Today’s guest is Dr. Daniel Kinderlehrer. He is a nationally recognized physician with expertise in the fields of nutrition, allergy, environmental medicine, Lyme Disease, and healing of mind, body and spirit as a unified whole. He recently came out with a book called Recovery from Lyme Disease: The Integrative Medicine Guide to the Diagnosing and Treating Tick-Borne Illness.
We talk about why conventional medicine doctors do not recognize Lyme, PANS, mental health, sleeping issues, disulfiram, and other treatments that he uses in his practice. He is also coming out with a book on March 16th, called Recovery from Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness.
Dr. Kinderlehrer’s Lyme Journey
Mimi: Dr. Kinderlehrer, thank you so much for coming on today. I’m super excited to talk to you and talk about your new book that’s coming out. It’s great to hear your side because you also have Lyme. I’ve enjoyed reading your book because I felt I was… I almost started crying during it, because I felt I was talking to myself, reading your book. Because, all of what you experienced with your sleeping and talking to even friends that are doctors and not being heard or understood, or people didn’t understand what you were going through. So it kind of really related to me. But thank you for coming on. I would love to start out by talking about your Lyme journey.
Dr. Kinderlehrer: My Lyme journey. Okay. Well, I’ve lived in Massachusetts, not far from your home state of Connecticut. And so as in 1996, August of 1996, I won’t forget that timeline, suddenly, I came down with this high fever, 104 degrees, shaking, chills and drenching sweats and diffused aching and then it was gone after two or three days. I had not seen a tick. I have not seen a rash and I didn’t know what it was, but since it was gone after a few days, I was willing to ignore it as some sort of virus. But a week later, it recurred and this was a little scary, but after another couple of days I was fine. And then it recurred another week later, at which point I couldn’t ignore it anymore.
I saw my family doctor. I didn’t have a family doctor. I saw a friend of mine who’s a doctor. He examined me said, “Well, you have a large spleen.” He ran some blood tests and it was positive for Lyme, which was great news. Okay, I’ll go on an antibiotic and we’ll be done. Not even close.
I go on antibiotics, but around that same time, I’m not getting better and my symptoms are morphing. At that point, my sleep goes South big time. At this point, I’m taking a hundred milligrams of Benadryl and other agents to try to get some sleep and just feeling awful and anxious. I was generally a calm, cool collected kind of guy and things didn’t rattle me. I was nine out of 10 all the time impending doom. It was awful. And so these symptoms were ongoing. They weren’t changing with antibiotics and after a month or so, I called up someone who was, and is considered a leading Lyme expert in the country.
Dr. Kinderlehrer: Back then doctors could call doctors and you’d get a call back. But unfortunately it doesn’t work so well anymore. But this international expert in Lyme Disease, he listened to my story and I had told him about the lab data. I had follow-up lab testing, which was also a slam dunk for Lyme Disease. And what he said was, “Well, you don’t have Lyme Disease.” And I said, “Why not?” And he said, “Well, if you had Lyme Disease, you’d be better by now, because you’ve been on treatment.” And I said, “Well, what about the lab tests? They were a slam dunk.” And he said, “False positive.” And I said, “Well, what do you think I have?” He said, “Something else.”
And that was it. That was the whole conversation. It turns out he was absolutely wrong. I have Lyme Disease. There was no question I had Lyme Disease. He was right. I had something else as you might suspect already. I had the BCO [ptosis 00:05:30], which is what can give fever, sweats and chills, and often recurs on a one or two week basis like it did at the onset of this infection. I called up a friend of mine who worked in upstate New York. I knew he was seeing people with Lyme Disease, because I hadn’t been at that point. And this is what, 25 years ago.
I described what happened and his response was, “Welcome to the Lyme Wars.”
Mimi: I know that was a great way of saying that. Because, it is a war between the world of doctors, right? The conventional medicine and now that you see more alternative people coming out. But even if you don’t, I actually call it three different pockets. You have the doctors that don’t believe in Lyme at all, that it doesn’t exist, then you have the doctors that only want to treat it with a heavy, heavy, heavy dose of antibiotics. And then you have the camp of doctors that are like, “Hey, we’ll use a mixture.” It’s other things. It’s like an onion that needs to be peeled back. So it’s three different camps that not… Is that an accurate way of how you would describe it? Or how else would you…?
Dr. Kinderlehrer: It’s interesting way to look at it. As I think about it for the first time in terms of camps, I mean, it had been two camps, one that the Infectious Disease Society of America holds which is Lyme Disease is easy to diagnose, easy to treat, short-term antibiotics, no big deal. Versus, the other camp, which says actually, it can be challenging to diagnose, often complicated by multiple co-infections and can be very challenging to treat and may require long-term antibiotics.
Now within each group, I guess there are subgroups. Those who believe there is such a thing as chronic Lyme and I’ll come back to that nomenclature. But of those who believe that there is such a thing as persistent Lyme infection, even after a short course of antibiotics, there are those allopathic docs who basically all they have in their toolbox is antibiotics versus the integrative docs like myself who have a much bigger toolbox. We can talk about those things we’re addressing.
I will say that there are more and more mainstream docs who are recognizing that there is such a thing as a persistent infection. I’m sure you’re aware of the designation of post-treatment Lyme Disease Syndrome, PTLDS which is anathema to me and many others because it implies that the Lyme is no longer there.
But I’m actually going to go out on a whim. I think it’s more likely than not that people who get Acute Lyme Disease who are treated with a relatively short course of antibiotics two to four weeks, and they only have Lyme Disease. That is, they don’t have co-infections and they’re otherwise healthy, most of them are cured or if not cured, minor remaining symptoms because they don’t end up in my office. I see people who have chronic persistent infection, they all have Lyme. I never see someone who doesn’t have one, two, three, sometimes four co-infections. They all have co-infections and that’s why I used the designation in my book of Lyme Disease complex, which includes not just Lyme, but includes the tick-borne co-Infections. It also includes all the downstream problems associated this endocrine disruption, neurological issues, and on and on and on, and we can get into if you want. So, it is progress that the mainstream doctors are now admitting that they say 10 to 20% of people who were treated for acute Lyme Disease, go on to have chronic symptomatology. And they’re acknowledging that these people are actually sick because-
Mimi: But are they though? Because I feel the insurance companies still aren’t covering it. If you talk to most of the Lyme communities that I’m in, these people are going to the emergency room for various… I’ve been to the emergency room three times and all three times, and this is all in the past five years, all three times East coast, West coast, both, even one of the times on the East coast, which I was in Fairfield County, which is number one County in the country probably for Lyme, the doctor told me that chronic Lyme does not exist and that I should not have gotten a port because I did myself more damage because it doesn’t exist and I was making the whole thing up. And this is what she’s telling me. And I’m like, I am sitting in Fairfield County Hospital, and they don’t even believe in Lyme at this point? So it’s amazing 25 years later, right, that most doctors still don’t believe in chronic Lyme.
Dr. Kinderlehrer: Yes. I think that’s true. But in academic settings, there’s more and more acknowledgment that there is. And it’s taking quite a while to filter down. You’re reminding me… You’ve been around for a while Mimi, do you know who Dr. Sam Dante is?
Mimi: No, I don’t.
Dr. Kinderlehrer: Well, he used to work at University Hospital in Boston. So he was an academic doc at Boston University School of Medicine. And, he believed in treated in Lyme Disease. He was an academic, published many papers. I was in his office in the summer of 2001 and a New England Journal came out and it had three articles on Lyme Disease. One was the famous Klempner study that disputed that there is such a thing as chronic Lyme. One was the famous Needleman study, which was the morning after pill you give doxy 200 milligrams and you won’t get Lyme Disease. And the third one was a review article by Allen Steere. I had read all these articles and I turned to Sam. I said, “Sam, how does this garbage get published?” And his answer was so interesting. He said, “Dan, never before in my medical experience have I seen so people have so much influence and been so wrong.” We’re talking about a few people in the IDSA who say, this is the way it is. And people believe them because they’re the so-called experts.
Mimi: Right. And was there also a frustration about it, because this week, I did the Lyme fly-in where we called into the congressmen and senators. And one thing that we talked about was, it’s interesting in the past year with what’s going on, how the long haulers are getting more recognition. Why does long haulers exist, but yet we can’t be long haulers for Lyme? Why is it okay for that, but not for this? And that’s what we were talking about with the senators and congressmen. You guys are already funding that and acknowledging that, but you can’t acknowledge us. Why? Where’s the disconnect? And, interestingly, we have the same symptoms. So if you’re believing them, why can’t you believe us and why can’t you fund or get the insurance companies to fund whatever we need to do. So it’s going to be interesting because I think as those long haulers get sicker and sicker and don’t get better and they have to figure out a cure for them or treat them, it’s going to have to address what we’re going through.
Dr. Kinderlehrer: I don’t know if you happen to see the op-ed in the New York Times by Ross Douthat. It was about two weeks ago, perhaps.
Mimi: No, no.
Dr. Kinderlehrer: He’s a New York Times columnist and he has suffered from chronic Lyme. Well, he made the comparison that you’re making that these people with long hauler syndrome are similar to those of us who’ve had chronic persistent Lyme. And he said, “The good thing about the long haulers is that they’re getting credibility.” And it’s the same thing that you’re saying, the exact same thing, you should check it out.
Mimi: I feel like I’m the first child of a divorced family and the stepchild is getting the love. I’m like, wait a second. Why are we not getting the love?
Dr. Kinderlehrer: But you’re absolutely right about… Even though I really see it shifting centers like Johns Hopkins, they’re really publishing a lot on post-treatment Lyme Disease syndrome. Now I eschew that label. I won’t use it. I publish too and I won’t use PTLDS because of the implications. And in fact, you’ve seen my book, and chapter three is an anatomy of the Lyme Wars, which I’m very proud of that chapter because it goes point by point of how they got it wrong. They just got it wrong. All the evidence is on our side. But I’m in Colorado and I’m suspecting it’s worse than Fairfield, Connecticut. I can’t believe the stories that people tell me. They go to the doctor’s office and they get yelled at because they want to be tested for Lyme Disease as if these doctors even knew how to test them for Lyme Disease.
Mimi: But it’s almost you got a question, what are they covering up? Why are they not? It’s not the pharmaceuticals have a drug that’s solving the problem and they’re trying to protect that pharmaceutical drug. There’s not even an option. Why wouldn’t you question it? I don’t understand. It’s just a very complex…
Dr. Kinderlehrer: I understand why they deny it because they’re believing their infectious disease expert and they’re not really looking into the data. What I don’t understand is why they get so defensive and so angry about it. Why are they threatened? I don’t know. I have to imagine it has to do with their being self-conscious about their own ignorance or not really… It’s not comfortable for doctors to see patients and have no idea what’s wrong with them.
Mental Health Component to Lyme Disease
Mimi: So wait, I want to just pivot to something else that you brought up and I read in the book sleeping, which I have a huge part of the sleeping and the mental health component of it. Because I love the fact that you being a doctor, you’re talking about it because you had a personal experience with it where I don’t think as suicides have gone through the roof and mental health has gone through the roof, you have to stop and wonder, is any of this from undiagnosed Lyme right now in this country? Because it is real. I have a daughter that had Lyme and she had a mental… When she was in sixth or seventh grade, the anxiety was through the roof, crying and screaming at 10 o’clock at night. She was afraid to go to sleep for some reason. I remember, going to talk to a doctor about it, a psychiatrist, and she didn’t really understand.
I happened to call her, she, “Call me next time it happens.” And she ran over and experienced it. And I was, “See.” It was the Lyme. Because as soon as we got her antibiotics and got her treated for Lyme, it went away in a second. But, really, I don’t think is talked enough about how the mental piece of it. Forget being denied, that you even have anything wrong or the financial stress of Lyme, but just what the actual virus and bacteria do to you.
Dr. Kinderlehrer: I suspect you’re aware of the nomenclature pans, is that right?
Lyme & PANS
Dr. Kinderlehrer: Let’s just talk about that little bit, because I think it’s a really, really big deal. So initially in 1994, Susan Swedo and colleagues described PANDAS, which was Pediatric Autoimmune Neuropsychiatric Disease Associated with Streptococcal infections. And what they were describing was kids who had been normal and healthy, get strep throat and suddenly they develop severe OCD and eating disorders and different anxiety, depression, behavioral, cognitive problems with a decline in school performance, tic disorders and abnormal involuntary movements and sleep problems and bedwetting. I mean, out of the blue, out of the blue, as they’ve fallen off a cliff. Since then, the nomenclature has changed from PANDAS PANS. So PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. And the reason that nomenclature has been changed because it’s not just strep. They’re viruses Epstein-Barr virus, the common cold, HIV, but also Bartonella, super common as you know, co-infection, mycoplasma, a common coinfection, and maybe Lyme Disease, which I wrote an article of it’s actually up for review right now. We can come back to that.
But, I’ll describe a patient I had. This 16-year-old who came to me with a diagnosis of anorexia nervosa. She had been in an eating disorder clinic as an inpatient, refusing to eat, body image issues, although she was not overweight whatsoever. And she was in and out of this eating disorder because she was refusing to eat. They had to put it in a nasal gastric tube. She was suicidal, was really threatening with intent. And because they had lived in Upstate New York and her mother was a nurse, the mother managed to get her tested for Lyme and it was positive. And they brought her to see me and she was positive for Lyme, babesia, mycoplasma and she wasn’t positive for Bartonella, but she had Bartonella, which is very interesting. She had the Bartonella striae. She had those lines that sometimes people think are stretch marks, even though they’re in different planes than stretch marks and they’re not associated with weight gain. And, she thought that these striae, Bartonella striae were stretch marks because she was overweight. Ain’t that interesting?
Dr. Kinderlehrer: The great story is we put her on antibiotics, including a few months of intravenous antibiotics. She stayed on antibiotics for a year and she’s been in remission. She’s apparently cured anyway. It has been years, it’s about four years since we did that and she has no eating disorder. And it turns out there’s a huge amount of documentation about infections causing eating disorders. That patient made me wonder how many have kids who are adolescents who are suffering from mental health issues actually have a PANS-like syndrome, have tick-borne infections? And, a colleague of mine, Nancy Brown was medical director at a residential treatment center, actually right at the foot of the Rocky Mountains, Estes Park. And, we did a study. We had 10 kids at random, all diagnosed with major depressive disorder, seven with generalized anxiety disorder. A lot of them with suicidal intent and cutting and things like that. None of them had a known medical disorder except for one had celiac disease. And we tested them, turns out about six of them tested positive for tick-borne infections. So they had antibodies, nine out of 10 had positive Cunningham Panels.
For the sake of your audience, the Cunningham Panel was designed to diagnose this PANS syndrome. What the PANS syndrome is, is it’s an autoimmune reaction stimulated by the microbes that result in inflammation in the brain. And now you’ve got a brain on fire. So, again, just a little more explanation for the people who are watching this. If you get strep throat and it’s not treated, what can happen is antibodies to the strep attack, the heart valves and that’s rheumatic fever. The reason those antibodies attack the heart valves is that there’s some sort of similar cellular structure between the strep bacteria and the heart valves. It’s called molecular mimicry. It’s an infection, the strep, and it’s an auto-immune reaction. And what we’re talking about with these microbes and mental illness is that it’s the same thing, but instead of attacking heart valves, it’s attacking the brain. And you’ve got a brain on fire and these poor kids, particularly OCD and eating disorders, but all sorts of mood and behavioral issues, and it can be really, really tough. I mean, they can also be psychotic.
I have a patient right now, who’s on intravenous antibiotics and about to start intravenous gamma globulin for this condition. But, nine out of 10 of these adolescents, nine out of 10 of these adolescents who couldn’t hack it at home because they were too depressed and anxious, couldn’t go to public school, tested positive. I mean, we were blown away.
Mimi: So all these mental homes around the country should be testing for this? Well, the other fact too, is that a doctor I’ve worked with because I’ve gotten hyperthermia, and he specializes in ALS patients. He’s been testing every single one of his ALS patients and every single one of them have undiagnosed Lyme.
Dr. Kinderlehrer: That’s really, really interesting. I did submit a paper risk recently, I’m waiting for it to go through peer review and it’s an opinion article. The title is, does Lyme Disease cause PANS? Right now, we cannot definitively say it does. We can say tick-borne infections do, and like I’ve already described, I don’t see Lyme Disease without the coinfection. So how can we indict or really a Burgdorfer either Lyme pathogen, but, I basically ended up that we should rename the syndrome. Because it’s not just the pediatric population and it’s not just acute onset. And I suggested we call it microbe-induced autoimmune neuropsychiatric syndrome or MANS, and realized that the same thing is going on in adults. It’s just that we’re not running these Cunningham Panels on adults much. We’re just looking at children and adolescents, but boy, wouldn’t it be a good study to take a bunch of adults with significant neuropsychiatric complaints associated with tick-borne infections and start running Cunningham Panels?
There was a study by Brian Fallon. You probably know, he’s at Columbia and I’m pretty sure Madeline Cunningham was part of the study who helped develop the Cunningham Panel. They looked at people who had Lyme, who had had Lyme and some of them continued to be symptomatic. And they found that a significant percentage of them actually had positive Cunningham Panels compared to a control population, people never had line. None of them had. I don’t think any of those controls had Cunningham Panels. This whole auto-immune business is really a big deal. It’s really a big deal.
Disulfiram and Break Through Medicines
Mimi: Can we take it a step further? So someone comes to your office, I know you refer them very individually, it’s not the same for everybody. You were one of the only doctors that I’ve talked to so far that have treated with Disulfiram, so I would love for you to speak about that a little bit.
Dr. Kinderlehrer: Sure. So this got a lot of attention. A colleague of mine, Ken Liegner, a good doctor I’ve known for about 20 years probably or more. So the story is very interesting. There’s a Stanford group that ran over… I’m trying to remember, over 4,000 agents against Lyme in the laboratory, and then they published their top 20 hits. And number one of that top 20 was Disulfiram. It had the most killing power of over 4,000 agents that they tested.
Dr. Kinderlehrer: Then, there’s this doctor at Northeastern University, Kim Lewis at the microbiology department who they did their own studies. And he presented in October 1996 at a conference and described his results and he had this bar graph. If patients want to go on to Lymedisease.org and see an article that I had posted there around July of to get my years straight, 2019 I think, that bar graph is in that article. And what it showed was, how many bacteria are still present after treatment with different antibiotics? With doxycycline, a lot. And then Rocephine better, vancomycin other intravenous drugs, better and then Disulfiram, none, they were no bacteria left. They said they’d never seen anything like it, no persistence cells. It was sterile. They’d never seen anything it.
Okay. So a patient of Dr. Liegner’s who saw this lecture and the lecture’s online, you can find it, went to Dr. Liegner and said, “I want to be treated with Disulfiram.” Now this patient was diagnosed with Lyme and babesia and he’d been on antibiotics for eight or nine years and he was pretty good. He couldn’t stop those antibiotics or he would relapse and he wanted to get off these antibiotics. And Ken Liegner did his due diligence, researched the antibiotics. Are there any contra-indications whatever. In short order, they stopped his triple antibiotic regimen. They put him on a full dose of Disulfiram and after four months he said, “I’m cured.” He stopped it. And it is over three and a half years later. He’s good.
Mimi: That’s amazing.
Dr. Kinderlehrer: It is amazing. It was also a bit of beginner’s luck. He subsequently saw two more patients with similar histories and he published that. And then after he published that, I wrote this article on Lymedisease.org, and then it got a huge amount of attention. We’ve learned a lot since then, because I’ve treated over 100 patients. There really are quite a few doctors who are using this Disulfiram. I would say two things about it. One is, it is a breakthrough drug, particularly for Lyme and babesia and, it’s a dangerous drug, both. People can really get into trouble.
We get this false sense of security because this drug has been around since 1949 when it was approved for use for alcoholics, because what it does by inhibiting the breakdown of acetaldehyde, which is a breakdown product of alcohol, it causes major hangover reactions. And so, if an alcoholic is willing to take it, then it’s a disincentive to have just one drink because it will really not feel good.
Well, it’s been around for what, 70 years? And there really haven’t been a lot of toxicity associated with it. And yes, there’ve been reports here, but not big series compared to other drugs on the market. It had a pretty low side effect profile. However, it turns out that people with Lyme Disease do not tolerate this drug nearly as well as alcoholics. Go figure. But it turns out, think about it, alcoholics, at least until develop end stage cirrhosis, probably a better detox systems, because how many people with chronic Lyme do you know who could drink a beer or two without feeling it? I mean, most of my patients can’t-
Mimi: I can’t. I’m in bed for a couple of days.
Dr. Kinderlehrer: There you go. The detox systems of alcoholics allow them to overindulge.
Mimi: I was wondering why. Because, I was attempting to start it. You’re only allowed to take a fraction of a pill. But when you get it from CVS, they’re giving you instructions as if you’re an alcoholic. So it says, take two tablets in a day, but your doctor tells you, “No, no, no, you can only take a quarter. And then the next day or three days later, you increase it.” So I was wondering well, why can’t I just take two pills like an alcoholic? Why does it work.. So that’s why I didn’t know. Interesting.
Dr. Kinderlehler: There was another reason because you might have the mother of all Herxheimer Reactions. This drug can cause really major Herxheimer Reactions. I have patients who tolerate full doses of antibiotics without trouble, but Disulfiram really kicks their butts. And that’s the reason we start on low doses.
So there are two main issues. One is the Herxheimer Reactions and the other is neurotoxicity. There are a whole bunch of potential side effects, but the significant ones are neurotoxicity, both peripheral and central. So peripheral, it can cause nerve damage and people will say, “Whoa, whoa I’m starting to get pins. and needles sensations or burning stabbing pains,” and that’s nerve inflammation and that can be a direct, toxic effect of Disulfiram. Actually, Disulfiram metabolites. And it can also cause central, that is encephalopathic brain toxicity. In which case you can get anything from cognitive complaints and severe headaches and fatigue to serious mood disorders, including depression, anxiety, and manic behavior. And-
Mimi: I only took it for two days and I was crying and depressed so I just got off of it. I was like, this is not working.
Dr. Kinderlehrer: Yeah. So not for you. That’s, what’s really important. Dr. Liegner did a survey of 70 patients and he described that I think first at a conference this past September at ilabs, and at another conference, and now it’s been published. I talked with Ken about this because he had A, pretty high success rate with the drug and B, very low toxicity and good tolerance with the drug. And, we went through his numbers and I said, “Ken, I have a different population of patients than you do. I have patients who on the smallest dose have major Herxheimer Reactions. We just can’t get anywhere.” When I say the smallest dose, I mean, an eighth of a pill or less. The pills are 250 milligrams. An eighth of a pill would be 31.25 milligrams. And I have patients who develop neuro toxicity on those doses.
I have a patient who on an eighth of a tablet, every three days was feeling great. But within two months she had developed neuropathy and he wasn’t seeing that. So it’s true that different doctors see attract-
Mimi: See different things.
Dr. Kinderlehler: Different populations of patients.
Mimi: So what do you typically go for? What’s your typical go-to treatment for Lyme patients?
Dr. Kinderlehrer: Well, as you may recall in the book, somewhere in the book, people invariably asked me, how do you treat Lyme Disease? And my answer is, “I don’t. I treat people and they’re all different. I don’t have a cookbook.”
I would say, if we’re talking about a general strategy, the first thing I do is look at infrastructure. I want to know whether they have any significant hormonal disruption. Do they have food sensitivities or chemical sensitivities or living in a moldy environment? Do they have mold toxins? These are things that not only contributing to symptoms, but are actually going to get in the way of treatment so we need to address these things.
And, it’s just different with different people. Some people I suggest we start on some antibiotics. I would say in general, I’ll start treating the Lyme first and not the co-infections that we find that hitting the low hanging fruit, Lyme generally easier to treat than the BC of Bartonella mycoplasma with the more common co-infections. And, when we treat the Lyme, then it’s easier to treat the co-infections. I’ve had sometimes a patient come to see me a new patient, and we start off. I say, “It looks you have Lyme and Babesia but we’re just going to start treating the Lyme and see how that goes. When they come back, not only is their Lyme much better, but their Babesia is much better too. And we think that’s because their immune system has recovered somewhat from just knocking the Lyme so then now their immune system is doing a better job on the Babesia.
So I usually start treating Lyme first. Very, very important is I just start treatment one thing at a time. I’m very, very careful and I never start two things at once. We want to know A, how are they responding, B, how are they tolerating? Are they herxing? If it’s a bad herx, I’ll cut back. I don’t believe in herxing, which is not to say it doesn’t happen, but rather, I don’t believe it’s good for you. It’s really bad. It’s creating a whole lot of inflammation in your body, which is the main problem to begin with. So I’ll do everything I can to mitigate Herxheimer Reactions, which means we’ll slow down the regimen.
So if I’m starting people on antibiotics, we’ll usually start on a low dose of antibiotics and slowly increase that and then go to the next antibiotic and using combinations of an intracellular, which would mainly be a macrolide like Azithromycin, Zithromax or Biaxin which is clarithromycin often adding to that hydroxychloroquine, which can actually improve the efficacy of the intracellular antibiotics, and then adding an extracellular antibiotic like a cephalosporin or amoxicillin or Augmentin. So basically we’re hitting it from a pincer move inside and outside the cells and, making sure we’re dealing with those infrastructure issues and making sure they’re getting plenty of probiotics. They’re getting anti-yeast agents to prevent yeast overgrowth.
But, let’s say a patient seems more fragile. And many of my patients really have been sick for years, for decades even and they are fragile, I might not go with antibiotics initially. I might start with some biologicals like cemento. I really liked the combination of cemento and Banderol, which as you know are from Nutrimetics. Again, starting one at a time and starting slowly. It sounds bizarre, I think to mainstream docs, but the Lyme docs have seen this over and over, which is some people you give them one drop of these extracts and they have a major Herxheimer Reaction. And if that happens, usually I just give up on it right there. I used to try to have people take just such tiny amounts, but we never got very far.
I have a lot of patients, a significant subset of patients who just don’t tolerate botanical anti-microbials. We try to give them super low doses and they hurt, but do tolerate pharmaceutical antibiotics. So it’s always trying to figure out what works for this patient. Ideally though, I get people on both the pharmaceutical and the botanical antibiotics, because they seem to hit the bugs from different directions. And then, once we can get people into remission, then withdraw the pharmaceuticals and just keep them on the natural extracts for a while.
Mimi: And typically Lyme and the co-factors have a three month is it life cycle or is it longer?
Dr. Kinderlehrer: No. You have to separate them out. The BC we mentioned before in relation to my own history is usually a one to two week cycle player that symptoms can suddenly flare and get better and suddenly get flare. And people might notice that with Babesia, particularly in terms of night sweats and shortness of breath and waking up with anxiety and so on. Lyme more has about a four week cycle. And in women, it usually coincides with their menstrual cycle.
RECOVERY FROM LYME
Mimi: So that’s kind of why it gets worse. So could we talk about your book? You have it coming out, so when is that launching?
Dr. Kinderlehrer: March 16th. That’s what I’m told.
Mimi: That’s my daughter’s birthday.
Dr. Kinderlehrer: It’s also my ex wife’s birthday, which I thought was interesting.
Mimi: Can you tell us a little bit about it and why you decided to write a book?
Dr. Kinderlehrer: Yeah. Since you’ve seen a PDF of my book, I assume, I’ve had a lot of experience. I was trained in internal medicine, classic internal medicine. But then when I finished my training, I didn’t want to be an internist because internists generally just treat end stage disease and they don’t cure anybody. And I grew up in a household… My mom was food editor of Prevention Magazine for 25 years. Now back then prevention magazine was not the slick rad that it is now. It was the only place you could get information on nutrition. How to order your vitamins through mail order and so on. So I grew up taking vitamin C and only having a whole wheat bread and we did not have soda pop in the house and so on. I would go to my friend’s house to get peanut butter and jelly on white bread.
My mom was always drilling home that nutrition is important. Not anything I learned in medical school and nothing I learned in internal medicine training, but it’s a very weird paradoxical thing. I was just talking with a good friend of mine, a doctor about this, but so in addition to doing an internal medicine residency, I did a chief medical residency and this was at a Columbia tertiary referral hospital and seeing very, very sick patients as a chief resident, what was my job? It was actually consulting on the sickest people in the hospital.
So here I am, I’m among the best and brightest in the hospital because I gleaned the most out of the sub-specialists and I’m treating the sickest people, most of whom hardly any, are going to make it out of the hospital, let alone be alive. The rest of the year, they have serious end-stage illness. And I’m so smart, I have so much information and that’s the result. And I’m thinking, “wow, if I could help 10 people stop smoking, I’ll have it done more than I’ve done for all these ICU patients.”
When I finished my internal medicine residency, I opened a practice and that I called nutrition and preventive medicine based on what I learned from reading prevention magazine and the handful of other doctors, there are really only a handful of us practicing what was then called holistic medicine and it has since morphed into what’s now called integrative and functional-
Mimi: Functional, yeah. Because, I remember 25 years ago I was trying to find a functional… I was following Dr. Mark Hyman and I tried to find functional medicine doctors and people were like, “What are you talking about?”
Dr. Kinderlehrer: Exactly. At any rate, what happened was I started seeing people who had fallen through the cracks. I thought I would just see people like how do I stay healthy or what can I do to get off my blood pressure medication in terms of lifestyle? But what I was seeing was people falling through the cracks. And then, I developed expertise, not just in nutrition, but in environmental medicine, I took thousands of people through elimination challenge diets. And we dealt with all sorts of the functional complaints like their pancreas not making enough enzymes, their stomach lining not making enough hydrochloric acid and on and on and on.
The point is, I have this very strong background in integrative medicine that I developed from the early days when there weren’t that many of us, and my practice was doing medical detective work in people with chronic illness. Then Lyme comes around, it beats the crap out of me. And when I finished, when I finished, I don’t know that I’m ever finished. When I recovered to the point where what I want to do is I want to help as many people not go through what I’ve gone through because it’s terrible.
Mimi: It’s awful.
Dr. Kinderlehrer: So that’s when 20 odd years ago, my practiced became limited to seeing people with tick-borne infections. But I’m bringing with it just a whole lot of experience in nutrition and environmental medicine-
Mimi: Which goes hand in hand with Lyme, right? I mean, you’re not going to get better unless you deal with that. And that’s what I tell people now. If they call me and I’m like, “You have no money to go see a doctor, you can do a lot of it at home. Change your diet stat.” I wish I had done that six years ago.
Dr. Kinderlehrer: You’re right. You’re absolutely right and that’s one of the reasons I wrote the book. So bottom line, what I’m getting to, I realize this is a very long story is that I’ve basically accumulated a whole lot of experience in my 40 years of practicing medicine. Up until COVID, I always had people training with me. I had doctors and nurse practitioners from all over the country coming and sitting in with me as I evaluated patients. And I love it. I love teaching. But I also realized from their feedback that I had a whole lot of information to pass on because of my years and years of experience in these different fields.
I realized, well, now I’m 71 years old. I think I ought to write this down. And the good news is, I really enjoy writing. I think I inherited that gene from my mom who wrote about a dozen books. The last one I co-authored with her. And it sounds like, wow, this book must have been a lot of work, but, because it did take years and you’ve seen it. I mean, it goes into huge amounts of [crosstalk 00:44:46]-
Mimi: It’s a lot technical… yeah.
Dr. Kinderlehrer: Over 400 pages. In a way, I feel like it wrote itself. It just really flowed. The process really flowed. I really enjoyed writing it and I have continued to be writing articles and stuff like that.
The point of this book was first of all, passing on this information to physicians. It’s really written, as you’ve seen with enough detail to say, here’s when you should be considering these problems, here’s how you can work it up and here’s how you can treat it. But it’s in language that’s available to lay people who, as you suggested can do a lot of this stuff themselves. Or they can also take this chapter of the book to their physician and say, “I think I have this problem here. Can you order these tests?”
I’ve received wonderful feedback from the multiple people who have seen it, who’ve commented on it, some whom have helped me edit it. And I think this book is going to go a long way to helping the Lyme population, as well as just substantiating the reality of Lyme Disease complex. Going back to what we were talking about before that chapter on anatomy of the Lyme Wars. I think it just really knocks it out of the park in terms of [crosstalk 00:46:08]-
Mimi: Well you covered so much too. I mean, I just know from reading. You just went down, I’m going through the list, I’m like, okay, I have that. I have that. I have that. Because of the mold, I have very high sensitivity to mold. I have high sensitivity to gluten now and I never used to. It just went down the list of like smells. I can walk into a room and, my daughter lit a candle the other day and I walked in and I started breaking out in hives immediately. So it was just exactly what you’re talking about. And I was okay, I’m not going crazy. And so now when a doctor asks me, what’s that feeling that you call? When he says, “Tell me what’s going on in your body?” I’m like, “I don’t know. It’s this tingling feeling throughout my body.” I can say, “Look, it’s right here. You called it myo skeletal something that you called it. I’m like that’s exactly what I’m feeling. So it was nice to validate and put into words what I’ve been going through.
Dr. Kinderlehrer: I was aware of that as I was writing up case histories, with thinking about how many people are going to be able to identify with this 23 point symptoms that the people are presenting with. And, not A, think they’re crazy or B, the doctors think they’re crazy. No, this is real. There’s a lots of other people that really have the same multitude of symptoms and you’re not crazy.
ADVICE FOR AT-HOME STEPS TO FEEL BETTER
Mimi: Just to end it, what piece of advice, if you were to give anybody who is going through Lyme right now, if they could do something at home right now while they’re waiting to either get into a doctor, because the wait list is usually long or they don’t have the money to get there, what would you say that they can do from home that’s the most beneficial?
Dr. Kinderlehrer: It’s a good question. As we mentioned in the beginning, every patient’s different, even if we have the same labels as you have Lyme to BC and Bartonella and say adrenal insufficiency, it doesn’t mean you’re going to respond to the same things as the next person who has those same labels. I do recommend getting the book and being able to pinpoint, here’s where I think I have some imbalances. I can really connect with this description and start to address them.
I think certain things that people can do at home first of all, as you mentioned is diet. Everybody has to get off sugar and alcohol. I just had a patient. I talked with yesterday. He developed bipolar disorder from falling over off her diet. I mean, she was manic and depressed. Both happened Thanksgiving, when she went off her diet and then couldn’t stop. So lots of sugar, lots of alcohol.
The most common food sensitivities I see are dairy, eggs yeast and gluten. Those are the most common ones. And like you, most of these people did not have food sensitivities before they got Lyme. Lyme results in issues of multiple sensitivity disorders and mass cell activation. So these are things you can read about and say, wow, I can take this stuff and it’s going to help. So people can read about diet and make appropriate changes. They can read about different issues with the gut and find, maybe I need to add some enzymes or some betaine hydrochloride based on my symptoms. And then it will be a trial and error basis maybe. This looks I need some adrenal support.
And then, there are herbs, people can buy them on the internet where I say, well, here’s how you can take them. And to start to go after the Lyme and then of the BCA and then the Bartonella. There’s an awful lot of things patients can do on their own if they’re properly educated and that’s what I’ve tried to do in the book.
Mimi: Yeah. That’s great. Thank so much for your time. This has been amazing and very informative and I could talk hours. I feel I still have so many questions, but there’s only so much time, but thank you. This has been great. I really appreciate it.
Dr. Kinderlehrer: Thank you for this opportunity.