Why Are We At Odds Over Lyme Disease? Exploring the Impact and Controversy - Episode 10
Research Challenges in Lyme Disease
Peter L. Salgo, MD: First of all, people with good will are attacking this all the time; we’re looking at this. Second, there are outliers on both sides. People who say, “This isn’t Lyme disease, it can’t be, you’re not sick,” and that you’re crazy, or others will say—and I’m not pointing to you, I’m just saying it’s the other side—“Look at this, Lyme disease can do anything. Therefore, since you’re in an endemic area, you have this, and Lyme can do this—wow—you’ve got Lyme disease.” There has got to be a middle course, right? And because there is no real consensus—I’m going to give you that there is no good testing, that we would rather have a better test—what is the impact on patients who hear this? This is medical noise. What do patients think when they hear all of this?
Patricia V. Smith: I can tell you that patients are very frustrated, and many of them have had Lyme disease for decades—and despite what some people’s opinions may be, it started out as Lyme disease. The patients see the research out there that there are things now called persisters, which just don’t appear in Lyme, but also appear in other diseases. But does the establishment want to recognize these studies that are being done at places like John Hopkins and Northeastern University by great researchers? They are doing it in laboratory settings, and the plan is to go on with animal and human studies. They are looking at other types of antibiotics, combinations of antibiotics, and whether or not pulsing doses might help. And yet, no one wants to acknowledge that perhaps these people really do have Lyme disease and they say to themselves, “Well, I’m looking at this. Maybe I’m one of these people.”
Leonard Sigal, MD: What do you mean by no one?
Peter L. Salgo, MD: I was just going to address it, which is that you said 2 things that are very provocative. One is the establishment—whatever that “them” might be—and that nobody wants to hear it. Who’s nobody?
Patricia V. Smith: Well, I’ll be honest. After 33 years, I can say if it wasn’t for the International Lyme and Associated Diseases Society, most of the patients that I have seen across the country—children who have Lyme disease, and their parents—they would not have anyone to turn to, to try to help them figure out just exactly what they do have. And contrary to some opinions, these doctors do not always diagnose Lyme. It’s just that people go to them because they have signs and symptoms. Lyme disease appears to certainly be in the mix, and they may have a history of that. Now, just because they get 3 weeks of doxycycline, I certainly think that the literature has shown that that is not necessarily a situation where that will be clear.
Leonard Sigal, MD: You’ll forgive me, but define no one: you haven’t defined the establishment.
Peter L. Salgo, MD: I’m trying to understand, because the implication in your statement is that there was some vast conspiracy to ignore Lyme disease. Is that what you really think?
Patricia V. Smith: Yes, I absolutely do, and I am not a conspiracy theorist. I have lived with it. I had 2 daughters diagnosed with it in the ´90s. One of my daughters was out of school 4 full years and 2 partial years. I would not have believed what my daughter went through, or what other patients went through, perhaps if I did not live with it.
Leonard Sigal, MD: What is the conspiracy? I want to preface my question by saying that there have been many, many accusations against many, many academic clinicians and others, that there is some sort of a conspiracy. So, you’re the perfect person. I’m not being facetious. You’re the perfect person to explain to us and to the people over there what this conspiracy is, and who’s behind it.
Peter L. Salgo, MD: And why?
Patricia V. Smith: Well, I certainly don’t know who’s behind it. I wish I did know. I do know that the government and certain medical societies take a very strong opinion. When I saw this happen, it was in the late ´80s approaching into the ´90s, and Lyme disease at that time was basically considered to be an arthritic disease. And there were a lot of rheumatologists involved. Quite frankly, there was a lot of money for that research, and so, there’s thinking out there—and a lot of patients feel this way, and some researchers, clinicians, and others—that perhaps what happened was, because that occurred, that changed the course of the disease: not just changed it physically, but into a disease that now we see there are a lot of neurologic implications. The fact that then these people, quite frankly, wanted their money. And so, perhaps it was a case of vested interest.
Peter L. Salgo, MD: But isn’t that money spent on Lyme research?
Patricia V. Smith: Not necessarily.
Leonard Sigal, MD: I beg to differ with you. NIH funds that are designated for research in sarcoidosis have to be used in research on sarcoidosis. If they’re not, then the investigator, first of all, will never get another grant and, second of all, is in deep trouble, because there’s malfeasance. Monies that were given by the NIH and other organizations to do research on Lyme disease were, first of all, never enough, I can assure you, and, second of all, never went into the pocket of any researcher, because those allegations have been made. Those monies went to pay technicians, they went to buy test tubes, and they went to pay for animal husbandry. That money was always properly spent. First, there’s an undercurrent to many of these conversations that, somehow, there’s this nefarious self-interest amongst people who are getting funds for research. That’s really not true. These are scientists who are trying to do their best. Now, there are other people who believe in a very different approach to Lyme disease or believe many different things about Lyme disease. They are welcome to approach the NIH to get funds for their research as well. They are certainly welcome to submit those papers to the top tier journals. If all these are done properly—the paper is written properly, if the grant is written properly—they’ll be taken into consideration. You can’t assume that the NIH is in on this vast conspiracy.
Patricia V. Smith: In 2012, there were hearings in Congress in the House Foreign Affairs Committee. I testified there, and some researchers testified. And a researcher who testified, a prominent researcher in the field of Lyme disease and animal work, said that in the NIH with the grant process, there were serious issues with how that process was carried out. Because, at any time, if someone wanted to do a study and said they were looking at chronic Lyme, those grants were just not considered. Apparently, those who sat in peer review didn’t really want to look at chronic Lyme because they had another bias. So, what happened was that the same kinds of studies were funded year after year after year instead of the kinds of research that really needed to be done. For example, research on new cutting-edge testing. We’re driving the horse and buggy in the testing area when we should be flying out to Saturn with the testing area. We have none of that, and none of that was done.
Peter L. Salgo, MD: I’m sure Saturn was a random choice.
Patricia V. Smith: Just one more thing.
Peter L. Salgo, MD: You’ve got about 30 more seconds, because we have to move on.
Patricia V. Smith: There were 4 treatment trials that were funded by the NIH. The conclusions on those trials were vastly broad-brushed, and I believe the doctors will probably address that issue. That was so detrimental to patients, because it said that antibiotics do not help, long-term, with Lyme disease patients. They could not make that conclusion based on that study.