Lyme discoverer Willy Burgdorfer breaks silence on heated controversy

burgdorfer-2007-465-pixel.jpg On February 28, 2007, the UNDER OUR SKIN film crew interviewed Willy Burgdorfer, Ph.D., M.D., and Scientist Emeritus at the National Institutes of Health (NIH), for three hours at his home in Hamilton, Montana. Dr. Burgdorfer is the discoverer and namesake of the spirochete (a type of bacterium) that causes Lyme disease, called Borrelia burgdorferi. He has received numerous awards, including the Robert Koch Gold Medal, the IDSA Bristol Award, the Schaudinn-Hoffman Plaque, and the Walter Reed Medal. He is a coeditor of the book, “Aspects of Lyme Borreliosis,” and has published over 220 research papers. Just as we began filming, there was a pounding on the door, and we found ourselves facing someone who turned out to be a top researcher at the nearby Rocky Mountain Laboratories, a biolevel-4 NIH research facility. Standing on the porch, our uninvited guest said, “I’ve been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can’t talk about.” We were stunned. After all, Dr. Burgdorfer had been retired from the lab since 1986. We were there to talk to a private citizen, about the history of a very public discovery that had put him on the short list for a Nobel Prize. Earlier that year, the NIH had refused our requests to interview any of their Lyme researchers. What was going on? Why would the NIH want to censor information about the fastest growing bug-borne disease in the United States? Fortunately, our iron-willed film director, Andy Abrahams Wilson, turned the NIH handler away, and what followed was an amazingly candid interview about Lyme disease—its dangers and its controversies. Here are highlights from this three-hour interview:
Andy Wilson: Could you describe the “Aha!” moment when you discovered the spirochete that causes Lyme disease? Dr. Burgdorfer: I remember that time quite well. Allen Steere called me in the summer of 1977 and said, “Willy, I would like to discuss with you the methods you are using in dissecting ticks, and [looking] for microbial agents.” I sat with him about two hours that summer and told him over the phone how to dissect ticks. Then about two months later he called again, and I repeated, again, the same thing. And he finally said [in 1981], “Well, I’m willing to send you some serum [samples]. I want you to examine them for me.” But it was not an “Aha” [moment]. It was a “What in the hell? What’s in that smear?” And then my work [on relapsing fever] as a Swiss student came back. [I said to myself], “Willy, these are spirochetes!” The slide showed long slender forms, a little bit curved, and they were only in the mid-part of the tick. Nowhere else. There were so many people who said, “That is impossible Willie. You can’t get spirochetes out of hard-bodied ticks.” [But from my work on] relapsing fever ticks from Africa, I knew what a spirochete looked like. The Belgian Congo and Kenya are hotspots for relapsing fever. Even Livingston [the African explorer and Scottish missionary] was exposed, and he called it “tick fever.” Andy Wilson: And what did they call this spirochete? Dr. Burgdorfer: I discovered the agent producing Lyme disease, so they called it Borrelia burgdorferi, after my name, Willy Burgdorfer. The initial findings were published right away in Science magazine. And even today, [this discovery] is considered a breakthrough in spirochetal research. There are many laboratories that are using our techniques, applying them to syphilis, because of similarities. Andy Wilson: What are the similarities between Borrelia burgdorferi and syphilis? Dr. Burgdorfer: The similarities that I know of are associated with the infection of the brain, the nervous system. The syphilis spirochete, Treponema pallidum has an affinity for nerve tissues. The Borrelia burgdorferi spirochete very likely has that too. Children are especially sensitive to Borrelia burgdorferi. The Lyme disease spirochete is far more virulent than syphilis. We don’t know the end yet. And [we] can’t even make a [blood] smear with Borrelia burgdorferi and see the organism. It’s there. But you don’t see it. You cannot find this spirochete. Why not? After all, I have a sick person here. He is trembling all over. His synovial fluid is full of spirochetes. But when it comes to blood, it’s not there. So there is something associated with this organism that makes it different. Andy Wilson: Why is Borrelia burgdorferi so hard to find in the body and culture outside the body? Dr. Burgdorfer: Borrelia burgdorferi in the tissues of a patient is extremely difficult to demonstrate, because, first of all, you don’t like somebody to take samples out of your brain [to look] for spirochetes. The same with other tissues. Every system in your body can be infected with spirochete. But to prove that is extremely difficult. It demands surgical work, which is very expensive Andy Wilson: Are you a believer in the idea of persistent Lyme infections? Dr. Burgdorfer: I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients. Andy Wilson: How do you feel about the controversy in the Lyme world? Dr. Burgdorfer: The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.” Andy Wilson: What about the Lyme vaccine? Dr. Burgdorfer: The [first generation] vaccine was not specific enough and not strong enough. So what is needed is additional work on a vaccine. What we have right now is a good example of work that goes to industry [too soon], and industry says, “Okay fine, get it out. “ And somebody says, well it’s too early. And it’s already on the market … and you see that every day …You see that this company is falling down, and these guys are realizing that the vaccine work is full of holes and never should have come out. A lot of people are going to pay for that. They’re going to get sick with Lyme as a result of the vaccination. Then you’re in trouble. Andy Wilson: What do you think about the relationship between Lyme and neurodegenerative disease like Alzheimer’s and Parkinson’s disease? Dr. Burgdorfer: Right now they are building a research center at Columbia University, to study this possibility, because many physicians believe that neurologic manifestations, regardless [of] what type, are typical for Lyme disease. Andy Wilson: What do you most regret about what has happened, in the aftermath of your discovery? Dr. Burgdorfer: I most regret that the technology used to diagnose and to even treat Lyme disease wasn’t worked all the way through. It [was based on] only a few results, then published. And later on, people [wanted] to take them back. I think Borrelia burgdorferi is too serious an [infectious] agent to play with, and with many laboratories, the severity of the disease is overlooked. Andy Wilson: What’s the next stage of research? Dr. Burgdorfer: Neurologic manifestations have to be the next stage of research. Also [Borrelia burgdorferi’s] antigenicity. Ecologically, the diversification of Borrelia is tremendous. Because of the spirochete’s ability to change—to change its physiology, to change its “antigenic” structure for instance—a spirochete may be capable of producing disease or not. And one piece of work that needs to be done, that has lately been neglected, is development of the spirochete—whether it transfers [genes via] fission, or whether individual spirochetes have the ability to break into spheres or particles. We don’t know yet how they do it but they do. They go into the lymphocytes, they go into every tissue. Just because we have not seen [them], does not mean that they are not there. Once the immune response is down, are [they] capable of re-entering the bloodstream and producing disease? Andy Wilson: Do you have Lyme? Dr. Burgdorfer: No. I don’t. But I say that cautiously. Because I have been working with Lyme disease ever since 1981. _______ Soon after we turned-off the camera and began packing up our gear, Dr. Burgdorfer told us with a wry smile, “I didn’t tell you everything.”