Conversations on Healing

Welcome to the Conversations on Healing Podcast, where host Shay Beider speaks with renowned healthcare leaders, practitioners, and thought leaders to explore the world of wellness, the incredible powers of self-care, and what it truly means to heal today. Join us on this journey to become more whole, healed, and connected.

Shay Beider Hi, I am Shay Beider, and I’m happy to welcome you to the Conversations on Healing Podcast. In today’s episode, we have the privilege of speaking with Dr. Denis Bouboulis, an early pioneer and specialist in diagnosing and treating PANDAS, which is a pediatric autoimmune neuropsychiatric disorder associated with streptococcus. Dr. Bouboulis leads Advanced Allergy, Immunology and Asthma, and is the founder and director of the Superior Associates Infusion Center in Connecticut. With a Doctor of Medicine degree from New York Medical College, and over 13 years of experience as a board-certified physician in allergy, asthma, and immunology, Dr. Bouboulis has successfully treated thousands of patients whose symptoms were previously overlooked or misdiagnosed. His mission is to raise awareness among both physicians and patients to ensure proper diagnosis and treatment of debilitating conditions like autoimmune encephalitis. In today’s episode, we explore how inflammation is triggered in the body, particularly in the context of long COVID, PANS or PANDAS, and tick-borne illnesses.

We delve into autoimmune encephalitis and the various triggers for autoimmune inflammatory responses. Dr. Bouboulis emphasizes the importance of addressing underlying infections to alleviate symptoms, and he discusses the specific lab tests that are needed to identify clearly vector-borne illnesses that can contribute to long-term chronic conditions. This is an incredibly insightful episode, and you’re bound to learn something new about chronic conditions and the impact of vector-borne illnesses. So for anyone struggling themselves or who has a loved one with either long COVID, PANDAS, or tick-borne conditions like Lyme disease, this episode is definitely for you. So, let’s get started.

Dr. Bouboulis, it’s a delight to have you on the Conversations on Healing Podcast. Thank you so much for joining me today.

Dr. Denis Bouboulis Thank you for having me.

Shay So, I’m really looking forward to our conversation. I think it can be quite enlightening for people who are dealing with chronic inflammatory illnesses, particularly things like long COVID, PANS, or PANDAS- things like tick-borne infections that may have a cause that they haven’t yet heard be identified from their healthcare provider. And so, I feel like this is a really educational show, particularly for those folks who are experiencing long-term chronic inflammatory conditions. So, thanks so much for being a guest with me today.

Denis My pleasure.

Shay So we’re going to start out on that topic- these three chronic illnesses in particular that are really challenging: long COVID, PANS, PANDAS, and tick-borne infections. Can you first just explain to folks how inflammation gets triggered in the body in these cases?

Denis The clinical consequences of these infections are really a collaboration between the immune system and an infection. With respect to COVID, starting with the first infection, there is an immune response from the virus that causes inflammation in the body. And when we say inflammation, we talk about inflammation that is in blood vessels, and that’s really where our immune system resides, and it causes an abnormal response- a misdirected response. Initially, there is the correct immune response, because the immune system is responsible for clearing, let’s say, COVID. But then, in the realm of long COVID, this inflammatory response perpetuates, waits, and causes, if you will, collateral damage. And most of the damage is really done to blood vessels, and it’s done to the nervous system.

Shay Great. And what I think is important for our listeners to understand is that this inflammation that’s lingering in long COVID- it also has an impact on these other illnesses. And that your approach, that you’re taking to this, is that you really recognize that there’s a silent epidemic of autoimmune disorders that are being misdiagnosed as long COVID, when in fact the issue is actually related to a vector-based infection. And so, I want to give you an opportunity to share with our listeners: What are vector-based infections, and how the heck does that even relate to long COVID?

Denis Sure. So, a lot of the patients that we evaluate in our practice with long COVID- when you get down and you do a deeper dive into their immune system and you do an infection workup- we find that these folks have underlying tick-borne infections or vector-borne infections, such as Lyme, such as other parasitic bacteria, such as Bartonella; malaria-like parasites, such as Babesia, known as babesiosis. And in fact, babesiosis has been coined the American malaria. There are other infections as well that are vector-borne. There’s Anaplasma. There are rickettsias that cause Rocky Mountain Spotted Fever. There are various viruses, and there’s a myriad of these. And the immune system has an uncanny ability to contain these. And there are a lot of people out there who are infected with absolutely no symptoms, which is remarkable- and really, it’s a remarkable phenomenon. But when another infection hits the body, such as COVID, it’s like the straw that broke the camel’s back. So, it lands in the immune system, and now the immune system’s attention goes from containing these infections to fighting COVID. And now these infections now become problematic and symptomatic- to a lot of the symptoms that we recognize as long COVID. And in fact, when you take these folks and you treat them, and you treat the underlying infections- these vector-borne infections- then the long COVID symptoms go away.

Shay Yeah, that’s so important for people to hear and learn, because this isn’t being widely communicated in the medical world currently. A lot of physicians aren’t educated about the relationship between long COVID and these vector-borne infections. And so, it’s a really important piece for people to understand- and then to be able to get appropriate follow-up care. I also think it would be valuable for you to talk a little bit about vaccines. Obviously, vaccines play an important role in a public health system, and in our public health system, but they also can trigger a chronic inflammatory response in the body. So, I want you to talk a little bit about what that looks like and how vaccines also create an impact.

Denis So, vaccines are important in our community and the world- I mean, they’re lifesaving in many respects. But however, in the genetically predisposed individual, vaccines can cause injuries. This is a subpopulation of people- it’s not the vast majority, luckily- but in genetically predisposed individuals, you can have an autoimmune response, where the immune system becomes misdirected as a result of that vaccination, and that can now start attacking the body and various organs. And the organ that’s preferentially attacked is the nervous system in these cases. And I want people to understand that vaccines are really tantamount to an infection. So, if there’s an adverse effect from an infection as a result of a genetic predisposition of the individual, well, the vaccine can do the same thing- because it engages the immune system. It stimulates the immune system in the same way as the real infection would.

Shay Right, exactly. And obviously, the thinking in public health is that by getting the vaccine, you’re not going to get a more complex, difficult case of the actual disease, what you’re trying to prevent. The more extreme case, which is what we saw with COVID, is that with the vaccine, hospitalizations went down. People that were at the extreme end, that was mitigated, which is the primary idea behind that. You work quite a bit with children who’ve been diagnosed with PANS or PANDAS, and you’re a leader in that field, especially as it relates to autoimmune encephalitis. And a lot of people listening might not know what that is, how that relates to PANS or PANDAS. They may not know- unless they have a loved one who’s been impacted by PANS or PANDAS- what that is either. So, I thought maybe you could explain a little bit what the relationship between autoimmune encephalitis and this diagnosis that’s relatively new for a lot of folks around PANS and PANDAS, how those two interrelate, and what PANS and PANDAS is.

Denis Sure. PANDAS is the prototypical autoimmune encephalitis case, if you will, and that’s when a strep (streptococcal) infection causes an autoimmune response or a misdirected immune response against a small part of the brain known as the basal ganglia. And the basal ganglia is controlled or dominated by a neurotransmitter called dopamine. Now, there are various targets of the immune system that will cause dopamine to become unbalanced. There are receptors in that part of the brain that get attacked by the immune system, ultimately leading to an unbalanced state. And that unbalanced state gives rise to neuropsychiatric symptoms. And the prototypical symptoms are anxiety, obsessive-compulsive disorders, emotional lability or mood swings, motor tics, and sometimes even cognitive decline. So, that’s PANDAS when the infectious trigger is strep. Now, autoimmune encephalitis is a broader category- it’s a larger umbrella that encompasses PANDAS, but it also relates to other infectious triggers, such as Lyme, such as other vector-borne infections. All these infections can result in an assault against the brain.

Shay And I think what’s so important about what you just described is that, to understand what you just shared with our listeners, it requires a multidisciplinary knowledge in immunology, infectious diseases, psychiatry, rheumatology. That’s why I think there’s been a lot of confusion around PANDAS- what is it, and how do we treat it? It’s really across disciplines, and you have to have some comprehensive understanding across those disciplines to figure out how it interrelates. And so, I’m curious about your interdisciplinary approach to understanding and treating this illness in children.

Denis Yeah. Well, that’s true. One needs expertise in immunology, rheumatology, infectious disease. It spans many disciplines, and that is why it really- this is an entity that is not well understood by the medical community. Most doctors, they’ll stay in their lane and they won’t venture to go to others. But really, one needs a holistic approach here to treat these patients. It’s not easy, but if one keeps that in mind and broadens one’s horizons as a medical practitioner, it becomes easier. But there’s a lot of education involved. There’s a lot of listening, and a lot of history taking to get to that point.

And what I want to say is that in cases of PANDAS, and one of the biggest questions that come across my end is whether or not this is curable. I just had a family the other day that came with a child with PANDAS, and when I said to them that, “Yes, this is curable,” there were tears in their eyes because most of the patients that come to me have been around the block a few times. They’ve seen practitioners, pediatricians, neurologists, psychiatrists and their symptoms have been treated on a symptom-based model, but not really getting to the core. And they’ve lost faith in the fact that their child is going to get better. So when they hear that it is reversible, they’re very happy.

Shay And I think that’s so important in relationship to the conversation we’re having today- is to give people hope that there are things that can be done. Because I too have worked with a number of those families, or working with them currently, and there’s a lot of confusion and frustration and, to some degree, misinformation, just honestly based out of ignorance because it’s a growing and developing field, and we are still trying to understand it. I think more broadly, as a medical community, the community is trying to understand it. And so, I think some of the contributions that you’re making are very beneficial for patients to understand that there is hope. So, I want to also bring in the tick-borne illnesses that I mentioned earlier in our conversation, because another example of where you can have these accessory infections that play a role. So, I’d like for you to share a little bit about the treatment of some of these.

You mentioned the importance of how you treat- so how to treat is a piece that I’d love for you to share in a broad sense, obviously individualized to each patient.

Denis Sure. So, the general concept is that this is not germ-specific. The autoimmune encephalitis or PANDAS- the syndrome, the clinical syndrome- can present from a myriad of infections. So, with PANDAS, it is the strep that causes the encephalitis, but tick-borne infections can do the same thing, and it can do the same thing even better. A lot of patients who have autoimmune encephalitis as it relates to tick-borne infections have often refractory treatments that don’t resolve as easily as cases of simple PANDAS. And the reason for that is because vector-borne infections or tick-borne infections are tissue-based infections. They burrow into our tissues, particularly Bartonella, which is the king of all these tick-borne infections. People often believe that Lyme is the nasty one, but in fact, Bartonella is nastier. It is a parasitic bacteria that burrows into the lining of blood vessels and causes autoimmune reactions principally against the nervous system. And the mainstay of therapy is treating these underlying infections. And most of the time, patients will have multiple infections. They may not just have Bartonella, they may have Lyme, they may have the Babesia. So we have to treat all these collectively in order to be effective in calming down the immune system, and getting rid of the encephalitis symptoms.

Shay And I would imagine from your description thus far, it’s fairly easy to identify if a patient has, for example, Bartonella or some of these underlying infections.

Denis It’s easy. Sometimes we have to use specialty laboratories that specialize only in vector-borne infections. Usually, the commercial laboratories, they don’t specialize in identifying these infections. These infections do not elicit a robust or strong immune response, and therefore antibodies are not picked up as easily with commercial laboratories. You have to use specialty laboratories that will identify these because if you don’t, you will invariably get a lot of false negatives. So, you’re going to have blood tests that come back from a patient with symptoms that are completely negative.

Shay I see. Yeah, that’s a really important point to understand. And it makes all the sense in the world, given your description, that someone could have one of these vector-borne illnesses and not even know they had it because their body is managing it relatively well until something else happens. And there’s a stacking. So, now you get exposed to COVID, now your body has too much burden, and so suddenly it can’t manage that underlying infection in the same way because it was more subtle, so to speak, initially, but now it’s become more prevalent and compromising.

Denis That’s a very important point that a lot of folks don’t understand- that these infections can be in stealth mode in the body. They can be in the body and very well contained by the immune system. That’s a fascinating phenomenon, and it underscores the brilliance, if you will, of our immune system and its ability to contain infections. And our immune system works every minute of the day to keep us healthy. I mean, there are billions and billions of germs that we are assaulted with, if you will, over the course of even a day, but we don’t get sick, and that’s because of our fabulous immune system.

Shay It is extraordinary, and it’s also, I think, important to understand- and we’re touching on it in our conversation- that because the immune system is extraordinary, it handles so much, but there is a threshold. There’s a point at which it can’t handle more. It has a capacity or a breaking point where then things do start to dysfunction and illness ensues. And we see that particularly with these kinds of chronic illnesses, but that the root of treatment, it sounds like, is dealing with those underlying- essentially, what’s creating the stacking in the first place- those vector-borne illnesses that are just creating a “too much” scenario in the body. And so, as you treat those, you’re treating each one individually. So you’re looking at Bartonella, and you’re targeting each one very specifically and individually. Is that correct?

Denis Yes, but you also have to treat them collectively.

In other words, if you have a patient who has Lyme, patient has Bartonella, patient who has Babesia, you don’t look at that patient and say, “Oh, I’m going to treat you first for the Babesia, and then we’re done with that, come back and we’ll do the Lyme, and then we’ll treat you for the Bartonella.” If you do that, it doesn’t work. You have to treat them more collectively because these infections help each other survive in the body. And they’re not easy to treat because they’re tissue-based. They’re really parasitic in nature. They live in our bodies, and sometimes with a paucity of symptoms, sometimes with grave symptoms. But because they’re tissue based and in our tissues, they have to be treated for long periods of time with the right combination of medications to eradicate them completely.

Shay Why don’t you give us an example of some of the kind of typical stories of people that are coming to you, and how you approach treating their illness?

Denis Well, as I mentioned, there’s a wide range, or a gamut, of symptoms. There are people who come with mild symptoms. I’ve had patients that have walked into my doors crippled, on wheelchairs, with cognitive impairments, and everything in between. The treatment approach varies depending on what organisms we find. If, for example, a patient has Lyme, if they have the Babesia, if they have Bartonella- those are the big three by the way. Those are the three Bs.

Shay Okay.

Denis Borrelia’s, which are the spirochetes that cause Lyme, Bartonella, which is the parasitic bacteria, and Babesia- those three are the most severe. And then you have other minor bacteria like cia, andana, plasma, the rickettsia. Those don’t usually cause huge issues. They go away quickly with one antibiotic. Some of these others, you need combination protocols to eradicate them, and it takes a long time to eradicate them. For example, Babesia, which is the malaria-like parasite, has a reservoir in their red blood cells. It’s in our red blood cells. And if you do studies, you can actually see them under the microscope in our blood cells.

Lyme can go inside the tissues, and it can change different forms, and it can live there for long periods of time, causing, again, immune-related reactions that cause chronic symptoms and chronic illness. Bartonella is in the same genre as tuberculosis. It’s not a respiratory germ- in other words, it’s not in our lungs as tuberculosis is- but it has the same affinity for tissue, and it has the same tenacity, and it has the same ability to resist treatment. And therefore, when you treat Bartonella, you have to treat with multiple antibiotics for long periods of time to completely eradicate it. And when you treat these collectively, you have to treat all of them at the same time in order to be effective.

Shay Complex. Right, yeah.

Denis Very complex.

Shay And so what has made you as an individual, and as a doctor, so passionate about the work that you do?

Denis Well, that’s a complicated question, but I can summarize it in the following way. As an immunologist, I have seen in my practice many patients with immune-related symptoms, autoimmune-related symptoms. When you have a misdirected immune system, and when I dig deep into the cause, infections always comes at the top. So I have to be able to treat these infections effectively in order to be able to rid my patients of their symptoms.

Shay I see.

Denis And when families come back to me and say, “You’ve saved my son. You’ve saved my daughter,” years later- I have kids that were incapacitated come back after finishing college and thanking me for what I’ve done. That is the ultimate reward in what I do.

Shay Yeah, absolutely. You can’t beat that. So, another area I want to touch on is this area of allergies and asthma, because that also relates very much to your work, and we’re seeing so much of increase of the number of new cases- the incidents of both allergy and asthma in children. I’d love to get your take on why we’re seeing that.

Denis Well, so allergies and asthma have been on the rise for quite some time- certainly in the last decade. And in general, Western-based countries do have a higher incidence of allergies and asthma as opposed, let’s say, to third world countries. And the reason for that is something that has been described in the hygiene hypothesis, and that’s that we live in a very clean world, a very clean society, and our immune system is not busy enough fighting germs. I mean, think about it. We put antibiotics in our soaps. We have antibacterial soaps. And so, when you have a lot of antibiotics in the community- and there’s also a concept of overuse of antibiotics in the community- we have developed a very sterile society. And because of that, our immune system now is not busy enough to fight infections and has gone into an allergic and an autoimmune mode, where it’s reacting to allergens and it’s also reacting in a misdirected way with infections when they do come. If you look at third world countries, the prevalence of allergies and asthma are way lower than ours. If you look at children who have been raised on farms, they also have a lower prevalence of allergies and asthma as opposed to other children. For that reason, we’ve been seeing an uptick in allergies and asthma in the United States.

Shay And when you think about what you’ve learned over the course of your career thus far, and a lot of the children and families that you’ve treated, and the complex nature of what you’re dealing with- because it’s not a simple approach that you’re targeting- but it sounds to me very clearly that the reason you’re taking the approach you’re taking is because you think it’s the most effective to help people, and you’re trying to help people, which is always a good motivation in any work that you’re doing, particularly as a physician. But, because there is still a lack of education on a broad scale around some of the things that we’re talking about in our discussion here today, if you had a panel of physicians from around the country and had an opportunity to talk to them about some of these core issues, and what you think is being missed, or even a panel of parents who were in fear because their kids were dealing with some of these kinds of illnesses and they didn’t know how to approach it, what do you feel is the most important information to convey and communicate that could help people to sort of shift their understanding and thinking?

Denis Well, I think the most important concept here is the fact that neuropsychiatric symptoms, particularly those that are of acute nature, that they come out of the blue, if you will- particularly in children, but also in adults- can be often infection-induced. So, when you’re seeing a patient with neuropsychiatric symptoms- and that not only relates to anxiety and OCD, as in the case of classic PANDAS, but also more severe neuropsychiatric disorder such as schizophrenia, for example- you have to, in my opinion, you’re obligated as a physician to do an infection-based workup to make sure that the driving force, that the chemical imbalance in the brain which has caused these symptoms, is not as a result of an infection or infections in the body. Because if you miss that, then you’re going to have a patient that’s never going to get better and just marginally treated with psychiatric or psychotropic drugs for the rest of their lives.

Shay And that’s a game changer for the rest of their life.

Denis A game changer for the rest of their life. That’s right. And also, I want to add- just going back to the allergy piece- a lot of these patients that have misdirected immune systems, they will flare or exacerbate during allergy seasons. So, in the spring, the fall, particularly in the spring, when the immune system is engaged on an allergic basis, the neuropsychiatric symptoms can also exacerbate during that time.

Shay And I also want to just say, because you did make this point, and I do think it’s important, this is a way that things could get missed when there’s an infection. It is also very important which lab the physician is using, because, like you said, some of these, they are not going to show up in a high quantity even though they’re in the body. And also, because from what I understand from some of what I’ve read, because they’re hiding in the tissues, right? It’s not so easy. They’re sort of tucking in, so to speak, to see that they’re there, and they’re clever, right? Because they’re trying to stay in our body so that they can live- that’s the function of life itself, right? To stay alive. And so, there’s a way in which you also have to have a good relationship with a lab that’s sophisticated enough to be able to help you to see what’s there. Is that correct?

Denis That’s correct. That’s a very important concept. And also, the immune response. The initial immune response during an acute infection is different from a later response or chronic response. Initially, the immune response is more robust. So, if you take a patient that’s newly been infected, the laboratory is going to have an easier time to pick up these antibodies. Whereas, if the infection has been missed initially and it becomes chronic, then the immune system will no longer make a strong enough immune response for a conventional laboratory to detect. And that’s what we have to look at other laboratories that specialize in detecting these antibodies.

Shay Great. When you think of all of this, our show is called Conversations on Healing because we’re trying to bring strategies, ideas, new information to people about how they heal, because healing is very complex. It’s a process typically done over the course of a lifetime, and different people are healing from a variety of different things. Obviously, our focus today is on some of these chronic inflammatory illnesses and these kind of vector-based pathogens that are in the body that need to be identified and then treated- and treated in this kind of way that you’re describing, where it’s cotreatment, where all of these are being treated at once. And so, as you think about this idea of healing and how you have approached healing in your work, how would you define or describe what healing is?

Denis Well, healing, it starts from treating these infections effectively. Unfortunately, they’re not treated effectively, and that’s why we have a lot of patients that are suffering in the world. And it’s not just a location- it’s a pandemic. It’s really a pandemic and it’s a silent pandemic. So, healing starts from the top- that is, identifying these infections, treating them effectively, and then allowing the immune system to rebalance. Because at the end of the day, the symptoms that we’re talking about, that can be grave in some patients, is a collaboration between the infection and the immune response to these infections that is genetically predisposed. So, the immune system has to heal, it has to rebalance, but it won’t do so unless the infections are treated collectively and correctly.

Shay It’s very valuable.

Denis Yeah.

Shay Is there anything else in our conversation today, as we begin to bring this to a close, that you feel we haven’t had a chance to talk about, but that you think is very valuable for our listeners to know or understand about this work that you do?

Denis So, sometimes antibiotics will eradicate the infection, but the immune system does not rebalance. It does not go back to the state it was pre-infection. And often, there are neurologic sequelae to these infections. For example, neuropathies. There are patients that can have neuropathic symptoms. They can present with numbness and tingling in the fingers, their feet, muscle weakness, muscle twitching. That can be incapacitating and progressive. In these situations, we have to layer in an immune treatment protocol, often with antibodies, and that’s known as intravenous immune globulin or IVIG, that people have heard of. So, when the immune system has started to attack the nervous system and we are treating these infections and the immune system is not rebalancing and symptoms persist, often, we have to layer in IVIG as a treatment- an additional treatment modality to take the patient to completion in terms of therapy.

Shay That’s a good piece to add, and I hope that you continue to publish and write and talk about your work so that the word gets out there more. And really, honestly, my goal in having this conversation on our podcast today is just simply to provide this new information to people who might be struggling, because we’ve discussed so many of these families are struggling, and they’re at times feeling very hopeless. And I think what your work is offering is something quite promising about pathways for how you can more specifically treat these illnesses, decrease that load in the body, and then bring the whole immune system into greater balance so that the functioning of your day-to-day life can be so greatly improved. So, I think there is hope, and so we want to give people an understanding of what some of the possibilities are, and then a direction that they can specifically take to get a good course of treatment.

Are there other sources, websites, tools, recommendations that you have for people who are struggling with some of the conditions that we discussed today?

Denis I think people who are- families who are struggling, can get some resources. There are a lot of things on the internet that are published, but really credible publications are on PubMed, which is a government website that has, or houses or all scholarly work that’s been done by people in this field. I think that would be the best source.

Shay Great. Alright. Well, I want to thank you so much for taking the time to have this conversation. Hopefully, it’s enlightening for some of our listeners who are feeling the challenges of some of these conditions because you look at the number of people just with long COVID alone, it’s quite startling. There’s a lot of people now impacted, and so another idea for how they might be helped in their course of treatment. So, I think it’s wonderful to be able to offer this. So, thank you so much for taking the time today.

Denis It was my pleasure. Thanks for having me.

We hope you enjoyed this episode of The Conversations on Healing Podcast. If you haven’t yet, please go to Apple Podcast, Spotify, or your preferred podcast platform and subscribe, rate, and review this podcast, it helps so you won’t miss an episode. See you next time.