Kris Newby is an award-winning science technology writer and the senior producer of the Lyme disease documentary Under Our Skin, which premiered at the Tribeca Film Festival. It was a 2010 Oscar semifinalist. Her book Bitten won a 2019 Silver and Nautilus Book Award in journalism and investigative reporting and the top 2020 International Book Award for narrative nonfiction. As a science writer, she strives to understand why this disease is misunderstood and its patients so mistreated. This quest led her to Willy Burgdorfer; the Lyme microbes discovered that he has developed bug-born bioweapons during the cold war and believed that the Lyme epidemic was started by a military experiment gone wrong.
Kris is the Tom Clancy of the Lyme world. Tune in to hear what Willy disclosed to Kris, why she believes COVID long haulers are prioritized, and chronic Lyme warriors are overlooked, and what she has in the works as her next project. This is an episode you don’t want to miss.
To watch the video go HERE.
Mimi: Kris, thank you so much for coming on today. I’m so excited because Bitten was one of my favorite Lyme books I’ve read, and it was really enlightening. And I know you were also involved with Under Your Skin, so I would love to talk about from when you got Lyme, and now all of a sudden, you got involved in the movie and then the book.
Kris: I was a tech writer in Silicon Valley. I would never have imagined that turn that my life would take when my family went to Martha’s Vineyard; I had two young boys in middle school and my husband. We took a sailboat ride on a beautiful day to the Elizabeth Islands on a tiny little island, and I believe that’s where my husband and I were both bitten by ticks. We never saw the tick. Then a week later, we came back to California, and that began a nightmare year in a state that where the medical profession, I think, believes that Lyme is rare, easy to treat, easy to cure.
I call that the year of the lab rat, we got back to California, and my husband and I woke up a week after the trip, and we were sicker than we’d ever been before. That’s where we started a journey that I’m sure a lot of your listeners have been through where you go to the doctor after doctor, and no one can figure out what you want. I’m an engineer by training, so I was super organized about my symptoms; my husband and I both had the same set of symptoms, it’s flu-like symptoms, in the beginning, just achy muscles, meningitis, neck, crushing fatigue. We went to the doctor, and she said, “Well, I think you have a virus; come back in a week if you’re still sick.”
To make a long story short, we spent a year without knowing what was wrong with us; every week, we were sicker than the next. At some point, we both secretly thought we were going to die and leave our kids as orphans. I couldn’t work anymore. My husband was faking it, going to work every day. And at one point, we thought, well, we’re just a month away from having to sell the house because we can’t live in Silicon Valley on one or zero salaries.
"He did not want to see the positive blood or tell me about the positive Lyme test"
- Kris Newby
We had many symptoms that your listeners are very familiar with, headaches, muscle twitches, GI problems, chronic fatigue. It felt like early-onset Alzheimer’s; we couldn’t do simple math, I couldn’t read anymore because I couldn’t remember the word that was four words before.
The doctor sat down with the big folder of 20 tests, and he went through page by page by page and said, “That test was negative. Tropical sprue was negative; AIDS was negative, syphilis was negative.” And then he closed it and said, “That’s all.” I said, “But what about the Lyme test?” He goes, “Oh, oh.” And then he opened it up to the middle and pulled it out. “Oh yeah, that was positive.” So that was the first clue that there was. He did not want to see the positive blood or tell me about the positive Lyme test.
Mimi: Because he didn’t know how to treat it.
Kris: I became friends with that doctor later on when I went to work as a science writer there, and he says, “Well, I’m sorry about that. It would be politically damaging to these two doctors to treat us for chronic Lyme because it’s not supposed to exist according to infectious disease. So they would do what they call in the medical business, lemon drops us, we’re lemon patients. So they booted us out of the system. So after being a year sick, that was just devastating. But it wasn’t politically acceptable to treat chronic Lyme at that time.”
I remember getting into my car, just sobbing all the way home because I had a positive Lyme test, and they said, “It doesn’t matter. It’s a bad test. You probably don’t have it.” The doctor said, “For you and your husband to both have it at the same time would be like winning the lottery.”
Kris: I Googled on a CDC site, and it was like, oh, but if I get a positive first step of the test, they’re automatically supposed to test me for the second part. And so I called him up and said, “Hey, if I’m reading this right, you’re supposed to test the second step of the test.” And they go, “Oh, oh, they were supposed to do that automatically.” This is not true; to test in a lab, you have to have a doctor’s order. So I went back, and I tested positive again. And that’s when they fired us as patients.
Mimi: They did?
Kris: Yeah. They said the exact words, “We don’t have the tools to treat people like you.” So then I went online, and at least I had a positive test, which was Lyme disease. I found the whole community of Lyme patients online for the first time. They were accommodating, and they said, “Hey, you have an excellent Lyme doctor in your town.” So that’s when we both started. We met with her, and she says, “Oh yeah, these are classic Lyme symptoms.” Even though they didn’t match what is in the medical literature and what’s the CDC sit.
Mimi: Right, she knew. Who was it? What doctor was it?
Kris: Dr. Christine Green in Los Altos and Mountain View and San Francisco. I think she came from Brown originally, but she’s an integrative doctor, which is really great. So she went to all the Lyme disease medical conferences and was treated with traditional antibiotics and supplements to help detox along the way. We started on orals, oral antibiotics. Once we started on antibiotics, we had a Herxheimer reaction: you get sort of toxic shock from killing the germs in you. Then we discovered that we had a co-infection of Babesiosis, which Babesia is a malaria-like parasite. It used to be a cattle disease, and then it jumped over to man for some reason, and that’s treated with antimalarials. After the first year, we were back to being fairly functional. Still, it took another three years to different combinations of antibiotics to really get all the pathogens out of our system to a level where our immune system could keep up. So that was our journey.
Mimi: That’s amazing. So, yeah, it’s a long journey. It’s frustrating. It’s very similar to, I think, what most people have gone through. So at that point, as you’re going through that journey, when did you decide to kind of become like a Lyme advocate and help with the movie and then write your own book?
Kris: Well, I started from a pretty naive engineering point of view where, oh, I realize that this problem is more widespread than I thought before, and all we need is facts, and we can fix this problem. So I thought, well, the best way to present this information might be in a documentary. And I’d done short films through my work in marketing in various tech companies, and I thought I’ll do a documentary on Lyme disease. So I started researching it. I recorded a well-known Lyme pediatrician from Connecticut at grand rounds, and I found his message appalling that the tests are bad, Lyme disease is over-diagnosed.
He accused one of my friends whose son had just been diagnosed with Lyme disease after having to drop out of high school; she accused that mother in front of this whole grand rounds of having Munchhausen’s by proxy, where you’re a mother who needs attention, so you poison your child or manifest these imaginary illnesses that your kid has. So at that point, I said, I have to do something. And I transcribed that and shared it with the Lyme community.
And another very talented filmmaker in Marin, California, had started the same process. So, I was a technical researcher writer and a great filmmaker, so we combined our forces in 2004 and started researching what would become Under Our Skin.
Mimi: I love that movie.
Kris: It was the first feature-length sort of investigative documentary. And it was the first film to really show the patient side of the problem. We went all around the country. We interviewed experts on both sides of the debate, the academic medical physicians who say Lyme is no big deal, easy to treat, easy to cure. And then the clinicians, the doctors on the front lines actually trying to fix the mess of all these sick people with no medical research to help guide them, pretty much trial, which is also called clinical judgment.
Andy Abrahams Wilson was the director. I remember the first time we decided to film patients, and we were in Reston, Virginia, which is a hot spot. And we just announced in front of this Lyme conference, “Hey, we’re going to film your Lyme stories, come to this conference room.” And so, by the end of a day and a half, we’d filmed 60 stories. We were in tears. I mean, we said, “Wow, we have a story here that no one has told.” And so 350 hours, the most tragic stories. And I think the film impacted that it told patients who watched it that they’re not alone. It gave them something tangible they could show their relatives, their father-in-law, who’s a doctor who says, “Lyme’s no big deal. It’s all in your head. You’re just lazy.”
Mimi: My question to you, that’s like the big question. And it’s, why has it become so political? Why are they not recognizing it? I mean, after reading your book and I always kind of thought what I thought, but I think after reading your book, I think it kind of validates what I was thinking is like, it’s political, and I feel like they’re guilty and they can’t acknowledge something that they might’ve created. I don’t know if that’s true or not.
Kris: I would say like many things in the world right now, it’s complicated. I started out thinking after the film, oh, it’s just power and money, and this small group of researchers who sort of jumped on the discovery bandwagon in 1982, so they could be labeled a Lyme disease discoverer and get lots of funding and be on every paper. And so a lot of it wants that attention, which means you’ll get grant dollars into your university, and you’ll be able to get published in the best journals. So that was part of it.
At the same time, the US government passed rules that said that you could profit from your scientific discoveries if you’re a researcher. We had a dangerous new outbreak of a disease. All you had to do at that time was identify a surface protein on this bacteria and say, I’m going to make a test kit out of this unique bacteria protein, and then you could patent it. Then you can find a big pharma person who wanted to develop a test or a vaccine, and then you could get royalties every year. Instead of sharing scientific knowledge, which happened before this law was passed, you kept it secret because it was intellectual property, and patents were involved.
They realized you need a test to tell if your vaccine worked, when you had the disease, when you didn’t have the disease, rushed the science, and they developed a bad test. I think we’re stuck with it over 30 years later. And then you have the dynamic in academia where you’d never want to admit you’re wrong. It’s a peer review system, and you don’t want to admit to peers well the science was wrong. In the history of science, science is always wrong; there’s a churning of ideas. Ideas built on top of others. Others are rejected, but we have those original discovers who jumped into the profit realm, they were proved wrong, and now they don’t want to admit they’re wrong.
Mimi: If you think about it common sense, I can understand why they don’t want alternative treatments for cancer because then that puts them out of business for radiation and chemo, whatever. There is no alternative proper treatment for chronic Lyme that is covered by insurance. It’s not like any of these other treatments that are not covered by insurance. Doctors are getting in trouble treating people with long-term antibiotics or any of these other kinds of modalities. So what’s the difference? Why are you going after doctors that are Lyme literate doctors or doctors that are doing like ozone or whatever else when that’s all that’s working? It’s just such a weird position where the insurance companies are not recognizing it, the government is not recognizing, but there’s no solution.
Mimi: I didn’t know if it’s because you found Willy Burgdorfer and found out that he was actually studying it and because the government was involved. They don’t want to admit that they were involved in creating this or letting it out or however it went?
"So we showed up, we thought, well, we'll just interview Willy Burgdorfer. He worked at the NIH for decades. He discovered the disease." - Kris Newby
Kris: My evolution in thinking, because it is a complicated set of dynamics, was greed during the documentary. Rumors were floating around that Lyme was a bioweapon, so those were always there, but there were no leads on that, and no one was willing to talk about that. So we shunted that off to the side. We have insurance companies wanting to deny chronic Lyme because it was one of the most expensive diseases to treat in its long-term. They sided with the academicians who didn’t want to admit chronic Lyme. How can you develop a vaccine that’s scientifically valid if you have a disease that hides out in your body for months to years and then revives again? So they sided with the insurance companies.
It was a nice partnership for them. But in the back of our heads, this is Andy and me, we thought, well, this rumor of bioweapons is interesting. And one of our last interviews with experts, we had really a lot of trouble getting anyone from the CDC or the NIH to go on camera to talk about Lyme disease. It was just, they said, too hot to handle, which is weird because, with every other disease, it’s like if you’re a researcher, especially you say, “Oh, my disease is the worst. Give us funding.” They did the opposite.
We showed up to interview Willy Burgdorfer. He worked at the NIH for decades. He discovered the disease. He’s retired. The government can’t tell him he can’t go on camera. So we visited him in Hamilton, Montana. As we were setting up the cameras about 45 minutes in, there’s a pounding on the door, bang, bang, bang, and a lead researcher from the lab was there. He says, “I’ve been asked to sit on this meeting.” It was sort of shocking, we didn’t know how he knew we had this recording, and he wasn’t invited.
We felt like he would dampen down whatever Willy Burgdorfer was going to say. The director forced him out, but Willy was distraught that he was there. And then we turn off the cameras, and he had this little slight smile, and he says, “I didn’t tell you everything.” he did tell us that the NIH knew the chronic Lyme exists; they knew that it’s more damaging to the developing neurological systems of children. And then he said, “I think we need to restart, redo the research for Lyme disease from the beginning with scientists who don’t know their conclusions before they start.” So all that was pretty shocking. I mean, especially from the discoverer, who’d been honored for discovering it.
By the time we went to, we had won 20 documentary contests or competitions, and then we were on the Oscar shortlist in 2010 for that film. I was burned out because it was five years of work. I got a job as a science writer at Stanford, and I said, “I’m moving on, and I’ll let other people carry the torch.” I’m just so happy I’m healthy again.
About a year later, two things happened. First of all, I ran into a guy at a party; he was ancient and somewhat drunk. At the party, I didn’t know anybody there; it was out of state. And I said, “Oh, what did you do for a living?” And he says, “I work for the company, the CIA dark ops operation.” So he did dirty works during the Cold War era, including nasty stuff in Vietnam. And he told us a bunch of tales that were just completely jaw-dropping. There were a couple of people at the table. And then the last thing he says, “The craziest thing I ever did was I dropped boxes of ticks on the Cuban sugar workers.”
Mimi: And you’re like, Oh my God. You’re like, ding, ding, ding. Okay. That’s like a full circle of every … oh my gosh.
Kris: I know. He had no idea my involvement with ticks or Lyme disease or my interest in it. So I just tried to draw out as many details on what he said. And he mentioned all this; I didn’t know anything about the Cold War. He mentioned the Bay of Pigs, the Kennedy brothers were embarrassed, so there were operations and assassination attempts against Cuba. There was this thing, my project was under operation mongoose, and this tick dropping thing was just one pilot program because they wanted to harm the sugar cane workers. The sugar crop was their number one cash crop in Cuba. They thought, oh, if we economically strain the country, they’ll oust the communist leader, Fidel Castro. So that was the start.
Mimi: Yeah, you’re like, turn the phone on under the table.
Kris: Then the next thing which made me reconsider my decision just to walk away from Lyme disease was that a documentary friend of mine, Tim Gray, had also interviewed Willy Burgdorfer and finally got him to admit that yeah, I think the organism that was discovered around Lyme disease was a biological weapon, and that’s all the details he gave. But with those two pieces of information together, I said, oh gosh, how can I … I’m so well equipped. Nobody else who worked for a university or a newspaper could spend the years that it takes to dig this information out. So I said I have to follow this story lead to the end.
It ended up being the story of a lifetime because it’s just a fascinating character, Willy Burgdorfer; he ended up telling me he worked for the biological weapons program for over a decade. He told me he put plague in fleas, which was his first job coming over from Switzerland, as a weapon. You would infect fleas with plague and then drop them on the enemy. He put deadly yellow fever in mosquitoes. They were thinking, oh, that might be a good weapon in Vietnam. And then he forced fed hard and soft ticks with horrible diseases to see if he could find the right combination for the military’s warfare objectives. In some cases, they wanted a diseased tick to drop on an enemy like Cuba, where you want to harm their economy with an incapacitating disease.
You can see on my website, Krisnewby.com; I have pictures of how he did that. In the beginning, he would take a tick and then take a very thin glass pipette and shove it down the mouth of the tick and then there’d be the liquid disease in there. Then he’d have an infected tick, and then he’d have it feed on a mammal. After a while, the military moved to take the tick and the fleas and the mosquitoes out of the equation; it was more efficient and cheaper just to take the microbes, some of them which ticks can carry, and freeze-dry them into spores, so they sprayed over a battalion-sized area or a city from an airplane or a boat or a buoy or a frogman or on the back of a truck with a sprayer.
Mimi: It’s crazy. You know how you say Lyme, I’ve heard like the deer that swam across the island, whatever. So do you think they didn’t really mean to infect us in the United States, and it just got out? Or do you think they intentionally, how did it get out, how has this actually started? Was it kind of a mistake, or was it intentional?
Kris: I couldn’t determine that with any amount of certainty. All I can say is that Willy repeatedly told me and others that accidents happen. He believed it was an accident. He said, “Sometimes you do experiments, and they go wrong.” That’s what he said. I would say Willy didn’t often lie, but sometimes he would gerrymander the truth for his own interests. Or if you asked him a sensitive question, he would change the subject. Like what was the accident, he would say, “Did you know it was in the Kiwanis club?”
Mimi: Yeah, you told me differently.
Kris: The thing that people don’t realize until you get into Cold War bioweapons history is that the biological weapons program was almost as big as the Manhattan Project for nuclear weapons. And both those programs were competing for congressional dollars. So you had this sort of escalation of the two sides. The biological weapons program tested thousands and thousands of tests. They would start small with people like Willy, who would do feasibility tests. Okay, what germ can we put in a tick and what kind of tick so that we could drop those ticks on the Ukraine and Russia to, along with an anti-crop thing to devastate their economy as part of the Cold War stuff.
They go from that to they would move that to Fort Dietrich in Maryland, and they would do larger pilot studies. Then they would go to Dugway proving grounds in Utah, and they would do a real test. I loved Begich; that was a test that I found in the book. So they were simulating dropping infected fleas on a battalion-sized area. So they took the desert floor and built a big bullseye in the desert floor, and they put guinea pig cages all around it. Then they had a plane spray these infected, not spray, but they had little bomblets, so little bomblets, and Willy helped figure out how to package the fleas so they wouldn’t die in these bomblets. I think the M 33 munition with a hundred or so of these would release the bomb. The little bomblets would explode out, and at a certain altitude, they would explode and rain the ticks on the desert floor.
I think 600,000 fleas were released, and they would collect the guinea pigs. They would see how many fleas they could find on the guinea pigs. There’s all this specialized equipment to do this. And they said that success was totally successful because 167 fleas infected the guinea pigs. And they didn’t even care about the 500 whatever thousand fleas that hopped in the desert. They were uninfected fleas, but they just wanted to see how far they would spread. During that test, also everyone on the airplane which dropped the bomb had flea bites. So in the report that the Dugway people wrote, they said this test was a complete success. We proved that we could drop fleas on a battalion-sized area.
"I tried really hard to get direct evidence. I have a lot of verbal eyewitness evidence. It was a hard process, but I finally got to the point where I felt like I had enough evidence to really open up the possibility, was Willy, the person with the most to lose by admitting this, is it true there really was an accident that happened in the late sixties that caused this horrible set of illness? " - Kris Newby
It was the time where the ends justified the means. But the point I’m trying to make is that there were thousands of these kinds of experiments on the American public, no kind of EPA controls or ethics review for them. So back to the Lyme outbreak, I think the Lyme outbreak was a series of unfortunate events accidents from this completely out of control, military-industrial complex.
Mimi: When you came with all this information, and you’re like, okay, I should make a book, did you ever cross your mind, like wait, maybe I shouldn’t because I’m afraid for my life? I think that would cross my mind, wait, I love my kids, my family; is it worth me risking my life by exposing some of this truth?
Kris: I had my moments, I never felt imminent physical danger, but as I got deeper into interviewing the experts in the dark world of espionage and biological weapons, I was warned to watch your back and told stories. And even my own father, who, during the course of researching this, told me, “Oh yeah. I was a consultant for the CIA.” He was in career Navy. He was a Navy pilot. He goes, “Oh, by the way, I was the first crew to deliver agent orange to Vietnam.”
Mimi: Your own father, and you’re like, oh my gosh.
Kris: Then I’m thinking, oh, this must be karma. I’m trying to repair the sins of the fathers. So I mean, we lived in a neighborhood with lots of CIA people, Valerie Plame, et cetera, my father said, “Kris, this project is not worth risking your life over. Please be really careful.”
I would say I kept it really secret in the first few years. And I had to decide, is there really a story here? Because there has to be a certain level of evidence. So I tried really hard to get direct evidence. I have a lot of verbal eyewitness evidence. It was a hard process, but I finally got to the point where I felt like I had enough evidence to really open up the possibility, was Willy, the person with the most to lose by admitting this, is it true there really was an accident that happened in the late sixties that caused this horrible set of illness? And I was cautious in the book to say what I know, what I don’t know, this is what I think happened, and I’ll let people decide. And hopefully, the evidence will emerge as the government loosens its reigns on these documents.
Mimi: It’s interesting because once our quarantine hit in March, it was very evident to me because I heard of Fort Dietrich; I heard all the things that they were kind of talking about in the news; I’m like, wait, this goes back to Bitten. I kind of felt like I was reliving my story of what’s going on.
I find it so interesting right now, and I think it’s really hurtful for many Lyme patients because they recognize long haulers and don’t recognize chronic Lyme patients. And so it’s very similar. They carry a lot of the same symptoms, and they’re going to go through a lot of the same things that a lot of us are going through, and it’s like, wait, why are they so quick to recognize that when they don’t recognize this? So I don’t know if you had any feedback about that.
Kris: Yeah, I can’t help but notice the parallels between COVID and Lyme disease. You have body bags; with Lyme disease, it’s an invisible disease, and the suffering is invisible and can be easily mistaken as psychosomatic. And I think the big difference in the response is with COVID. And I would say it falls a lot on women, more on women because of this bias about hysterical women conflating chronic symptoms.
The similarities I’ve seen is CDC, first of all, supported a bad test in both diseases. Their testing was flawed, and they were fragmented in disease tracking and had a really narrow disease definition. COVID said, “Oh, you have a cough.” In the beginning, it wasn’t till about May where they were admitting, well maybe there are other things like the taste and smell with COVID, actually the number one diagnostic sign. And with Lyme disease, too, even the CDC website still has a very narrow definition of the disease, which is swollen joints and fatigue, and a lot of those are tough to measure. Especially seeing all the funding going into long haul COVID and not Lyme. And I think it goes back to the original discovers who didn’t want to have a chronic disease because it made it hard to make money on the vaccine or get a vaccine trial through. And so that there’s a continuing drumbeat of that misinformation about what the disease really is.
Mimi: Well, this has been amazing. I really, really appreciate it. I’ve enjoyed talking with you. So thank you so much. Is there anything else coming down the pipe or anything else that we haven’t covered that you’d like to talk about?
Kris: Well, there is a documentary film in the works, and I don’t have any details yet, but they’ve been working on it for about a year. And then, I continue the research because I really would like to know exactly what the accident was in the late sixties. These three freaky tick-borne diseases, which are Lyme arthritis, Babesiosis, and this unidentified Rickettsia bacteria that Willy discovered and covered it up and didn’t talk about it. I go into that in the book, it’s sort of confusing, but the point is there were multiple tick-borne diseases released during that time. And I go through the accidents that I think led to that, the military accidents. And I would just like to wrap that story up and make it more coherent and factual.
Mimi: That’s great. And do you know the name of the documentary you were just referring to?
Kris: I don’t know what the name is yet. It’s being run out of Manhattan, and it’ll be a four-part series on one of the television streamers, I think.
Mimi: That’s great. Well, thank you so much. This has been amazing, and I really appreciate your time.
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Dr. Rawls is a trusted MD whose life was upended by Lyme but could heal himself and use his experience to help others on their journeys battling Lyme. He is the author of Unlocked Lyme and the founder of Vital Plans, a supplement line made of herbs that supports the immune system (made especially for Lyme warriors). Dr. Rawls offers a free online survey to help you get the right supplement protocol and be on track to a healthier life. Go to lyme360.com/DrRawls to learn more about the amazing herbal protocol I have been using.