Birmingham Steere Talk
Dr. Alan Steere gave a lecture on Lyme disease at the University of Alabama at Birmingham on January 26, 2000. The lecture was sponsored by the Rheumatology department and was open to the public. A hundred people were estimated to be in attendance, with physicians making up the majority of the audience.
Seven Lyme disease patients and family members from the Lyme Disease Support Group of Alabama attended this lecture. We wore green names tags stating who we were, where we were from, and how long we had Lyme disease to add a more human face to the lecture. The organizers of the lecture also let us give out brochures containing general information about Lyme disease in Alabama.
We were aware of the controversy surrounding Dr. Steere, and had all been affected by misdiagnosis or undertreatment of Lyme disease. However, we decided not to protest because of two reasons, the first being that no one would understand why we were protesting, and the second was that we wanted to hear what he had to say, since many other groups around the country haven't been able to.
Dr. Steere opened the lecture with some misleading graphics that made it seem like Lyme disease only occurs in the Northeast. He downplayed the risk in the South, and commented that the Lyme disease here was more treatable than the strain in the Northeast (which caused some amusement among the patients). However, he did mention that some patients, especially those who have late-stage lyme, may be harder to treat. One important thing is that he went over the symptoms of Lyme and other tick borne diseases, so possibly the doctors in the audience will consider them the next time the see a patient with those symptoms.
They clearly ignored the patients at the question and answer period, but I finally stood up for a while and they allowed me to ask the final question. I asked, "According to the CDC and FDA, surveillance criteria should not be used for a clinical diagnosis. Here in Alabama, we have had people with tick bites, bulls eye rashes, and symptoms, who could not get treatment unless they met CDC criteria. Dr. Steere, would you treat a patient if they presented to you with these symptoms?" He answered "Yes, I would treat anyone who I felt had Lyme disease." He also stressed that a doctor should not wait for the test results, but should treat immediately, as it is better to treat Lyme disease while it is in its early stages. This is not the only question I wanted to ask, but it was the most useful to future Lyme patients here given the many doctors in the audience.
After the lecture, Jim and I went down and actually got to briefly talk to Dr. Steere. We told him that we both had Lyme disease and had had a lot of trouble getting diagnosed here. We thanked him for coming and raising awareness (Trust me, in Alabama we still have doctors who don't know what it is or even that it is here and many were present!). I then let Jim talk, since we didn't have a lot of time. Jim asked him what he thought about the controversy and conflicting research on treatment length. Steere responded that he didn't believe that there was any research (except on the Internet) supporting long term antibiotic treatment.
Even though we didn't necessarily agree with what Dr. Steere had to say, his visit was a decent start to raise awareness about Lyme disease in Alabama. We need to get doctors testing and treating patients for it first, and then we will work on informing them about problems with the tests, length of treatment, and co-infections.
Julianne Collins
Lyme Disease Support Group of Alabama