On the Front Lines of Lyme Treatment: A Conversation with Pioneer Kenneth Liegner, MD

Ticktective Podcast Transcript

 

In this conversation between Ticktective™ host Dana Parish and pioneering physician Kenneth Liegner, MD, the discussion focuses on how Dr. Liegner, frustrated and perplexed by the lack of options for persistent/chronic Lyme, came to prescribe disulfiram—a drug intended to treat alcoholics—as an off-label therapeutic for his Lyme patients. He recounts what happened next, and reflects on the impact of his bold experiment, plus they touch on how a Covid infection may impact Lyme patients, causing a resurgence of latent symptoms. They also explore the history of tick-borne diseases and the lack of recognition among clinicians, the government, and insurance companies for these insidious infections that cause chronic suffering for many. Note: This transcribed podcast has been edited for clarity.

Dana Parish: Welcome to the Ticktective Podcast, a program of the Bay Area Lyme Foundation, where our mission is to make Lyme disease easy to diagnose, and simple to cure. I’m your guest host today, Dana Parish. I’m the co-author of the book Chronic, and I’m on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with clinicians, scientists, patients, and other interesting people. We’re a non-profit foundation based in Silicon Valley, and thanks to a generous grant that covers a hundred percent of our overhead, all of your donations go directly to our research and our prevention programs. For more information about Lyme disease, please visit us at bayarealyme.org.

Dana Parish: I’m so thrilled to be guest hosting Ticktective for you today on behalf of Bay Area Lyme Foundation. I’m here with a dear friend and a brilliant Lyme physician, internist, author, Dr. Kenneth Liegner. Dr. Kenneth Liegner is a board-certified internist with additional training in pathology and critical care medicine, practicing in Pawling, New York. He’s the author of an extraordinary documentarian history of Lyme called In the Crucible of Chronic Lyme Disease, Collected Writings and Associated Materials. We’ll talk about that more later. Dr. Liegner is also the first to apply disulfiram in the treatment of Lyme, and he published his experience in the peer-reviewed journal Antibiotics. Thank you so much for being here with me today, Dr. Liegner.

Kenneth Liegner: Thank you, Dana. And thanks also to Bay Area Lyme for inviting me to talk. It’s my pleasure to chat with you.

Dana Parish: You are a pioneer in the field of treating Lyme disease and associated infections, and I just want to jump right in and ask, how did you get into this?

Kenneth Liegner: Pure chance? Trust me, it was not by design.

Dana Parish: Were you seeing patterns in your patients, and you figured it out? And how did you even recognize so early on what a huge problem Lyme disease was?

Kenneth Liegner: After I finished my fellowship, I worked in Washington DC in surgical critical care, but I had actually trained at New York Medical College in Valhalla, Westchester County. And I had in mind to come back to Westchester to start a private practice. The practice opened around 1985 and I started doing general medicine. I did some critical care at the hospitals, but it turned out—unwittingly—I had plumped my practice down into an area that was a burgeoning site of the Lyme epidemic in Westchester County. Any internist was going to be seeing patients with Lyme disease, which was very new back then.

Dana Parish: What were your patients coming in looking like? What were their symptoms?

Kenneth Liegner: Some of them came in with a classic bullseye rash. So, that was helpful. We knew enough about that. But then a lot of them presented in puzzling ways that were very hard to figure out. I had one gentleman who had a swollen gland in the groin, and I wasn’t sure what it was. At first, I thought maybe he had a hernia. Then he had a linear streak, and I thought that maybe he had cellulitis. I treated him with a drug that would be appropriate for cellulitis—one of the first generation cephalosporins. And guess what? The rash went away. The swelling went away, and he seemed fine. Then a couple weeks later, the same damn thing showed up! And I have some sympathy for doctors who failed to make the diagnosis, because it’s not always easy. Even now, it’s not always easy to make the diagnosis. Back then, we knew so much less. Finally, I figured it out after the rash came back. Then I treated him with keflex or something like that. And it worked. But then it bounced right back. It finally dawned on me that it might be Lyme disease, and we tested him for Lyme. Sure enough, it was Lyme. At that point, I think I treated him probably with intravenous ceftriaxone. And, as far as I know, he got completely well.

Dana Parish: That’s great. 

Kenneth Liegner: But you know, these can be challenging (diagnoses). I do have sympathy for my colleagues, especially those who are not immersed in Lyme and tick-borne diseases and only see an occasional patient. ?

Dana Parish: Well, it can show up in so many ways, as you said. And so, it’s very confusing. We should probably say that a lot of people who have Lyme never see—or get—a bullseye rash, or get any rash. Is that True?

Kenneth Liegner: Absolutely. Many people have no history of any rash at all, much less a so-called ‘classic’ rash, which as you know, it’s classic, but it’s not that common. A minority of the rashes have that classic bullseye rash, which of course, if you have it (the rash), it’s like a gift. You know what you have. But I have so many patients that spend a great deal of time in areas that we know are heavily endemic for Lyme, but never give a history of a known rash, or a known tick bite. But when you finally evaluate them and work them up, they have good evidence that Lyme is actually the problem. That makes it difficult, you know?

Dana Parish: It does. Then the testing is a huge problem. You have educated me about testing and also reading your book and learning more about the history of Lyme testing. Can we talk about why that is so complicated and why that’s so difficult to pin down?

Kenneth Liegner: The CDC has set their criteria for testing and what establishes a patient as a case. More recently they’ve gone to some length—which is to their credit—to emphasize that that definition is intended for strictly epidemiologic purposes. That is so that they know that a case is a case, and they can track trends in the same geographic area or in different geographic areas. But for a long time, the CDC made it less clear than it could have been. Many physicians, and of course many insurers, used the failure to satisfy those criteria, which are added very stringently to vitiate (void) a diagnosis of Lyme disease. From the insurer’s point of view, they love that because they were able to deny reimbursement for treatment with oral antibiotics and of especially intravenous antibiotics. And that’s still happening today. 

Dana Parish: How many false positives or rather false negatives are we getting on these tests, would you think?

Kenneth Liegner: A lot of people have emphasized the false positives, but in my experience much more common and much more serious are the false negatives. Because then, people are not able to be diagnosed and then treatment gets delayed. The other big thing which I’ve witnessed many times is the whole issue of frank seronegativity, where the screening test for Lyme is completely negative. What makes that even more tragic is the official recommendation of the CDC is that if the screen test is negative, you don’t go to that second step of the Western blot. And I felt that that was wrong to begin with. So, we’ve always shot gunned it and done both the screen test and the Western blot at the same time. We usually use at least two different labs—two different good labs. You can’t rely on a single lab, even a good lab. But I have many well-documented cases where if people are really sick, they have good histories indicative of Lyme disease and their screening tests—ELISA or Enzyme Linked Immunosorbent Assay—is negative. But then when you do the Western blot, which is actually more specific, the Western blot is sometimes fully diagnostic, both IgG and IgM, proving that you cannot rely on it. The reason they want to do the screening test is because the Western blot is more complicated to do. It’s more costly. So, I guess from a cost-effective point of view, they think, well, let’s do the screening test first, and then if that’s positive or borderline, then we’ll do the Western blot. That does seem to work in HIV, which is where that notion came from, because it’s pretty reliable in HIV, but not with Lyme.

Dana Parish: What labs do you recommend? What labs do you use for your patients?

Kenneth Liegner: For a lot of the more general testing, I use whatever the general reference lab is, which could be Quest, it could be LabCorp, and they’re very good for a lot of things. But when it comes to tick-borne diseases, I pretty much almost always use Stony Brook for the ELISA and the Western blot. And the nice thing about Stony Brook is if you ask them, but only if you ask them, they will tell you all the bands on the blot. Not just the CDC-specific bands. And that can be very, very important because sometimes bands will show up on the IgM which always precedes bands showing up on IgG. And they often are very relevant, very pertinent, highly specific bands.

Dana Parish: They are. I think one thing that’s important for people who are new to this topic to understand is that some of the really important bands are left out of the more standard tests and were never put back in after the LYMErix vaccine was pulled from the market. So, I think before that the Western blots were more inclusive of all these other bands, is my understanding. They made the vaccine, they took out some of those bands, because they wouldn’t react with the vaccine. Am I getting this right?

Kenneth Liegner: They didn’t have standard criteria for the interpretation of the Western blot until the Dearborn meeting in 1995 or 1996. At that time the CDC was very involved in the development of LYMErix, which is the original Lyme vaccine. And that depended on the antigen that they used was the protein’s outer surface protein A, which is a very conserved antigen in Lyme. And when somebody is vaccinated, they’re going to have antibodies against outer surface protein A. There was another vaccine which never made it to market, which I think relied on a different antigen—I’m not totally sure—which is outer surface protein B. And I think the CDC believed at the time that those vaccines were going to be rolled out. They would be successful and that many people would be getting the vaccines. And then they would be showing these antibodies to the 31 and 34 (bands on the test), and that would skew the interpretation because they’d been vaccinated. But as you know, the LYMErix vaccine was withdrawn from the market after a couple of years. I think it was on the market between about 1990, 1999 and maybe 2001. But the bands were never put back into the criteria of the Western blot. A lot of labs won’t even report them, even if they’re there. But Stony Brook will report them. The other lab that I use extensively is iGenex for their disease testing. Also, another lab that I use is County of Sonoma Public Health Lab. I use them for Babesia duncani antibodies as that’s the lab that was originally involved in the discovery of Babesia duncani.

Dana Parish: Can we talk a little bit about that infection and how common it is? Is there a way to tease it out from Lyme and other infections? What’s your experience with Babesia?

Kenneth Liegner: Babesia duncani is a different strain and originally was detected on the West Coast. It used to be called WA1. The first case was isolated in Washington state man and the people who were involved in that work are very dubious that Babesia duncani exists in the east. And for good reason. The ecology that supports Babesia duncani depends on different servants; different deer species that exist only in the West. So, it would be sort of puzzling that it would be found in the East. However myself, and many of my colleagues, have often found that patients who’ve never been west of the Hudson, much less west of the Mississippi, a lot of them were coming up with B. duncani, but then there’s another complicating factor which is really interesting. I don’t know if you know John Scott.

Dana Parish: No.

Kenneth Liegner: He’s a Canadian independent researcher who collaborates with really terrific academicians. He suspected there might be another important Babesia species that can affect humans, partly because some of the patients in Canada, Babesia-like illness were not testing positive for either microti or duncani. He was the first scientist to determine this other strain called B. odocoilei. Have you heard of that?

Dana Parish: No.

Kenneth Liegner: It’s called odocoilei because it’s a Babesia species that is found in the whitetail deer. The Latin name for the whitetail deer is Odocoilei virginianiste. He did some research studying ticks and was able to detect them genetically and was confirmed by researchers that he was collaborating with Babesia odocoilei in deer ticks in Canada. And then he did some testing in some patients who had Babesia-like illness and was able to isolate the DNA of Babesia odocoilei in their blood. And the other thing that’s in his article is that B. odocoilei and Babesia duncani, can serologically cross-react for whatever reason, so that it’s possible that a lot of the patients that are coming up as B. duncani—and of course we didn’t even know about odocoilei until the last year or two—that maybe it’s not duncani, maybe it’s odocoilei  with serologic cross-reactivity.

Dana Parish: What are the symptoms of Babesia? What should people know about considering all of these different infections that ticks and other bugs can transmit?

Kenneth Liegner: There’s a really great article by Dave Persing and Patricia Conrad that discusses Babesiosis. And if you go through the article, which is kind of complicated, but it points out such a wide range of symptoms that patients with Babesiosis can have and they can overlap quite a bit with Lyme disease. It can be really confusing there. There are certain things that are more classic from Babesiosis that can help to heighten your index of suspicion. 

Dana Parish: Can you throw out some symptoms for people who are confused right now about what might be happening with their own symptoms?

Kenneth Liegner: Well, sweats and in particular night sweats, and sometimes drenching night sweats are very suspicious from Babesiosis, although you can get sweats from a lot of different infections too. Then many patients experience a sense of ‘air hunger’ that they’re not getting a satisfying breath. And sometimes patients with a refractory headache end up—when it’s determined that they actually have Babesiosis and when the Babesiosis is treated—the headache often resolves, even though it wasn’t resolving with other kinds of treatments aimed at Lyme for example. But it’s challenging. It’s difficult for everybody, of course, most difficult for the patients, and difficult for the clinicians. Not that I have that much pity for the insurers, but even for the insurers, it’s difficult. Because tests are not always that sensitive. It’s very confusing. And the treatment can be costly. So, it’s a challenge. I’ve likened taking care of patients with tick-borne diseases for the physician, like playing three simultaneous games of chess against three different chess masters as your opponents.

Dana Parish: I agree. I’m not a clinician, but I’m on the patient side of things and I hear these stories 24 hours a day. I talk to people like you who are treating these very, very complicated cases. And I commend you because it is the hardest job in the world. I think it’s the hardest job in medicine doing what you do because you’re flying blind so much, and you have to rule out so many things to figure out what’s going on. It takes a long time, and you spend lots of time with your patients because you have to. It’s not easy.

Kenneth Liegner: It is very challenging. Obviously, as one spends time with the patients and also studying the illnesses—and hopefully reading extensively from the literature, which has grown and mushroomed tremendously since the late eighties and early nineties—you have to try to put that all together. There’s a lot of very basic medicine things, like taking a good careful history, examining the patients, and following them over time. There’s necessarily a degree of empiricism; you’re not always sure what the problem is. Sometimes, one is forced to make a ‘best guess,’ treat with what you think is most appropriate for the most pressing thing and see how the patient responds. If they’re not responding, then maybe you have to rethink. What are you going after? What are you treating? Is that the right diagnosis? It’s not cut and dried at all. There’s a certain amount of trial and error. Obviously, there are—I hate to use the term—guidelines, certain general approaches, but every patient is different. And the treatment really has to be key word ‘individualized’ for the patient. Not every patient tolerates every medication. So, it’s challenging. And the patients are very sick.

Dana Parish: They’re among the sickest as a group collectively and the most disenfranchised. Now we have Long Covid added to the mix, which completely complicates and muddies the waters, because as many of us know, the symptoms overlap many times. In my personal experience, I’ve been talking to patients, and I’ve also been talking to other doctors who treat vector-borne disease, and they’re seeing patients who were in remission from Lyme and other infections get reactivated in the face of Covid. So that adds another wrench into the confusion.

Kenneth Liegner: Right. As if treating tickborne diseases wasn’t complicated enough, then you throw in Covid and Long Covid, which is becoming very common. It’s also multisystem in nature, it also evolves over time. Trying to tease apart what is vector-borne diseases and what is Long Covid is another challenge. I’ll often suggest to people that they consult with a practitioner who has expertise with dealing with Covid and Long Covid.

Dana Parish: And there are not many (of those). I was rereading parts of your book last night and it’s so extraordinary that you put together the collection of documents that you’ve assembled. Latency is something that is really important for people to know, especially with Lyme and vector-borne diseases. For example, I got a bite in July. I got the ‘flu-like illness, and yet I wasn’t really sick until October. I had that initial acute illness resolved. Again, we’re seeing this in Long Covid too, where people feel like they had a really mild or even asymptomatic illness, and then boom! Heart failure, POTS, dizziness, chronic migraines, whatever it is. And that’s what happens a lot. Is that common? I mean, it happened to me, but do you see it as well?

Kenneth Liegner: I think it is common. I remember one of my early cases, many, many years ago as a woman and her husband, they were out on the east end of Long Island. She had a nymphal tick attached to her earlobe. And it wasn’t till at least six months later that she got sick, but then she got really, really sick. The whole idea of latency is well recognized in spirochetal infections, including syphilis. So, it shouldn’t really be a surprise. Then the other thing is we really don’t know what the minimum inoculation of Lyme spirochetes is required to eventually result in illness. So, you might have a brief tick attachment or maybe a small number of spirochetes and it takes a long time for them to multiply enough to cross a threshold where the infection is producing symptoms. And because often tick bites are unnoticed and the rashes don’t occur. I mean we don’t know. Is it a month? Is it six months? People may have been harboring it for even years before it becomes manifest. So, it’s complicated.

Dana Parish: It is. You’re making me think about congenital Lyme and that new paper that Sue Faber and Dr. Charlotte Mao and a bunch of others just published. They’re seeing kids born looking pretty healthy. Then a year later they have swollen knees, but they haven’t been exposed to ticks as far as the parents know. It’s a very complicated, muddy stew.

Kenneth Liegner: Those folks deserve a tremendous amount of credit, especially Sue Faber. Because this whole area is terribly important. And it has been very under-studied. I think because of her work—and also, she’s been very collaborative with people in the government and I think that the government is beginning to come around—this really needs to be studied in a very formal way, using cutting-edge methods and following people epidemiologically in a very careful way. It’s way overdue and very necessary.

Dana Parish: It is way overdue. You see it in front of you. And there’s just not enough data to really go full force with it sometimes. But it’s been documented for a long time, and I’m really amazed by what they’ve done to bring this into the spotlight. The way they work with public health officials has been very commendable. So, talk to me about chronic Lyme and chronicity of Lyme. I don’t know why it’s so controversial. I kind of know the politics now, but it just seems so crazy to me that an infectious disease that is all over the globe, that is so common, that it has wreaked so much havoc, is completely misunderstood, misrepresented. When I say, ‘chronic Lyme,’ it’s like I’ve said the worst, dirtiest word in the world. And there is tons of data to support it. Why is it so controversial to talk about the chronicity of Lyme?

Kenneth Liegner: Well, my own feeling is there’s a lot of corruption involved here. It wasn’t controversial until the rollout of the LYMErix (vaccine).

Dana Parish: What happened?

Kenneth Liegner: If you look back at the publications of many of the academicians in the late ‘80s, early ‘90s they were saying exactly what us clinicians have been saying ever since. That the infection is chronic. It’s in their writings. With the rollout of the Lyme vaccine, Lyme was redefined. And again, the ELISA and Western blot criteria had that very much in mind. In order to have a vaccine, you have to have a criteria for who has it and who doesn’t have it. And the other thing is, it makes it a lot easier to qualify a vaccine if you do not acknowledge the possibility of chronicity. It would make it a lot more complicated to qualify it. The other thing is, you can’t allow the possibility of seronegativity, because then you don’t know who has it or who doesn’t have it.

Dana Parish: Right.

Kenneth Liegner: So, that was the defining moment that changed the definition of Lyme and resulted in what I think was a very destructive polarization. The proof of it is you can’t say someone has chronic Lyme at Point A and then two years later, no chronic Lyme. You can’t acknowledge seronegativity and all of a sudden there’s no such thing as seronegativity. Personally, I think that there was a lot of money on the line with the vaccine. There are a lot of patents there. There are a lot of commercial interests. And I think that corrupted the science. Even now in academia, you basically cannot utter the words ‘chronic Lyme disease’ in academia. You can say ‘Post-Treatment, Lyme Disease Syndrome,’ that’s okay. But you can’t say ‘chronic Lyme.’ And obviously, that’s what it is!

Dana Parish: I agree. I’m not going to mince words about this. We have to call it what it is because the language informs treatment, and it informs the clinician’s understanding. And there are very few clinicians that really understand this. The newer ones have all been taught that this is a fake disease that doesn’t exist. I hear it all the time. If I talk about chronic Lyme on social media, I have people that understand what it is, patients, and some doctors, and some scientists, but a lot of the MDs write to me and say, it’s a fake disease and it has to be something else. I’ve even said to a rheumatologist, ‘How do you explain that I had Lyme carditis?’ I had heart failure from Lyme. I took more antibiotics. I had heart failure for five months. Seeing all kinds of doctors all over New York City. I see a Lyme specialist. He treats me. My heart failure goes away with antibiotics. How do you explain that? He said it was a coincidence. I mean, the dogma! But also, just the lack of common sense. You’re telling me I can take 30 days of antibiotics or 15 days of antibiotics, and if I still have the same symptoms a few days later, it’s something completely different? How does that make any sense?

Kenneth Liegner: Well, there’s really been systematic indoctrination. Actually, it’s even beyond propaganda. It’s indoctrination. And that’s why it’s so hard. Doctors can’t know everything about every field. You just can’t. Medical knowledge is just too vast. So, unless you’re actively involved in taking care of patients and witness this with your own eyes, and also not to fail to mention there are hundreds of articles by excellent scientists around the world documenting in completely unequivocal ways that this infection can survive antibiotic treatment—in animals, in humans—by very credible people. So, it’s just absurd.

Dana Parish: It is.

Kenneth Liegner: When we’re talking about chronic Lyme, a lot of times we’re talking about people who have been treated, but who relapse and are sick in the same way or similar way that they were when they first got the illness. And again, there’s overwhelming data that this is a bonafide thing. We now know the infection, and the mechanisms a lot better and how the borrelia can survive treatment with antibiotics. But what I was saying is, if you’re not involved … and look, most doctors—unless it’s their field—they defer to the authorities, right? I’m not a world-class expert on thyroid disease, you know? So, I would defer to an expert on that. But what happens if the experts are wrong? And their being wrong is not just an honest disagreement, but is influenced by commercial influences.

Dana Parish: I’m seeing the same thing in Covid and Long Covid. I always say it’s the same playbook. It’s really exactly the same. It was predictable that this was going to happen. When Covid first emerged, it really was some version of this. And now there’s 300 studies or more documenting the chronicity of Covid. And there are still people calling it post-viral. The NIH uses language that misinforms. It’s very hard to watch. I was so impressed by your recent feature in this fabulous documentary. It’s been all over the news because they’ve been winning every award at all these film festivals. It’s called The Quiet Epidemic. Can you talk a little bit about your role and some of the information, the case that you talked about? 

Kenneth Liegner: Lindsay Keys and Winslow Crane Murdoch, they deserve a lot of credit. They took on a very difficult project. I don’t know if you know the backstory—they were both ill with Lyme. And they both had a background in film. And I think Lindsay told one of the nurses at the doctor’s office that she would like to do a documentary on Lyme disease, because she was affected herself. And the nurse said, ‘Oh, by the way, we have another young patient who’s also a filmmaker, would you like to be introduced?’ And so, they introduced them and they decided to work together. I have a feeling they had no clue what a challenging project they were taking on. And seven years later, there’s the film, but in the meantime, they suffered themselves from Lyme. Think about it, they’re schlepping all over the country, all over the continent and the world with their film equipment and everything while they’re sick and trying to get better. And what a nice thing that they achieved. They integrated a lot of the science, a lot of the controversy with very human stories that I think affect viewers on an emotional level. That’s not an easy thing to accomplish.

Dana Parish: They did an extraordinary job. And I should mention, Bay Area Lyme was a big supporter and proponent of that film and helped to fund it along with many others, like the Cohen Foundation. I love the two of them, and I think they did a beautiful job. I really loved that you were in it. And you have a very, very famous case. When I was starting to gather materials to write Chronic with Dr. Steven Phillips, one of the cases we kept coming back to was your case with Vicki Logan. I remember reading about it in the New York Times, going through archives when I first got Lyme, and being absolutely blown away by this extraordinary case and the efforts that you went through to help her and to save her. You fought for her. Can we talk a little bit about Vicki?

Kenneth Liegner: Well, Vicki was an extraordinary person. She was actually a pediatric ICU nurse. And a case like that, as a physician, that’s the kind of case you might see once in a career.

Dana Parish: When she first came to see you, what condition was she in? Did she already know at that time that she had tick-borne diseases? Did you know right away? How did this all unfold?

Kenneth Liegner: Oh, no. She was referred to me by another patient around the late ‘80s, maybe ‘88 or ‘89. And she had been suffering—even before she came to me for several years—with what was basically a chronic meningitis of unknown origin. She’d been around the block, seen a lot of excellent physicians, top-notch neurologists on the East Coast. She had a lymphocytic meningitis, meaning that she had elevated white blood cells on the spinal fluid. But nobody was able to determine what her diagnosis was. And it had a lot of different effects on her, including that it affected her gait. So, she would drag her foot. She had what we call a paraparasis that implies spinal cord involvement. She came to me, and I studied her very carefully for a year using all the methods that were available to me. Now, remember this is in the late ‘80s, early ‘90s when even a Western blot was not an easy thing to do.

Dana Parish: Yes.

Kenneth Liegner: They were just beginning to introduce Western blots. So, I studied it for a year. And despite doing every test that I could, I was not able to actually establish a diagnosis in her. But I knew that she had grown up in northern Westchester in a little town called Goldens Bridge, which if you ever go up the 684, you’ll see the signs for Golden Bridge. It’s a lovely community. And she lived in a cottage community near a pond. But, again, she gave no history whatsoever of tick bite at any time or of any rash that would’ve been suspicious for a rash of Lyme disease. After studying her for a year and not being able to establish a diagnosis, she was deteriorating. And I decided that it was justified to treat her purely, empirically for the possibility that she might have Lyme.

Although I didn’t establish a diagnosis of Lyme, I felt I couldn’t rule it out. Also, we’d looked high and low for every other diagnosis. I got multiple consultations by excellent people, rheumatologists, neurologists. Nobody knew what she had. So, I treated her. I brought her into the hospital, Northern Westchester, Mount Kisco. I did a spinal tap before I treated her. She got three weeks of intravenous cefotaxime, which is one of the IV antibiotics frequently used for treating Lyme. And then I repeated her spinal tap after. And actually, the spinal fluid didn’t change. Her condition didn’t change. Then I gave her a couple of months of an oral antibiotic just for good measure, but it didn’t really affect her. At that point, I backed off. I said, you know, if she did have Lyme I gave her the benefit of the doubt, that’s all I can do.

And then about a year later, she contacted me and begged me for another spinal tap. You can imagine how desperate a patient is to beg for a spinal tap. But the difference was that at that time I had begun collaborating with folks from CDC, Fort Collins. At that time, they had provided me with a culture medium that I never had before. Something called BSKII, Barbara Stoner Kelly two medium which I kept in the freezer in little vials. And when I tapped her—this was December of ‘91—I thought of some of the BSK media, and I plunked a couple of cc’s of her spinal fluid into that and capped it and shipped it off to CDC, Fort Collins. A couple weeks later, I got a very excited telephone call from David Dennis at CDC letting me know that spirochetes were growing out of her spinal fluid.

Then those spirochetes turned out to be identified positively as Borrelia burgdorferi, which is Lyme. People don’t know that, so this is despite having gotten treatment that everybody said should have cured her if she had Lyme. Also, the chance that she might have gotten reinfected in the interim is virtually zero. She was housebound in a wheelchair and had no pets. So, I think it’s very unlikely that she was reinfected. But once I knew that she had Lyme—and remember before, I didn’t know—so, once I knew that she had Lyme, she ended up getting treated for 13 weeks—not three weeks. And I used a different regimen. I treated her once a week with high dose cefotaxime. And at the end of 13 weeks, that abnormal spinal fluid that she’d had for like more than five years, completely normalized.

Dana Parish: How were her symptoms?

Kenneth Liegner: They were improved. It wasn’t like night and day, but she definitely improved in objective ways.

Dana Parish: That’s awesome.

Kenneth Liegner: And then I wasn’t sure what to do with her, you know? And what we found with her is that if you stopped treating her, she started deteriorating again. So, it’s a very long story. It’s all well outlined in the chapters of the book that you read because I documented all the correspondence and tests and the battles with insurance and everything. So, when Lindsay and Winslow came and filmed me in my office, we just talked about Lyme a little bit. In 2001, I did a little video interview of her (Vicky) when she was in her hospital room at Northern Westchester Hospital Center. And that was a fairly lengthy video. It was like an hour or so. But, within that, there was this little clip that we chose to highlight. And they included that in their movie. And Vicky, to her credit, said she hoped that what happened to her would benefit others who wind up in the same situation. That same spirit was also very much spontaneously reflected by Julia Bruzzese, who was also a major subject in the movie. 

Dana Parish: Is that why she agreed to participate?

Kenneth Liegner: Yes. She wanted to try to help others and move the conversation forward.

Dana Parish: She’s a wonderful girl. She’s a wonderful girl from a great, dedicated family.

Kenneth Liegner: For sure. So dedicated to her.

Dana Parish: They’re incredible. And they still manage to be fun and funny and spirited. And with all they’ve been through, they always show up. I really love them. So, what happened with Vicky? Was it that the insurance wouldn’t pay for her treatment anymore, and so she just didn’t survive because of that? What, what do you think led to her death?

Kenneth Liegner: Well, it’s quite a complicated story. And her whole story has not really been fully told in the media. There are aspects or sequences that deal with her in The Quiet Epidemic. And also, I don’t know if you know Nonny De La Peña?

Dana Parish: Through you. Yes. 

Kenneth Liegner: Nonny De La Peña is a very experienced, cutting-edge filmmaker and has had a lot of influence in the field of filmmaking. Also, remember that fantastic article on Lyme disease in Newsweek in 1989, it was a cover story.

Dana Parish: I know it by heart.

Kenneth Liegner: The amazing thing about that story in 1989 is that they got it exactly right. 

Dana Parish: People should find that article. I’ve posted it a number of times on Twitter and on Facebook. I have an archived link in a Google doc.

Kenneth Liegner: I have a pdf. I scanned it and I have a pdf.

Dana Parish: That’s probably what I have—your version of it.

Kenneth Liegner: But the reason that I mentioned it, to my surprise, who’s on the byline for that article? Nonny De La Peña. The reason I mentioned it is she got a grant from Kim Cleworth to take a topic and do an in-depth VR virtual reality piece. And she decided to do it on Vicky. And that debuted at the Tribeca Film Festival within the year. Very interesting piece. But because it’s VR you don’t know how wide a distribution it’s going to have, you know?

Dana Parish: Right.

Kenneth Liegner: She told it in depth, but she didn’t tell the whole story. There’s so much more to the story that is actually best outlined in a comprehensible way in the letter that I sent to my then US congressman, Chris Gibson—which was a 42-page letter—it wasn’t all about Vicki. But there are maybe less than a dozen pages that explain exactly what Vicki’s story was and what happened to her.

Dana Parish: What I know about it and what I’ve read about it and talked to you about is one of the most extraordinary stories I’ve ever heard. Let’s talk about treatment. You were a pioneer in discovering disulfiram for the treatment of Lyme disease. How did you come upon that, and how did it go? It’s been a couple years now, so what do you think now?

Kenneth Liegner: Well, I can’t take credit for discovering it for its utility in Lyme. It was the work of Jayakumar Rajadas.

Dana Parish: I said you were the first clinician to pioneer it.

Kenneth Liegner: Well, I was the first clinician to apply it in patients. Jayakumar Rajadas and, and his coworkers at Stanford did some high throughput testing of thousands of compounds and just tested them to see which had activity against the Lyme spirochete. And it turned out that disulfiram was way up there at the top, or near the top, if not at the top, having activity way more than doxycycline/Rocephin. So, that was published in an article in a little bit of an obscure journal, and nobody really paid all that much attention to it. Then at the first Lyme Mind Conference that was held at Mount Sinai sponsored by The Steven & Alexandra Cohen Foundation, they really got some great people together. The keynote speaker for that conference was Kim Lewis, who’s from Northeastern (University).

Towards the end of his talk, he mentioned Rajadas’s work, and that disulfiram had this huge activity. One of my patients had been following Kim Lewis’s work and it (the keynote speech) was later posted on YouTube. This is a patient I’d worked with for quite a few years, very trustworthy. He was kept pretty well on a regimen of amoxicillin, minocycline, and malarone. But if he went off treatment, he would deteriorate. He saw this presentation, and he told me about it. So, I viewed it, and I was already familiar with the paper. I reread it. I’d never used disulfiram because I just had no occasion to use it. It is a drug that has been used mainly for treating alcoholism, which is not my field. I knew that it existed, but I had never used it. I looked it up at the patient’s request. I never would’ve suggested it to the patient. The patient asked if I would let him try it. Now, it’s a drug that’s been used for decades and is generally safe. And although it does have some potential toxicities, I allowed him to try it. And it’s a long, long story. It’s outlined in the articles that were published. There was the first article about the first three patients published in MDPI antibiotics. Then we published another paper a little bit later reporting on our experience with another 60 or 70 patients.

The first 30 patients that we used it on, bing! bing! bing! It was a dramatic improvement. And these are tough cases. These are not easy cases. That influenced me to publish on it. And of course, with that, it has gotten a lot of attention. It is a drug that has to be used with care. And it’s not something I just throw at people willy-nilly. It’s got to be the right person in the right way. And if you’re going to use it, you have to be really familiar with the drug, and you have to follow the patients carefully. Even today, we’re still trying to figure out different ways in which it can be used.

Dana Parish: It occurs to me it should not be the first line of defense against Lyme.

Kenneth Liegner: I’m not using it that way. I’m not using it as a first line. First of all, it’s still relatively new. I would not say it’s, quote, ‘the standard of care,’ you know?

Dana Parish: Is it getting people durably better? Now that you’ve had a couple years with it, are there patients that have gotten well with it, that were intractable before and now don’t need to come see you every three or six months anymore?

Kenneth Liegner: Yes. But I don’t ever tell them to expect it. Nor do I declare that they are, quote, ‘cured.’ Because I don’t know. All I know is that there’s a subset of those who are treated, but not everybody who seems to get substantially better or well, and where they don’t need to see me for years at a time. So, I think it’s very potent. But again, it has certain toxicities that can be quite serious, even fatal, or resulting in irreversible neurologic injury. So, you have to be judicious with who you use it with. People need to be fully informed. As a clinician, you are obliged to follow them carefully and be vigilant. Usually with some of these complications if you recognize it, you need to stop the drug. And usually, those adverse reactions will reverse. But even then, you can’t say that. You don’t always know that they’re going to reverse. So, it’s tricky. It’s potent, but it has to be used with care, judiciously.

Dana Parish: I’ve heard some really remarkable stories for sure, some remarkable recovery stories. Early on, when you were first using it, people that were languishing for years, trying different things, were finally improving.

Kenneth Liegner: The thing about it is, it’s as cheap as borscht! I mean, relatively speaking, compared to intravenous Rocephin, which is expensive and inconvenient. It also has risks. To me, it’s just another tool in the toolbox. And you can’t have too many tools. We need more tools in the toolbox.

Dana Parish: But it’s great that you found that, and it’s helped a subset of your patients and other people have gone on and adopted it and have helped some of their patients. We need more innovation of course. But thank you for that. What my hope is now is that all this Long Covid research will inform chronic Lyme. Do you think that might happen? Is there hope on the horizon for chronic Lyme patients? In light of all the awareness now of what a chronic common infection can do?

Kenneth Liegner: I think there’s going to be some synergy there. But I think really in order to solve the problem, you need to acknowledge it for what it is. And that’s why I reiterate it’s important to acknowledge chronic Lyme, the infection. There can be other elements, like neuro autoimmune components for sure. Or maybe even post-infections in some people. But for many people it’s the infection. And if you don’t acknowledge that, then your research for treatment is going to be misaligned. You need to find a way to definitively deal with the infection. And of course, the hope and the goal would be to find something that’s absolutely curative, that eliminates the infection completely—unless you get reinfected—that should be the goal. That should be where the effort should be directed. Also, the other thing that’s important is to have a definitive direct detection test that’s qualitative, as well as semi-quantitative, that can help us to know the status of the infection and also the response to treatment in an objective way. That’s been lacking.

Dana Parish: Absolutely. I love this quote. It’s your quote. I remember the first time I read it, I almost fell off my chair because it just says it all. So, I’m going to read it. You said, “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine. Because elements of academic medicine, elements of government, and virtually the entire insurance industry have colluded to deny a disease.” If that just doesn’t say it all. Nobody could say it better than that. That’s just the truth. So, your book, we have to tell people, first of all, where to get it.

Kenneth Liegner: I have a website. The book has a website. It’s: inthecrucibleofchroniclymedisease.com.

Dana Parish: People can also purchase the book on Amazon and other book sellers. Before we go, I just want to talk to you about your book, because it was one of the most well-documented histories of chronic Lyme and the other infections that I’ve ever seen. And if anybody is in doubt, if there’s any clinician, or any scientist, any patient that is in doubt about whether Lyme is chronic, about whether these diseases are common, serious, presenting in every single way you can imagine, this book lays it all out. You saved incredible historical documents for how many years? Was it 30 years?

Kenneth Liegner: Well, I’m kind of a squirrel type. I tend to save things. I had a lot of correspondence with many principles in the field, a lot of correspondence with insurance and whatnot. I had it all. And I was somewhat inspired by Richard Horowitz’s book, How Can I Get Better: An Action Plan for Treating Resistant Lyme and Chronic Disease, but my book is a very different kind of book. I would describe it as a documentational history of Lyme disease. And there’s a very nice, beautifully written, preface/introduction by Pam Weintraub.

Dana Parish: So beautiful. I read it again last night. Amazing.

Kenneth Liegner: I think for anybody who might be interested in the book, what one should do is probably read the introductory materials. At the end of the book there’s a little summary. Then go back and read through it because that will orient the person to the book. It’s not for people who don’t have a serious interest in Lyme because it’s very granular. But anyone who goes through that will have a very good understanding of what all went on during this historical period.

Dana Parish: I agree. It’s absolutely amazing what you did. Well, thank you so much. Is there anything I missed that we didn’t talk about that you wanted to say?

Kenneth Liegner: I think everybody has to persevere, be determined. And I want to give a shout out to the patients and also especially to the mothers who advocated for their children. They are real heroes or heroines. I’m so impressed. And not just mothers. Look at Enrico Bruzzese.

Dana Parish: Yes. For sure.

Kenneth Liegner: He gave up his career to take care of Julia. Of course, it was a family effort while he was not working, caring for Julia. Julia’s mom was working and generating income to support the family.

Dana Parish: Amazing. I want to give thanks to you and to all the clinicians that take such good care of all of us. Thank you. I’m really, really appreciative of your time today and of all your insights. Thank you so much for being with us and I hope we can keep talking.

Kenneth Liegner: Absolutely. And thank you for inviting me. And thank you to Bay Area Lyme for supporting this.

Dana Parish: Thanks so much, Ken. See you again soon. Have a great day.

Kenneth Liegner: Okay. Bye-bye.

Dana Parish: Thank you for joining us for this episode of Ticktective, a program of the Bay Area Foundation. For more information and to get involved, visit bayarealyme.org.