Dr. Joe Burrascano: A Masterclass on Tick-Borne Illness

Ticktective Podcast Transcript

In this episode of Ticktective™, host Dana Parish interviews Joe Burrascano, MD. Dr. Burrascano is a pioneer in the field of Lyme disease, having treated patients since the early days of the illness in the 1980s and 1990s. He co-founded the International Lyme and Associated Diseases Society (ILADS) to help train clinicians in treating Lyme and associated tick-borne diseases. Dr. Burrascano discusses the challenges in diagnosing and treating Lyme, including issues with the limited testing criteria and the chronic, multisystemic nature of the disease. He outlines his approach to treating early Lyme with a “hybrid” antibiotic regimen, as well as the use of pulsed and cycling antibiotic therapies for chronic cases. He also highlights the importance of addressing underlying health factors like immune dysfunction, toxin buildup, and co-infections like Bartonella and mold toxicity in chronic Lyme patients. Dr. Burrascano emphasizes the need for a holistic, patient-centered approach to managing complex, persistent tick-borne illnesses.

“If you have something that’s every part of your body is bothering you, and it comes and goes and it moves around, of course, you’re going to be labeled as a little bit cuckoo. It’s not. It’s Lyme disease.”

– Joe Burrascano, MD

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 host, Dana Parish, and I’m the co-author of the book Chronic, and I sit on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with scientists, clinicians, patients, and other interesting people. We’re a nonprofit 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 prevention programs. For more information about Lyme disease, please visit us@bayarealyme.org.

Dr. Joe Burascano is a Lyme legend. If you don’t know about him, he is a pioneer in the field of Lyme. And personally, his Lyme checklist saved my life in 2014 when I was so, so sick after a tick bite, and I just wasn’t getting better with a few weeks of antibiotics. It was because of him that I finally got my diagnosis and was able to recover. So many of us share that same exact story. His knowledge is brilliant. He was a founder of ILADS. He has treated so many patients over the last 30-plus years and gotten so many people better. I’m so grateful to have finally been able to do this interview and bring you this information today. I think it is as important for clinicians as it is for patients, so please make sure and share this information with your doctors. They need to know what they don’t know about Lyme and associated diseases. I’m so happy to see you today, Dr. Burascano. Thank you for doing this with us.

Joe Burrascano: Thank you for inviting me.

The Importance of Dr. Burrascano’s Lyme Checklist

Dana Parish: You hold so much knowledge that it’s a real thrill to be able to share this with people. I’d like to start by telling you something you may not know. Your Lyme checklist saved my life. I’ve talked about this many times and talked about it in our book and on Dr. Oz, but I don’t know if you actually know that. So thank you. I had about 39 of the 60 symptoms on your list, and 12 doctors had told me I didn’t have Lyme. I knew it was something in that vicinity. I had a tick bite that went untreated for two or three weeks, and then I was in heart failure five months later, and I was healthy before that. But I had everything else in between, all the things that you’ve talked about many times and treated many times. So I just want to start by saying thank you for that checklist. And so many people have written to me over the years since I’ve said this, saying the same thing for them. So that was such a gift.

Joe Burrascano: Well, I’m glad it worked. Can I tell you how that whole thing started? I began seeing Lyme very early in the history of Lyme in the United States, and it was so new to so many doctors, but somehow the word got out that I knew about Lyme, and so I’d be in the middle of my busy practice, so crazy busy, wouldn’t have time for lunch or even a bathroom break, and the phone would ring. It’d be a doctor saying, “I’m desperate. Tell me everything about Lyme because I have a patient here. How do you diagnose and treat it?” I didn’t have time for that, and it would happen again and again, several times every day. So I said, “All right, I’m going to write it up. I’m going to make a monograph.” So if someone called, I’d say, “Wait, get me your address. I’ll mail it to you.” This was before the days of email and computers. And so I made that monograph, and over the years I expanded upon it, and that’s how it became what it is today. What’s interesting is that old timers like me, it’s funny, they used to be the new kid on the block, but the old timers like me nowadays don’t know of that document. And yes, it’s kind of outdated in some ways, but it’s really not in a lot of other ways because it gives you the basics. And I think more people should be looking at it. And I haven’t updated it, and I probably won’t, but it’s still something that a lot of new doctors are coming into, not just doctors, nurse practitioners, PAs, and other naturopaths where they’re allowed to practice. They need the basic background. And I think that supplies it. The questions haven’t changed, the illnesses haven’t changed. The treatments have a little bit, but still, the kind of basic thing that you need as the root of what you do when you study Lyme disease.

The Inception of ILADS and Early Treatment Guidelines

Dana Parish: It’s true. And I also know that you wrote the early treatment guidelines. You were a founder, a co-founder of ILADS, which is the International Lyme and Associated Diseases Society, for anybody who is new to this topic, and it has just been a godsend to patients and clinicians, physicians who are treating patients with Lyme, but to Lyme patients, tick-borne disease patients. Can you tell me a little bit about the inception of ILADS?

Joe Burrascano: We were bucking the trend. ‘We’, meaning the Lyme-literate physicians, and we saw patients, the buck stopped at our desk. It wasn’t like you went to a specialist. They said, “Oh, we’ll give you something. Goodbye.” Then you go back to the primary care doctor and say, “Whatever they gave me didn’t work.” Well, we were, in many cases, primary care doctors for our locality. And in my case, I was practicing in the area that had the highest case rate of Lyme in the world at the time. And when they did tick surveys, between 80% and 100% of the ticks that they analyzed contained Lyme disease. So it was so prevalent.

Dana Parish: You were on Long Island, correct?

Joe Burrascano: Right, Eastern Long Island, the town of East Hampton. And this started happening probably in the mid-1980s, ‘84, ‘85 is when we really got into it. Anyway, so there were a few of us, and interestingly, I was here on Long Island on the East Coast, and I had colleagues on the West Coast and in the Midwest, and we’d get together and they’d say, “Wow! I’m seeing the same thing as you.” And we were amazed. So that’s how this whole thing got started, and we realized we needed to have some kind of a professional organization that was run by clinicians for clinicians with the ultimate goal of training them and getting them certified as being, I guess you’d say, Lyme-literate. We didn’t have a term like that at the time. That’s how ILADS got started. So we realized we needed to train the physicians, but also a means of protecting them to legitimize what they’re doing.

Dana Parish: So, what was the story at that time with other guidelines? Were there yet any guidelines written? Did the Infectious Diseases Society of America (IDSA), or did the CDC, put out anything?

Joe Burrascano: Well, there’s no official guideline per se, but there were recommendations on CDC websites, for example. And they usually dismissed the whole thing. Lyme was a simple illness, very difficult to get, and very easy to treat and cure. And anyone who went beyond that had a ‘yuppie flu.’ They were Lyme crazies. They tried to minimize Lyme and minimize us who tried to treat the people properly.

Dana Parish: Why do you think that was? Because when I went back and read early interviews in early news stories like Newsweek cover story on Lyme in 1989, New York Times, LA Times, they did these amazing early pieces, and then something changed. What do you think happened where there was this huge turnaround in taking it as seriously as it should be taken?

Joe Burrascano: Oh my God, I don’t know. In the beginning, I didn’t really know. In the beginning, we thought that, well, it’s because the people in power had patents on the testing, and they didn’t want to inhibit their returns, and they had prominent positions in their universities, so they didn’t want to lose grants, and so forth and so on. And going even further back, when Lyme was first described in Lyme, Connecticut, it was originally thought to be an autoimmune disease. And the reason why is that the researcher they sent was an immunologist or rheumatologist. So that was the thinking when it came out to be an infectious disease. When Willie Burgdorfer discovered the spirochete, the problem was already there because the funding had already been put into the arthritis branch, not the infectious disease branch, and the power base was in the arthritis branch, and that’s how it was. So our thinking back then was that they didn’t want to lose their grants, saying that Lyme was an autoimmune disease or that it was simply treated with a few weeks of antibiotics. And what was left was this new mysterious condition, which no one had ever had before, called post-Lyme syndrome.

And to us in the clinical field, it was ridiculous because if people came in with a certain set of symptoms, you treat them for a few weeks with what they recommended, and they’d come back and say, “Well, I felt a little bit better. But exactly the same thing has come back.” So you give them a few more weeks of treatment, and they say, “I felt better. But the exact same thing came back.” We said, “Well, something is not right here.” That’s when I started to do my studies, looking at drug dosage and duration, and different types of drugs. That’s how the whole guideline thing came up.

Dana Parish: That’s so interesting. Were you already in the field of medicine, aware of Lyme? I mean, there are certain infections that I guess are known to be chronic, but were you already talking about it in those terms? Is this thing going to go away? Can you ever clear this organism?

The Challenges of Diagnosing and Treating Lyme Disease

Joe Burrascano: I would say yes, because how far back do you want to go? But in the very beginning, we didn’t know what Lyme was. We knew it was a spirochete. So we said, “Well, let’s treat it like syphilis.” We gave penicillin, plain, oral penicillin V, for 10 days. It didn’t do anything. So one of my colleagues, Dr. Bernard Berger, who’s a dermatologist in town and did a lot of work with EM (erythema migrans) rashes, said, “I think we should try a different drug. How about amoxicillin?” So we tried amoxicillin, and that worked better, but the 10 days didn’t do anything. And then we tried 14 days, and that really didn’t do anything. So then I did a study using amoxicillin, and I treated people for one month or six weeks, or two months, or 3, 4, 5, 6 (months), using the same dosage for everyone. And it turned out that the longer you gave the antibiotic treatment, the higher the chance of successful treatment.

“It turned out that the longer you gave the antibiotic treatment, the higher the chance of successful treatment.”

– Joe Burrascano, MD

Now, the other fly in the ointment was: What was the definition of success? Now this is the real killer, and this is the basis of the whole controversy. In the beginning, the group at Yale and those who did the studies on early Lyme, they defined success as the elimination of what they called the major symptoms of Lyme. They defined the symptoms of Lyme into major and minor. Major was Bell’s Palsy, carditis, and the rheumatoid type of arthritis. The minor symptoms were everything else: the headaches, the fatigue, the brain fog, the tingles, and all the other things. So their definition of success was that they gave a treatment, and the major symptoms would go away. But if you look at the literature, in fact, their own literature, if you didn’t treat Lyme at all, 95% of the time, the Bell’s Palsy went away. 95% of the time without treatment, the carditis—at least the heart block—would go away. And only 5% of people with Lyme get the rheumatoid type with swollen joints and water on the knee, for example. So their definition of success was that it would go away and whatever was left behind, they said, “It can’t be Lyme. It’s post-Lyme syndrome.” But me, in my practice, and my colleagues too, we didn’t believe that. My definition of success was to have all of that go away, major and minor symptoms. I didn’t divide it up, but I used that terminology. For me, all the symptoms had to completely go away and not come back at all for at least three to six months.

And so, using that definition, I found that you needed longer and longer treatment. So again, I found one month of treatment with amoxicillin plus probenecid—that’s a drug that boosts amoxicillin levels to make it stronger—one month of treatment had a 17% success rate based on my definition of not having the original symptoms come back. Then it went higher and higher, and it would plateau for men at four months and women who had active hormones at six months, and the plateau was about a 65-67% success rate. So those people got over it and never came back. 

Now, the sicker people would need either longer treatment or intravenous therapy. And again, the duration of that was based only on clinical response because we didn’t have testing to show a cure. And again, if you got them to the point of being completely free of all symptoms for several months, usually three months if not more, then they stayed well. And if they remained well for three years, which most of them did, then they would never relapse.

Dana Parish: Were you combining antibiotics or antimicrobials back then?

Joe Burrascano: In the very early days, we did not. But then, as we saw things getting more difficult, we started to do that. And in the beginning, we used amoxicillin and erythromycin because we didn’t have any advanced macrolides. And we know that doxycycline wasn’t a good choice because doxycycline is bacteriostatic. It inhibits the germ. It doesn’t kill it like penicillin does. And the dogma has always been this: You don’t mix a bacteriostatic drug with a bactericidal drug because if you inhibit the bactericidal drugs like penicillin, they kill the germ while it’s growing. So if you put a drug in with doxycycline that stops it from growing, and if you add the penicillin, it doesn’t do anything.

Dana Parish: I see.

Joe Burrascano: So that was the logic of not combining penicillin or penicillin-type drugs with doxycycline. So we used erythromycin, and then the newer ones came out, azithromycin, erythromycin, and others.

Dana Parish: You said that when people were extremely sick, you would use IV. Do you look back and think, well, maybe these people had other infections that came along with Lyme back then?

Babesiosis as a Co-infection with Lyme

Joe Burrascano: Nowadays, it’s very rare to see babesiosis by itself. It’s usually a co-infection, a concurrent infection with other tick-borne diseases. But we had an outbreak here on Eastern Long Island, I think it was in August. It was late summer, I forget how many, but over a dozen, maybe two or three dozen people came into my office with acute babesiosis and no Lyme, just acute babesiosis. And they had the classic signs that we recognize now as babesiosis.

Dana Parish: What were they for people who are new to this?

Joe Burrascano: They would be sweats—day and night sweats, a strange kind of dizziness without vertigo, where people felt tippy, they were off balance and would fall without actually having vertigo, without even low blood pressure, and a sense of air hunger where they couldn’t really catch their breath. Even just speaking on the phone, they would run out of air, not just exerting themselves.

Dana Parish: Terrible

Joe Burrascano: And brain fog and fatigue and so forth, and no joint involvement. So that was the other thing.

Dana Parish: Interesting.

Joe Burrascano: So I found this large group of patients out of the blue, and you can talk to theorists about whether these ticks dropped from some laboratory. I don’t want to get into that, but somehow all these people had babesiosis. Now this is what’s interesting: People with just babesiosis—and again, at the time, we didn’t have treatment for it—if you did nothing for about six weeks, they all got better, and it went away.

Dana Parish: Interesting.

Joe Burrascano: If they had Lyme or if they didn’t have a spleen, they would be really sick, and they would need treatment. And what treatment we had then, the quinine drugs didn’t work. So we had to use a drug called Pentamidine, which was a horrible drug. You had to get it directly from the CDC. It was an injection. It caused people to damage their pancreas, and they became Type 1 diabetics from it. So it’s a terrible drug. But that’s when we started to become aware of this co-infection thing. So that made me aware, “Oh. These are the signs of babesia separate from Lyme disease.” So I was able to sort them out now because of that. Then, later on, it became pretty clear that there was something else going on. And that was what became Bartonella.

Diagnosing and Treating Bartonella

If you look at my early writings, there were things about bartonella that were different from classic cat scratch disease. In my writings, I would call it BLO: Bartonella-Like Organism, because they said it was like Bartonella, but a little bit different. And the treatment for Lyme inhibits Bartonella, but doesn’t really kill it in most cases. So, the classical story is that you treat the Lyme, people improve to a point, but they have ongoing symptoms that are a little bit different from Lyme. And if you stop the Lyme treatment, and this is another key, if you stopped the Lyme treatment too early or if you just stopped it and they still were having symptoms, it would take three to four weeks for the symptoms to start to come back and flare. Because Lyme germs grow slowly in monthly cycles. Bartonella moves much more quickly. So if someone stopped treatment and they said by the end of the week, I was sick again, I knew that couldn’t be Lyme because Lyme doesn’t move that quickly. I thought, well, that’s the Bartonella-like organism. I saw the Lyme medications inhibit it, but didn’t kill it. And then the whole work started on Bartonella.

Dana Parish: What were the symptoms that were specific to Bartonella that would raise your red flags?

Joe Burrascano: Well, the main thing about Bartonella is that it’s a toxic, excitatory infection of the nervous system. So in other words, people who never had trouble before would suddenly have anxiety attacks, panic attacks, shaky shakes, tremors, pseudo seizures—and even real seizures—terrible insomnia, and different kinds of brain fog. Lyme affects the joints by infecting the lining of the joint, the synovium, but Bartonella affects the ligaments and tendons that support the joint and encase the muscles. So it’s a little bit of a different picture, and I always insist on seeing the patient in person. We couldn’t do telemedicine then anyway, but I nevertheless would never do anything by phone. You had to come in because I wanted to examine the joints. Was it a swelling in the joint? Was it more in the ligaments and tendons?

Another thing Bartonella does, it can infect the stomach just like H-pylori. So we saw people with ongoing ulcer-type symptoms or mid-abdominal pain because the lymph glands in the belly were infected. Those are signs you don’t see with Lyme. And finally, Bartonella is known to cause swollen lymph glands, which Lyme doesn’t do, nor does Babesia. I had one very well-documented patient who was a young man diagnosed with lymphoma and was about to get chemotherapy, and he got to see me. We found the Bartonella-like whatever it was, and I treated him with a Bartonella regimen; it all went away, and they changed the diagnosis. No chemo.

Dana Parish: Oh my God, that’s incredible. I have a few case reports too about breast cancer, where Bartonella mimicked breast cancer, and I had a mammogram one year at Mount Sinai, and I was sort of new in the Lyme world, and I was excited about learning all this stuff in the beginning. I mean, I’m still excited about it, but I was just learning everything that I know now. And I showed the doctor this study, and she was so interested. She was like, “I’m going down the rabbit hole. This is fascinating.” These stories need to be told. My first symptom was an inflamed and extremely painful breast. So my internist looked at me and she turned white. I’ll never forget her face when she saw and she felt that just my tissue had changed right here. And it felt like she kept calling it like beads. It felt beady.

Joe Burrascano: Oh, that’s exactly right. That’s one of the ways clinically, I would diagnose it. If you were to examine someone with Bartonella, and you run your fingers along the outer thigh or the under surface of their arm, those are called the extensor tendons, the fascia. The fascia is a kind of ligament that spreads out over the muscle. If you run your finger deeply, you’d find tender nodules all up and down, and that’s Bartonella. And if you treat the Bartonella over time, the nodules stay there, but they don’t get tender anymore. And over time, the nodules go away. So wherever you have ligaments and tendons, it could be the breast, it could be the arms, anywhere. If you have those tender subcutaneous nodules, it’s not only Bartonella, but at least you start to think along those lines.

Dana Parish: Nobody has told me that before about that tissue, and my internist has asked me about it many times over the years. She was my long-term internist, so luckily, I didn’t get the “Oh, are you crazy coming in with all these symptoms?” She wanted to help me and figure it out. But she sent me to an oncologist that day because she was part of Mount Sinai in this big hospital system. She could just make a call, and she could be like, “Walk down the hall. I got you an emergency appointment.” And the doctor was so nice, and he examined me, and he’s like, “I totally agree that it’s swollen. I can see that you’re in pain. I’m not questioning it, but it’s not breast cancer, and that’s all I do. So you can go now.” But it looked like it to the average doctor who may not be a breast surgeon. So it was very, very interesting.

Joe Burrascano: So it’s not clear that Bartonella can cause breast cancer. I don’t think that’s ever been proven. However, if breast cancer is present and someone has Bartonella, the cancer can spread along those nodules along the lymph drainage and cause what’s called inflammatory breast cancer. And Edward Breitschwardt, MD, who’s the world expert on Bartonella, has published articles showing that if you have a person with inflammatory breast cancer and you do the biopsy, you find Bartonella there. So Bartonella does these nodular things, which are probably in the lymphatic tissue, the drainage, and it allows the drainage of the tumor to go there. Also, Bartonella, for some reason, causes an elevation in some people of what’s called VEGF, Vascular Endothelial Growth Factor. It stimulates the growth of blood vessels. That could be why Bartonella patients often get those red streaks. Well, cancers can do VEGF too. So if you have a cancer and an infection both causing spread through the blood vessels, then of course you get a worse condition.

Why Bartonella Infections Persist Despite Lyme Treatment

Dana Parish: I have to ask you about treating Bartonella, as it is such a hot topic, and it’s such a huge, difficult infection sometimes to treat, and it’s so often mistaken for just Lyme. So what are your current recommendations for Bartonella?

Joe Burrascano: Well, that’s very difficult. Remember, I said that Lyme treatments, some Lyme treatments anyway, will inhibit but not kill Bartonella.

Dana Parish: Sure.

Joe Burrascano: So if you think about the drugs like the cephalosporins, like Rocephin, or even Ceftin, which is oral, they will kill Bartonella, but only when they’re not within a cell; they have to be freely circulating in the tissue, in the fluids, and the bloodstream. So that’s why Lyme treatments will put a lid on Bartonella, but not get rid of it. Could be intercellular, right? The germ gets into the cells, so you need a second drug to get into the cells. Now, the tricky part is that if you only use a drug in the cells, you don’t have enough in the fluids. So even though the person may or may not have Lyme, I would always use a cell-wall drug like a cephalosporin to keep the bloodstream covered and then use something for inside the cell. Now, in the early days, what we used to use were the fluoroquinolones. Levoquin now has a very bad reputation because it can cause damage to tendons and so forth. But it really is good to get rid of Bartonella. When you combine that with the cephalosporin, it’ll wipe out the Bartonella very quickly.

Luckily, I had very few patients who had side effects from them, but I wanted to know what was going on. So I called the scientist who developed this drug, a German. I called Germany. He said, “The problem is that the tendinocytes, the things that make the tendons, the cells that create the tendons, the tendinocytes themselves are ill or infected with whatever’s causing the problem.” And so part of the treatment was to kill the Bartonella. Another part of the treatment was to use a high dose of vitamin C, which helps to build collagen and somehow inhibits Bartonella itself. So that’s how we started.

Dana Parish: So, what does Bartonella do to collagen? What does Lyme do to collagen? I think this is a big mystery to a lot of people.

Joe Burrascano: Lyme germs love collagen, and they love hyaluronic acid. And these two chemical compounds are what make up our connective tissues, the lining of our joints, the tendons, I mean, basically the non-bony skeletal structure of our body. And they’re attracted to that. And if you remember, years ago, there was a laboratory called Advanced Lab that had a blood culture for Lyme disease. It was very, very successful. The lab closed because they kept losing money, and every single test was such a complicated test, but the only way they could get the borrelia to really grow and to revert from cystic into spirals, where you could see them, was to put collagen in the test tube where the borrelia were growing. And they would grow on it. On the surface, it was very complicated. Could spend an afternoon on it.

Dana Parish: What are the other conditions? I had interstitial cystitis. I hear a lot of people talking about Ehlers-Danlos syndrome and different connective tissue disorders. What else are we missing?

Collagen Connection, Lyme in the Skin, Red Light Therapy

Joe Burrascano: Everything. I mean, you talk about diseases of the arteries, of the heart, of the skin. If you talk about the skin, I think that if you’re thinking about chronic/persistent Lyme, where you just can’t get rid of it, it’s my opinion—and I have no proof of this, but it’s just my opinion—that the skin is the final hiding place. And why do I say that? Number one, it’s full of collagen and elastic fibers and all the things that spirochetes love. Number two, spirochetes don’t like high temperatures, and the skin is cooler than the inside of the body. Third, it’s far away from the immune system and the blood cells and all that. So that’s, I think, the final hiding place for Lyme. And that’s why studies have been done using infrared saunas and high-temperature hot tubs, all these kinds of things. And I think if they work at all, they’re only working because they are getting the surface of the skin finally hot enough to dilate blood vessels, get the medications and immune system there, raise the temperature, and so forth. So that’s why it’s the collagen connection.

Dana Parish: You just blew my mind. That makes so much sense. And I go back to thinking about my early days of treatment. I did my more antibiotic, more strictly sort of antimicrobial stuff with Dr. Phillips. But then I did a Chinese medicine protocol with Dr. Zhang, who I’m sure you know, in his clinic, but they used to do infrared light on me and acupuncture every single week. And I used to have these big herxes, this red light, and I didn’t understand it, but they just told me, “Oh, this is good. You’re getting better.” And I accepted it because I liked them and I trusted them, and I trusted Dr. Phillips. And I was incrementally getting better for sure, but now I can imagine why that was. I never thought about it. Well, also, there’s been so much research in the last few years on red light therapy for every single inflammatory disease under the sun. And now I have to think about how many of those conditions may be microbial. And even the red light is, I’m not talking about infrared, I’m just talking about light therapies. I wonder if that’s playing any kind of a role in reducing inflammation and killing pathogens?

Joe Burrascano: Well, red light therapy is known to have beneficial effects on the cells of the immune system. And there are protocols for that. There’s a—I don’t know if it’s even on the market—but there’s a proposal to have, of all things, a red light you put in the nostril to get rid of seasonal allergies.

The Multisystem, Migratory, and Cyclical Nature of Lyme

Dana Parish: So I’ve heard you say many times that when you were first seeing Lyme, people came in with all kinds of weird things. Now I know from going through it that it couldn’t be more true. It is so weird. But what were the things that you were seeing? I know clinicians will watch this. I hope that they will take what you are saying really seriously into their hearts, and lights will start going on in their minds. What was the weird stuff you were seeing that was like, “Oh my gosh, what is this thing?”

Joe Burrascano: Well, the first weird thing, which isn’t weird at all, but very, very basic, is that Lyme is a multisystem illness. And when I say Lyme, I’m including the co-infections. And the typical story would be someone comes in with an atypical lupus, whatever that is, or atypical MS, or an atypical dementia, an atypical something. But at the same time, they had other things going on. So they ended up seeing the rheumatologist, then they saw the heart doctor, then they saw the dermatologist, then they saw the orthopedist, and then they saw someone else. And then they come to the primary care doctor, who says, “I don’t know, this person must be crazy. Every week, it’s a new disease.” But that’s exactly what Lyme does.

“Lyme has three cardinal clinical symptoms: It’s multisystem, it’s migratory, and it comes and goes in cycles.”

– Joe Burrascano, MD

Dana Parish: The hallmark of Lyme is hypochondria. I saw, I don’t know if it was John Drulle, one of the early Lyme pioneers, who had written an essay and talked about how hypochondria is a symptom, it should be a red flag that this person has Lyme, because they’re constantly complaining of migrating stuff.

Joe Burrascano: Well, that’s the basic of Lyme. Lyme has three cardinal clinical signs and symptoms: It’s migratory, and it comes and goes in cycles. So, multisystem, if someone had a swollen sore knee, but it was fine. Otherwise, I would say it’s probably not Lyme. But they have a swollen sore knee, and they have body aches elsewhere, and they have tingling and numbness, and they have confusion, and they’re tired, and other things are going on. They say, well, this is something multisystem. It’s not just a knee. It’s other things happening. That’s one thing. It’s multisystem. 

The second thing is that it’s migratory. If someone with untreated Lyme has a swollen knee, for example, it might bother them for several weeks to several months, and it’ll bother them with no treatment. It’ll start to diminish, but then a different joint will start to act up. And then that seems to get a little bit less. And then they start having tingling in the feet or in the face or somewhere else, and then they get profound fatigue. And then they have headaches week after week. And then that seems to diminish, and it goes back to the knee, which is why people start to think they’re crazy. 

And the third thing is, it has this cycle to it. Lyme germs don’t grow steadily like other bacteria. They grow in cycles. They’re in a family of relapsing fever for that reason. And typically, if you look at Lyme patients, the symptoms wax and wane on a four-week cycle. So if you have someone who keeps a daily diary, which I have all my patients do, you would see this clear four-week pattern. I remember one person said, “It’s the strangest thing, every four weeks, I get a sinus infection with these headaches and everything.” It’s not a sinus infection. It turned out to be Lyme.

Dana Parish: Yes!

Joe Burrascano: It’s multisystem. It’s migratory and it’s cyclic. And so if you have something that’s every part of your body is bothering you, and it comes and goes and it moves around, of course, you’re going to be labeled as a little bit cuckoo. It’s not. It’s Lyme disease. A patient gave me a button. Actually, it wasn’t a patient; it was one of the IV companies of all things, and I think I still have it. It’s a little button you put on your shirt. It says, “I’m not crazy. I have Lyme disease.” 

How COVID and Lyme are Connected

Dana Parish: Exactly. I try to impress this upon clinicians and people outside of the Lyme world, and I think that the COVID debacle has opened up their eyes to the fact that there are these pathogens, that the truth about their symptomology and their chronicity is not being disclosed to doctors, so they don’t know what to do. And then if they start doing stuff because they’re seeing it working or they’re getting great feedback from patients who are doing things on their own, and they start implementing, they get in trouble. I don’t know if you feel this way, but watching the COVID pandemic unfold, all the medical symptoms, all the political issues, it just seemed so similar to me. Did you have that thought?

Joe Burrascano: Yeah. And I don’t mean to make fun of Lyme, because it’s very unfortunate for the poor patients who have to go through this in their families and where they work, and at school. I mean, it’s tragic. And in some cases, it’s tragic for the clinicians because they throw up their arms, and then they realize after the fact that they did a bad job, and then they’re hungry to learn more about it. So it is a major problem. But that’s also why, back in the early days, it was the so-called ‘yuppie flu.’ People with Lyme didn’t have sickness. They were crazy because the government tried to minimize the whole thing. So now COVID comes along, and it’s affecting many more people; it’s much more public. And now people are having symptoms—long COVID. And now they’re saying, “Well, there is such a thing as chronic illness.” And somehow the Lyme groups, Lyme communities, have to latch onto that and say, “Well, there’s a thing called long Lyme.” I know studies are being done in New York on this, where you objectively measure or test for tick-borne disease in patients with long COVID. At least half of them—in some cases, 70%—have a tick-borne disease that was either quiet and came back or something, but they find a co-infection of a tick-borne disease in a great majority of patients diagnosed with long COVID. I think that’s going to change the perception of the disease.

Dana Parish: And I think that COVID is activating it. It’s making people more sensitive to mold and mycotoxins. I am seeing people lose tolerance to a lot of things that their immune systems may have been keeping in check for a long time.

Joe Burrascano: Well, there are two factors there. Of course, there’s immune suppression both from tick-borne diseases and from long COVID. And that allows pathogens as patient reactivation of viruses like Epstein-Barr virus (EBV), and so forth, the reactivation of a latent Bartonella infection. So that’s one big part of it. 

The other part of it is that any chronic illness causes a decrease in our body’s ability to remove toxins. Our body makes glutathione. Glutathione is the main detoxifier of the body, but glutathione production is inhibited when you’re chronically sick, and at the same time, it’s used up more quickly. And they found in the early days of COVID that by giving IV glutathione, it made a huge difference in their recovery. And we have known that for years now, with Lyme disease. So the whole thing about toxin buildup and immune system damage is kind of universal in chronic illness, and I hate to say thanks to, but because of these illnesses, people are becoming more and more aware of it. But you and I are talking in a bubble. We are talking to people who’ve experienced it, physicians who might have seen it, who see it every day.

But what about the world out there, who still go to a walk-in clinic with a tick bite, where they give you one dose of doxycycline? Or if you have long COVID, they give you an antidepressant and pat you on the head? So the problem is not that we don’t know what we’re doing. We have a great deal of knowledge. We have so many people in the world who are literate about these illnesses who are helping their patients. But we have an even larger number of people—clinicians—who don’t know and are doing a bad job. And what I think we have to do is try and educate them better.

“We have so many people in the world who are literate about these illnesses who are helping their patients. But we have an even larger number of people—clinicians—who don’t know and are doing a bad job. And what I think we have to do is try and educate them better.”

– Joe Burrascano, MD

Tick Bites, Attachment Time Myths and the Dangers of Tick Saliva

Dana Parish: You just mentioned something really important: tick bites. What do you recommend people do when they get a tick bite? What do you recommend doctors consider prescribing?

Joe Burrascano: Well, that’s not a simple conversation. That often takes a longer time in a doctor’s office than more routine kinds of questions. Let’s say someone was out in a tick-infested area, and they come in the house and they find a tick attached. What do they do? Is it worth watching and waiting, or do you go on some kind of preventative antibiotic? Well, that’s a conversation because number one, is it the kind of tick that might transmit an illness? And if so, what type of illness? Was it attached long enough to become a problem? What is the status of the host? Is it a pregnant woman? Is it someone with an immune compromise? Is it someone who already has Lyme disease? Is it someone on steroids? Or, one of these new monoclonal antibodies for rheumatoid arthritis, which wipes out the immune system? So it all depends on all these different factors. Now, the other thing is, you see people go to the walk-in clinic with a tick. They take the tick off, and they do a blood test. It takes weeks for the body to recognize the infection and to develop an immune response. Now, IGeneX lab has developed an ImmunoBlot, which is starting to see infections as early as two weeks after the bite, which is great, but that’s still two weeks later.

Dana Parish: Yeah.

Joe Burrascano: The other very important thing, very important thing, which is such an important thing. How long was the tick attached? If you look at the “dogma” (I hate to use that, put air quotes), we hear people say all the time, “It has to be on 24-36 hours. If it’s not on that long, don’t worry about it.” Now,  when ticks first bite someone or something, the first thing they do is they inject their saliva because the saliva numbs the skin, so you don’t feel the bite. It also injects factors like anti-clotting factors so they can draw blood and other things. So the first thing is injecting saliva. If the germs in the tick are also in the saliva, those germs get injected immediately upon the bite.

Let’s go through the data. Willie Burgdorfer himself said that at least 10% of ticks that are infected have the infection of borrelia in their mouth parts and can infect as soon as they bite. Relapsing fever. If it’s a soft tick, they’ve done studies, and they find transmission within less than 30 seconds. If one study was 15 seconds, where they did serial biopsies on a mouse. The viruses in ticks, the arbovirus, and so forth, they’re in the mouthparts.

Treat Bites Early, Aggressively; Follow Up is Critical

Babesia is in the mouthparts of ticks even before they bite, so the pathogens don’t have to travel. They’re in the mouthparts. So there’s a risk of getting bitten and infected immediately. Bartonella is found in the mouthparts. So this whole crazy dogma of, “Don’t worry about it, it’s a tick bite. It’s not been on long enough.” That’s absolutely not the case. And the problem with walk-in clinics, that it’s so bad because with walk-in clinics, it’s: I see you once and goodbye. It’s not a primary care doctor or a primary care clinician who will say, “All right, you had this tick bite. I want to see you back in three and four weeks and follow up.” They don’t do a follow-up. Or if they did a follow-up, they wouldn’t know what to do. So that’s a big issue.

“Willie Burgdorfer himself said that at least 10% of ticks that are infected have the infection of borrelia in their mouth parts and can infect as soon as they bite.”

– Joe Burrascano, MD

Dana Parish: I always think if I get another tick bite, I’m treating. I’m not waiting for symptoms. My Lyme disseminated so quickly. I had the bite. I was sort of like the traditional case that people think of, but I actually am in the rare minority who saw the bite and the rash and everything. But people think of it like that. And I’m telling you, this thing was in my brain in a couple of days. I could feel my whole brain change, my thinking changed, I couldn’t sleep, severe anxiety and depression, light sensitivity, and sound sensitivity. And it was crazy. Just like a light switch went off in my head. And then it was all over my body and pain and the whole fibromyalgia kind of symptoms, the whole thing. So I don’t know. I’m a big advocate for treating the bite. But it sounds like you’re saying there’s more nuance to it.

Joe Burrascano: Oh, sure. But I mean, if you look at the studies, once the infection is in the person’s skin, it immediately gets into the bloodstream. It’s also not blocked by the membranes that line the blood vessels, including the blood-brain barrier. So if it’s in the bloodstream, hopefully you have blood in your brain, it means it’s within the brain. And there are studies that have been done. It shows that certainly within days of not even hours, it goes from the bloodstream into the brain. So that’s the other thing that I say. All Lyme infections include the central nervous system, and the old-fashioned dogma as well is: “It’s early Lyme. It’s just in the body. Your brain is fine. You don’t have to worry about the brain,” but I think that’s wrong.

Undertreatment Leads to Chronic/Persistent Lyme Cases

In my office, I saw at least 15,000 Lyme patients over the years. And one of the recurrent things that, because most of them are chronic, most of the recurrent themes or situations I saw were people who got undertreated in the beginning. And what happened was you killed the weaker germs, left the stronger ones behind, you killed the more superficial ones that leave the deeper ones nice and deep. And they came in much sicker. They have sicker presentations, are harder to treat, and so forth. So early Lyme is a very, very important thing to get right. And if you’re going to treat early Lyme, then what do you do? Do you use doxycycline? Do you use amoxicillin? What do you do? Well, at first, you have to see did the tick get to the bloodstream? Is there a red mark? Is the tick engorged? Sometimes you catch it early, you pull the tick off. It’s just got a piece of dead skin on it. You don’t worry about that. So if it gets to the bloodstream, then you want to consider treatment. If there’s a reaction—starting to get a rash, the person’s starting to get sick, not feel well—then it’s disseminated. You really have to treat. 

So what do you do? Do you use doxycycline? Do you use amoxicillin? What do you do? Well, there’s a subtlety here, and I have a trick that I like to do, and I am glad you’re asking me this. I led you into asking me this. Ticks have a lot of different germs, a lot of different pathogens. Some of them are like Lyme borrelia, they get into your system, and gradually they make you sick. Same thing with the babesia and so forth. But they also can contain germs in the Rickettsia family, like Ehrlichia, Anaplasma, and Rocky Mountain spotted fever. Those rickettsial germs can make a very acute infection and actually can be rapidly fatal. And the treatment of choice for them is doxycycline. Okay? It’s not penicillin or cephalosporins, it’s doxycycline. So the idea is to give someone with an acute tick bite something to keep them from dying. So you give them doxycycline. But doxycycline doesn’t kill Lyme germs. It inhibits them but doesn’t kill them. They call it bacteriostatic, not bactericidal. To make it bactericidal, you have to go to very high doses, at least 400 milligrams in adults, and some need 600 milligrams. And I know this because I’ve done studies on patients where I’ve measured blood levels before and after a dose. Also, there are studies showing that the 200 milligrams that the dogma is doesn’t get to the blood-brain barrier, and it does nothing for a brain infection. 

Dana Parish: So what do you do? 

Understanding Pathogen Behaviors Informs Treatment Options

Joe Burrascano: Well, I give what I call a hybrid regimen. I’ll give doxycycline in the beginning for two weeks, okay? Knowing that it’ll hopefully inhibit the rickettsias—if there are any—from becoming a life-and-death problem. But also knowing that it’s not killing the Lyme, but it is holding it. It’s keeping it from growing. So after the two weeks of the tetracycline, I’ll switch to a cell-wall drug, either ceftin or amoxicillin plus probenecid, and give that for four more weeks. Now, why all this? Again, the tetracycline family, the doxycycline for the rickettsias, and then a cell-wall drug, which does kill Lyme if the dose is high enough. Now, four more weeks is another subtlety. Lyme germs grow in cycles, and the cycle for a Lyme germ is four weeks.

So anytime you look at the life of this spirochete, there are times when it’s growing and times when it’s dormant, and this is that four-week cycle; they’re killed during their growth phase. So if the growth phase is four weeks long, or the cycle is four weeks long, and you treat for three weeks there, there’s some odds there that you have missed some spirochetes that were dormant and they’re going to wake up. So my theory is that all treatment for even early Lyme has to bracket one whole generation cycle. So it has to be more than four weeks. So generally, I like to give six weeks. So that’s two weeks of doxy followed by four weeks of a cell-wall drug. 

Dana Parish: Can you clarify what stage this is in? Is this when you see the EM rash? Is this when you just got a bite without symptoms? Where are we? 

Joe Burrascano: We’re at a high-risk bite.

Dana Parish: Okay.

Joe Burrascano: Now that also leads into how long do you treat Lyme? As I said, Lyme has a cycle to it, a four-week cycle. I have my patients keep a daily diary. And how long do you treat? When do you stop? Well, generally, people experienced with Lyme will look at these four-week cycles and when the symptoms are supposed to flare, and if they don’t, that’s the end of the four-week cycle. Well, you keep treating for a few more weeks, maybe six more weeks, maybe some do three months—different doctors have different regimens—and if they haven’t shown any sign of active disease at that point, then you can stop. 

Now, it’s not an off and on thing. For example, if someone has chronic Lyme and you are treating them for several months, they have a flare-up every four weeks. Well, if the treatment is working, the bad days are less bad and the good days get better. There are more good days and fewer bad ones to get to the point where you’re fine all month except a few days out of it, and you have a little bit under the weather, but then you’re fine again. So you map this out on the diary, and if you get to the point where you’re supposed to feel bad but you don’t, that means you’ve got the thing controlled! You don’t stop there. You go for one more cycle just to be sure. Like I said, some doctors go two more cycles. 

Now, bringing that back to the tick bite, if someone has a tick bite with no symptoms, but it’s a high-risk bite, maybe there’s some erythema there. They suddenly feel a bit funny. You do the six-week hybrid regimen is what I recommend anyway. Now, if they have an EM rash and they start to get some fever, they start to not feel well, you treat them until they are fine for four weeks.

So that might mean you start treatment. Maybe they feel nothing for the first few days. By the third day, they have a Herxheimer kind of reaction. Then things settle down. Four weeks from then, which is actually week five, they have another flare-up. Then by week six, they’re pretty much okay. If they had symptoms to that degree, you would go another month and wait to see if that next four-week cycle is there or not. If it isn’t, they can stop. If it’s there, go another four weeks. And that’s why you keep a diary and why you see the patient very frequently.

Botanicals, Supplements, and Lifestyle Changes

Dana Parish: I see. So one of the questions that came in for you from the Lyme community is, “What if I cannot tolerate antibiotics or I’m just not getting better with them?” Do you like herbs? Are there other things that you recommend or even lifestyle changes that you think can move the needle?

Joe Burrascano: Oh, sure. We start with antibiotics because that’s all we really knew. And the technology or the science of treating Lyme disease with botanicals didn’t exist because no one knew about Lyme disease in the beginning. And a lot of the syphilis regimens were adapted, and some worked and some did not. But nowadays there’s a lot of research that’s been going on, including published research that shows some botanicals, especially if they combine two or three at a time, can actually—at least in the test tube—inhibit and kill the different pathogens. We’re talking about Lyme, Babesia, and Bartonella. So, modern therapy includes a lot of things. Let’s start with a chronic Lyme patient. Someone who’s been sick for a while, three months, six months, a year, a lot of things have happened to them. Their immune system has been compromised, and the toxins have built up. Their mitochondria may have been damaged to the point where they’re not making enough energy to run their brain and their immune system, and so forth. And so we call this the terrain, the underlying health of the person that has to be addressed and optimized, or else no antibiotic is going to work.

“The underlying health of the person that has to be addressed and optimized, or else no antibiotic is going to work.”

– Joe Burrascano

So modern treatment for the chronic Lyme patient has to address all these different things. And so that’s usually addressed by non-prescription means. There are different supplements that we know help with the mitochondria. There are different supplements, like I said, glutathione and others, that help to get the toxins out. There are toxins that go through our GI tract but then get reabsorbed with our food. And then you have to take what are called binders, things like clay and charcoal, that bind to the toxin in the GI tract, and they go down the drain with the bowel movement. So all these are kind of things that have to happen to clear the terrain, to help the immune system, to help get rid of toxins. When that’s done, and the body is much more healthy, number one, antibiotics work better with fewer side effects. And number two, there’s a chance that the botanicals by themselves can make the person better. Now, I’ve seen that happen, but only in the case where the terrain has been expertly managed and the person really has gotten a lot better. 

I’ve also seen the flip side, where people are only treated with botanicals, where they didn’t get it right. And the person never really got better. So it’s not that the botanicals do or don’t work, it’s the regimen, the whole person seeing the body as a whole and taking care of all the things that are wrong. I mean, things happen for a reason. If someone doesn’t feel well, it’s up to the clinician to figure it out and fix it.

Dana Parish: It must be so hard for you as a clinician to figure out. So much overlap. And then we have toxic mold, which I’ve heard you talk about more recently. And do you think that’s an important factor in unraveling the chronic Lyme mystery?

Joe Burrascano: Well, as I said before, chronic illness of any kind, especially tick-borne diseases, we know will not allow us to clear these toxins. I mean, these toxins are in the environment. I walk down in the woods, and I can smell mold because they live in the ground; they live in the soil. So it does it mean that everybody has toxic mold? No. Because if you’re healthy, your body has ways to eliminate it. If you’re not healthy because of an illness like this, you can’t get rid of it as well. And so they build up. And the thing that’s very important to understand is that once you’re toxic, they will never go away without treatment. They don’t go away on their own.

Dana Parish: Okay.

Joe Burrascano: You can get rid of the Lyme, you can get rid of the Bartonella, and if there’s mold toxin and things like that in your body, they will never go away. That has to be treated. And one of the interesting things, call it interesting, is that some of the symptoms of mold overlap with the tick-borne diseases, like the brain fog and the sensitivities, and maybe neuropathy. And so it’s very important, and that’s why a Lyme-literate clinician is someone who is very valuable to the patient. It’s a matter of pattern recognition. If you were a lung specialist and you saw 15 cases of pneumonia every day, five days a week, for 10 years, you could see pneumonia a mile away and take care of it. Think about a Lyme patient going to someone like a walk-in clinic who gives them a one dose of doxy. It’s not the same as going to a Lyme-literate physician. Many of us have seen thousands of patients with Lyme, and we have pattern recognition to help us.

The Single Dose of Doxycycline Controversy

Dana Parish: Does a single dose of doxy have any utility? I think we need to bust this myth. It’s still being said a lot.

Joe Burrascano: To me. I think it’s malpractice.

Dana Parish: Yes.

Joe Burrascano: First of all, doxycycline doesn’t kill the spirochete. We said that already, number one. Number two, the dose they give doesn’t penetrate the tissues or certainly not the brain well enough to do anything. Number three, the duration is not long enough. They found in the mouse study that they needed 15 days either by giving a long-acting formulation or just giving it for 15 days in a mouse, which has faster metabolism than we do. The study that proved or suggested one day doxy was based on whether or not the person got a rash, ignoring symptoms that they might’ve gotten. And the study ended at six weeks. It’s complete baloney. And how it even got published makes you wonder about the credentials of the publication as well as the people who wrote the article and the motivations.

Dana Parish: Yes, absolutely it does.

Joe Burrascano: Again, trying to minimize Lyme, it’s a simple illness, but then all the poor people who don’t have the time, I should say, clinicians who don’t have the time or whatever to go look at all the literature and critically review it. They say, “Oh, this big journal from these big fancy people recommends one dose of doxy. How simple?” It’s great in and out, a five-minute office visit, and you’re gone. But then the patient gets sick, and then what do they do? They might get sick months later, and then they think it’s something else. Never related it back to Lyme. And I’ll tell you another thing that’s bad. Studies were done long ago, the eighties and nineties, where they found that if you have a Lyme patient and you give them antibiotics, not sufficient to clear the infection, i.e., a subtherapeutic dose. And if you give it early in the course of the infection, it may prevent the blood test from ever becoming positive. So what if someone is giving a subtherapeutic dose, even if it’s not one dose? Let’s say it’s two weeks of a low dose of doxy, two weeks of 200 milligrams, which does nothing. That might, on the other hand, make them never have a positive blood test ever again. So two or three months later, when they come in with the sore knee, the fatigue, and the headaches, no one thinks of Lyme disease. And they do a blood test for Lyme, and it doesn’t show? Well, it’s not the Lyme because you were treated. And that’s the tragedy. So the question is: What did you get treated for? What was the treatment? What was the drug? What was the dose? How long was it given? When was that in relation to getting these?

Why Lyme Tests are Inaccurate

Dana Parish: How often are the tests accurate to begin with? And I mean, the mainstream tests you walk into a commercial lab in your local town.

Joe Burrascano: Well, that’s a whole other discussion.

Dana Parish: Because I think people don’t know that. I get a lot of notes and emails from people saying, “Well, I got bitten by a tick. I got these 3,000 symptoms, but my tests are negative, and my doctor won’t give me anything, but I know I have Lyme.” So there’s this disconnect. Doctors don’t understand the value of a clinical diagnosis. And of course, you want to rule other things out. So I’m not saying everything is Lyme. I would never say that. But there’s also the problem with the tests. And so this is still not known.

Joe Burrascano: Well, let me tell you the story. If you run a hospital or a big commercial lab, the big box labs, you don’t create your own tests. You don’t have a lab in the back where you’re growing spirochetes and babesia and making serums and all that. You buy a commercial test kit. Now, by law, a commercial test kit has to go through FDA approval, okay? All Lyme disease test kits that are FDA-approved are based on a single strain of a single species of borrelia. That was what Willie Burgdorfer had found in a tick on Shelter Island, New York, an island off the coast of New York state. So now number one, it never came from a human being; it came from a tick. So who knows if that spirochete, which all the tests are based on, including FDA approvals, reflects what’s going on in people. 

“All Lyme disease test kits that are FDA-approved are based on a single strain of a single species of borrelia. It’s supposed to represent all Lyme disease. It’s absolutely ridiculous.”

– Joe Burrascano, MD

Second thing, we know that borrelia are different in different parts of the country, in different parts around the world. People with Lyme disease from New England present differently from those who got Lyme in Pennsylvania or got in Florida or Arkansas, or on the West Coast. They present differently because they’re different strains of the spirochete. So here again, we have one spirochete that came from a tick, by the way, from an island isolated off the coast of New York. It’s supposed to represent all Lyme disease. It’s absolutely ridiculous. So they found that by studying real patients, using the FDA-approved tests, they miss a little bit over half. It’s worse than a coin toss. Would you diagnose breast cancer or AIDS, or anything serious, with a test that misses 50% or more? Absolutely not.

Dana Parish: These tests are still on the market. Aren’t there better tests that have been developed?

Advances in Lyme Disease Testing and Diagnosis

Joe Burrascano: Well, see, that’s been the big news. The private labs. Number one is IGeneX, of course. They’ve been in the tick disease business since 1990, I think, or even earlier. And they are focused on patients and on the real world. And so, because they’re not an FDA lab, they can do the type of testing and develop the kind of tests that look for the real world of Lyme disease. So they developed a replacement test for what the big box labs use, and it’s called an ImmunoBlot, and they have it for Lyme and Babesia, Bartonella, and all the others. So the thing that’s different here is besides being a different technology, it’s much more accurate. It is also designed to pick up all the species, not just that one that came from a tick off the island of New York. Now the big news is that their ImmunoBlot for Lyme has been FDA-approved. Just happened. So now that means the big boxes are able to buy this test kit and get all the species covered. It’s been such a gigantic revolution that it’s caused, it’s forced the CDC to change its webpage on Lyme disease testing. Did you know that?

Dana Parish: No.

Joe Burrascano: In Lyme disease testing, they say you have to have two tiers. You have to have a first test and then a second test. The second test is usually a Western blot. Western blot identifies different portions of the germ. They call them bands, B-A-N-D-S, and they identify 10 bands that the test should carry. And you have to have five of those 10 to be called positive. Well, what if you’re a patient, you have four bands, you don’t have Lyme disease? It’s ridiculous. Much more importantly, all germs make different proteins. A lot of these proteins are common, just like some of the proteins in our body are similar to proteins in a mouse in a dog, or a horse. Same thing for germs. There are germ proteins in Lyme that are common to other ones. So if you look at the 10 that they select for their Western blot, seven out of those 10 are nonspecific. They could be in other germs. So if you have to use their criteria, you’re going to get false positives. So that’s completely ridiculous. On the other hand, two specific proteins, band 31 and 34, which are very, very specific for Lyme germs, were not included in the CDC test regimen because it was in conflict with the vaccine. It was being developed at the time.

So here we have a test that uses nonspecific bands and excludes the specific ones. So what IGeneX has done is they’ve made this ImmunoBlot test, which doesn’t have any nonspecific bands, and it does include those two very specific bands. And the criteria are two bands, two different band groups, not five out of 10 randomly. And so their studies have shown the pickup rate is greater than 90%, not 50%, and it also will cover all the different species. So now, when you go to the CDC website, it no longer gives you that nonsense of 10 bands. You need five out of 10 and blah, blah, blah. It says you have to have an FDA-approved test because IGeneX has revolutionized Lyme testing to the point where even the CDC had a back off and changed their recommendations.

“IGeneX has revolutionized Lyme testing to the point where even the CDC had to back off and changed their recommendations.”

– Joe Burrascano, MD

Dana Parish: That’s incredible. And I should point out that even though the Lyme vaccine was pulled 20-something years ago, those bands were never put back in the test. All these false negatives that people are getting, I can’t begin to tell you—the wider audience—how detrimental that has been for patients and clinicians because I genuinely think that doctors want to help their patients get better, and then they’re staring at this negative test and this very sick patient with multisystemic Lyme symptoms and they’re at a loss. They’re just at a total loss. So it’s time to talk about the testing. 

You did a study years ago at Stony Brook that I think about so often because it was so instructive. It taught me a lot about chronic Lyme and chronicity. There’s so much dogma. That word again about Lyme not being chronic. The dogma is that it’s not chronic, as you said, easy to treat, easy to diagnose, and curable. But that’s totally not true. Can you talk about that study that was not published from Stony Brook? The doxycycline study?

How Dr. Burascano Refined His Treatment Strategies

Joe Burrascano: Early on in my career, I was seeing so many Lyme patients that different universities or labs would ask for blood samples from my patients to do their studies. And one of them was the State University of New York at Stony Brook, and they had a study where for patients who present with erythema migraines (EM), Lyme rash, you would either give them amoxicillin or doxycycline, and it was for three weeks, and then stop.

So I would do that, and that’s what would happen. So I gave the three weeks of doxycycline, and they were my patients. There weren’t some person who came in from miles away, and they would never see them again. And they’d come in and get the three weeks, but then they would come back and say, “You know, everything came back. It seemed to work in the beginning, but I’m sick again.” And it was still the Lyme. And again, like I gave the analogy of a doctor who sees 15 cases of pneumonia every day for 10 years, you get to know what it’s like. Patients are not stupid. They know what it was when they were sick and what they were like before they got sick. And now they got sick, they got treatment, and they’re sick again. They say, “It’s exactly what I had before.” And so that three weeks of doxycycline was a hundred percent failure. But Stony Brook never published that study. In fact, that caused a rift between me and Stony Brook because it said, “These people aren’t, well, they’re still sick.” 

Dana Parish: You were finding active Lyme, just to be ultra clear with people who have never heard about this before. You were finding live Lyme?

Joe Burrascano: Well, that’s the other thing that happened at the time. Dr. Alan McDonald, the real genius, was working at the local hospital where I was working, and he developed a Lyme disease blood culture, and he proved it was really Lyme disease by monoclonal staining by DNA-PCR. I mean, it really was Lyme. He was able to culture the blood of these patients and find Lyme in them. So I had these patients who got three weeks of doxycycline and remained sick. So some of them had the Lyme blood culture when the symptoms came back, and they were positive. So I had proof positive they still had Lyme, that they were still sick, and that three weeks failed.

“I had patients who got three weeks of doxycycline and remained sick. Some of them had the Lyme blood culture when the symptoms came back, and they were positive. So I had proof positive they still had Lyme, that they were still sick, and that three weeks failed.”

– Joe Burrascano, MD

Dana Parish: Is there any basis for the chronicity, the chronic aspect of Lyme, to be denied at this point? Is there any scientific basis, or is it totally debunked?

Joe Burrascano: People who know Lyme from firsthand experience know that chronic Lyme is real. People who have a stake in the opposite opinion, for whatever reason, have come up with a number of different excuses or reasons why it’s not infectious. For example, they say that the major symptoms are gone, and the minor symptoms are post-Lyme syndrome. Well, never in the entire history of this illness anywhere in the world has there ever been a test to show what these people have, these post-Lyme people, a specific defect or a blood test abnormality or an immune system that’s repeatable and found in every single patient. There’s never been any test of any kind that proves chronic post-Lyme disease is a new disease. It’s just a theory, and it’s been used as a theory, but it’s turned into dogma.

Dead Pathogens Don’t Cause Ongoing Symptoms

They come up with ideas that, well, they’re fragments of spirochetes that are left. And, for example, if you do a DNA test, a DNA-PCR test of the blood, and you look for the borrelia, it’s not a very sensitive test for a lot of technical reasons, but let’s say it’s a positive, then that’s evidence that the Lyme germ is living in the bloodstream. Well, then they’ll say—the naysayers say—“Well, DNA will persist. You can find DNA in mummies.” Well, the thing is, in the living organism, not a mummy, a living organism, there are enzymes in the blood that break down DNA and eliminate it, called DNA acetylation. So whatever DNA is in the blood, if the organism is dead, it gets filtered out and destroyed. So a positive DNA blood test means the person had Lyme the day the blood test was taken. So this whole idea of fragments of DNA or fragments of the spirochete makes absolutely no sense at all. And if there are fragments, it means it must be a living spirochete somewhere contributing to making these fragments that are still in the body, despite the body trying to clear them out.

Dana Parish: That makes so much sense. Again, really important for clinicians and for patients to have that information and validation, because we know. But the world at large is still very confused and has a lot of questions. Okay, Lisa Denny said, “What do you see coming in the near future for promising Lyme treatments?” And also to expand upon that, what were you thinking about treating in 1980 versus now? Those kinds of questions were popular and common.

IV Antibiotics: A Key Tool in Treating Chronic Lyme

Joe Burrascano: Well, what I’ve seen is that there’s a lot less use of IV antibiotics than there was in the past. And I think that’s a mistake. So many people are trying to get on bandwagons of this pill and that pill in combinations and put a bunch of herbs in and this, that, and the other thing, and make a pressure cooker, and it’s all going to magically get better. Well, the thing is, if you were to do a comparison of how much drug it takes to kill the germ versus how much is in the body, and you compare one of the best oral drugs like Ceftin/cefuroxime to Rocephin, the margin of Rocephin is 1000 times more effective at killing the germ. So there are people, and I’ve had this again and again, who I gave all the oral treatments and all the herbs and all the detox on stuff, and they just never got better. Put them on the IV and vim, they got better.

Back in the olden days, and again, I’m talking about the eighties and nineties, we didn’t have all these alternative things. We didn’t have second, third, or fourth-line drugs. All we had were penicillin, amoxicillin, plain erythromycin, and then the IVs. And there are some people who did take IVs for many months, and those people got well and stayed well. And to this day, and now this is how many, 40 years later, I see people in town, they say, “Oh, hi Dr. B, how are you? You’re the only one who ever cured me.” And those who went to you always got better. And those who didn’t go to you, they never got over it. That’s not always, I mean, I had failures too in my treatments. Not everyone’s a hundred percent, but the long-term IV therapy clearly has a role.

Dana Parish: That’s important to know. So somebody is asking what you think of IVIG for somebody who has tried antibiotics and who has been at this for a while.

Joe Burrascano: Intravenous gamma globulin is what IVIG is. It’s the immune factors that are made by the B cells. Some people who get very bad Lyme disease get bad because they have a deficiency of these immune globulins that predate the Lyme disease. They were just the kind of person who had that, and they may have been prone to colds and sore throats as a kid. And then giving these immune factors, IVIG can make a big difference. If they’re deficient, they might have to take this once a month forever. On the other hand, we know that Lyme germs will kill the immune cells and inhibit those that aren’t killed. And therefore, Lyme patients are notorious for having low levels of these immune factors. And if you can show that on a blood test, then giving the IVIG will help. The third thing is that IVIG helps to heal nerve damage, separate from its effects on the immune system. So some people who’ve had damaged nerves that are permanently damaged can actually have some regrowth and some healing from IVIG. It takes a long time and requires a good neurologist who knows how to handle it. But yeah, it’s got a definite role.

Dana Parish: Yeah, that’s great to hear. So that leads me to Alex Meters. He wrote me and said, “If I could ask you, if western medicine antibiotics aim to kill, kill, kill, is there a way out of this by regulating immune dysfunction?” meaning not with antibiotics.

Joe Burrascano: Unfortunately, the answer is no. Because think about it. You can have a person who’s been completely healthy with a completely solid, intact, robust immune system, who gets a tick bite and gets terribly sick. So if it’s just the immune system, no. It’s the same analogy with cancers. Cancers are always forming, and our body’s immune system keeps them in check and gets rid of them. But if it ever gets beyond that threshold where you can’t contain it, then the body gets cancer, and the new treatments for cancer, immune boosters to target the cancer, or to not let the cancer undo the immune system. Now, in Lyme disease, you can have a completely intact immune system and get sick and have an infection, just like you can get strep throat and have it with a good immune system. So it’s an invader, it’s a foreign invader that needs to be treated directly. You can’t just have a strong immune system.

How Pulsing and Cycling Therapies Differ

Dana Parish: Could you just answer one more question, which is about pulsing antibiotics or also cycling antibiotics, and what is the value to either of those?

Joe Burrascano: Okay, those are two different things. Pulsing antibiotics means using an antibiotic, not steadily seven days a week, but using it, let’s say two or three days in a row and then stopping and having no treatment for the rest of the week. It’s used in Lyme disease because Lyme germs are slow to be killed. They take two or three days of continuous antibiotics to dissolve them like a cake of soap underwater. It takes a long time to kill them. But once they’ve been hit with antibiotics because of the slow regrowth, they’re not going to wake up for a period of days to weeks. 

So what you can do is you can use an antibiotic, say three days on and four days off each week. And it allows for several different things. Number one, because you’re using it intermittently, you can use a stronger medicine or a higher dose. They did studies in Germany where they found double-dosing Rocephin in pulsing like that can kill Lyme in people who didn’t respond to seven-day-a-week Rocephin. So it allows you to have a stronger, more effective regimen. 

Number two, because you’re on the medicine less than half the time, the impact on your gut is much less. The impact on the gallbladder is much less. If someone’s on IV therapy, they don’t have to have a long IV line into their heart. They call them PICC lines. And, if you look at side effects or treatment, the number one side effect or treatment in Lyme has nothing to do with the medication; it has to do with the infection of these long lines. So if you use pulse therapy where you’re doing an IV two days a week, they can use a heparin lock, one of those one-inch-long little needle things that goes in the arm made of plastic, and after the two days, you take it out. So more than half the week, you have nothing in your vein to get clotted or infected. So it’s safer and more effective. You can do that with oral antibiotics as well, especially for very sensitive people, who experience Herxheimer reactions badly, rather than put them on day after day of antibiotics, take this antibiotic for two days and stop, and then you have the rest of the week to clear up, then two days and stop. And that’s how you get them over the hump and get them better. So pulse antibiotic therapy is meant to give a better regimen more safely.

Okay. Now, cycle therapy is entirely different. It’s something I came up with to get rid of persisters. Now, we didn’t know there were persisters at the time. They didn’t have a name, but I figured it out. Some people were on treatment, and they improved to a plateau but never got better. I said, All right, what’s going on here? Well, it’s a stalemate. The germs are killed during their growth, but if you have them on antibiotics, they’re not growing anymore. So they’re not being killed. You’re in this stalemate. So what I would do is I’d get them to the point where they’re on a plateau. If they kept getting better, I’d keep them on treatment. But if they got to the point of a plateau, I would stop. And what would happen is over the first few days, they’d feel better because there’s no Herxheimer, no drug in their system. So they’d feel better for the first few days, and as a week or two went by, they’d feel okay. But by the third week, the same old familiar Lyme symptoms were coming back; by the fourth week, they knew they were sick. The germs are growing; put them back on the full dose of antibiotic, blast those germs, get a good, strong Herxheimer reaction. Go through, say, five, six weeks of treatment to the next plateau and stop again. And the dormant germs, that are, if you want to say, in a stationary phase, the cysts revert to spirochetes,  whatever they do, and they come out of the biofilm, now they’re growing, they’re making you sick, hit them again. So, cycle therapy has to do with getting over a plateau and making people well. And in fact, I found that really worked well, maybe say 80% of the time, maybe a little bit more than that, but people who are on plateaus were just not getting better. So, cycle therapy has to do with the full week cycle of Lyme germs, and pulse therapy has to do with a safer and more effective regimen.

Dana Parish: Okay. Wow, that’s awesome information. Thank you so much. Is there anything that I should have asked you that I didn’t ask that you think is an important note to end on?

Be Your Own Advocate

Joe Burrascano: No, just people have to understand that if you’re not feeling well, it’s for a reason. You’re not sick for no reason. There’s something wrong that has to be figured out and fixed. And it’s up to you as a patient to keep a good daily diary and be insightful. It’s up to the clinicians, and it might be more than one clinician working at your site as a therapeutic alliance. And you discuss options, and you come up with a plan, because you can get better. And with that, you will.

Dana Parish: Yes. And you can go to ILADs.org for a lot of helpful information, but also for a clinician referral. So if you’re in a state where you’re not sure how many Lyme doctors may be in your area, you can write to them, and for free, they will write you back and give you some names.

Joe Burrascano: And one other thing, ILADS also has a physician/clinician training program. If you’re a licensed practitioner, it doesn’t have to be an MD. You can go and get trained and certified. And that’s something very valuable that a lot of clinicians should take advantage of.

Dana Parish: I agree. Thank you. Well, thanks so very much. Appreciated your time and insights today. And just thanks for everything.

Joe Burrascano: Oh, you’re welcome. It’s been a pleasure. Thank you for having me on.

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