Once we figured out that my son had probably been exposed to lyme disease, my first step was finding a doctor who could confirm my layperson’s diagnosis and help us determine how to treat him. I felt a sense of urgency because I was worried about the 18 month lag in treatment (minimum) and the presence of neurological events that might have been caused by Lyme disease.
However, I had a very difficult time finding physicians who would treat Lyme disease in children. The doctor who had helped me through my own Lyme disease does not treat children. The most famous pediatric Lyme specialist, 80 years old and embroiled in difficult court cases because of his passion for helping sick children and his non-traditional approach (from an IDSA perspective) seemed overly busy. Another top physician, trained by him, was currently just beginning to call back folks who’d asked for appointments last June. And so it went.
Even getting a list of names of potential treating physicians was difficult. Getting names and recommendations (a necessity in my mind, in this field that is hidden away at the edges) was even more difficult. I learned which support groups gathered and kept lists of names and recommendations to provide to desparate parents and patients. I leveraged contacts I’d made attending the International Lyme and Associated Diseases conference. I emailed folks I’d met on the PA mailing list. Eventually I had one doctor in NY, Philly, or Pittsburgh (the cities in which I have family or live) that would treat my son, whom I trusted, and had found positive recommendations about. She had no openings for months, but one was willing to work with my local homeopath/MD, who was willing to read about Lyme disease. I had a few others in the DC area as a backup, but have not contacted them yet.
At this point I pulled personal connections to make things come together. I had attended ILADS, the International Lyme and Associated Diseases conference, because I am starting to do research at work on Lyme Disease. I had a local doctor who has never told me I’m crazy when I report problems with myself or my family and was willing to learn. She had the generosity of spirit to sit down with me and listen to me chatter away about everything I learned at ILADS, and I passed her my slides to keep and look at. She talked with the doctor I’d found. She ordered tests. She agreed to help monitor and watch what we did with my son. But she seemed unsure of herself when it came to treatment (naturally, this is not an area she has years of experience in, which is why I was seeking a Lyme Literate physician). Meanwhile I contacted a doctor in NY who I was hoping to work with on a research project. He agreed to treat my son and made room in his schedule almost right away. I had an appointment, with a lyme specialist, on the 17th of December, an hour north of my parents in a remote small town in the NY area.
I’m writing this post for two reasons. One is to describe my process so that perhaps others who are having trouble finding a doctor will contact me or try it themselves. But the other is to highlight what I consider to be a travesty of medicine. As a parent or a patient, top notch medical care should be available easily and quickly. There should be multiple doctors who are considered experts in this disease and are taking new patients in every major metropolitan region where Lyme disease is common. I live in Pittsburgh, the medical capital of Pennsylvania, and I have to travel 8 or 9 hours by car to see the only physician I could find who was both qualified and available in all of Pennsylvania or NY. I am picky about who I send my son to, it is true, and there may be doctors I did not discover. However, the very fact that I had to play detective to find these doctors is its own problem.
This is a consequence of a disease that is controversial and misunderstood, litigated and political, invisible and at times ostracized. This is the reason that this community has an active political arm as legislation is one route to changing things. This is the reason that research is needed, young intelligent new doctors, microbiologists, epidemiologists, anyone who can contribute must study the disease and work toward change. This is the reason that the actions of each patient who contributes to a support group, helps someone find treatment, gathers resources, is so important. This is why I write today.