058 Lyme The First Epidemic Of Climate Change With Mary Beth Pfeiffer

It is why when I started to look into Lyme disease in 2012, I had lived in the Hudson Valley for 25 to 30 years by that point, I think 30 years, and I, as an investigative reporter, really wasn't aware of how serious a disease this was and how many people were affected by it. And that's why, you know, here in 2018, I have put up book out there to try and tell the wider world about the impact of this disease.

Congratulations, Lyme Fighter! Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, educate, and encourage you on your Lyme journey to wellness. Together we will fight. Together we Together we will heal. Together we will live. Here are your hosts, Aaron and Sarah Sanchez.

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Lion Voice thanks Invita Medical for the continued support. Please reach them at 1-866-830- 4576. Hello, Lime Voice listeners. Welcome to another episode of Lime Voice, where fighting is a mindset, healing is a choice, and living is the outcome. Today we have a very special guest, Mary Beth Pfeiffer. Mary Beth is an investigative reporter who happened to write a book. Name of the book is The First Epidemic of Climate Change, referring to Lyme disease. Now, as we listen to this episode, I think it's really refreshing because this lady, she's not infected with Lyme. She wrote this book from an outside perspective of your normal Lyme patient. You know, we all are kind of in the same agreement, but it was really refreshing and affirming to hear her opinion. Now, some of the things we talk about in this episode that were really interesting was why there are no tests, why is insurance so hard to deal with, why is there so much opposition to chronic Lyme disease and Lyme disease in general. And to me, it was just so interesting and to hear these, these perspectives and just great topics. These are all questions we've all had, and I just love the way she referenced them. You know, she talks about why all these things work together to create a lot of misunderstanding, misdiagnosis, denial from insurance and doctors. So I really hope you guys enjoy this episode. It was really entertaining. I had a lot of great questions. It's a little bit long, but it's worth it. Every part of this episode is really informative. Now, her book can be bought on Amazon, and again, that's The First Epidemic of Climate Change. Hope you all enjoy this episode and we will talk to you soon.

Mary Beth Pfeiffer, thank you so much for being here on Lime Voice today and welcome, welcome to our podcast episode.

Thank you so much for having me, Sarah. I really admire what you do and what you and Aaron do together.

Thanks. So you're our first investigative journalist, and I'm so excited to talk to you because in, like, in my head, that's what I've wanted to do with Lyme Voice, a mix of investigative journalism, testimonials, and kind of bringing those all together. So I feel like in a way your book is this whole other level, but it's, it's the journey we've been on to compare what we're being told by the medical community and by the government with actually what is going on, and there's a vast difference.

Well, I am honored to be the first investigative reporter on your show. I think part of the reason for that, and in general, is that there aren't many reporters like me who have, you know, done the homework, read the science, interviewed the physicians and the patients and the government officials and what have you. To try and figure this disease out. It is not an easy story to unravel, to get to the bottom of. I have been working on it for about 6 years now. Wow. And I feel like I've gotten a sort of big picture view of it. You know, my book is really sort of the 20,000-foot view of Lyme disease. I attempt to put it in a perspective I attempt to, as you say, investigate what the lapses are in government and medicine that are driving this and that are causing the problems for so many people. And, you know, I think this is— it fills a void in the Lyme literature in terms of books, in terms of investigative reporting, in terms of journalism. We have had at least one other very serious investigative reporting book on Lyme disease, and I have to give a lot of credit to Pam Weintraub for Cure Unknown, which is a terrific book filled with history of Lyme disease, filled with incredible science and interviews with kind of all the main players. The difference between Pam's book and mine is that I did not have chronic Lyme disease. That is not what drove me to write the book. What drove me to write the book was being an investigative reporter, taking a look at the outset in 2012, and discovering there was a heck of a lot more here to look into than I ever imagined. So here we are.

Yeah, well, and that's one of the things I really appreciate about your book is you're really this removed third party, and that goes a long ways because you have a voice that other people don't have.

I think it does give me a great deal of credibility. I came at this with a, you know, it was a blank slate to me. I, I knew about Lyme disease because I live in the Hudson Valley of New York where there are some of the highest rates of Lyme disease in the country. I actually did an analysis of county-specific CDC case data, and 5 of the top 10 counties at that time were in the Hudson Valley of New York. Wow. So it's a huge problem here. Huge. But, but, but that said, I didn't really know the landscape of Lyme disease. I was greatly surprised by what I found. I thought this was a disease that medicine more or less had figured out, that people could be treated, they could be diagnosed, they more or less would get better. So, you know, I was thoroughly unprepared to find what I did find, and that basically was a huge population of people who had late-stage untreated or treated Lyme disease, and they could not get care for their illness. And that's what really kept me going. Why did we— why did we have this situation in America where we supposedly have very good healthcare? Though I certainly question the quality of our healthcare system relative to other countries. But, but nonetheless, was very surprised that people could not get care. They could not get doctors to diagnose them. And ultimately, at the heart of all that, and we can talk more about it, is the fact that we don't have a good test for Lyme disease.

Yeah. Even having a simple, reliable test would be a game changer. Why do you think From all your, all your investigating, why do you think we don't have an accurate test in America? In a country like this, how do we not have a simple test?

I think the answer to that is that this test has been defended by the CDC and the Infectious Diseases Society of America for 20-some-odd years. They keep the, the major players in those two institutions, two very powerful institutions, have time and again defended the flaws in this test. They acknowledge them on the one hand, but they say on the other hand it's a good test. For example, you know, they say the test Works, but not early in the disease. So that's the mistake. You use it early, you're not going to get an accurate diagnosis. And of course, that's when the, the Lyme rash is supposed to diagnose the disease. But we know that, you know, the best case, the best data I could find was the 150,000 cases that the CDC looked at and found that almost 70% of people got the Lyme rash. Okay, so those are the perfect cases, by the way. Those are the ones that the CDC accepts as positive, and we all know how hard it is to meet that threshold, right? So our best case is that, okay, we're missing 3 out of 10 Lyme cases and probably a lot more. But then, you know, as far as the test goes, they continue to excuse away the problems with it. They say that, okay, test later, the test performance and predictability improves later in the disease. This is true. The test does become more accurate later in the disease. But I would say this is not one disease that you want to let fester. You do not want to let the Lyme spirochete disseminate through the body in order to diagnose the disease. It's not smart and it's not safe. So that's another way that they explain away the flaws of the test. But the other thing is, you look at the actual science, the studies that have been done on the test performance, and even later in the disease, you can see it falls down on the job. There was one, um, review that was done by a couple of, um, researchers in Britain, and, um, they found that 13% of neurological Lyme was missed in later on in the disease. Now, you don't want to miss cases like that, and that's a good, good deal of cases. That's a lot of people.

Yeah.

So there's just— they, they have time and again excused away the flaws of the Lyme test. And these flaws have been known for years. There has been science, you know, reports published about it. And nonetheless, here we are, you know, 1994, this test was adopted. Here we are in 2018, and we're still using the same test. It's really time to throw it out. And if you ask me, from my reading, of the scientific literature, there is a consensus that it falls down on the job, that it doesn't work, that there are too many cases that are missed.

Yeah, I think that's an understatement.

Yes.

You know, so what is your take on, um, I have heard from other people in the industry that even when that vaccine went, went to market, that Lyme vaccine went to market, that in order to get it to market, they basically dismissed all the neurological Lyme cases in order to justify it. Are you familiar with that?

I think you're referring to the use of the one protein on the spirochete, OspA, I believe, as sort of the marker. Yeah. By which to activate the vaccine. And no, I'm probably not the best person to discuss the vaccine vaccine and how it worked. But there's little doubt that we need a vaccine for Lyme disease, but we also need a vaccine for other tick-borne diseases. If we have a Lyme-only vaccine, we really open ourselves up to just letting other infections through the door, you know. Babesia is a really serious and growing pathogen carried by ticks. Bartonella is a terrible bacterial infection. There are other things that ticks are carrying: Powassan virus, various other viruses. We still don't know everything that is in the belly of a tick. So what I would like to see happen, and it happened, and there's a lot of research going on in Europe about this now, is I'd like to to see the development of an anti-tick vaccine. A vaccine that you get that when that tick tries to attach to you, it either dies because something is injected into it from the host that kills it off, or at least makes it fall off, detach. Yeah. And that's what they are working pretty seriously on in Europe. There's a 6-country consortium that is, is doing some serious work on it. It's somewhat underfunded, but it is moving forward. I talk about it in the book. And what's also of interest is that research on that— some of the basic research on that project, project started in the U.S. This is 20 or 30 years ago. A professor, a researcher by the name of Steven Weichel did a lot of research on the sensitivities that animals would develop from being bitten over and over and over again by ticks. So that he was sort of tapping into, um, how do we aggravate the tick when the tick bites the host? And he had done some terrific research, but the problem is he could never get subsequent funding. He could never apply this great research that he did to figure out how do we, you know, develop this kind of, of, um, vaccine. And that's another problem that we have, that Lyme has been underfunded for years.

Yeah, I know we hear that over and over. We've interviewed several different researchers and many of who, who started in cancer and have switched over to Lyme, usually because of a family member of some kind. And they say that over and over again, we just cannot get any funding.

Yes. What's really interesting is after the 2016 Olympics in Rio de Janeiro, you'll recall that the Zika virus really sort of came to the fore at that time. And we were hearing just terrible stories of babies born with horribly deformed heads The virus had in fact turned up in mosquitoes in southern Florida. There were some cases of Zika, which is normally a pretty innocuous kind of illness. You get over it very quickly. Most people don't even have any response to it, but we did have some reports in the States as well of, of deformed babies, and this is something that's very serious. It should be taken seriously. But I would make the comparison here between Zika and Lyme. That year, by December of that year, that very same year, the CDC had given out $184 million in grants for Zika research because Congress just, you know, plowed into action and passed a very generous bill to allocate funding for Zika research. Now, that same year that Zika received $184 million from the CDC, Lyme got $3 million from the CDC. And it got probably another $24 million or so from NIH. That's basically what it has gotten for years and years and years. And that's not a lot of money. No. When you, when you think of how many people are infected, and moreover, I mean, that's 360,000 in 2016, and moreover, how many go on to have lingering symptoms of the disease, and that's where the real heart of this problem is, is located. Um, we are talking something on the order of, you know, we generally— medicine has said that 10 to 20% of people suffer what it has dubbed post-Lyme disease treatment syndrome. So that would be something on the order of 36,000 to 72,000 people in that year alone. That's amazing.

So I remember as that was unfolding right there during the Olympics, and I actually went on to the CDC website to see what they were saying about this because I think on the news at that time, like 1,300 people had been infected by the Zika virus. And I'm like, wow, I'm astounded because I'm thinking, why is this getting so much attention, so much funding? It's affected 1,300 people. There's millions suffering with Lyme disease. Why is— why even in the journalistic world, in the media, Why do some things get picked up and others don't?

Well, that goes back, I think, to the way that Lyme disease has long been framed by medicine and how it's, as a result, been viewed or seen by the public. And as you know, the IDSA guidelines pretty clearly say that this is a disease that can be diagnosed with the two-tier test or the rash, and that it can be eradicated. It can be treated with something on the order of 10 to 28 days of usually doxycycline or another frontline antibiotic, and voilà, you're cured. And we know the people in Lyme, the Lyme community, know that it's a lot more tricky than that. It's a lot more serious of a disease than that. And while even the IDSA acknowledges that there is something called post-Lyme disease treatment syndrome, they don't acknowledge that it is caused by ongoing disease, ongoing infection. And to me, it doesn't matter what it's caused by, and— but yet they have minimized it, and they have framed it as easy to diagnose, easy to treat, easy to cure. That the upshot of that is that it's not taken as seriously. It's not considered an urgent problem. Okay, 10 to 20% of people have ongoing symptoms.. But even those have been minimized in the medical literature. The aches and pains of everyday living is how the IDSA guidelines refer to some of the lingering effects of Lyme disease. So there has been this sort of tamp it down mentality, and it's worked its way into the culture. It is why When I started to look into Lyme disease in 2012, I had lived in the Hudson Valley for 25 to 30 years by that point, I think 30 years. And I, as an investigative reporter, really wasn't aware of how serious a disease this was and how many people were affected by it. And that's why, you know, here in 2018, I have put a book out there to try and tell the wider world about the impact of this disease. This is something people who haven't been affected by it really need to take seriously. So that's the message I want to get out there. I think we need a counterpoint to that message that's already there, that Lyme disease is no big deal. It's a pretty big deal when I think of many of the people I have interviewed, many of the mothers, many of the women like yourself, the parents who have, have had to deal with this and have had nowhere to turn. Right.

Yeah. Well, which leads me to my next question. One of the questions I had for you was, who— what is your target audience for this book? Because there's going to be people listening from are from this podcast who are going to go out and read it because they want to be informed. But like you said, this was written for a broader, wider audience. So who is that audience? Is it, is it kind of just paving the way for a higher level of awareness?

Well, you know, I want the Lyme community to read it because the Lyme community is going to see themselves reflected in it, but they're also going to see the perspective on Lyme disease. They're going to see sort of how one thing led to another. And here we are, you know, what, 30, 40 years after the infection, the disease emerged, and we can't get adequate treatment. You're going to see how this happened. It's kind of a historical as well as scientific look into Lyme disease. But it's written also in a very friendly way, if you will. My editor, when I handed in the book finally, I'd been writing it for about a year, and she read it in 6 days and got right back to me and said, I can't believe how well written it is. She was not expecting a science-based book to be as readable as it is. And, and that's really what I was aiming for, to make it interesting, to tell people stories, but also to underscore them or support them with science. This tells the story of where science is today. It tells the story of why That science has not broken through. I spoke to many researchers who told me stories about trying to get published in major journals and being rejected. Researchers who could not get grants because they were told there's no such thing as chronic Lyme, or your point of view is not relevant because that's not what the existing science says. These are some of the injustices that I portray in the book, as well as telling people stories. But to get to your, your, your question, yes, I want the Lyme disease community to read it because they are going to learn a lot about how we got to where we are today, and they're going to be angry when they read this book. But I've also written it in a way that it will make sense to the wider world, to people who care that we had a hand in making this happen because of climate change, that we had a hand in making it happen by the way that we live. You know, the suburban development ideal that has really fed into this epidemic, that, you know, we have these very fragmented forests, cut-up forests, lost species, things like that have really promoted Lyme disease by promoting, you know, vast numbers of mice in the environment, for example, without having any predators to keep that in check. But the environmental side of it, the fact that we— that I could link it very solidly to climate change, I think is a way also to bring in another readership beyond people who have been affected by this disease. And I sure hope I'm right. I sure hope we can bring those people in and introduce them to a threat, a threat to them that they might not be aware of.

That's really interesting. I like that approach.

We'll see if it works. But also to get back to your question about, you know, why Lyme isn't taken as seriously, you know, mosquitoes are— they fly and they buzz around your ears and they somehow— the threat is much more tangible. We all know that, you know, we've been buzzed by mosquitoes, certainly in the Northeast here. And, you know, ticks, meanwhile, it's just not as threatening a a subject, it seems, or an environmental threat. But I mean, ticks, they don't fly. They don't even walk more than maybe a couple of feet up a piece of grass or a piece of brush, and they just sort of wait for some mammal to pass by, and they can sense the mammal's breath, our breath, and then they put their legs out and they just hope that somebody will pick them up when they're passing by. And that doesn't seem like a very, you know, urgent kind of threat to a lot of people. I think that's just some of, you know, part of it. A few years ago, Bill Gates gave a talk about malaria, and he has done incredibly great work in, you know, trying to control that in a lot of tropical countries. And he was telling his audience in this nice air-conditioned room that half a million people die of malaria every year. And he said, "You know what? The people in those countries shouldn't be alone in having to experience this." So with that, he took out a jar and he unscrewed it and a whole bunch of mosquitoes flew out.

Oh my gosh.

Yes. And the room went into an uproar and a photographer jumped up and he started taking pictures and so forth. But that really makes the point. Mosquitoes are scary. And I thought of bringing a jar full of ticks to one of my talks, but I just don't think it'll have the same effect. Yeah. Yeah.

So, well, I like how you say it's a historical and scientific look at Lyme disease. And just from talking to you, I can tell that you have a gentleness in your personality. And I believe that comes out in your writing. And I think it's going to have a really big impact because it is very validating when someone from the outside comes in and says, hey, this is not right. Yes. And gives a voice to a new— gives a voice to a new platform or a new community of people. Because you're right, like, there are people all over the world suffering from a variety of things. But you're right when you said they shouldn't be left to suffer alone.

No, especially— and this is a really significant point, I think— for the most part, the people who are suffering have been treated exactly as the medical guidelines suggest. That— I, I was writing a speech about my book recently, and that line came to me, and I said Wow, that's amazing. And, you know, it's, it's so true that here we have these guidelines. This is how we treat Lyme disease. Doctors follow them exactly as they're supposed to be followed. Patients do what they're supposed to do. They take the, the antibiotics. They believe they're going to get better. And what happens? They don't. And what is medicine doing to try and figure this out? I would say it's doing precious little. Certainly the people who have the power are not doing enough. The CDC is not funding this disease to the degree that it needs to be funded. Neither is the NIH. And the sort of power brokers in Lyme disease the people who wrote the Lyme guidelines, the people who publish with them in the literature, they have refused to accept an emerging body of very serious literature, scientific study that's coming out of places like Tufts, out of Northeastern University, out of Johns Hopkins, out of Tulane, that says, in essence, the frontline antibiotics that we use for Lyme disease may not be working. There have been about 20 papers since 2012 alone that have been on experiments which show the difficulty in killing the Lyme pathogen either in animals or in test tubes. These scientists have done everything short of whacking it with a hammer to try and kill the Lyme pathogen, and each and every time they survived the frontline basic antibiotics that we use every day. And yet this, this science which I've written about in articles for the Huffington Post, can be easily accessed under my name and Huffington Post. The, this science has been dismissed, has been ignored. Just maybe 2 weeks ago, a European journal did a roundup of Lyme disease. You see these things all the time. They're called reviews in which physician researchers go back in the literature and they look at, okay, here's, here's what Lyme disease is, here's the symptoms, here's how you treat it and how long you treat it, and so on. This is the state of the science of Lyme disease. This paper did not mention this new emerging scientific literature on the persistence of the Lyme spirochete in the face of antibiotic onslaught. And to me, that was a glaring oversight. That's, that's probably a generous word. To me, I question how honest that paper was. But this is the kind of thing that has gone on for years. They write papers about similar papers in the States about how do you treat Lyme disease, and they don't discuss the failures of the tests. There have been many, many studies showing that the test fails, and it doesn't just fail because it's a poor test in itself. There have also been studies of, all right, the same test, it's the same sample is analyzed in Lab A and Lab B and Lab C, and you get different results. It's a difficult test to use. It's technically challenging. So there's little doubt we need a better test. I know there's lots of them in development, but you know, this isn't changing fast enough. You know, doctors today still have to rely on that one test that has been approved for diagnosis of Lyme disease, and it's a bad test.

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You can find them online at invita.com. Hi guys, I want to let you know about a book I wrote called Little Bite, Big Trouble, and I'm going to read a review that recently came in. This is from Carolyn, and she says, thank you so much for writing your book. It has become the means by which I have explained Lyme to my 4-year-olds. They asked for it to be read as a bedtime story over and over again and love that the mama birdie does yoga and juicing like their mommy. I can't thank you enough for writing this book. It has helped my family so much. You can find it today at Amazon.com, Little Bite, Big Trouble. It was interesting, I was just talking to someone this week, professional third party, outside third party, and I won't go into specifics because this committee is in the pro— in the process of being formed and stuff. We'll update it in the future, but she was elected to be part of this committee and she was thrilled and They get to the first meeting and the basic premise of the entire meeting is we're going to create— it's in Canada— we're going to create this forum and we're going to talk through these issues from a medical scientific standpoint to come up with a conclusion. Okay. Except the first item on the agenda is that they're not going to talk about chronic Lyme. She was so discouraged because she's like, oh my gosh, I'm on this committee. We're finally moving in the right direction. Well, we'll talk about it, but we can't talk about chronic Lyme, which is the whole reason we're all stuck.

Like, yeah. And this shows the power of the IDSA, of the CDC, of the major medical journals that they have access to and in which they have published. And it is as if These powerhouses of medicine, the IDSA, the CDC, the New England Journal, just have a hold on Lyme disease that is so strong and so powerful that there has been trouble, problems, you know, inability to move forward. Science should evolve, you know, new science comes along and it questions the old science. That's where we are right now, where new science is coming out that says, hey, wait a minute, these antibiotics may not work. But it is having trouble breaking through. And it's because of the power of the people who are associated with, have published on, and have grabbed that megaphone and have it and don't want to give it up. You know, that said, Some things are changing. The fact that this research is being published regularly, that a paper came out actually just a couple of months ago that was authored by a group of physician researchers who are based at New York Medical College. And you may know that many of the, the major traditionalists in Lyme disease are also based at New York Medical College. Okay, the people who wrote the guidelines. Well, this other group of microbiologists wrote a very interesting paper in which they, they said, hey guys, wait a minute, there's something going on here. The Lyme pathogen is being shown to survive in animals and in test tubes. So they, they wrote their own review and they validated what was going on in these universities in Tufts and Northeastern and Tulane and Johns Hopkins. And that was really great to see. And what was really so interesting about it is it came out of the same institution where the traditional Lyme dogma has come from. So, so maybe things are changing. Maybe it's a matter of time before the traditionalists have to start to acknowledge there's something here. The other thing we have going that's very positive now is the Health and Human Services working group that has been assembled, that is meeting regularly in Washington. You can actually see their meetings, they're broadcast live. And this is a group of people on quote-unquote both sides of the Lyme divide who have been impaneled as a result of a bill that was passed in Congress that was really pushed hard by legislators from Lyme areas. And the— this working group is tasked with revisiting how we manage Lyme disease in America. Huh. And they are doing incredibly great research and work on this. They have to document everything in terms of, you know, an assertion that Lyme lingers. Okay, where's the science? And they've, they've been divided up into a number of subcommittees on how do you prevent it, what are the flaws in treatment, what are the flaws in diagnosis. These are really, really big questions. They're major questions. So I have hope because both sides are represented on this group that it will have a difference.

And when was that assembled?

They had their first meeting perhaps, uh, I think it was in June. Oh, okay. It's, it's very new, and I know the people who are working on it are working really hard. They have a lot of work to do because this is like, I don't know, it's like the preeminent debate on Lyme disease. So each side is going to bring its, you know, it's going to marshal all its information and all its facts and it's going to make its case. And at the end of the day, I believe after doing 6 years of research, writing many articles and then writing a book, that the case is there to be made, that we haven't figured this disease out, that many people are suffering quite possibly with a lot of, a lot of data to support them that they have lingering infection. But even if they don't, we need to do the research to find out what it is that's causing these ongoing problems and also what the role is of other tick-borne diseases and making Lyme worse, because we do know that happens.

Yeah. So you said that you can actually see that Health and Human Services, those meetings, do they air them online or on YouTube? They do. Where do we find that?

They're probably still, they're probably on YouTube now. I don't know. I think if you Googled Lyme disease working group, Health and Human Services. Okay. You will get a link to it. Okay. You will get a ton of information on the Health and Human Services government website about this Lyme disease working group, and there will be links, I'm certain, to the, the meetings themselves and to the tapes, the videos of the meetings.

Okay, it's interesting because, um, I've studied the TB epidemic quite a bit. It's not like what we're going through in waiting for the government to catch up is nothing new. People who have been sick and suffering or under oppression have throughout history waited for the government or someone to come to their aid, where, you know, this is nothing new. What's interesting about TB is that it's very similar to Lyme in the fact that there's both acute and chronic cases, and for some people it kills them very quickly, and some people can live for decades suffering with chronic fatigue. And very, very similar to Lyme. And originally, you know, this is affecting generation after generation of families, and everyone was being impacted by it. But it was not-for-profit and religious groups that first started providing treatment and They ended up back in the late 1800s, like 1 out of every 177 Americans was living in a sanatorium because they could, because they needed rest, they needed food, and they needed care. And that was before they even had anything to treat it with. They were simply just providing a safe living environment with healthy foods. And yet, if you look at that If you look at TB, no one ever told those people, you don't, you're not sick. Like, imagine if the government just said, oh, you're not sick. Yeah, you can't walk and you've been sick for a decade, but you don't have TB. Like, it's just preposterous.

Yes. Yes. And the other point about treating TB is that we do treat it with long-term antibiotics. This is something that is done in a variety of illnesses. People with acne sometimes take long-term antibiotics. People with urinary tract infections sometimes take long-term antibiotics. But for some reason, we have drawn this line on Lyme disease. You know, we know that antibiotics are overused in our society. You know, particularly in livestock, which is where most of the antibiotics are used. We know there's something called antibiotic resistance. Antibiotics should not be abused, but I question why this, you know, very firm line has been drawn on Lyme disease. And the reason, again, goes back to the power of the people who have, you know, mustered what I call the myths of Lyme disease, who have disseminated the myths of Lyme disease, that the tests work, that we can treat Lyme disease with short-term antibiotics and we can kill the pathogen. The another myth is that Lyme disease is overdiagnosed, and this is something that doctors were told repeatedly when the disease first emerged. From the 1990s, from 1993 through when I wrote my book about a year ago, I found more than 30 papers in the scientific literature about Lyme disease overdiagnosis. Basically, the false diagnosis, the false positive issue.

Yeah, where did that come from?

Well, it started with one study by Alan Steere in 1993 in which he looked at something like 800 cases, and bottom line, he found a lot of people who were said to have Lyme disease, he said, did not have Lyme disease. And in one group of them, about— he looked at their their samples and their tests, and then he retested. So in— they tested positive in one laboratory, and only half of that group tested positive in his laboratory with the inaccurate test. With the test. So, okay, that's a good question, Sarah. You got to my point quickly. You would think that that would be a clue that the test doesn't work, right? But no, this was used to say Lyme disease is overdiagnosed, which goes back to kind of blaming the way doctors are using it. You're using it too early. You're not— you got to wait till later. You're not using it at the right time or the right place. And so this mantra kind of was put out there, you know, be suspicious of Lyme disease, be suspicious of a positive case. Don't falsely diagnose. Don't falsely treat. Okay. If you falsely treat Lyme disease, you get what, a couple of weeks of antibiotic? This is among the safest drugs there are out there in our whole arsenal of pharmaceuticals. Then I looked for papers on underdiagnosis of cases missed. I found 5, 30 on overdiagnosis, 5 on underdiagnosis. And this is where I talk about how I sort of have put some pieces together in my book that you kind of go, ah, okay, that's why the doctor doesn't want to diagnose me with Lyme disease, right? The doctor is afraid. The doctor's been told there's too many false positives. And the other thing about the test that I didn't mention that you probably know is that the test, being an antibody test, looks for antibodies, then looks for first the antibody load, and then looks for specific markers, specific proteins that show up as in the antibody process. And because it's— antibodies hang out in our bodies for a very long time, potentially forever, it can't tell whether it's an active infection or a past infection. Right. So the cautious doctor has been told to err on the side that this is a false positive. Right. Oh, you had it before. Go home. You're not sick. So this is how these myths have all been sort of woven together to create this situation in which people can't get care, in which they may be positive but they're told they're negative. The tapestry of myths, I suppose, and, you know, I would just say that is how we got to where we are today, that we have many myths that have been raised to the level of kind of a religious dogma. You know, Lyme is overdiagnosed. We know that that we can diagnose it. We know that we can treat it. Another myth of Lyme disease is that it's hard to get, and this relates to the, the 2-dose, 2-pill prophylactic, which is often given to people who have been bitten by ticks but haven't gotten sick yet. And this was based on a study in 2001 in which they looked at people who came in and they said, I have a tick bite, and they saw how many people got infected who weren't treated with, uh, this 500 milligram dose of— I think that's what it is, 2 pills of doxycycline— and how many got sick if they didn't get the, uh, the dose. And they have used this. It's once— it was one study It was a small study. The statistical significance of who got sick and who didn't has been questioned in the scientific literature. But this is another thing that's been raised to the level of dogma. It's hard to get Lyme disease. We can head it off at the pass with this, you know, one-shot dose of doxycycline. And that may not be correct because there are studies in the scientific literature where they tried— they did the same thing with mice to see, you know, which ones got Lyme after being exposed and which ones didn't after they were treated with antibiotics. And they found that it was a lot easier to get Lyme disease. It was a lot more difficult to head it off, which as a consequence, the, the Lyme physicians generally will say that you should get 20 days of doxycycline if you have been bitten by a tick. Whereas this prevailing study says no, one-shot dose and you won't get disease. And that— there's a, there's reason to question that.

How far, how many years out do you think we are from having accurate testing?

That's a good question. It is something I have wanted to to look into for an article, you know, to update my awareness of the various tests that are out there. You know, my sense is that we're not too far, maybe a couple of years, but, you know, I can't really say without having interviewed all the scientists and read the literature. What I did for my book was I read the literature on what's wrong with the picture. So that's, that's the stuff that I know now. And I'm a fastidious researcher. I talk to a lot of people, I read the science, and the science is not easy to get through. I asked the scientists to tell me, what did you mean by that? How do I as a layperson interpret that? And then I write what I write. So I haven't written a story, in short, about where we stand in terms of a new upcoming test. I only know that I hear regularly about new tests in development, and I'm hopeful. Yeah.

So we've talked about testing, talked about obviously needing to change guidelines so physicians are free to prescribe if their patients are still suffering. And we touched on it earlier, but climate change being a factor. And so where does climate change play into all of this as far as the average person? The risks seem very high moving forward for a lot of people to be infected.

Yes, the climate change aspect, I'll just say, was one of the really interesting and enlightening and almost fun aspects of my book to write because I would come across these very interesting papers, you know, done in 1960 that showed ticks could live at something like 800 meters up on a mountain in the Czech Republic. And then somebody comes along 30 years later and wants to figure out where ticks are living now. And lo and behold, they find that the ticks have climbed up this mountain about 1,000 meters. Really interesting stuff. There is historical data on where ticks lived on the coast of Sweden, you know, 20, 30 years ago. They only went to this latitude. Now we see them 200 and 300 miles further north in Sweden. Well, this is being replicated around the world. In Canada, we're seeing the same thing. Canada is basically the new frontier in Lyme disease, and largely it's because of climate change. Because years ago, I mean, for many, many years, migrating birds have carried ticks everywhere, hither and yon. You know, they come up from Brazil, they stop in New York, they go up to Canada and they carry ticks with them. They have been dropping ticks all over the place for eons. Well, all of a sudden these ticks can now survive in places they couldn't before. And Canada is one of those places. New York is one of those places as well. We never had this kind of tick problem when I moved here 35 years ago to the Hudson Valley of New York. So science has made some pretty significant correlations between temperature, humidity as well, and the growth of ticks. There's little doubt that it is pushing the tick population around. We have ticks, the Ixodes tick that carries Lyme disease, in twice as many counties of the continental U.S. now than we did just 20 years ago. That's an amazing change. So we, you know, more or less know, okay, this is related to Lyme disease. We can't say that Lyme disease caused this because the ticks have always been there. Lyme disease certainly has been in the environment. We, we know that there was a guy who, who was shot with an arrow in the Alps 5,000 years ago. He died. He was encased in a glacier. He— his body was found about 20 years ago. They named him Ötzi, and all sorts of studies have been done on him. And what is very interesting about him is he had Lyme disease. Yeah. Wow. 5,000 years ago. And moreover, he was carrying a little satchel with herbs and this special kind of mushroom that is considered to have antibiotic properties. Isn't that amazing?

That's fascinating.

So he might have been taking this for his Lyme disease. But we also know that, that ticks have been encased in amber like 15 million years ago. And that when they were put under an electron microscope, we could see inside the body of the tick these coiled single-celled organisms that were identified as Borrelia-like cells. In other words, we think these are Lyme disease cells. So, yeah, it's been around. We know it's been around. For a long time. Has climate change caused this? No, but it sure has helped it. And then to get back to your question is, how does the average person relate to that and what do they do about it? Yeah. And that's, you know, I mean, climate change is one of the most intractable environmental and moreover political issues of our time. It's about time we recognized that the fossil fuels that we burn and the other ways that we put carbon dioxide into the environment are heating the globe. We're having all sorts of, you know, things popping up that we didn't have before, like these major hurricanes and these wild snowstorms that we have in the Northeast now. These are believed to stem from changes in the climate. We need to do something about that. We need to start acting on the research, on the science that shows climate disease— climate change, rather— is causing these environmental catastrophes: floods, hurricanes, what have you. And that's sort of bigger than my book, but you know, my advice is we got to do something about it. And if I can engender some support for doing something about climate change because it's causing tick-borne disease. It's probably as close or closer to the average person in Lyme areas than any other impact of climate change.

Oh, absolutely. That was my first thought when I read the title of your book. I was like, huh, okay.

Yeah, this, this affects many people, tick-borne disease, in, in very significant ways. And here's something, you know, about climate change that maybe this will make you care more about the politics of Lyme disease and, and, you know, clamor for change.

Mary Beth Pfeiffer, author of The First Epidemic of Climate Change, thank you so much for being here. Your book is available on Amazon for pre-order right now, correct?

It's being shipped now, so it's no longer pre-order. It is ready to go. People are starting to receive it in the mail. Awesome. And I so look forward to getting some feedback from folks. I would love it if people would put reviews up on Amazon. Okay. All right, people, that's our ask. Talk about your personal experiences. Talk about what you got out of this book and why it's important. And then tell your friends to buy it. I'm not in this to get rich. I'm not in this to, to be a bestseller, though I'd love that. I'm in this to change the way we view Lyme disease in America and by extension in the world.

Wow, well said.

So thank you, Sarah. I appreciate it.

Wishing your doctors could communicate and come up with a cohesive plan specific to your medical needs and genetics? At Invita Medical Center, they offer a team-style approach, giving you the opportunity to heal. In addition to a commitment of providing radical love and care for their patients, they are strategically located in sunny Arizona because Arizona offers the best integrative medical laws in the country. Call today to speak with one of their patient care coordinators coordinators. You can find them online at invita.com.

Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters!

Keep it up.

We'll see you next time.

LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. Okay, Lincoln? Okay. The medical information on LionVoice is provided as is without any representations, warranties, expressed or implied.

Okay?

Okay. LionVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional. Healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay?

Okay.

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Got it.