Episode #106: Bartonella and MCAS with Dr. Tania Dempsey, MD
Last Updated: January 13 2020
Why You Should Listen
In this episode, you will learn about Bartonella and Mast Cell Activation Syndrome, the role they play in chronic illness, and options for addressing them.
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About My Guest
My guest for this episode is Dr. Tania Dempsey. Tania Dempsey, MD received her MD from the Johns Hopkins University School of Medicine and her BS degree from Cornell University. She completed her Residency at NYU Medical Center / Bellevue Hospital and then served as an attending physician at a large multi-specialty medical practice in White Plains, NY, before opening Armonk Integrative Medicine. Dr. Dempsey combines primary care treatment and integrative medicine with particular focus on thyroid dysfunction, autoimmune disease, hormonal imbalances, vitamin deﬁciencies, food sensitivities, and weight management. She is an active staff member of Greenwich Hospital in Greenwich, Connecticut. She is a member of the Institute for Functional Medicine (IFM) and the American College of Physicians and holds a certificate in Vanguard Endocrinology. Dr. Dempsey has been featured on Fox News, Harpers Bazaar, Readers Digest, Clean Plates, Prevention, SHAPE Magazine and countless other media outlets.
- What are the vectors for Bartonella transmission?
- What are the hallmark symptoms of Bartonella infection?
- Is Bartonella more common and more devastating than Lyme itself?
- How does Bartonella impact the neurological system and result in symptoms that may appear to be mental and emotional?
- What testing approach has been most helpful for identifying Bartonella?
- What is the role of Bartonella in autoimmunity and in conditions such as PANS, Rheumatoid Arthritis, POTS, dysautonomia, insulin resistance, and Type 1 diabetes?
- What is the connection between Bartonella and MCAS?
- What is MCAS, and how does it impact the body?
- How common is MCAS in the general population and in the chronically ill population?
- What are the best tools to test for the presence of MCAS?
- What is the QEESI, and how do MCAS and MCS overlap?
- What is the role of the vagus nerve in MCAS?
- How does one detoxify the body if toxins themselves lead to mast cell activation?
- Is CIRS a mast cell activation syndrome induced by mold?
- How is MCAS treated?
- What is the role of genetic and epigenetics in MCAS?
- What is the role of neuroplasticity or limbic system retraining in MCAS?
Connect With My Guest
October 15, 2019
Transcript Disclaimer: Transcripts are intended to provide optimized access to information contained in the podcast. They are not a full replacement for the discussion. Timestamps are provided to facilitate finding portions of the conversation. Errors and omissions may be present as the transcript is not created by someone familiar with the topics being discussed. Please Contact Me with any corrections.
[00:00:01.17] Welcome to BetterHealthGuy Blogcasts, empowering your better health. And now, here’s Scott, your Better Health Guy.
[00:00:15.09] The content of this show is for informational purposes only and is not intended to diagnose, treat, or cure any illness or medical condition. Nothing in today’s discussion is meant to serve as medical advice, or as information to facilitate self-treatment. As always, please discuss any potential health-related decisions with your own personal medical authority.
[00:00:36.17] Scott: Hello, everyone, and welcome to episode number 106 of the BetterHealthGuy Blogcast series. Today’s guest is Dr. Tania Dempsey, and the topic of the show is Bartonella and Mast Cell Activation Syndrome. Dr. Tania Dempsey received her MD from the Johns Hopkins University School of Medicine, and her BS degree from Cornell University. She completed her residency at NYU Medical Center Bellevue Hospital, and then served as an attending physician at a large multi-specialty medical practice in White Plains New York, before opening Armonk Integrative Medicine. Dr. Dempsey combines primary care treatment and integrative medicine with a particular focus on thyroid dysfunction, autoimmune disease, hormonal imbalances, vitamin deficiencies, food sensitivities, and weight management.
She is an active member of the Greenwich Hospital in Greenwich, Connecticut, and a member of the Institute for Functional Medicine, and the American College of Physicians and holds a certificate in Vanguard endocrinology. Dr. Dempsey has been featured on Fox News, Harper’s Bazaar, and Reader’s Digest, Clean Plates, Prevention, Shape Magazine, and countless other media outlets. And now, my interview with Dr. Tania Dempsey.
[00:01:51.00] Scott: I was introduced to Dr. Tania Dempsey at last year’s ILADS meeting by our mutual friend Corey Levy. Here we are almost a year later, and I’m excited today to learn about Bartonella and Mast Cell Activation Syndrome from Dr. Dempsey, thanks so much for being here today.
[00:02:06.01] Dr. Dempsey: My pleasure, thank you for having me.
[00:02:07.26] Scott: What drew you to the work that you’re doing today, being so passionate about helping people with Bartonella, with mast cell activation syndrome, with other complex conditions. Did you have some personal experience with your own health journey?
[00:02:21.08] Dr. Dempsey: It’s a great question. And my journey has come from so many different directions. So I will say that I’ve always been passionate about treating patients who other people, other doctors can’t figure out. So sort of what I would call mystery illness patients, right, chronic patient who’s no one’s ever been able to help. So that’s been sort of my niche for a very long time, and that’s because I’d like to think outside the box. I know that they’re sick, I know there’s something wrong, and so I want to figure it out. So I think I’ve always had that, but I’ve had some very interesting experiences in my life that sort of brought me more into this realm.
One was the wonderful introduction to Dr. Richard Horowitz, probably around the time where I started my integrative practice. So it’s like almost 10, 11 years ago, he and I spoke at a conference together. I was overwhelmed in a good way by the information that he had, and I remember the conversation I had with him. When I first opened the practice, and I practice in Westchester County, which is a suburb of New York City, which is endemic for Lyme disease. And he said to me well you must see a lot of Lyme disease in your practice, and I remember saying well I have a few cases, and he said no, you don’t. And I said oh, he said you’re not looking, and you’re not thinking about it enough.
And that next year or two was life-changing for me because the more I thought about it, the more I put him into my head, the more I realized that so many of these patients were infected, and I’ve been dealing with the consequences of it for years sometimes. And so once I started seeing it, then I started seeing it. And I remember seeing him a few years later and saying, remember when you said that I had more patients than I thought, well you’re right maybe 90% of my patients actually have Lyme disease. And so once I got it and understood that that was such a big part of a lot of these chronically ill patients, right then it made sense.
So then that’s where my path is; it turns out that around the same time, several people in my family got Lyme disease. Thankfully I was tuned into it already, and thankfully I knew what to do. But we were seeing that we’re living in the same area my patients are living, on then what became very clear is that some of these patients who had been infected with Lyme, Bartonella, Babesia, or any of the co-infections often didn’t get better. Not because of persistent infection all the time, but sometimes because their immune system had become dysregulated. And that’s when I discovered mast cell activation syndrome, and as soon as I identified my first patient, and had the opportunity to work alongside Dr. Lawrence Afrin, who really is the world’s expert in mast cell activation, then I kind of understood everything. And so it all came together for me, and that’s where I am now.
[00:05:13.21] Scott: Beautiful, what a journey. Most people listening to this show will be familiar with Bartonella, and it’s probably one of the more difficult aspects of recovering from what we think of as chronic Lyme disease. I’m really interested in your perspective on it. So what are some of the vectors or mechanisms of transmission for Bartonella? Can it be vertically transmitted during a pregnancy? And how many people do you suspect might actually be infected?
[00:05:37.21] Dr. Dempsey: Yes, I think this is a bigger issue than Lyme disease, unfortunately. And the reason for that is that number one Bartonella can be transmitted by so many different vectors. So we know, for instance, ticks can transmit it, we know mosquitoes, fleas, lice, spiders, biting flies, sand flies, and the list goes on can all transmit Bartonella and various different species of Bartonella. We know that mammals are carriers for Bartonella, now there are more than two dozen species of Bartonella that can be carried by different animals.
If you’re bitten by an animal, if you’ve been scratched by an animal, we know Bartonella as cat scratch fever. So we know cats carry it for sure, so do dogs and so it can be transmitted that way. We also know that every single place on this planet can harbor Bartonella, so we know that when you look at a map of where Bartonella is, it’s everywhere. It’s in sub-Saharan Africa; it’s in Alaska. And so if you think about, there are 7.4 billion people on this planet, if you think about how many people have been affected by Bartonella, I would say we’re in the in the millions if not billions.
[00:06:55.15] Scott: Yes. I remember hearing even bodies that they dug up from thousands of years ago and found like Bartonella in the teeth, for example, so it’s certainly been around for a long time. Do you feel that it can also be transmitted during pregnancy, is that something you commonly see?
[00:07:11.14] Dr. Dempsey: Yes, thank you for bringing that up. Yes, so, unfortunately, I have seen a vertical transmission of Bartonella, as well as other tick-borne or vector-borne infections. And these children often have lots of sequelae from it. They often have things like they don’t all have to, but autism, attention deficit disorders, anxiety disorders, and many other neuropsychiatric disorders tend to be very much associated with congenital Bartonella.
[00:07:46.01] Scott: So what are some of the symptoms then that you commonly see that kind of clue you into exploring Bartonella further in a specific patient?
[00:07:53.16] Dr. Dempsey: Yes. So definitely, neuropsychiatric symptoms are a clue for me. So an uptick or a new development in anxiety, OCD, depression for sure. Tics, movements, abnormal movements that are not explained that are not voluntarily controlled. There’s a specific type of lesion or rash on the body that you can sometimes see with Bartonella; we call it Bartonella tracks. They used to be called stretch marks or striae, but they’re different than stretch marks.
And when those lesions are biopsied, we find Bartonella in those Bartonella tracks. And so yes, sometimes it’s the rash, often it’s the neuropsychiatric stuff. Many of those patients don’t have different types of joint pain; they often have pain in the bottom of their feet. They can have neuropathy type symptoms, small fiber neuropathy I see very frequently with my Bartonella patients, so yes, it’s a big range.
[00:09:00.25] Scott: Let’s talk a little bit more about the Bartonella tracks. So can one be effectively treated for Bartonella, and still have the persistence of the tracks? Or do they resolve entirely with successful treatment?
[00:09:12.10] Dr. Dempsey: Yes. And again, this is where it’s difficult; I would say that I’m always suspicious when the tracks persist because I’m suspicious that there may still be an infection. And it’s not always easy to biopsy those lesions; I have on occasion I don’t always find Bartonella there even though I think that clinically they have Bartonella. So if I still see the tracks and bands, I’m more likely to continue treatment or start to think about what I’m missing and why it’s persisting.
Now I will say that there is an association, there was an article that was published by Dr. Mozayeni that showed that a patient who developed Bartonella, or had Bartonella infection developed Ehlers-Danlos Syndrome or EDS, and EDS is a connective tissue disorder. And we I have seen now a number of patients who have developed connective tissue disorders from Bartonella, who probably didn’t have it before. And what connective tissue issues lead to is weak tissue, so they often get stretch marks and striae as part of their presentation. And so some of these Bartonella patients have what could be Bartonella tracks but in fact, are probably striae from some of the connective tissue issues that either they’ve developed, or they had before.
[00:10:34.08] Scott: Yes, that makes sense. So that’s an acquired Ehlers-Danlos Syndrome, rather than a genetic Ehlers-Danlos Syndrome presentation. Why is it that you say that Bartonella is not a co-infection? And why might that assumption lead to delaying diagnosis and treatment? Can Bartonella be even more devastating than Lyme or Borrelia itself? And maybe can it be more common than Borrelia itself?
[00:10:58.11] Dr. Dempsey: Yes, absolutely. It’s not that it’s not a co-infection; it absolutely can be a co-infection. But my concern is that we’re thinking about Lyme and the co-infections as like a secondary issue. When, in fact, Lyme could be the secondary issue, and the real problem is Bartonella. And in many of my patients who come to me with the diagnosis of Lyme, what I’ve determined is that Lyme is not the problem anymore for them, what’s the problem is Bartonella, that’s the main infection. And so my concern is that when we think of it as a co-infection, we’re not understanding how important this thing is, and in fact, I do think it’s probably much more common than Lyme disease.
[00:11:35.03] Scott: I agree with you 100 percent, I think Bartonella and even Babesia are often more difficult to treat and often responsible for more of the symptoms that people with chronic Lyme experience, so I absolutely resonate with those statements. Talk to us a little bit about the impact of Bartonella on the nervous system, on our neurological health, on our brain. So many symptoms that people might experience with Bartonella people think of as mental, emotional symptoms. So that anxiety, depression, OCD, rage those types of things. How do you manage those while you’re treating Bartonella itself?
[00:12:10.08] Dr. Dempsey: Yes, and it’s very challenging. Because in some patients, the symptoms are milder, and then in some patients, they’re psychotic. And of course, you have to deal with the psychosis, and that sometimes requires medication in psychiatric care, while you’re dealing with the infection. And sometimes, you don’t need that; it really depends on the patient if it’s challenging. So the way I think about it is that Bartonella really invades the body in a number of different ways. But no matter how it invades the body, it seems to always seem to penetrate into the nervous system, particularly the central nervous system. And when it’s doing that, it’s causing an immune response at the same time and that immune response can look like a couple of different things.
It could be an autoimmune response that it triggers in the body. So the Bartonella is getting into the nervous system, the immune system is seeing something in the nervous system that looks wrong, but is really part of the nervous system, and then it attacks it. And we see very often this autoimmune encephalitis, sort a picture some people know it as PANDAS or PANS in children, but we see this in adults with Bartonella. So often it’s an autoimmune response, the body is really not fighting the Bartonella, it’s really fighting itself in an attempt, it thinks it’s fighting something, right? And so that is a non-productive situation and causes that psycho-neurologic symptoms. Now the other thing we see as far as the immune system of Bartonella is mast cell activation syndrome being triggered by the Bartonella. And mast cells line all the nerves in the body, particularly in the central nervous system.
And the mast cells are there, we’ll talk more about them, but they’re there to protect the body from infection. And so when Bartonella gets into the nervous system, and the mast cells are trying to protect the nervous system, the mast cells are releasing chemicals, those chemicals are irritating the nerves, causing inflammation, causing more autoimmune responses, and now you get the same thing like an autoimmune encephalitis situation, or autoimmune neuropathy situation and then it’s spirals, and these patients can be quite sick.
[00:14:27.20] Dr. Dempsey: So let’s talk a little bit about how we identify or test for Bartonella. What have you found is the most helpful laboratory tests available, how often do you find a positive laboratory result when you clinically suspect Bartonella. And then I’m curious if you do antibody-based testing, and you find only IgG antibodies, but the person has symptoms that are consistent with Bartonella. Would you treat that person?
[00:14:50.29] Dr. Dempsey: Yes, it’s a great question. And the problem in this world of Bartonella, Lyme, Babesia and all these co-infections or infections, there’s no right great testing let’s be honest. And there are problems with testing for a lot of reasons, which we don’t have to get into. But I will say that sometimes you have to treat patients clinically, but it’s nice to have data to support what you’re doing. Particularly if you’re going to go down a more aggressive path like with antibiotics, I’m going to want some documentation. So the two labs that I think aren’t the best at doing this looking at Bartonella is Galaxy and IGeneX. And right now, I think IGeneX’s test which is a Western blot, looking at IgM and IgG of Bartonella, and looking at various strains.
They’re now testing four to five strains of Bartonella, it is really incredible, and they’re looking at FISH testing and PCR testing. So you’re kind of looking at to see if the bug is there, you’re looking at more than just the antibodies. And I would say that the majority of the time I’m not finding the bug, I’m finding antibodies. And I would say maybe 50% of the time I’m able to truly identify a Bartonella infection, and obviously, we see a lot of negative tests, and that’s the challenge. But I’m seeing more and more with IGeneX; I think Galaxy has some good antibody testing. I’ve never seen anybody PCR positive through Galaxy, so I would like to see that because that would help support the diagnosis even more.
And I typically treat if the antibodies are high enough, a borderline indeterminant test, but with the right clinical picture might still be worth treating. I might go down an herbal or homeopathic route; if I have a PCR positive test or a FISH positive test I’m going to maybe be more aggressive, I might pull out the big guns like antibiotics depend on the patient. But yes, more antibodies, higher antibodies with evidence of active infection is going to definitely be easier to address.
[00:17:00.16] Scott: Let’s talk a little bit about the role of our furry friends in Bartonella, can we blame it all on the cats or do dogs play a role in Bartonella acquisition as well?
[00:17:09.16] Dr. Dempsey: Yes, dogs and cats for sure. Right now, I think the estimate is somewhere between 10 and 20 percent of cats carry Bartonella; they are asymptomatic many of them. That’s a problem right, so there are lots of people out there who have cats at home, and they may transmit it. But dogs, I think the rate is almost 5 or 10% in dogs. Don’t quote me on that exact number, but that’s what I heard last, but I have to look at the recent research on that. But yes, dogs can carry it; basically, any mammal can carry it. So theoretically, a hamster in a house, a gerbil, or any of those could theoretically be carriers for this.
[00:17:53.06] Scott: Let’s talk a little about the correlation between Bartonella and other conditions such as Hashimoto’s, rheumatoid arthritis, insulin resistance, type 1 diabetes you’ve already kind of made the connection between Bartonella and autoimmune conditions. So do we also then modulate the immune system as part of the overall treatment with things like low dose naltrexone, or low dose immunotherapy or LDI or even homeopathy which you mentioned as well. Is that immune modulation piece an important part of a Bartonella treatment strategy?
[00:18:22.17] Dr. Dempsey: I think it is. And I mean, I prefer going down that route versus treating the autoimmune disease with immunosuppressive agents. Really because unfortunately, some of these patients are being treated by conservative allopathic doctors who are looking at antibodies, diagnosing rheumatoid arthritis or diagnosing Lupus, and then treating them and suppressing the immune system. Which is a problem because if you have Bartonella, or if you have an active infection, it’s going to be worse. So modulating the immune system is very important, but not suppressing the immune system.
[00:18:56.15] Scott: Makes total sense. Let’s talk then a little about Bartonella, and you mentioned PANS or pediatric acute neuropsychiatric syndrome. When people are exploring PANS, oftentimes, they’ll use the Cunningham Panel. So you mentioned that Bartonella in your patient population plays a role in PANS. Would we see some abnormalities on the Cunningham Panel in someone who had Bartonella that was presenting as an autoimmune type condition? And if so, does treating the Bartonella commonly resolve the abnormal indications on the Cunningham Panel?
[00:19:21.01] Dr. Dempsey: So there isn’t anything specific on the Cunningham Panel that’s going to tell me that it’s Bartonella, so I want to be clear about that, I’m not diagnosing Bartonella, but on a Cunningham. But if a positive Cunningham Panel where I’m seeing high levels of anti-neuronal antibodies and a high CaM Kinase level is making me very suspicious that there’s an infection. My job is to figure out what the infection is, and Bartonella is going to be on the top of my list, particularly if I look at their clinical presentation, the symptoms they’re having.
Definitely, if they have tracks that look like Bartonella tracks etc. and then so I’m using the Cunningham Panel sometimes to understand the level of infection that they have, and I’m using it to understand how I’m going to address their problem. So I know that treating infection will also cause or will help their overwhelming neuropsychiatric illness, there’s no question about it. But whether it translates to a result on Cunningham, on the Cunningham Panel that shows that those levels have decreased, we don’t know yet because there’s not enough research before and after look at these patients whether their levels go down. Do they get better? Many times they do, yes.
[00:20:52.10] Scott: Makes sense, yes. And unfortunately, I know it’s not an inexpensive test to do, so a lot of times, people don’t do the repeat panel right. They do the initial panel and then treat if they feel better, then it’s hard to justify doing it again. I’ve often wondered about the role of Bartonella in SIBO or small intestinal bacterial overgrowth. In SIBO, we use Xifaxan or Rifaximin, which is a related compound to Rifampin, which we do use in Bartonella treatment. So I’m wondering, could it be that treating SIBO with Xifaxan or Rifaximin is actually treating Bartonella in the gastrointestinal tract and that that may be a partial explanation for why some people feel better treating SIBO with Rifaximin?
[00:21:33.12] Dr. Dempsey: That’s a great question. And I have thought the same thing, and I’ve been very suspicious over SIBO in general. What is SIBO really? And why are some of these patients so sick and have so many confounding diagnoses and symptoms? And so my thought is that it very well may be Bartonella in the GI tract, it very well may be some other infection-related.
[00:22:02.06] Scott: How about Bartonella and its connection to oralfacial pain, trigeminal neuralgia, dental problems, cavitations, do we commonly see that?
[00:22:12.28] Dr. Dempsey: Very commonly. And so cavitations is a whole other topic, and I haven’t been able to find someone to prove that there’s Bartonella in the cavitation, so I can’t prove it. But I can say that many of my patients with trigeminal neuralgia, neuralgia in general anywhere in the body.
Neuropathy and dental pain, root canal those patients have some irritation in their nerves, and for me again, Bartonella is right there, and then the mast cells are probably playing a role. So I would say the majority of my Bartonella patients I’ve been able to diagnose with mast cell activation syndrome, majority. And I think that the symptomatology, the neuralgia type pain that they’re having is actually from the mast cell component, but it’s triggered by the infection.
[00:23:07.16] Scott: What are some of the treatment strategies that you’ve observed being helpful for your patient population? When do you feel the pharmaceuticals really are required? Can it be treated naturally? What about tools like ozone or frequency medicine like rife machines? And then is the goal of your treatment strategy to eradicate, or is it to minimize and manage Bartonella?
[00:23:30.24] Dr. Dempsey: So I’ll start with the last part, and say that I wish we could eradicate Bartonella. In my experience, it is a persistent organism. We know that Johns Hopkins just published a study showing the persistence of Bartonella; we know Borrelia is a persistent organism. So I would say the majority of my patients who get better, still, probably have underlying Bartonella. But what makes them better is their immune system, and so my job is to, yes you got to bring the load down of the infection, you’ve got to strengthen the immune system, so that the immune system can handle the load that’s left of that infection, you’ve modulated that immune system and it’s stronger, so that’s usually the goal. Again if I can eradicate, it’s great, but it’s rare that I will.
So sometimes I need the pharmaceuticals the load is high, the patient is extremely symptomatic. I might start with antibiotics, and I certainly have patients that I’ve had to do a year of antibiotics. But I also have other tools; they’re not just on antibiotics because I’m also working on their gut and their immune system and everything else, and I worry about what the antibiotics are doing, but again sometimes they’re necessary. But if I could use herbs, if I could use homeopathy, if I can use yes, I have patients who use the Douglas coil, the rife thing. I feel like there’s not one particular strategy that works for everybody; it really has to be personalized. So some people need a multi-pronged approach, some people are going to get better with one thing, they’re going to do Byron White, and they’re going to get better right. So I think it’s again has to be individualized and personalized, and I have found there are a lot of things in my toolbox that I’ve been successful with.
[00:25:19.28] Scott: Let’s talk them so from an antibiotic perspective. What are some of the antibiotics that you’re finding most helpful for Bartonella? Are we still using fluoroquinolones in some cases, are we using Rifampin, are we using Bactrim or Septra?. What are the tools that are really helpful for Bartonella treatment pharmaceutically?
[00:25:37.19] Dr. Dempsey: So the problem is, and the study came out about a month or two ago from Johns Hopkins looking at the response of Bartonella to these various antibiotics. Azithromycin and clarithromycin combined with rifampin or rifabutin have been our mainstay for Bartonella treatment. And according to Johns Hopkins’s study, all Bartonella is pretty much resistant to those right now, okay, which is really disconcerting.
I have treated patients with that combination along with herbs and other things, and have been successful with them, and they’ve gotten better. So that would be like the standard stuff, sometimes we’ll use a Septra, Bactrim, a sulfa drug on top. Sometimes they also have the Babesia, so I’m doing anti-parasitic and antimalarial. Right now, the exciting thing is this drug called Disulfiram, which everyone is talking about.
[00:26:32.10] Scott: That was my next question.
[00:26:34.00] Dr. Dempsey: Oh, yes.
[00:26:34.21] Scott: Perfect, good timing.
[00:26:39.03] Dr. Dempsey: I mean listen, I think this is a really exciting drug. I have a number of patients I’m treating with it right now; it’s a little too soon for me to say that this is the end-all-be-all. But these are all Bartonella patients, and they’ve all tried other things and have been unsuccessful. And so I’m hoping that this is going to be the answer for them. It is a tough drug, there are lots of things that have to be monitored, and lots of things they have to avoid. They cannot have a drop of alcohol, even an alcohol that could be mixed with herbs. So it’s really a very rigid protocol, but I’m excited to see what the outcome will be, so we’ll see. It’s a little too soon for me, but we definitely had a publication on it already.
[00:27:20.25] Scott: So for people listening, Disulfiram is also known as Antabuse, and it’s been around for decades used primarily to treat alcoholism. In that, if people then have alcohol, and they’re on the medication, it makes them very sick, and so that’s the reference to the alcohol. It’s important to avoid alcohol while you’re using this medication.
I have heard several people talk recently about its use in Borrelia and Babesia, and it sounds like that’s becoming more accepted that it’s helpful there. I had also heard some early observations that it seemed to be helping those with their Bartonella symptoms as well, and it’s still early, but it sounds like you’re optimistic that we may actually be seeing that in Bartonella as well.
[00:28:01.16] Dr. Dempsey: Yes. And there are a couple of other tools for Bartonella, again coming out of some research out of Johns Hopkins. Showing that drugs like methylene blue, which we use actually for, it’s not an antibiotic, and Disulfiram is not an antibiotic. But methylene blue which is used to help reverse a condition called methemoglobinemia, which can develop from taking other drugs.
It’s often used in the emergency rooms as an IV; it can be compounded for oral use that seems to have activity against Bartonella. And so what I’ve started doing is combining that, sometimes with the Disulfiram. And then Clotrimazole, which is an antifungal agent, is found in over-the-counter athlete’s foot creams, Lotrimin is one brand. And it also comes as a troche, so for people who get yeast infections in the mouth or thrush can suck on it. It turns out that Clotrimazole is not only antifungal but may have anti-Bartonella properties.
[00:29:00.12] Scott: Wow cool. I’m liking your toolbox already; I mean, we’re not even into our conversation that far; this is great. One of my listeners asked in the realm of Bartonella, knowing that it’s an aerobic infection. Is there any concern about hyperbaric oxygen therapy potentially making untreated Bartonella worse? Or is that something that still seems to be a reasonable treatment?
[00:29:22.13] Dr. Dempsey: Yes. I think for the right patient, I have had Bartonella patients use hyperbaric oxygen for a number of reasons. For Bartonella, or for some underlying neurologic issues that they’re having. And I’m not seeing any major side effects from it as far as the Bartonella is concerned, but I’ve also not seen tremendous positive results in my Bartonella patients specifically. And I’m not saying hyperbaric oxygen I think has a role in some important medical conditions, I’m not worried so much about side effects because of the Bartonella, but I’m also not thinking that it’s going to be that useful. I don’t know what your experience is, but that’s been my experience.
[00:30:07.09] Scott: Yes. I haven’t been particularly drawn to hyperbaric oxygen in people with chronic Lyme, either. I think in some children I’ve seen some good results, I think sometimes using it as a way to make antibiotic therapy more effective potentially has been helpful. But many of the people that I’ve seen that have done hyperbaric oxygen maybe had some short-term improvements and over time unless they continued it didn’t seem to necessarily persist. So let’s jump into talking about your other favorite topic, which is mast cell activation syndrome.
You and your practice partner Dr. Lawrence Afrin, who spoke at the last ILADS conference, well known for the work you’re doing with mast cell activation. So let’s talk a little more about the connection between Bartonella and mast cell activation. Does Bartonella serve as a trigger for the mast cells, and when we look at all of the different triggers like parasites, mold exposure, electromagnetic fields, other infections. How much of a role do we think Bartonella is playing in triggering mast cells relative to those other contributors?
[00:31:09.20] Dr. Dempsey: Another excellent question. And what I would say is that; let’s start with what the mast cells do. They’re part of our primitive immune system; they are really the front lines for protecting us from the environment, from things that are foreign in the environment. And so our mast cells will react to pollen if your body is sensitive to pollen, it will react to a parasite, a bacteria, a fungus anything that’s coming in contact with you, those mast cells are there to protect you. And so Bartonella is an infection, so there’s no question that mast cells are going to be primed and agitated and reactive with Bartonella infection. But I can’t say that MCAS is only caused by Bartonella.
There are plenty of other infections Lyme disease, other co-infections. The flu influenza we know triggers mast cell activation, we know mold does and other, again anything in the environment is going to be a trigger for the MCAS. Now in my patient population, again it’s hard for me because of the area of the country that I work in, because of the work that I’m interested in, there’s a disproportionate number of patients of mine who have mast cell activation syndrome and Bartonella. And probably they had some predisposition to MCAS. I think if I go back in time with their history, I think that there is some evidence that their mast cells are already more sensitive, I guess it’s the way to say it. That they are going to be more reactive, and then there’s an insult to the body.
They get Bartonella from early exposure to a cat, they get a tick bite, and they get Lyme disease. They live in a moldy home, or they go to moldy school, and now there are these different events that prime them, prime those mast cells, and then it’s off to the races. So I think Bartonella is an important factor, and it’s something that I think about in many of my mast cell patients. But you can have Bartonella and not have MCAS, and you can have MCAS and not have Bartonella.
[00:33:27.08] Scott: So when Bartonella then is a trigger for mast cell activation. Is it the Bartonella, or is the mast cell activation or the immune system creating inflammation that is creating the symptoms that the patient experiences? In other words, is it the host response, or is it the bug?
[00:33:46.08] Dr. Dempsey: So I’m inclined to believe that it’s the host response, and that is just again from my experience in working with these patients. There’s the bug; the bug invades the body, the body has to respond to that bug. In some patients, it’s going to respond as an autoimmune response; in some patients, it’s going to be the mast cells; in some patients, it’s going to be both of those things. And where the Bartonella has invaded is where that immune system is going to be primed, and it turns out that Bartonella has a propensity to go to not just the nervous system which I mentioned, but basically the endothelium of the vasculature, the skin, everywhere that there’s this layer.
And well, you know what guess what’s in all those layers, mast cells. Mast cells are basically everywhere in the body that’s in interface with the environment. So the skin is an interface with the environment, so we have a ton of mast cells. We have mast cells in the respiratory tract, in all the blood vessels along all the nerves, the GI tract, which is in contact with the environment. So those are the very places that we know that Bartonella likes to invade. So again, where do the symptoms come from? Is the bug causing the symptom? To me, it’s more that the bug is causing an immune response, and that’s the immune response, that’s the symptomatology that they’re getting.
[00:35:07.09] Scott: Kind of jumping back a little bit to the Bartonella conversation then, but do we know if Bartonella because it impacts the vessels throughout the body. You mentioned the endothelium, do we know if Bartonella is a component of hypercoagulation, which is also commonly involved in many of these chronic conditions.
[00:35:25.25] Dr. Dempsey: Yes, so I think there is some association between hypercoagulable states and Bartonella, but also with mast cell activation syndrome. And mast cell activation syndrome can either cause a hypercoagulable state or a hypo-coagulable state; however, you look at it. For instance, mast cells produce so many different mediators, there are over 200 mediators that are known to be produced by the mast cell, and not everybody’s mast cell is making all 200. But we know that heparin, for instance, is produced by mast cells, very specific to the mast cell, and heparin is a blood thinner.
So you’re going to get either a patient who has thin blood and having bleeding, menorrhagia women who bleed a lot during menses who have mast cell activation syndrome probably due to excess heparin in that area. But at the same time, there are other mediators that mast cells can produce that can cause the opposite problem and increase blood clotting. So I can blame that issue actually on a variety of things, both the bug and the immune system.
[00:36:33.05] Scott: Yes, that’s interesting, bringing the hypercoagulation component into the discussion of mast cells, and Bartonella is really interesting. Because it seems that so many people with chronic Lyme do have hypercoagulability, and it may or may not be that their practitioner really explores that. But I think that it does play a role in a lot of the symptoms that people experience, and it’s not necessarily that straightforward to go and test for and treat and all of that either.
So I think there are people that are really kind of specialists in hypercoagulation as well, and I think that’s an important component of this whole discussion. Let’s talk a little bit about what are the gamut of problems that can happen in the body when the mast cells become inappropriately activated, or hyperactive? And how widespread can those symptoms present?
[00:37:16.23] Dr. Dempsey: So the mast cells are releasing mediators, when the mast cell finds something that it’s reacting to. So I think about it as mast cells have a number of receptors on their surface, in simple terms, they’re almost like antennas, and they’re scanning the environment. And then things from the environment are binding onto those receptors are sending a signal to the mast cell, which is then reacting by releasing these mediators. And it releases the mediators in a number of different ways, and in a number of different places. So for some, the mast cell is reacting in just that one site, so let’s say you have a pollen allergy or intolerance.
You breathe the pollen in, you’re going to get a localized respiratory reaction to let’s say to the pollen, and that’s just a very simplistic way of thinking about it. But mast cells can also basically cross-talk to each other, and so you can have something that starts as a localized reaction and then become systemic. And those are patients who wind up with anaphylactic reactions very quickly. The mast cell starts to react, all of them start to react, they release these real potent and inflammatory agents that just cause leaking blood vessels, and swelling, edema and then it’s quite severe. Now it could be anaphylaxis, but I’m sorry, but it could also be that they just had more just chronic symptoms that’s involving the whole body.
[00:38:56.20] Scott: And how common would we say that mast cell activation is in the general population, and then how common is it in those that are dealing with tick-borne, vector-borne disease, mold illness the kinds of patients that you work with.
[00:39:08.11] Dr. Dempsey: So there was a study done in Germany, which showed that about 17% of the German population has mast cell activation syndrome. Now, if you think about that seventeen to twenty percent, one in five people in Germany have the disease. Now we suspect that the German population is probably very similar to our population, and so if we generalize one in five people have this disorder, but there’s a very wide range of symptoms. So I think that there are lots of people who are walking around and are fine, but if you test them, they may have signs of it; they may have some very mild symptoms that they live with.
They pop a Claritin or Zyrtec every once in a while, but they don’t really realize the problem that they have, and then you have others who are really ill. Particularly again in my population, when they have tick-borne diseases, and mold exposure and etcetera. So my population is 90%, right? So the patients who come in here maybe not more than 90%, because they’re coming because they know what I’m going to be looking for, so I’m self-selecting but in the general population is still pretty high. If you think about how many people, again one in five, I mean you go to the store, many people who are around you are going to have it, but again it’s going to manifest differently in everybody.
[00:40:34.06] Scott: I’ve heard some people suggest that testing for mast cell activation syndrome is pretty difficult, and so they may empirically treat based on clinical suspicion. What are the tests that you do that you find most helpful? Should they be provoked before the blood collection or blood draw or urine sample? And how often do you get a positive result when you clinically suspect the condition?
[00:40:56.13] Dr. Dempsey: So just like in the Lyme world where we have, we don’t have great testing. We have great testing actually for mast cell activation syndrome; the problem is that when I say great testing, I mean they’re great tests, but they’re not very reliable for a number of reasons. Some of these mediators that mast cells produce are very thermal labile. So as soon as they’re collected in the tube, and then they’re held in the lab, and by the time they get to the other lab that molecule has degraded already, so it’s not detected. So we have challenges with keeping certain things chilled, sometimes you need chilled centrifuges. I mean there are so many different ways to really isolate these mediators, and it’s not easy. What I find in my patient population is to start with some simple blood tests, histamine, a plasma histamine level, a Chromogranin A level, and a tryptase level.
Because most labs can do it, they’re not so thermal labile, so they might be able to detect it, and very often, I’ll get one of those things. I like to confirm the diagnosis with two positive results. So if I have let’s say a positive histamine this time, and then I repeat it again, and let’s say it’s negative, and I repeat it again, but then I got another histamine positive. I got two of them, and I say okay, you know what because I have the clinical diagnosis, and so I’m going to be able to treat. Often I have to treat earlier than that, but I will still try to make that diagnosis. I think it’s very important because I have more tools that I can use if I have a real diagnosis; otherwise, I’m sticking to sort of the simple stuff initially.
There are urine tests that we do, 24-hour urine, which I think is probably even better in some ways in terms of giving us information. But is also difficult because a lot of those chemicals that we’re testing for are thermal labile; the patient has to collect 24 hours of urine that has to be kept cold the entire time. There are a lot of labs that are not doing it, Mayo is doing some, and so it’s become actually very complex. But again, I think starting with some three simple blood tests in the beginning, just to kind of get the ball rolling.
And the other thing that I find very helpful is a lot of my patients have had colonoscopies and endoscopies, they’ve had biopsies, and we can use the biopsy we can take to get the tissue from the lab. We have a lab locally here that will stain it for us with something called CD 117 stain, which basically stains for mast cells. And if we see, for instance, on a colon biopsy, that there are greater than 20 mast cells per high-power field, that to us would be confirmatory that this is mast cell activation, and add with a positive blood test would help with making the diagnosis.
[00:43:45.20] Scott: And do you find that you get clearer responses on these tests if somebody let’s say has high histamine foods prior to the collection?
[00:43:52.28] Dr. Dempsey: I’m not sure, it’s a good question. I think it’s variable. I hate to make patients sick; I hate for patients to not feel well, so I don’t love provoking them. If they’re having a flare, I often say you know if you’re having a flare, if we can get you in and get the blood work done that day just because you’re having a flare is always better. But I don’t love provoking.
[00:44:16.23] Scott: I suspect we’re going to see a Great Plains or a Doctor’s Data or some company like that come out with a mast cell activation panel at some point in the near future. To me, it seemed like a logical thing to do.
[00:44:28.00] Dr. Dempsey: And they should come to me and talk to me, let’s get it going.
[00:44:31.02] Scott: Yes. So for those folks listening to that are working with a lab, let’s get you connected with Dr. Tania Dempsey and get a mast cell panel going from a functional medicine perspective.
[00:44:38.28] Dr. Dempsey: That’s genius, thank you.
[00:44:41.06] Scott: What is the QEESI? It’s the Q-E-E-S-I, so the QEESI questionnaire, and how does that help you in your work exploring and diagnosing mast cell activation?
[00:44:51.21] Dr. Dempsey: So QEESI is a questionnaire that identifies chemical sensitivity, multiple chemical sensitivity, or chemical intolerance, there are lots of different terms that are thrown out there. The QEESI was designed by Claudia Miller, who is really an expert in this realm of multiple chemical sensitivity. And what we’re finding is we’re actually doing a study with her right now, and hopefully the paper will be published in the next few months we hope. But the research is looking like mast cell activation syndrome and multiple chemical sensitivity are probably the same thing.
It looks like they are different ways of expression of the mast cell. And so we’re using the QEESI along with the mast cell questionnaire to help identify the patients who are more likely to have this disorder. Now, if the QEESI, they can have chemical sensitivity, no let me say the opposite, they can have mast cell activation and not necessarily have chemical sensitivity. But the majority of patients of mast cell activation have some level of chemical sensitivity, and what it’s looking like according to our research is a chemical sensitivity is probably mast cell activation syndrome.
[00:46:06.16] Scott: Wow, that’s cool, big news.
[00:46:08.22] Dr. Dempsey: Yes, I hope I didn’t spill the beans, but the paper is coming on a few months.
[00:46:12.29] Scott: It makes sense, definitely. What is the role then of mast cell activation in some other difficult conditions? So you already mentioned Ehlers-Danlos Syndrome, we talked a bit about trigeminal neuralgia. Let’s talk about POTS, dysautonomia, interstitial cystitis; tinnitus. Do mast cells play a role in any of those conditions from your perspective?
[00:46:34.28] Dr. Dempsey: All of them.
[00:46:36.06] Scott: All of them okay.
[00:46:37.19] Dr. Dempsey: So let’s look at Ehlers-Danlos Syndrome, okay. The type that I see a lot of is the hypermobile type, so there’s no genetic test for it. But they have some connective tissue issues; they’re definitely more flexible. So I have different maneuvers we do in the office, and there’s no question that they’re hypermobile. Many of these patients I will identify mast cell activation syndrome, and as well they often have symptoms of that.
And what we think is that mast cells play a role, and I say think, but I think we have research to support this that mast cells play a role in the connective tissue. And so reactive mast cells releasing these mediators that are very inflammatory and break down connective tissue can change the quality of that tissue. So I would go so far as to say that the majority of Ehlers-Danlos patients probably have some form of mast cell activation, but again we haven’t proven that, so I have to be careful.
[00:47:40.12] Scott: Does treating the mast cell activation then leads to lessening of the high permeability over time?
[00:47:46.08] Dr. Dempsey: So it’s not clear, does it lessen some of their symptomatology though associated with it, so some joint pain that they have and other things? Yes, you can see some improvement, sometimes right. Ehlers-Danlos is little more complex, and so I don’t want to simplify it. But I think it’s important for patients with EDS to understand that there may be a role, and POTS is often associated with Ehlers-Danlos and mast cell activation syndrome, and we call that the trifecta: POTS, EDS, MCAS. And so we understand that mast cells, and I mentioned this a few times, are intimately involved with the nervous system.
They’re budding those mast cells, they are budding the nerves all over the place, and they’re certainly involved in the autonomic nervous system. And so in POTS where there’s a dysregulation of the autonomic nervous system, there’s a role for mast cells in leading down that path of POTS, so there may be a trigger to POTS. Probably is an autoimmune component in many cases of POTS, but I think the mast cells are always part of the problem and part of the solution, so treating it certainly will.
[00:48:55.26] Scott: And in tinnitus or tinnitus, is that commonly a symptom that you see in mast cell patients?
[00:49:02.10] Dr. Dempsey: Yes, it is. Now some of these patients have had tick-borne diseases, sometimes Bartonella as the trigger. So they remember when the tinnitus started, and it seemed like it corresponds in to many of their other tick-borne disease symptoms. They get diagnosed, they treat, sometimes they have some response, and I certainly had patients who have seen tremendous improvement in their tinnitus by treating the tick-borne disease.
However, I have a number of patients where yes, a lot of their other symptoms have gotten better; the tinnitus doesn’t change. But when I treat their mast cell activation syndrome, which I’ve proven that they have, they often get some relief and some improvement. Can it be cured totally? I don’t know, but can it be improved? Absolutely, again, with the right treatment.
[00:49:56.14] Scott: What is the role of the vagus nerve in mast cell activation syndromes? So there’s a lot of talks now about vagal stimulators, about vagal tone, increasing vagal tone. Does that have a positive impact on reducing symptoms of mast cell activation?
[00:50:12.19] Dr. Dempsey: So it’s a good question. And I don’t know if the impact of increasing vagal tone is helping the mast cell, or is what you’re doing to increase the vagal tone actually affecting the mast cells directly. I’m not sure, to be honest with you, but again it’s a nerve, the mast cells are intimately involved with the vagus nerve. So if the vagus nerve is not working, it could be that the mast cells are affecting it, and it could be that the vagus nerve, whatever is affecting the vagus nerve, is affecting the mast cells. So addressing that issue will certainly help, and we know that the vagus nerve is important in the parasympathetic nervous system, and many of these patients with mast cell activation syndrome have increased sympathetic activity, decreased parasympathetic activity. So anything you could do to balance that is going to help them overall.
[00:51:11.20] Scott: What are some of the tools that you use in vagal tone or supporting the vagus nerve?
[00:51:16.29] Dr. Dempsey: So there are some very specific breathing type exercises that I’ve encouraged patients. I have a colleague who is a professional singer and voice teacher. And she is somebody a few years ago who really sort of got me interested in understanding the vagus nerve because she as a voice teacher is focusing on the vagus nerve. She’s seeing that a lot of her students have issues with mast cell activation syndrome, with sympathetic activity. And so she actually has some programs which I’m not going to remember right now, but I can get to the names of it. She has some specific programs that we’ve recommended her students to my patients that can help with the vagus nerve.
[00:52:02.04] Scott: And as some of that tied into Stephen Porges’ work with polyvagal theory, some of those exercises?
[00:52:08.03] Dr. Dempsey: Probably.
[00:52:09.14] Scott: Okay, interesting. So toxins like heavy metals they can be a trigger for mast cells as well, but then sometimes attempting to get them out of the body particularly for being too aggressive with the things that we’re doing to try to pull metals out of the body, for example, can further trigger this mast cell response. So how do we approach removing toxic triggers in terms of mast cell activation from the body, if the detoxification process itself is reinforcing the mast cell problem?
[00:52:40.24] Dr. Dempsey: This is the most complex problem that I have to deal with, is this issue of detoxification. And I’ll even throw in there the issue of Herxheimer reactions when you’re treating the infection. All those reactions are mast cell-driven; I believe the Herxheimer reaction is a mast cell reaction. And some of these detox reactions that people are getting are really a mast cell reaction. If you look at what’s happening, it’s really again the mechanism is food through the mast cells. So how do you detox patients whose mast cells are already fired? And what I have found is that this doesn’t always make sense, but it works clinically. I have to address their mast cell issue first, even though I can make a case for the heavy metal, the mold, the infection triggering the mast cell. Still, if I go after the mast cell, and I use blockers, I stabilize, I do whatever I can to combat part of the immune system down, and then either of two cases could happen; this is what I see.
One is I almost don’t have to worry about the toxicity because their immune system is working. And now their body is naturally going to detox, so I don’t have to do anything aggressive. Or I’ve now quieted down the mast cell, and now I can do the work that I need to do while constantly paying attention to the mast cell component. So it’s very challenging, it can be done, but again you have to just keep track of it along the way, it’s a step by step process. And I love when I don’t have to really detox people because I’ve done all these other things.
[00:54:21.29] Scott: Yes. It makes total sense. And I’ve heard Chris Shade from Quicksilver Scientific talk about this dance between inflammation and detoxification, and the more inflamed we are, the more difficult it is to actually be able to detoxify. And so from my perspective things that reduce inflammation like dealing with the mast cells, those are actually indirect detoxification strategies because they’re enabling the body to then be able to as you said either detoxify better inherently, or to them tolerate things that are going to help it do so, so that’s really interesting.
And we talked about Bartonella and Lyme and mast cell activation; it sounds like our body often can manage these insults until we encounter mold in our environment. Or at least for many people, it seems that mold in the external environment is kind of that straw that breaks the camel’s back. How do you see and approach the mold issue in your mass cell patients?
[00:55:16.17] Dr. Dempsey: Yes, I think mold is a critical piece of the puzzle for many patients. And it’s a question that I ask when I’m seeing patients, very often, not every patient that I see for the first time I have to address whether they suspect mold, we go through the house that they’re living in, we go through the places that they spend time and more often than not there is a mold issue somewhere that they spent some of their time. And the number one thing they have to do, which is always the hardest, is that they have to get out of the mold. Doesn’t matter detoxing them; I can try a lot of it doesn’t matter; I don’t even want to treat them for the mold part until they’re out of the mold. I can work on the mast cells; I can try to control them a little bit, but yes, if they’re in mold, forget it.
And sometimes, and I want to bring a point about environmental mold in the environment. So there are water-damaged buildings, and we have mold from that, we have mold in the HVAC systems that are not cleaned well. But there are certain seasons when there’s more mold in the air, and some of my patients it’s not even that they’re living in a moldy environment, there’s mold outside, and they can’t even go outside, and their mast cells are being triggered.
[00:56:30.16] Scott: So mold illness itself is commonly referred to as chronic inflammatory response syndrome or CIRS. I know Dr. Raj Patel, Dr. Thalia Farshcian they look at MMP-9 as one of the markers in CIRS, but also as a correlation to those people that are dealing with mast cell activation. The higher MMP-9 they see those people tend to be the ones that are dealing with mast cell activation syndrome. And so my broader question is, could it be that CIRS or a chronic inflammatory response syndrome is actually a mast cell activation syndrome induced by mold exposure?
[00:57:06.04] Dr. Dempsey: I’m smiling because I have suspected that for years, so we’re so on the same page, yes.
[00:57:16.00] Scott: This is really fun, okay interesting yes that makes a lot of sense. So then do you see mast cell activation as something that can be treated by addressing over time the underlying triggers, while you’re also supporting the mast cells? And thus, it can be cured, or do you see it as something that really requires longer-term management? In other words, is it the core issue, or is it the result of an underlying core issue?
[00:57:43.14] Dr. Dempsey: And it can be both. So I have patients that they have that genetic predisposition for it, they’ve been triggered. But their immune system is strong enough that if I get rid of the triggers, okay they’re out of the mold we’ve treated Bartonella, we’ve cleaned out their diet whatever else we’re doing. For some of these patients, their mast cell issue will really basically go to zero almost, they might need some maintenance, or they may not. They maybe be able to go off of what they’re taking and be fine for a period of time, they’re at risk for relapse or a flare certainly at some time in the future. But there are patients that dealing with the trigger will reverse their mast cell activation syndrome.
And there are some patients who have secondary mast cell activation syndrome, meaning they didn’t really even have a genetic predisposition for it. But they were triggered by an event, an infection, a stressor, etc. they developed it, you reverse that condition, and the mast cells are under control. I would say though that the majority of my patients who really do have a genetic predisposition and have had flares over the course of their life and then have a major flare because of Lyme, mold, heavy metal toxicity, or whatever else. I can get them better; I can eliminate the triggers, I can get the mast cells under control. But many of them will need some long-term maintenance, maybe not everything that they’re on now, but they often will be more susceptible. And so they may need lifelong maintenance and more when they flare. So I would say that’s probably the majority, to be honest.
[00:59:30.26] Scott: So then what are some of your favorite tools for supporting or managing this mast cell activation syndrome? Can we do it with natural options? Do we really need to do the H1, H2 blockers or some of the pharmaceuticals like Cromolyn or Ketotifen and some of those things. What are you finding to be the most helpful?
[00:59:48.28] Dr. Dempsey: So this is a very important point to make, and that is there’s no one thing that I can say is the answer to everything. So like treating Lyme or Bartonella, I have a lot of tools that I use, and in some patients, I need pharmaceuticals; in some patients, I’m going to do it with homeopathy and some patients I’m going to do with Rife, right? The same thing holds for mast cell treatment. There are patients that I treat who I’ve never had to use a pharmaceutical agent in. We use quercetin and bromelain; we’ve used certain probiotics like rhamnosus, which is a great sort of antihistamine type of bug. I mean, there are lots of herbs, and Andrographis is just one that I often use.
And so there are some patients that react well, respond well to that treatment. Some of those things are anti-histamines, or the mast cell stabilizer, they work in a variety of different ways. But mast cell patients are very sensitive; their mast cells can react to just about anything. It could react to the compounds, but it could react to fillers and excipients and other things. Now even natural products, even if you take a quercetin product, sometimes there’s methyl cellulose, sometimes there’s magnesium stearate, those products have to be filled with something, and those are considered inert substances. Unfortunately, many mast cell patients are sensitive to those products. So sometimes I can’t give them natural products because I can’t control what’s in them. So I can compound some pharmaceutical products without those fillers. So sometimes pharmaceuticals are necessary, sometimes I can’t just compound a quercetin without any other filler.
So it’s really about understanding the patient, trying to figure out and identify what triggers they have in terms of excipients or ingredients and keeping very careful track of that so that we know. So, for instance, I have a patient who cannot take magnesium stearate. So every time there’s a drug, or there’s a supplement that I want to use, I have to make sure there’s no magnesium stearate. And then we have to compound it if it’s possible to compound. So again there’s no right answer, I think it’s really again about patients. So I have patients, I put them on histamine like Allegra, and it’s a miracle, it’s life-changing. I had a ten-year-old kid we put on Allegra, and his neuropsychiatric illness, which was off the charts with OCD and depression, went away within three doses.
[01:02:27.02] Scott: Wow.
[01:02:28.14] Dr. Dempsey: Okay. And this child looked at me and said never take me off this drug, ever. I mean unbelievable, okay, I’ve seen it like that. I’ve also seen Allegra do bad things to patients and not be the right drug. I’ve also seen quercetin be a miracle for patients, so I’ve also seen it cause really bad side effects. And so I’m hesitant to say that there’s one thing that is the best, it really has to be individualized, and I really try to work with the patients. Do they feel comfortable taking pharmaceuticals and going down that route, would they prefer that, would they prefer going down another route and then we start one at a time, always one thing at a time watching for reactions.
[01:03:07.15] Scott: I like your idea of Andrographis, because we know from Stephen Buhner’s work that in the realm of tick-borne infections, that it also plays a role in as an antimicrobial, also in the realm of chronic viruses also plays a role there as well. So using it might check a number of boxes for those people that tolerate it well, and can also then benefit from a mast cell perspective. What do you find the role of CBD in mast cell activation, is it helpful?
[01:03:33.23] Dr. Dempsey: So I think it can be, and there’s some debate as to whether the CBD needs to be a THC free, or whether there has to be some THC. So I have some chronic pain mast cell patients, who have found that CBD with a tiny bit of THC is better than CBD alone and better than more THC. I had lots of mast cell patients who do very poorly with THC, so the product needs to be a hundred percent THC free. And sometimes it’s a number of different products that we have to try because some of the CBD products are different. Different plants they’re using different extractions. So yes, I think it’s a great tool, but everybody will react differently.
[01:04:19.14] Scott: And did I hear a rumor that you’re working on a line of supplement products in this realm as well, and if so, is that available to the public or is that just for your patients?
[01:04:29.27] Dr. Dempsey: So it will become available to the public when it’s out. Right now, for patients, we’re all going to roll out some new products in the next few months, and then my hope is to make it available to everybody.
[01:04:42.10] Scott: Great. When it’s available, let me know, and I’ll share with my listeners and followers as well. How helpful is a low histamine diet in mast cell activation patients?
[01:04:51.26] Dr. Dempsey: So, like every other treatment we use, it can vary. I have patients who respond very well, and the diet alone is all they need. I have one patient who is having recurrent herpes zoster symptoms, so they had shingles, she had shingles, and she had that neuropathic neuralgic pain after the shingles, the nerve pain. And what she found was that a low histamine diet was what reduced the pain from that and because we know the mast cells are involved with the nerves.
And she knew that if she avoided tomatoes and chocolate, and some of the high histamine foods, she had no pain, as soon as she had a food high in histamine, the pain would be back. So for some patients and that’s all she does, she does diet no meds, no supplements. I have other patients where yes, they’ve eliminated a lot of the histamine, and yet they’re still symptomatic it really doesn’t make a difference. And for them, I might be a little more liberal with the diet, because so many of these patients struggle with so many foods anyway, being even more restrictive in this area might be difficult. So then patient by patient.
[01:06:03.00] Scott: Let’s talk just a little bit about the genetics, you’ve touched on it. But in the mast cell activation realm, is it more than genetics, or is it that epigenetics that are really triggering the mast cells. And how does that shift our treatment focus? Are we looking at the epigenetic factors to kind of make these genes less of an issue? And then are there specific genes involved? Like is this where HNMT, if I remember correctly or some of those, is that where those genes are coming into place in terms of potentially predisposing someone to mast cell activation syndrome.
[01:06:35.12] Dr. Dempsey: So I think there has to be some genetic vulnerability, let’s just say, okay. And we haven’t identified all the genes, but yes the gene responsible for the production of the enzyme that breaks down histamine, if you have a mutation, and you can’t break down histamine in the body, can’t methylate histamine, of course, could contribute to some of the symptomatology, so it makes sense. But I think that again there’s a vulnerability, and then there’s an epigenetic event or events over the course of a lifetime that then sort of brings out this predisposition. And what we’re finding is that the mast cells themselves are basically mutating. What we’re trying to study this is one of the research projects that Dr. Afrin and I have, and eventually, we’re hoping to be able to do this. Is to look at the mutations of the mast cells, to identify what the different mutations are.
And so far what it seems like they’re probably thousands, if not hundreds of thousands of different mutations that can occur at the level of the mast cell that are probably caused by environmental factors. So that there are mutations that are acquired, then there are mutations that people are born with, and then, of course, that the environment is playing a big role. And I think it’s important to mention that, I don’t know if we’ve become better at identifying mast cell activation syndrome, or there are more people who have it. But I think back to my training when I was in medical school, and then in residency, I’m sure I saw patients with mast cell activation syndrome, I’m sure I did. But I wonder if we’re just seeing more of it because we really have a problem with our environment.
[01:08:16.09] Scott: I mean, I suspect we’re seeing more of it. It’s kind of the same people that make the argument that autism is more prevalent because we have better diagnosis and better tools and whatnot. I don’t think that’s really true. I mean, I think we can look and see that autism is more of an issue. If you talk to any teacher who’s been teaching for 20 or 30 years, they can see that children today have very different issues than children 20 or 30 years ago did. So I suspect you’re probably right that it’s probably that it is more of an issue, and maybe we are better able to identify it now as well.
What do you see is the role of neuroplasticity and tools that kind of focus on the limbic system or limbic system retraining in mast cell activation? Have you seen those types of tools helpful for your patients?
[01:08:59.03] Dr. Dempsey: Absolutely. And I thought every patient is going to be able to do these programs. The one that some of my patients have been very successful with is the DNRS, dynamic neural retraining system. And I have a number of patients with incredible results using that.
[01:09:19.00] Scott: Oh, I smiled because it’s my favorite tool. I say that if there’s one thing that I’ve seen in this realm of Lyme and mold, if there’s one thing that I’ve seen make the biggest difference like people that are eating five foods and bedridden to three or four months later, they’re not reactive to any foods and they’re traveling to foreign countries, it’s been mind-boggling. And like you said it’s not the thing that works for everyone, it does take a lot of commitment the hour a day, I personally have done it, so I know the commitment that it takes, but I have seen some miraculous shifts in people.
I think the one caveat, though, is that doing something like DNRS a lot of times people think well they’re suggesting that if you do DNRS that you don’t then have to fix your mold issue, and that’s not what they’re suggesting. Annie Hopper herself will say well no if you’re living in a moldy house, you need to fix that problem. But then once the threat is no longer as significant, then you can essentially reboot the limbic system, so that it has an appropriate sense of what is safe or not safe in the environment for you.
[01:10:21.04] Dr. Dempsey: Exactly. So I think that exactly what you said that it so it’s a big tool, I would say that out of everything we’ve talked about, it’s the one thing that I can say has never had a negative effect on any of my patients, and potentially has the most benefit.
[01:10:38.04] Scott: Beautiful.
With all the things that you’ve seen in treating people with chronic illness, what are the top few interventions that in your patient population, you found the most helpful. The ones that you kind of mentally are drawn to, because you’ve seen them not always but time and time again really helping.
[01:10:54.09] Dr. Dempsey: Yes, that’s a wonderful question. Well, so DNRS definitely on the top with treating chronic illness, I would say that diet for many patients is really a key factor. And I talk about diet with every single patient I see, and sometimes they get annoyed with me, and sometimes I could sound like a broken record. But the truth is that sometimes diet is like 80% of what they’re dealing with, and if I can fix that piece because then we can control what they’re putting in their body, then that will help their healing process dramatically. And so I really emphasize a more ketogenic, carnivore even diet, and I have found that to be miraculous in many of my mast cell patients and tick-borne disease patients.
[01:11:51.17] Scott: Yes. The carnivore diet is one that even I hadn’t really known a lot about until several months ago, and I had a couple of people that I was interacting with that were dealing with significant gastrointestinal issues, and mast cell and a host of other things and they did really well with that. So it is an interesting one, it’s very restrictive, but when people’s symptoms shift so significantly you have to look at it, so that’s great. So what are some of the treatment options that are on the horizon that really excite you? What’s the next big breakthrough that you see in terms of patient management?
[01:12:25.24] Dr. Dempsey: In terms of mast cell disease, or tick-borne?
[01:12:29.13] Scott: Either one. Like what’s on the horizon that you think is going to be the next game-changer?
[01:12:34.10] Dr. Dempsey: Well, I don’t know there’s a drug that’s being developed in Germany that seems to be very exciting; it could be the thing that treats all mast cell patients. I hope that’s the case, so that would be very exciting. I think some of the studies and research being done on persistent infection in the tick-borne realm, with Bartonella and Borrelia and all those and Disulfiram. I think we’re getting there, where the momentum is there, then I think that we’re going to be in a better position to treat those infections, and I think we really haven’t been doing as good a job as we could. So I think that I’m very hopeful.
[01:13:12.18] Scott: What are some of the, I ask the same question of all my guests. What are some of the key things that you do on a daily basis in support of your own health?
[01:13:20.29] Dr. Dempsey: Yes. So I am a carnivore, and I will say that, so I think again diet is very important for me, and that’s why I think is important for a patient. So I know, the more ketogenic I am, and the more I stick to animal fat, the better I feel. So I think again diet is a big piece, I love activity and exercise, and I find various ways to do that. So sometimes it’s walking, and sometimes it’s, I love weight training, and I do whatever my body wants to do. But I try to do something every day because I think that’s really good for my brain and my body and my endorphins.
So those are the two key things that I do, I do take a lot of supplements I’ll be honest. I feel better when I’m taking my probiotics and my vitamin C, and I take quercetin, and I take a number of antioxidants. I love glutathione and NAC and alpha-lipoic acid, and so I always do things, and I don’t necessarily detox every day, but I try to watch my toxicity, and I sometimes do go through periods when I do detoxification. So it’s a full-time job in a sense taking care of ourselves, but I think it’s really important and I think for me in order to treat patients, I need to know what it feels like to do those things, I think it’s very important. I cannot give advice if it’s something that I haven’t tried myself.
[01:14:54.23] Scott: Absolutely.
[01:14:56.01] Dr. Dempsey: I pretty much am a guinea pig.
[01:14:57.27] Scott: Well, thank you so much, this has been such a fun conversation. I knew it was going to be great, and I had even more fun than I was anticipating, which was already a pretty high bar. So I love that there was so much good information that you shared on Bartonella and mast cell activation syndrome. I do think that those are two really big players in people that are dealing with these chronic conditions.
I think there’s more overlap than we recognize when we look at Bartonella and mold and mast cell activation, and so I think it’s good that we’re starting to put the pieces of the puzzle together. You and your research and working with Dr. Afrin certainly moving us in that direction, and I just appreciate you taking the time today to share with everybody so freely the wisdom and experience that you have in this realm. And I know that it’s going to definitely help people that are listening, so thank you so much for being here today.
[01:15:43.07] Dr. Dempsey: Thank you for having me.
[01:15:44.11] Scott: Thanks.
[01:15:45.01] To learn more about today’s guests, visit DrTaniaDempsey.com.
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