chronic, slowly progressive disease manifestations in an animal or human patient.” The postulates also don’t let researchers “readily address environmental, nutritional, genetic and other relevant factors that influence disease causation and do not consider the pathogenic complexities induced by sequential or simultaneous infection with more than one pathogenic microorganism.”

Frustrated by Heymann’s dismissal, I posted a photo of my daughter’s sores (with her permission, of course) to an Internet discussion group I belong to called “MMI: Microbes and Mental Illness.” This 20-year-old closed group, funded and moderated by Robert Bransfield, a New Jersey psychiatrist, has 750 members from 20 countries: psychiatrists and other physicians, nurses, other clinicians, and researchers interested in understanding the association between microbes and mental illnesses.

One of the MMI members, a nurse practitioner who treats a large Amish population in Pennsylvania, suggested that my daughter be tested for Francisella tularensis, a species of bacteria that causes tularemia (also known as rabbit fever), since her sores resembled those she saw in hunters who spend time in the woods. Sure enough, my daughter tested positive for it. And sure enough, tick bites are one way this pathogen can be transmitted.

What I hope readers, especially Warren R. Heymann, take away from this essay is that the power of yet is an inherent concept in the “practice” of medicine. Doctors must be open to new knowledge, absorb it, and synthesize it.

Physicians dismissed Joseph Lister when he came to America to talk about sterile surgeries, though he was right. They dismissed Ignaz Semmelweis when he suggested that physicians change their clothes and wash their hands before delivering babies and he, too, was right.

The fashion today is to dismiss those trying to understand illnesses for which we don’t have answers, like tick-borne infections, as Heymann did. But when he wrote, “it must be acknowledged that the concept of these chronic infections is controversial,” he was on to something. Chronic infections caused by tick bites are controversial only because we don’t completely understand them — yet.

Sue Ferrara, Ph.D., a former researcher and editor for ABC News, is an elected school board member in New Jersey, where she learned about the power of yet. She is writing as a private citizen.