Cindy Kennedy, FNP, is joined by Dr. Kenneth Liegner, who shares his thoughts about diagnosis and treatment of Lyme Disease. Dr. Liegner is a Board Certified Internist with additional training in Pathology and Critical Care Medicine, practicing in Pawling, N.Y. He has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988.He has published articles on Lyme disease in peer-reviewed scientific journals and has presented poster abstracts and talks at national and international conferences on Lyme disease and other tick-borne diseases. He has cared for many persons seriously ill with chronic and neurologic Lyme disease.
His work has focused on the serious morbidity and (occasional) mortality that can eventuate from this aspect of the illness. He has emphasized the urgent need for widespread clinical availability of improved methods of diagnostic testing and for development of improved methods of treatment for Lyme disease in all its stages. He holds the first United States patent issued proposing application of acaricide to deer for area-wide control of deer-tick populations as a means of reducing the incidence of Lyme disease. He authored In the Crucible of Chronic Lyme Disease – Collected Writings & Associated Materials, a documentational history of the struggle to characterize the nature of Lyme disease in the late 20th and early 21st centuries, published November 2015.
He is on the Board of Directors of The International Lyme and Associated Diseases Society, the Scientific Advisory Board of the Lyme Disease Association and is a member of the American Medical Association, the Westchester County Medical Society, the Medical Society of the State of New York (www.mssny.org) and The American Association of Physicians and Surgeons. He is on the staff of Northern Westchester Hospital Center in Mount Kisco, N.Y., and the Sharon Hospital in Sharon, Connecticut.
Transcript of Episode 20: Tips from a Lyme Literate Physician
Cindy Kennedy: Hi everybody. This is your host, Cindy Kennedy. You’re listening to another episode of “Living With Lyme.” And I am so excited to have Dr. Ken Liegner with me. And he is a well-versed, Lyme literate physician. He is well known in the Lyme treatment community, and he is what we call out here the Lyme literate doc. And you’ll see that a lot of other doctors that are as not well-versed, we don’t really call them the LL MD’s. Dr. Liegner is board certified as a medical internist, and he practices caring for people with acute and chronic Lyme Disease, as well as co-infections. He’s in Pawling, New York. He has authored countless research works, and he has also authored the book, “In the Crucible of Chronic Lyme Disease.” And I’m very excited to welcome you. Hi, Dr. Liegner.
Dr. Ken Liegner: Thank you so much Cindy.
Cindy Kennedy: I’m so happy to have you as a guest here. You are one of the top researchers, top authors, top treaters, of Lyme Disease. And I know there’s a little bit of a story back there, and I’ve read it, but tell me, how did you get started treating Lyme Disease?
Dr. Ken Liegner: Pure chance.
Cindy Kennedy: Oh, the perfect storm.
Dr. Ken Liegner: I just stumbled into it.
Cindy Kennedy: You did. You did. Did you get roots … Did you form your roots in the New York area, or were you always there?
Dr. Ken Liegner: Well, I went to medical school at New York Medical Collage in Valhalla, New York, in Westchester County. And then I did some training there, and then I went elsewhere. And then I was in Washington DC for a year, doing surgical critical care at Washington Hospital Centers MedStar Unit. And it was great training, and it’s the kind of training I wanted to have, very broad training, but I really decided that’s not what I wanted to do for a career. It’s quite grueling type of work, and so I decided to come back to Westchester County to start a private medical practice. That was around 1985 or so, and we decided to purchase a home. And I chose a home that was, I thought, suitable to turning the lower floor into a medical office. It was a raised ranch, and took out a business loan with Chemical Bank for 80 grand, which was very scary thing to do.
Cindy Kennedy: That’s great now, if you could get something for 80 grand in that area.
Dr. Ken Liegner: No, that was just for the renovations.
Cindy Kennedy: Oh, oh I see.
Dr. Ken Liegner: That was the renovations to turn basically a semi-finished basement into a medical office. Then I hired a contractor to build it out, and hung up my shingle, and waited, waited for the word to discover me.
Cindy Kennedy: And then, what? People were just coming in with crazy symptoms, and what happened?
Dr. Ken Liegner: Well, initially I just kind of did general medicine, and did a little bit of critical care at my hospital. Back in those days, I was the only critical care physician, because it was a new field, critical care. So I did some of that and did some general medicine and saw a wide variety of patients, and my house, it was a house. It was a home office in a little sort of a cul-de-sac area, so some of the people would be neighbors up the street would come in, and did general medicine. Then I started seeing patients with this new entity, Lyme Disease, which trust me, I knew virtually nothing about it. I just knew the name. That’s all I knew. And they were interesting cases, and challenging, puzzling, new disease. And I started seeing more patients, and then I realized they were strange. They were odd. They didn’t seem to behave the way they were supposed to behave. And so that was intriguing. So that was around ’85. I started seeing patients, just because at that time, there really was a burgeoning epidemic in Westchester, so that’s what I meant. I just kind of plunked myself down into this burgeoning epidemic, unbeknownst to me what I was getting myself in for.
And then around 1988, there was a local library, which was on a sort of an expansion plan. It was a little tiny library in Armonk, and they were doing a building expansion thing, and they asked me if I wanted to do a talk. And in fact, I arranged a medical series for them, and I decided to talk on, guess what, Lyme Disease, because I was seeing these patients. I didn’t know all that much about it at the time, and I took advantage of the medical library at Northern Westchester Hospital Center in Mount Kisco, and over a couple of three months, I reviewed a lot of the then available world literature, which in 1988, wasn’t that much, so in three months, you could really review a lot of it. And I gave a talk in the basement of this library, and there was a lot of interest in Lyme, because a lot of people were getting sick. People didn’t know a lot about it, so I gave this talk, turns out that the basement of this library was chock full. It was 300 people crammed into this basement of this library, so I gave my talk. All of a sudden, I’m an instant expert.
Cindy Kennedy: Wow, there you go.
Dr. Ken Liegner: Okay, but I knew I wasn’t an expert. It’s just because I’d reviewed the literature. I knew more than anybody else around at the time, and so that’s when my practice started kind of exploding with patients with tick borne illness. And it kind of grew from there.
Cindy Kennedy: What kind of testing was available back then?
Dr. Ken Liegner: Well, this is back in the day when there was not very much testing available. In fact, I was just going over some records with one of my staff from back then. We didn’t even have Western blots.
Cindy Kennedy: So what were we looking at?
Dr. Ken Liegner: All we had back then was ELISA, enzyme-linked immunosorbent assay. I mean, Western blot at that time was really a big deal research thing. You couldn’t really get them that easily. Of course, then they became to be more widely used, and it was fairly standard to get both an ELISA and a Western blot. But back in the day, all you had was the ELISA and the clinical.
Cindy Kennedy: Right, right, well that’s-
Dr. Ken Liegner: So it was a … Sorry.
Cindy Kennedy: That’s okay. Sorry. That’s so important, because we all know that Lyme Disease, and you wanna shake the medical community, because you got people here that are not testing positive, and truly they need to be treated on a clinical basis, and then we end up with people being misdiagnosed and these healthcare providers just not really getting it. And so now we’ve got a whole host of people that are still sick, and time is going on, and going on, and going on, and now we’re into what we call chronic Lyme Disease. So give us an idea of what that is. How do you classify it, and is there a diagnosis?
Dr. Ken Liegner: What do you … Is there a diagnosis?
Cindy Kennedy: Well, that’s not what I meant. Is there criteria to be sent-
Dr. Ken Liegner: Oh, well, yeah, I mean, it’s very interesting. To say that there’s not such thing as Lyme on a chronic basis, whether it’s treated or not treated is absurd to even question that. It’s as though you would say, is there such a thing as late-stage syphilis. Nobody questions that. But for a wide variety of reasons, a lot of them political and socio-economic in nature, the idea that there might be such a thing as Lyme on a chronic basis, even following treatment, there has been, I would say, a manufactured controversy about this, something that is so obvious, it’s ridiculous. I mean, the idea that there’s even any controversy about that itself should … How shall I say it … should invite scrutiny about just why that is.
Cindy Kennedy: Right, right, and that could be a whole other episode, but I can only imagine, if we were back in the Western days, and we had one group of people that were firm believers and one group of people on the other end of the saloon that wasn’t believers, that we could have a big shootout over this. This could raise a lot of tempers, and I’ve seen it happen. I, as my listeners know, I’m a nurse practitioner, and I do have physicians as patients, and I will say that if … I’ve brought up the idea about Lyme Disease, and I get some ridiculous statements, the fact that oh a tick has to be on for more than 36 hours, and it takes that long for them to regurgitate. And I just shake my head. I’m like, you can’t do that. There’s such a small percentage of people that even get a bullseye, and so we’re doing a very bad job of early diagnoses of this kind of condition. One of my biggest questions here is, is there a timeframe where you feel that if people have had symptoms more than six months, they’re more chronic, or is it geez let’s treat them and see if their body responds, their immune system picks up, and now they will not be chronic? How do you feel about that?
Dr. Ken Liegner: Well, in process, there’s an attempt to define exactly what chronic Lyme Disease is, in a formal definition. A lot of people use a cutoff of six months of symptoms or six months untreated as a cutoff, not just for Lyme but for other conditions that get the name chronic. Some would arbitrarily use that as a cutoff, and when I use the term chronic Lyme, what I mean is that the illness is due literally to the Lyme Disease organism or closely related organisms that fall within that species or related species and that the illness is actually due to that in particular. Some people try to lump that with other tick borne co-infections, and those are bonafide, and real, and they certainly can make the picture much more complicated, but what I mean when I talk about chronic Lyme Disease, illness that is due to ongoing infection, not post-treatment Lyme Disease syndrome that implies that it’s a post-infectious, non-infectious entity. And as you know, people have proposed that as an alternative to chronic Lyme, which again, I think, for political reasons, has gotten a lot of opprobrium attached to using that term, and I think that’s completely political smear tactics.
Cindy Kennedy: Okay, what is an opprobrium? I don’t have a dictionary with me.
Dr. Ken Liegner: Opprobrium, hateful ridicule that is directed at the idea of chronic Lyme, because it’s a ridiculous idea. Of course, no such thing exists, right? That’s tongue in cheek.
Cindy Kennedy: Well, here’s the problem. You know what? I don’t care what you call it. Let the people on the other end of the saloon give it a name, but why do people suffer? And what can we do about it?
Dr. Ken Liegner: Well, basically, scientific research and education is what is needed.
Cindy Kennedy: Right, but what do you do for the person that’s sick, and has been sick, and has been treated, and for a prolonged period of time?
Dr. Ken Liegner: Well, you have to do one’s best to try to figure out what in the world is wrong with them, and maybe it’s Lyme. Maybe it’s something else. Maybe it’s co-infections. And there does exist a lot of possibility for errors in diagnosis in both directions, meaning the people who have other conditions could be misdiagnosed with Lyme, on the one hand, and then people with Lyme Disease, because of it’s very wide range of manifestations, can be misdiagnosed with some other non-infectious conditions and get all kinds of treatments. Some of that treatment can be very toxic and dangerous for a condition that actually often would respond to fairly simple, relatively inexpensive antimicrobial therapy.
Cindy Kennedy: Okay, so I know that I’ve learned the problem rests with the individual’s immune system. What’s going on with the immune system?
Dr. Ken Liegner: Well, the immune system is crucial, critical, and it’s often been said that if one has any kind of an infection, even if it’s just a strep infection, although antibiotics are helpful, ultimately it’s the role of the immune system to eradicate the infection, eradicate it or contain it if it can, and if you don’t have a functioning immune system, ie HIV, AIDS, for example, or other immune deficiency states, antibiotics can become relatively ineffective or completely ineffective. So yes, the immune system is extremely important.
Cindy Kennedy: I understand that a prolonged infection, and we know that the spirochete of Lyme Disease can take on different shapes. It can hide. It can burrow into tissue. It can burrow into organs. And it does do a number on your immune system. Am I correct?
Dr. Ken Liegner: I think you are correct. A lot of people have had that concern, and there’s actually a good deal of scientific study that demonstrates that. Most notably, that sticks out in my mind is the work of Nicole Baumgarth. I think she’s from out in the West coast, maybe Irvine, University of California. I think she’s from Irvine, demonstrating in a mouse model, that the Lyme organism completely disrupts the germinal centers of the lymph nodes and other organs of the reticuloendothelial system, so in order for things to progress and be recognized by the immune system, you need an intact immune system. And there’s an architecture to the lymph nodes that includes something called germinal centers. If you take a lymph node and cut it in half and look at it under the microscope, using certain stains, you’ll see that there are, within the lymph node, there are sort of little spherical areas that have an architect to them, and those are necessary for to develop the IGM response, and then over time, there’s what’s called class switching, from IGM to IGG. And a lot of different immune cells are involved in that. And in a mouse model, of course, a mouse is not a man, but in a mouse model, Nicole has demonstrated that architecture gets completely disrupted.
And often, you will see persistence of the IGM response and a failure to class switch to IGG, and of course, a lot of us dealing with the patients with that disease that doesn’t exist, chronic Lyme Disease, you see that very commonly.
Cindy Kennedy: I’d like to explain to the listeners the difference between IGM and IGG. And the IGM, I’ll take something more simple like Chicken Pox. Someone gets infected with Chicken Pox, they’re going to produce the initial antibodies, which are called IGM, and we always say modern, so we remember the M. and then after a period of time, after you’ve had the illness and you create more long-term antibodies, you basically lose that IGM, and you have what we hope is a persistent IGG, and that shows that you have had exposure to it. Even in somebody’s case that they haven’t gotten very sick with, say, Chicken Pox, that’s where we know that the exposure has occurred, and you’ve built antibodies against it, just in case people don’t know what the IGM and IGG is.
Dr. Ken Liegner: That’s correct.
Cindy Kennedy: I don’t know if I really wanna hear the answer to this, but do you use the CD57 test?
Dr. Ken Liegner: Personally I don’t.
Cindy Kennedy: You don’t.
Dr. Ken Liegner: I know some of the colleagues do use that.
Cindy Kennedy: Yeah, that seemed to be the biggest way I was diagnosed, and some IGeneX labs that kind of came back consistently not positive and not negative, kind of indeterminate, but ever since there’s been a lot of exposure to this podcast, there’s been other podcasts done for Resilience Radio, where they’ve asked me to be a guest. I’ve had some exposure via news, and also our local paper did a wonderful article. I’ve gotten a lot of emails and notification through Facebook. And people feel like my journey is very similar to theirs, so let’s just walk through me as a case study.
So I come to you. I have had a variety of symptoms for a persistent period of time. I’ve been sent to you, because I’ve had to take care of myself practically. I’ve seen Rheumatologists. I’ve seen PCP’s. I had a sleep study, because I was having such trouble sleeping. The fatigue level was horrible. At this point, my hands are still swollen, and X-rays show some fluid in the capsules in my knuckles, in my wrists, but everybody’s I don’t know. I don’t know. I don’t know. Nobody knows what the heck’s wrong with me, so I come and I see you. And we do some tests and clinically, that’s the angle we have to take, so we get treated, antibiotics, oral, triple antibiotics. Neurologic symptoms are occurring, just personality issues, forgetfulness, and at that point, I had a PICC line, so put a PICC line in, antibiotics IV for a period of time, then a really bad allergic reaction, and we just kind of said, that’s enough of that, did in the process, because of clinical symptoms, get treated for Babesia.
And so after that, when I was done with the antibiotics, and I really needed to try an alternative route, doing some homeopathy, doing some supplements, etc, periods of time, up and down, just still don’t feel well. And so this is what a lot of people have, and they don’t know where to go. What would your suggestion be?
Dr. Ken Liegner: Well, as a physician, want to just underscore the importance of very careful history, taking a very careful history, in terms of what kinds of symptoms the person has had going back to the onset of their illness. When was the last time they felt rather well, and what changed? It’s very important to ascertain some basic things, like have they had any definite known tick attachments or eruptions that might have been consistent with erythema migrans, the rash of Lyme, and/or have they had significant opportunities for exposure to ticks and disease that they carry in areas that are known to be endemic for Lyme and tick-borne diseases. And of course, if you query almost any human and speak to them in enough depth, it will turn out that they’ve had some exposure, because I mean, ticks are fairly ubiquitous people, live in different places. They vacation, and so I mean it’s hard to think of a person who might not have had any risk.
Cindy Kennedy: Well, the other thing that, most people have dogs, and the dogs are fairly well protected with all of their Seresto collars, or sprays, or their Frontline, or Advantix stuff, and they bring them into the home.
Dr. Ken Liegner: Exactly, indoor/outdoor pets can be the so-called Trojan horse. No matter how careful you are, and even though you may treat these animals, a lot of the treatments that we have, what they do is they kill the ticks on the animal when the tick feeds but does not necessarily kill the tick when it’s on the coat of the animal. So in other words, theoretically, an indoor/outdoor pet could bring ticks into the home that can go off the animal, onto the carpet, or onto the bedding, and I think animals are wonderful, but especially if they’re indoor/outdoor, they can pose some risks. And also, ticks, if you didn’t know it, they will actively seek out their hosts, and they can detect carbon dioxide and will follow carbon dioxide gradients to find a host. So yeah, and it’s also important to emphasize, many people who really and truly have Lyme, and bullet proof cases of Lyme never give a history of known tick attachment or of a recognized rash. And of course, that’s often people show up years later quite ill with fully diagnostic tests if they’re lucky, and they went for years, because nobody really though about Lyme, because they didn’t come in saying, I had a tick bite and a rash.
Cindy Kennedy: Right. For people who don’t know, when we talk about carbon dioxide, that’s actually what is in our breath as we breathe out.
Dr. Ken Liegner: Correct.
Cindy Kennedy: Yeah, so they’re just looking for breathing people, so everybody has to breathe.
Dr. Ken Liegner: Or critters, it doesn’t have to be people.
Cindy Kennedy: True. True.
Dr. Ken Liegner: By the way, there’s a great book that I’d like to plug called, “Dead End Host.” Have you ever heard of that book?
Cindy Kennedy: No. “Dead End Host.”
Dr. Ken Liegner: “Dead End Host,” you can get it on Amazon. It was written by Dan Ardrey. Do you know who Dan Ardrey is?
Cindy Kennedy: No, give me the info.
Dr. Ken Liegner: Well, do you remember a book from back in the day, in the ’60’s or ’70’s called … What’s it called … “African Genesis.”
Cindy Kennedy: Now, I don’t wanna date you-
Dr. Ken Liegner: It’s okay.
Cindy Kennedy: Yeah, well, I probably was just learning my alphabet back in the ’60’s.
Dr. Ken Liegner: Well, anyway, Robert Ardrey was the author of that book called “African Genesis,” which made quite a hit in the ’60’s. And Dan is the son of Robert Ardrey, which I didn’t realize that for many years. I didn’t realize that Dan was Robert Ardrey’s son. But anyway, Dan wrote, I thought, and excellent book about his own experience with Lyme Disease. He contracted it, I think, when he visited the Lower Hudson Valley. I think he was at Bard College. It’s a long story. I thought very, very interesting, very well researched, very well referenced. And he tried to get it published, and he had showed me a review copy. This has gotta be 20 years ago. He showed me a review copy. I thought it was excellent. He made the mistake of submitting it to the Harvard University Press, and one of the reviewers was, who I don’t know for sure who it was. I have my suspicions who the reviewer was, but it was just the most vicious review, and I think reflecting the politics of the day. But Dan persevered, and as electronic publishing became possible, he actually had the book published, or self-published it. And I have nothing to gain by this, but I would highly recommend Dan Ardrey’s book, “Dead End Host.” It’s an excellent book. Anyway, I don’t know how I got onto that.
Cindy Kennedy: No, that’s okay. We all do that. The biggest concern is, is there hope? A lot of people are depressed. They don’t feel well. They’re not finding the help they need, or they have been treated and for a significant period of time. Is there hope that these chronic Lyme sufferers are going to get better, and what would you say they need to do?
Dr. Ken Liegner: Well, first of all, I believe there’s hope. I believe that we could and can have better methods of both diagnosis and treatment, not only for Lyme Disease but the other so-called tick-borne co-infections, and that is beginning to happen. So it’s a time that things are looking more encouraging than they have for a long time. We know there are at least three or four academic groups who are actively working to determine if we can develop improved methods of treatment for Lyme. There’s Kim Lewis’s group at Northeastern University, Ying Zhang’s group at Johns Hopkins. There’s a gentleman named Jay Rajadas, who’s at Stanford and also Eva Sapi. They are all looking to new approaches to try to develop improved methods of treatment, and also at the same time, we are on the cusp of improved methods of diagnosis as well.
Cindy Kennedy: Oh, I’m so excited.
Dr. Ken Liegner: I mean, that’s been a big part of the problem obviously. A big part of the problem is the misuse of the two-tier system of testing that was developed by the CDC supposedly intended strictly for epidemiologic purposes but widely misused by the insurers to deny people both diagnosis and reimbursement for care.
Cindy Kennedy: Oh, it’s awful. It’s awful. Back before, in Massachusetts, but back before they passed a bill that said that insurance companies mandated by the state of Massachusets could no longer deny antibiotic coverage. My insurance company was rah rah, cis boom bah, up until day 28, and then day 29, there was no antibiotics at my door. And we got a letter saying at that point everything else was experimental. And I’m like, are you kidding me? So then now the venture goes out, and I gotta find out how can I pay for this, and as you know, people can lose … They lose their income, because they can’t work. They lose savings. They lose family, marriages, that whole thing, and it’s unfortunate, and I can only hope, that with the amount of infections, and cases, and people really opening their eyes to this, that we can get some big changes, because it’s truly unfortunate. And I know that there are people that are really suffering out there, and their quality of their life is very poor.
Dr. Ken Liegner: Well, what has happened is that the situation has gotten so bad, because of severely misguided policies, that wide swaths of the population are affected, including guess what? Legislators, their children, their wives, their staffers, themselves, and you get enough of that, and all of a sudden, things begin to change, so it becomes feasible for there to be legislation. And that affects policy. The amount of resources that have been allocated to Lyme and tick-born disease over the past 30 years is pitiful.
Cindy Kennedy: It is.
Dr. Ken Liegner: And a lot of it has gone to certain individuals who continue to promote the notion that there’s no such thing as chronic Lyme Disease. There’s no such thing as so-called seronegative Lyme Disease, meaning Lyme Disease existing when the standard tests are negative, and that’s a big, big issue. And so called direct detection methods, some of which have been developed, some of which have been promising, and then moth balled, which would enable the doctors and the patients to know with confidence who really has Lyme Disease and who doesn’t, and also not only do they have it, but what is the status of the infection? A lot of those methods have been suppressed for political and socio-economic reasons.
Cindy Kennedy: What do you think is the best Lyme test, or as I have read and learned, that really you kind of gotta use a variety of testing methods.
Dr. Ken Liegner: Yeah, well, clinical is extremely important, and clinical suspicion is important, nonetheless, you still want to, if you can, use the methods that are available to try to figure out what is going on. There’s no “best” Lyme test right now.
Cindy Kennedy: There isn’t, okay.
Dr. Ken Liegner: Many of us need to use a range of methods, including the screening test, the ELIAS so-called, and the Western blot. We usually send that to at least two different good laboratories, because we have found you can not rely on a single laboratory, even a good laboratory. You also use whatever direct detection methods are available right now. In New York state, we are able to use preliminary chain reaction as a method. There are other methods that have been developed and are beginning to be utilized. For example, CERES, C-E-R-E-S, CERES nanoscience has their Lyme nanotrap test, which is an antigen detection test in urine, that’s not yet available in New York state, but it is becoming available in other states. And again, there are other cutting edge research tools that are on the horizon, but they’re not quite ready for primetime.
Cindy Kennedy: Right, so we just gotta hold on, hold on a little while longer. And so before we wrap up here, your information is wonderful, and I do know that you and your nurse practitioner are taking on new patients. And I did travel to Mount Kisco for treatment, and I can tell you it’s doable from Western Massachusets. And so I encourage people who are listening to this podcast and have suspicion, and you’re not getting the appropriate answers, or the appropriate treatment, to possibly go visit Dr. Liegner or his nurse practitioner. But I have a couple of funny questions for you, and I didn’t tell you about that. Sometimes I do, but I had forgotten, so I apologize. You said you wanted things to stump you, so here we go. Ready?
Dr. Ken Liegner: I said I was expecting some curveballs.
Cindy Kennedy: Okay, here’s one. What ticks you off?
Dr. Ken Liegner: What ticks me off? Oh, well, the injustice that persons with Lyme Disease have suffered over the past 30 years. Also ticks me off that the physicians who have treated the patients have also suffered quite a bit of injustice as well. But it looks to me like there might be some comeuppance.
Cindy Kennedy: Okay, all right, well see you didn’t flinch.
Dr. Ken Liegner: No, you’re aware of the litigation that recently was undertaken, right?
Cindy Kennedy: Tell me.
Dr. Ken Liegner: You’re not aware of it.
Cindy Kennedy: I might be, but tell me and tell my listeners.
Dr. Ken Liegner: Well, there’s a woman named Lisa Torrey. She and another patient … I’m not sure the pronunciation of his name, something like David [inaudible 00:35:35] or something like that. They, over the past 10 years or so, apparently, decided to take it upon themselves to really build a case for collusion by certain players, along with the insurance industry, to essentially defraud the American public. And they did all the groundwork, and they presented it to several groups of attorneys who have deep experience in this area. And what I was told was that before the attorneys agreed to take the case, the groundwork that Lisa and her other coworker did was presented to academic legal experts at Harvard, to ask them whether there really was a case, and the answer was in the affirmative. So that was recently filed, and I’m sure it’s available. It’s a civil action. It’s 53 page brief, and it’s available for people to review on the internet. And I did go through it, all 53 pages of it, and I think they build a very compelling case.
Cindy Kennedy: I did read something about something that was going on in Texas, and that was against … Is this similar or the same?
Dr. Ken Liegner: It’s the same.
Cindy Kennedy: It is, okay, so it is that. I did read about that. I didn’t get the names, so gosh, there’s some good changes, and I’m really happy to see that. It’s just so difficult for both patients and certainly the caregivers, like yourselves, and many others that are just so frustrated and put on the spot, and kind of blackballed by other members. But one more good question, Lyme is something that has allowed me to get a big fat lemon in my lap, so I decided to make lemonade, and in life, I’m sure you’ve gotten a lemon somewhere. I hope it wasn’t a car, but what’s your lemonade?
Dr. Ken Liegner: Well, there’s the same situation. I mean, trust me, I didn’t go looking for Lyme Disease. Like I said, it was chance, circumstance. It turned out that it was so-called a niche that needed to be filled. And I happen to fill it. And I’ll tell you one thing. It hasn’t been boring.
Cindy Kennedy: No, I bet. It hasn’t been boring, because it’s all shapes. It’s sizes. It’s ages. It’s genders, nationalities. It’s all of that. No one’s really safe.
Dr. Ken Liegner: Well, it’s been very, very challenging, and also, intellectually and scientifically, actually extremely interesting, and quite a learning experience. And it also, it so to speak tests your mettle as a physician, because this is what being a physician is all about or should be, listening to the patient, examining the patient, using the scientific tools that are available to try to figure out what is going on. It really is a very challenging illness. And it’s a new illness.
Cindy Kennedy: You have to have your eyes. You have to use your eyes, and you have to listen. You have to listen with your ears, and the scenario that just at this point makes me crazy is that I got treated with three weeks of Doxycycline, got sent over to a Rheumatologist. I said to him, I’m 75% better, and he just shrugged his shoulders and said, “Well, I don’t know why.” And so that’s where the ball got dropped, that if I got treated longer, if he was wiser, if he believed in the theory of a negative test does not mean a non-infection, then I wouldn’t be faced with what’s going on with me today. So that being said, I welcome change. I really, really do, so I thank you so much for all this great information, and if you had one bit of advice for people who are listening, who may be suffering or know someone who’s suffering, what would you advise them to do?
Dr. Ken Liegner: As my patient Dickey Logan once said, “If you think you have Lyme Disease, you have to pursue the diagnosis.” And also, don’t give up hope. Don’t give up.
Cindy Kennedy: Yeah, I think a lot of people do give up hope, because it’s a very overwhelming and taxing for a variety of … the individuals, their families, whatever. I don’t know if anybody here’s all that panting and whatnot. My dog, my daughter’s dog, is here, and he’s getting all excited about my producer here Doug.
Dr. Ken Liegner: What kind of a dog is it?
Cindy Kennedy: I have two Labs, and this is another Lab, so we have all three colors here. We have a chocolate, a yellow, and my daughter’s dog’s a black Lab. That’s our mechanism to get ticks in the house, I guess, huh?
Dr. Ken Liegner: They’re nice animals.
Cindy Kennedy: They’re awesome. They’re awesome. And one other question I wondered, did you ever suffer from Lyme Disease yourself?
Dr. Ken Liegner: No, I didn’t.
Cindy Kennedy: Good. Let’s keep it that way. Stay in the library.
Dr. Ken Liegner: Right. Well, I don’t step on the grass where I live unless I am in knee-high boots that are pre-sprayed with Permethrin.
Cindy Kennedy: Wonderful. Wonderful. Well, I thank you again, and I look forward to seeing you again, because we do run into each other from time to time, and I hope all my listeners have really enjoyed this episode. It’s a very, very eye opening and actually heartwarming and giving us a lot of hope, so for all of my listeners, I thank you for listening to this episode. You’ve been listening to “Living With Lyme,” and your host Cindy Kennedy. And this has been Dr. Ken Liegner. And come back, listen to another episode, and do subscribe to the website to get more podcast information. And that’s at www.livingwithlyme.us. I’m gonna sign off here, and take good care.