Spring has finally sprung across upstate New York, and ticks carrying Lyme Disease are a known threat. But what is the bigger picture regarding the disease's dangers, and the medical establishment's response. This week, grant Reeher talks with author and investigative journalist Mary Beth Pfieffer, who has written a book called "Lyme: The First Epidemic of Climate Change."
Reeher: You were a reporter for many years—an investigative reporter at the Poughkeepsie Journal, and that’s where you first started writing about Lyme disease. And you did that for many years. I’m curious to know, as just an introductory question, what made you decide to go deeper into this and to write an entire book on it?
Pfeiffer: I live in an area of the world—the Hudson Valley—that has among the highest rates of Lyme disease. So, it was something that was certainly on my radar for a very long time. I knew many people who had Lyme disease. I, in fact, had two very short and easily treated cases, but I didn’t view it as an investigative story, which is why it took me a while to get to it, frankly. And when I started looking into it, I found many, many issues to explore—patients who couldn’t get treatment, tests that failed, treatments that didn’t work. So, this is what kind of put me on the path for, frankly, the last six years and eventually led to a book that puts all of that into context, I think, and with the larger context beyond the health issues being the environmental ones, the one that is driving this, mainly climate change.
Reeher: You argue in the book that the medical community has minimized and underestimated the dangers of Lyme disease and, I think, under-treated it as well. Can you explain that a little bit?
Pfeiffer: Since the first treatment guidelines were released in the year 2000—so, virtually for a generation now—Lyme disease has been framed as an illness that is pretty easy to diagnose with our standard, two-tiered test…and relatively straightforward to treat with short courses of antibiotics. Both of those premises are being challenged in the scientific literature, and they have been for some time. Tests fail people at many stages of the disease, most often early, but even when it’s well advanced. And the short-course treatments of antibiotics still leave about 10 to 20 percent of people ill for weeks, months, even sometimes years after infection. So, these are the issues that are really at the heart of Lyme disease that need a lot more attention, and those guidelines really need to be revisited.
Reeher: Let’s talk about the disease itself for a minute. What is the prevalence of the disease at present in the United States?...When in the past did this disease really take hold? And what kind of growth arc has it been on?
Pfeiffer: First and foremost, it’s been on a huge growth arc. Twenty years ago, Lyme disease-toting ticks were found in about half as many American counties as they are today. Today, they’re in 3,000 counties. It’s huge. Primarily, though, the infection, the disease, has been centered in the Northeast and the Midwest of the United States, where rates are very high [and] where you talk to people, and almost everyone has a Lyme disease story. But, it’s also been moving through the South, into California [and] the Pacific Northwest…For the residents there, when it’s early, when it’s new, when it’s emerging, the danger is most acute because doctors don’t recognize it. It has, as I said, been minimized as a disease…so people, doctors in particular, don’t look for it. So, in short, it’s really spreading. It’s a huge epidemic in the Hudson Valley [and] in other areas of New York…People need to be aware that this danger is out there, that ticks are very prevalent.
Reeher: Is there a better test that’s being developed or any effort to develop a better test? You mentioned a lot of false negatives. My understanding, too, is that the test can also yield false positives.
Pfeiffer: Yes, it can yield false positives, but I think those have been greatly exaggerated at the expense of people whose diagnoses are missed. But yes, there are many efforts going on right now to develop new tests. The National Institutes of Health spend millions of dollars to fund research on new tests every year. It’s not enough, I would add, but it makes a statement that the NIH knows there’s a problem with these tests. I expect, probably in the next couple of years, that a new test will come along, but we have been working with the same test since 1994. And we have known it is problematic for many years, and it’s really unconscionable that we are still using this test. It’s time to retire it and move onto something else. But what often happens is that doctors who specialize in treating Lyme disease—very courageous doctors, I would add—do resort to other laboratories with their own diagnostics. These are not accepted, however, by the CDC as confirming Lyme disease, so there’s a real tug of war going on now as to how to diagnose it properly.
Reeher: What do you think the medical community should be doing more generally regarding this, in terms of beyond the test, in terms of research, as well as guidelines for care that it’s not doing? What would be your recommendations?
Pfeiffer: I think physicians, first of all, have to be a little bit more inventive and courageous, if you will, to veer off of these very dogmatic guidelines. Lyme disease—and it even says this on the CDC website—can be a clinical diagnosis. In other words, a doctor can look at a patient, assess the risk of being bitten by a tick, maybe see that person reports being bitten by a tick, and say, “I think you have Lyme disease. I’m going to treat you.” This, generally, doesn’t happen, though. What happens is the physicians follow the existing guidelines, which say you either have to have that Lyme disease rash or you have to have a positive test. The problem with that is many people don’t get the rash, or it’s not recognized, or it’s in a place where it’s not seen. It has many variations, so they get undiagnosed…We also need a lot more research as to how to treat this disease. We need more clinical trials. We rely, basically, on four old, very limited and highly questionable clinical trials, trials that have been questioned in the medical literature as inadequate. So, I guess those are the first two things I would say we need to do.
Reeher: You argue, and it’s right in the title of your book, that there’s a connection between the trajectory of this disease and global warming…Can you talk about that connection?
Pfeiffer: Suburbanization and the way we live generally has really fostered this disease. There are more deer. We have these little forest fragments that we love to live near. We love to see nature. We love to interact with it. We like to see deer. But they are places that aren’t quite in their natural, balanced state. So, there’s too many deer. There’s way too many mice, which play, probably, a bigger role in this epidemic than deer or certainly as big a role. But then beyond that, there is very compelling evidence that a warmer climate has opened up vast new areas of territory for ticks. Ticks are moving, and science can actually chart the movement of ticks up latitudes by the decades—decade after decade, further north…It’s a huge and growing problem. Canada is basically where the United States was a couple of decades ago with this impending epidemic.
Reeher: What would be the single most important piece of advice that you give, then, to people who think that they’ve had some encounter with a tick…and they’re going into talk to their doctor about it?
Pfeiffer: I would first have patients inform themselves before they go to their doctor to see what the problems are and the pitfalls of Lyme disease diagnosis are. And then, I would push the doctor very hard to explore what the implications are of their infection, to push for a diagnosis [and] to not wait until the disease advances before the test turns positive, which is a major failing of the test. We ask people to come back later…We don’t want to let this disease fester. Tell their doctor, “Don’t wait.”