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Jill Brook: Hello, fellow mast cell patients and beautiful people who care about mast cell patients. I'm Jill Brook, and today we have an episode with Dr. Tania Dempsey, answering listener questions about Lyme disease, Alpha-gal and other tick-borne infections and MCAS. You may recall that Dr. Dempsey is a world renowned expert in complex multi-system diseases, and the founder of the AIM Center for Personalized Medicine in Purchase, New York.

She's board certified in internal medicine and in integrative and holistic medicine. Having graduated from Cornell University and then the Johns Hopkins University School of Medicine with residency at NYU. Her clinic attracts patients from all over the world and she's on the board of ILADS, the International Lyme and Associated Disease Society.

So she is a world leader in expertise on tick-borne illness and related diseases. We're so grateful to have you here today, Dr. [00:01:00] Dempsey.

Dr. Tania Dempsey: I'm happy to be here.

Jill Brook: So I know you have spoken at great length about Lyme disease and related tick-borne illness, and today we have a lot of listener questions, people who've been listening to you and they have follow-up questions. So you're getting like the hard questions today, I think.

Dr. Tania Dempsey: Oh, okay. Okay. I'm ready.

Jill Brook: But the first one I thought I'd start with is just kind of a more general question, which comes from somebody who says, this is a little bit funny, I'll, I'll read it as if it's her. She says, why are infections from tick bites so complicated compared to other infections or other animal bites? I've been bitten by a cat, a Guinea pig, and a goat, and while none of it was pleasant, I never worried that these bites would lead to chronic illness or misery. And there was never any controversy over the medical treatment. So what makes ticks so nasty and complicated?

Dr. Tania Dempsey: Okay. So let me back up a little bit and say that bites from those animals actually transmit quite serious [00:02:00] infections, including Bartonella, which can be transmitted by ticks, but also can be transmitted by bites from mammals. Cats are one of the biggest carriers, but all mammals can carry Bartonella.

So a bite from that will transmit Bartonella. And some doctors and medical providers will say that, oh, you got the Bartonella from the tick. You could have gotten it from a cat scratch, a cat bite, or a bite from the other animals. So the fact that she mentioned that I, I do have to say that it's not just about the ticks.

It's actually much more complicated because Bartonella is also transmitted by fleas, lice, spiders, biting, biting flies, ants, mosquitoes, and I'm probably missing some, there are lots of things. And exposure to these animals and bites from the animals or scratches from the animals. So that I have to say. The other, the other issue really is that again some [00:03:00] infections are transmitted by the ticks.

Some things are transmitted by other, other insects. So there are lots of ways to get these infections and for them to become chronic. And then I would say that in general people who wind up being sick from these infections often have other problems with their immune system that causes the issue.

So the point being is that I've had patients who have been bitten by a tick, got Lyme disease, maybe other infections, but, but we treated them and maybe we caught it early. I have a lot of theories as to why some of these patients are in remission for many years. You know, we can say almost that they're cured.

We don't know, but they've been asymptomatic for 10 years, you know, and they were treated a long time ago. But I have other patients who keep relapsing. They keep getting sick despite, you know, various treatments. So there's, there's two things. One is the nature of the infections themselves, where they [00:04:00] hide from the immune system.

They, they camouflage themselves. They change shapes and forms and where they live. And so they can evade the immune system, they can suppress the immune system so that it becomes harder for our, our immune system to actually see it, which is why these infections can be insidious, until it becomes really more prominent.

So that's partly the issue. And I think the other issue is that there's a good subset of patients with tick-borne, we'll call it, or vector-borne infections who already have an altered immune system. They have mast cell activation syndrome, for instance. That's probably the leading problem. And their immune system is not recognizing those infections correctly. And so it's overreacting to the, to the wrong things, but not reacting to the things that they should be reacting to, like infection. And so it becomes, it's, it is just, it's very [00:05:00] complicated, let's put it this way. But I wanna say one more thing. These infections are not necessarily the only types of infections that act like this.

There are simple infections. Or simpler infections. Let's take staph for instance. Staphylococcus. We have a lot of staph that lives on us, in us, and generally speaking, it should not cause a problem. But when the immune system gets suppressed or there's a, there's a cut or a wound or something. There are lots of reasons why people can get staph infections.

Some of these infections are, are bad, like MRSA, methicillin resistant staph aureus. There are lots of types of staph. But staph can also kind of go dormant in the body and can come out at certain times. So I have patients who had MRSA at some point in their life, and they can get it again. It can come out again.

It's [00:06:00] because it's living inside of them in what we call biofilms. Strep can live in biofilms. People think, oh, you have strep, you take 10 days of antibiotics, it goes away. Guess what? It doesn't go away. The immune system takes over and tries to control it, and if the immune system can't control it, it'll come out again.

So like I always think of kids. They get strep and then like a month later they get strep again, right? And the, and the pediatrician will say, oh yeah, strep's going around. They probably picked it up again. They didn't pick it up again. It's from, it's from themselves. They have it hiding in their tonsils or in their gut or somewhere in their body and their immune system probably just couldn't take over after the antibiotics killed some of it. It kills some. The rest is supposed to go into hiding. The rest, the immune system is supposed to handle it. Epstein-Barr is another one where you get mono, then that Epstein-Barr virus goes into hiding, and then it stays in [00:07:00] hiding until the immune system goes, goes awry for whatever reason. Then it comes outta the cells and reactivates and causes symptoms that resemble mono or it can resemble just like a lot of fatigue type illnesses or ME/CFS or, you know, lots of other things. So, so my, my thought process on this, based on research is that we all have lots of infections living in us. It's how our immune system deals with it.

Jill Brook: So that's interesting because that brings up another question that came up, which was that if someone's had three or four tick bites in their life and they've been okay so far, at some point, do you ever reach an age or a number of tick bites where you can start to feel like, well, maybe I got lucky, but maybe I just have an immune system that can handle it and I don't need to worry so much.

Dr. Tania Dempsey: Yeah, then it could be, it could be both. It could be, you know, there's eventually a [00:08:00] straw that breaks the camel's back. Maybe what, what gets transmitted in the tick is enough. Like maybe Lyme was before or maybe there was not much. It could be then by a tick, and there may not be anything that the, the tick is transmitting.

But maybe that one time you get the, you know, the trifecta of Bartonella, Babesia, Lyme. So it's hard to know. But I do believe that there are lots of people out there. Well, I don't know how many, but there are plenty that are able to handle whatever they've been exposed to. You know, I, I think about families.

I take care of a lot of families, which is one of the, like the, the greatest gifts that I have that, that, you know, patients trust me and, and the whole family comes, you know, sometimes I take care of two or three generations. And you know, I see very often, sometimes one or two people in the family have really bad Lyme, MCAS, and the other stuff.

And maybe, you know, another person, you know, has some very, very mild [00:09:00] symptoms, but really generally feels pretty healthy and maybe needs very little to, to, you know, get them to a better place. Then the other person has, has no symptoms, but if I test them, and I've done this with families, you test them, some of the people who have no symptoms have the worst results. They, they clearly have infection, but again, their immune system has, has approached it differently. Having said all that though, I will say that I have had patients who we for years think are fine. Their immune system is handling it.

We know they're exposed 'cause we know, let's say their kids have had it and their kids have been sick, and let's say one of the parents, you know, has been feeling good, but we find the positive result. Back before I understood the danger of the, I mean, I understood it, but I don't think I, I think, you know, patient says they're really healthy.

You know, I kind of feel bad about doing something that's gonna be very aggressive if they feel healthy. But what I've learned is that [00:10:00] that can turn at any point because there's some other trigger. It could be COVID, could be a vaccine, or like the COVID vaccine. It could be some other stressor that actually then brings it out.

And so I've had patients where they're fine, they're fine, they're fine. We know they have the infection, and then all of a sudden they wound up with Hashimoto's thyroiditis, they wind up with all these autoimmune markers, then they wind up with atrial fibrillation and they wind up with all these things that we realized were actually driven by the infections.

But they were, you know, in hiding until like something brought them out.

Jill Brook: Okay. That's interesting. So we had a whole slew of different questions that were sort of in the category of what would you do at this time point or that time point after a tick bite. And the questions ranged from anywhere from, you know, two minutes to 20 years. So maybe it's quicker to just ask you sort of, do you have different things you do at [00:11:00] different time periods. And there was, you know, a lot of questions about what would you do if you were just bitten by a tick, or if you have someone in front of you who's just bitten by a tick. But then also, what if it's been a month or two month or, or can it even be 10 years? And it sounds like from what you just said, it can be, but maybe you could speak to different approaches at different time periods.

Dr. Tania Dempsey: Yeah, yeah. Let, let's take the first case, just bitten by a tick. If, and, and I can't emphasize this enough, and I've done a bunch of Reels on this, if you find the tick on you and you've removed the tick carefully without squeezing it, and there are a number of tools out there that I think are really good at helping to remove ticks, because if you squeeze it, it can push the, the stuff inside of them, into you, so then you actually increase the risk of getting one of the infections. But you pull it off, you put it in a bag, and you send it to a lab that will test what the, what the tick is carrying. Because I've had [00:12:00] patients who are really worried that they've gotten something from this tick, and the lab says, no, there's no Lyme, there's no Bartonella, no Babesia, no there's nothing in it.

Great. Okay. So we may have started some treatment just in case until we know what's growing. But if there's nothing there, fine. You know, great. But we may, I will still start treatment and then wait, and if something shows up, then I'll change my approach. Some patients don't find the tick and that's the problem.

If they don't find the tick, then we have another sort of path that we have to think about. They don't find the tick, but they they see something on their skin. It looks like a bite. It looks like something, right. Then we have to determine if that's a rash called erythema migrans, which is the EM rash. It's the, it's the bullseye rash. We say bullseye. I'm gonna tell you right now, it's almost never bullseye. And it can look very different with, with lots of, you know, for lots of different people. But if there's any kind of [00:13:00] rash and there's an assumption that they were exposed, maybe they know they were somewhere where they could have been exposed, they were outside, they didn't use bug spray, et cetera, et cetera.

Then once you see a rash, you have to make an assumption there's Lyme disease. That rash is Lyme disease. You don't need to be tested at that moment. You have to be treated immediately. And sometimes we have to make assumptions that may not only just be Lyme, that it could have been carrying other things.

So we often have to put them on a protocol. I usually will use something like doxycycline and I'll combine it with some herbs and some other things 'cause I wanna help the immune system. There are lots of different protocols for that. But the, the main thing is that anything that looks like a rash has to be taken seriously and considered.

Now, some people come to us and they have a bite that looks like a, could be a spider bite, could be something else, right? So we always have to kind of think about what we're, what we're dealing with. Then there are gonna be people who don't know they've been by a ticket all. They have no sign of it, they have [00:14:00] no tick bite, but they start having non-specific symptoms. I always say if you have flu-like symptoms in the summer, you have to consider one of these tickborne infections. You can get the flu in the summer, but it's very unusual. So, you know, then we have to take this seriously.

Then we have to go through testing. The testing will be negative until pretty much like a month or so after the tick bite. So when you get a tick bite, if a doctor says to you, we need to test you, like do a blood test, that's ridiculous because it's not gonna show anything until there's you know, there's some time that has passed like about a month.

So non-specific symptoms in the right setting, the right person may warrant some testing. And there are different types of testing that we do. And then we determine whether, you know, that patient needs treatment, right? So there's a lot of paths that, that, that opens up too, in terms of treatment.

Again, it really depends [00:15:00] on symptoms. Acute symptoms we may wanna treat early on, especially if there's a high index of suspicion. Then once we get more results, then we can always change our course. So it does differ, right, depending on when you're, you know, when you're exposed. But I definitely have patients who were probably exposed or gotten infected years ago.

And some of them know that they've been infected. I've had patients who have said, oh, I was treated for Lyme 10 years ago. I, I know I had Lyme, but now my symptoms are, you know, X, Y, Z, and I think I just have MCAS. Or I just think I have, you know, whatever. And invariably, the Lyme is still there. We test it and we find molecular evidence, either PCR, FISH, something that shows that the infection is like alive and growing and multiplying.

They often still have the infection because the treatment that they got was not extensive enough, maybe not long enough, maybe [00:16:00] not, not the right treatment. Maybe their immune system couldn't kick in. And so then over time their immune system has gotten worse and worse. And so now they're more reactive.

They have food intolerances. They have a lot of things. So, so I think, you know, for people who know they've had exposure and think that they've been tested but still have some symptoms, they may be different from the original symptoms, I really strongly suggest that they consider testing again.

Jill Brook: Do you have any tests that you would say are either good choices or bad choices that, that, since there's so many different tests out there?

Dr. Tania Dempsey: Yeah, so I'm not a big fan of antibody testing. And there are quite a number of of labs out there that do antibody testing. There are a few issues. We've spoken about this on the podcast before because we wrote a paper, Dr. Afrin, myself, and Dr. Weinstock, on the issues related to antibody production, particularly in mast cell patients, patients who have Mast [00:17:00] Cell Activation syndrome. Because what the mast cell is known to do is not just to explode and release their mediators, but also they talk to other parts of the immune system, including the cells that make antibodies. Those are the B cells, B lymphocytes, and the mast cell could be sending false information to those cells. And so they start making antibodies. And you do a test for Lyme, and I've had patients who have like every band positive for Lyme, every infection, they have like 20 infections, antibodies only. And and that to me reflects their immune system more than it does actually, whether they have infection. The opposite can be true too. There are some mast cell patients who actually don't make good antibodies. Their immune system is basically shut down so they don't even see what's going on. So you do an antibody test, it could be all negative. You can get a negative Western blot and, and then, [00:18:00] you know, of course, like the doctors will say, oh, you don't have Lyme, everything's great. They could have fulminant Lyme, but the antibodies will not pick it up because their immune system is not seeing that it has to fight Lyme. You need an immune system that actually recognizes what it needs to fight, then it will produce antibodies to it to fight it. So there, there are two big issues there. And so I really tell people we can't rely on it.

I, I actually got a email the other day from a colleague who wanted some help with with an MCAS patient and, you know, it seemed to me like it was still unclear about the triggers. So I kept saying, well, what are the triggers, what are the triggers? And I remember she said, oh yeah, all her antibody testing, called immunoblot by some labs, was negative, so I know she doesn't have infection. And you actually don't know that she doesn't have infection. You need a molecular test. You need either some type of PCR test. There are a few labs that do that. Or a FISH [00:19:00] test, and there are a few labs that do that. And FISH is fluorescent in situ hybridization. So it's using an RNA probe to bind to the DNA of whatever you're looking for, whether it's Lyme, Babesia or whatever, and if, if it binds, it means, and it lights up, it's like a fluorescent test, then you know that there's active infection, that it's actually this bacteria, parasite or whatever is multiplying. That means it's active. PCR, similar. PCR is a little less sensitive in in these infections, but, but sometimes can be, can be helpful.

So the key is, the problem with these tests is that they're very expensive. Antibody tests will be cheaper. Molecular tests will be more expensive. And, and, and I've talked to the directors of a lot of these labs and they are working to bring the prices down because they know it's a problem. It's just that the testing is so labor intensive that it costs a little more, but that is [00:20:00] the gold standard.

Jill Brook: And how accurate is it?

Dr. Tania Dempsey: Well, a lot of the, these labs have done their, their validation studies so they match it up to other tests, other labs. So it's, it's, they're fairly accurate. The problem is that I think if you get a positive, the, the rate of false positivity is extremely low. If you get a negative though, it could be false negative.

So it could be that there's that day you draw blood, you don't catch it in the blood, it's, it's hanging out somewhere else in the body. That's the biggest challenge with these tests is that we're relying on blood samples and some of these infections live in the blood and some of them spend very little time in the blood and they go elsewhere.

So, so it can be negative but not be negative. And so that's why sometimes we have to repeat it. We'll get a negative and the patient will feel, you know, reassured, you know, okay, you know, I'm negative. I'm like, well, we'll wait [00:21:00] a little bit. Let's just see. Because if I think the symptoms are very suspicious, I'll wanna do another round .

Jill Brook: Okay. And we had a lot of practitioners writing in asking you how you start introducing treatments in patients who are so reactive already anyways. Do you try to treat the mast cells first and get them to calm down, or do you start the, the treatment towards the infection first, assuming that will work.

There was a lot of questions about kind of like, oh my gosh, these people are so reactive, it's hard to do anything at all with them. So how do you start?

Dr. Tania Dempsey: So, here's where I think this is like the art of medicine. As much as I would love to put together an algorithm where, you know, practitioners could be like, oh, okay, we start here, then you do this next, and you do this next. Doesn't work, right, because everyone's individual. And so some patients, I [00:22:00] have to work, start with their mast cells.

And, and I would say that actually that's a majority of patients. I've gotta do something for their mast cells because those are the symptoms they're having is through the mast cells. We often have, you know, lists of, of, of symptoms related to, you know, these different infections. But a lot of those symptoms are actually driven by the mast cell.

So either way, we have to start there. But sometimes you can do all the mast cell work in the world and you can't get those symptoms under control. You can't get people feeling better because the infections keep driving it, right, that's the problem. They, they serve as triggers and if it's still a problem then, then it may be very difficult to get the mast cell under control.

So it could be, we try, we try some things first, we see how the patient reacts, we can't find a path, then we sort of pivot a little bit and see what we can do on the other end. We sometimes have to be very, very [00:23:00] cautious. You know, sometimes we use herbs, sometimes we use, sometimes we're just working on the immune system.

Sometimes we're, rarely, but, but sometimes antibiotics. Sometimes the other types of treatments that I have available in my office. So if someone's really sensitive, I can start them doing things that maybe are less invasive, but I know it's gonna help a little bit.

And then I'm gonna keep advancing. You know, maybe, maybe they're really deficient with vitamins and minerals. So if I give them some, some IV vitamins or minerals and, and I do it carefully, sometimes that helps the foundational stuff. Then I can go in with other stuff. Sometimes I have to do an IV of phosphatidylcholine and that can help stabilize the cells, even the mast cells, and help with the infection.

Then I can go in with something else. So I have, you know, a lot of tools. I love, I know you're doing the NanoVi right now, and, I don't know if people are gonna see it, but I love the NanoVi [00:24:00] even for people who are really reactive, because it is very well tolerated. It's basically breathing in structured water, helping the body regenerate antioxidants, and that could be really helpful if they're fighting an infection and they're really sensitive.

Maybe that's just a, a way to start the body from like learning how it can heal before you could do anything else. So, you know, it's very personalized. We really have to figure out what's right for, you know, each patient. And it is, it is complicated, unfortunately.

Jill Brook: Right. Yeah. And we haven't even gotten into the co-infections and we have so many questions about those, but I know you need to go in three minutes, so I think maybe we'll have a follow-up episode if that's okay. But we still have a few more on just Lyme and lots of people are wondering if you have any thoughts on the new Lyme vaccine.

And we had one question about wondering if you have Lyme disease and you got the Lyme vaccine, might it help you kick the [00:25:00] chronic Lyme disease?

Dr. Tania Dempsey: I doubt it. I, I am hesitant about it. I, we, we saw something, what happened, I guess it was 1990, the early 1990s we had an issue with the original Lyme vaccine. And and so unfortunately this vaccine is actually not that different. There's some subtle differences, but, but it's actually quite similar.

I think we're gonna run into issues, but more importantly, no, it will not help you heal from a past Lyme infection. And, and the problem is, and and related to this question about co-infections, I don't even call 'em co-infections anymore because you can get one or the other, like alone. You don't actually need to have Lyme to have Babesia.

You can have just Babesia, you can have Babesia, Bartonella, you can have Lyme, Bartonella, Babesia. Lyme is almost never, I don't know the last time I saw a Lyme patient. So Lyme is often used as an umbrella [00:26:00] term. So a lot of people just will say, oh, I have Lyme disease. It's just easier to, than getting into it with other people.

But, but Lyme doesn't exist alone anymore. Everything is is connected to it. So, the problem with a Lyme vaccine is that even if you protect yourself from Lyme, what it doesn't protect you from Babesia and Bartonella, Ehrlichiosis, Anaplasma and all these other infections that are transmitted by the tick.

So I think what it does in a way too is it, it, I, I mean I have issues with the actual vaccine, but also just on a philosophical note, like what I think it can provide a little bit of false reassurance or, you know, sort of a feeling of, oh, I have the vaccine so now I don't have to worry. And meanwhile, you could still get, you know, dozens of other infections.

Because it's not about the Lyme, it's not about the Lyme. It's about the combination of infections, it's about the immune system, it's about all these things. And so that's, you know, the real, the real issue.

Jill Brook: Yeah. [00:27:00] Okay. Well, I know you need to go. I, I just have one last question.

Dr. Tania Dempsey: Yeah. Yeah, of course.

Jill Brook: Which is, is there anything sort of in this space, any new treatments or research or anything that makes you kinda optimistic or what, what good news is there in the Lyme world for people?

Dr. Tania Dempsey: No. Yeah, so I know that there are some labs that are looking at either repurpose drugs or some new drugs. So there's some stuff on the, on the horizon. But, but you know, sometimes again, the, they may find in a particular drug that works for Lyme, but it doesn't work for Bartonella or Babesia. So it's still like little bit you know, kind of a, a little bit of a desert in my opinion.

My favorite thing for treating patients, especially if they're very, very sensitive, is SOT Therapy or Supportive Oligonucleotide Technique, or now known as Q-REstrain is the new name for it. And it's a, it's a very molecular way of [00:28:00] treating it. So my issue with antibiotics and other things is that I, it's not that I don't do it, there's a right time for it.

It's just that for, for patients who are very sensitive, for patients who have gut issues, antibiotics can, you know, cause a host of issues. So what this SOT or Q-REstrain does is the lab creates a a, a protein, an RNA that matches the DNA of whichever infection you're going after. So if you're going after the Lyme, Borrelia burgdorferi, they can create an RNA that matches the DNA of the   Borrelia burgdorferi. If you have a Bartonella, if you have a Babesia or different strains of all of those they can create based on your blood and based on your results, something that matches it. So when it's infused into the body, so that's what we do, we'll, we'll give it, we'll do it as an IV one at a time, that those molecules go into the cells and bind to the infection, whichever infection, and basically [00:29:00] send a signal that they should stop multiplying. And when they stop multiplying, they die. So it is like a direct, again, I love, I love this therapy because it's a direct effect on the actual infection.

The downside is that you need to do multiple ones because most people have multiple infections. So one, one is never going to do it. You're gonna have to do multiple ones. It can be a little bit on the expensive side. And that, that can be hard because if you need multiple ones it adds up. But for my mast cell patients, that's been the best tool that we can use because while some people do get die off reactions, they're called Herxheimer reactions, they're not quite as bad as usually, you know, when we see people go on antibiotics.

And, and we also have tools to help patients get through it, and try to modify, you know, their, their reactions. Especially if we can get their mast [00:30:00] cells happier. So, so that to me, this is not a new technology. We've been doing it, I started doing it in 2017, around 20 17, 20 18 with a little bit of a stop from during COVID, and then we resumed.

But so we've been doing it quite a long time. I think there's more and more research. I think there are gonna be more publications. I'm hoping to publish on it. So it's still exciting to me. Do we need more than this? Yeah, absolutely. You know, but I always, I like, I like to have as many tools as possible because every patient is different.

Some patients I could do SOTs on and some mast cell stabilization, and that might do the trick. Some patients, I might have to do other IVs before I do SOT. But I'm always working on their mast cells. But then some patients I might need to do therapeutic plasma exchange or TPE before I do SOT. So there's all these ways of doing it. And again, I like to say it is the art of medicine. You know, you need, [00:31:00] you need the knowledge. You know, thankfully I've been well educated. And you need the knowledge, but, but what you start to learn over time is that no two patients are alike, and every time I think I have found the, the path that's gonna be, you know, helpful, then I try it in another patient and it works differently.

But the SOT is the one that most consistently seems to be a really great tool that, that I continue to be excited about.

Jill Brook: Well, that is exciting. And and for people listening, we have a whole episode where we talked about some of the, the kind of leading edge treatments that you're using in your clinic, and I'll put a link to that episode in the show notes for this episode so that people can find that if they wanna hear you talk more about that.

But Dr. Dempsey, I know that you stayed so late to speak with us and you've gotta go, but thank you so much for all this wonderful information.

Dr. Tania Dempsey: My pleasure.

Jill Brook: We're grateful to have your, your expertise on our team.

Dr. Tania Dempsey: Oh no, it's my pleasure. And we'll do a part two to cover the rest.

Jill Brook: [00:32:00] Perfect. Okay, listeners, that's all for today. We'll be back soon. Until then, thank you for listening. May your mast cells be good to you and please join us again soon.