Mast Cell Activation Syndrome (MCAS) & Tick-Borne Illness

How Illnesses Like Lyme Can Influence MCAS, with Dr. Tania Dempsey

Three main types of symptoms typically occur in mast cell activation syndrome (MCAS): allergic, inflammatory, and growth abnormality symptoms, which can affect different organs in the body. Lyme disease, Bartonella, and other tick-borne (and insect/animal-transmitted) illnesses can influence, trigger, or mimic the symptoms of MCAS. It’s important to consider that these conditions may or may not overlap. Lab testing can help identify inflammation markers or specific infections. Treatments, from herbal to antibiotic, vary based on individual need. A person with MCAS may need to introduce one variable at a time in treatment, as they can be highly reactive. Paying attention to diet can also be a foundational step to moderate one’s condition.

Episode Intro

Dr. Michael Ruscio, DC: Hey, everyone. Welcome to Dr. Ruscio Radio. This is Dr. Ruscio. Today I’m here with Dr. Tania Dempsey, who has been on the podcast before to discuss histamine tolerance and mast cell activation. She’s back to expand upon that topic, and how things like Lyme disease, and Lyme co-infections or tick-borne illnesses, can tie in and potentiate this whole syndrome of histamine sensitivity and mast cell activation syndrome (MCAS). Tania, welcome back.

Dr. Tania Dempsey, MD: Thanks so much for having me, Michael.

[Continue reading below]

Dr. R’s Fast Facts Summary

3 Areas Where Symptoms Can Manifest (can be all or one of these)

  • Allergic symptoms (non IGE mediated)
    • Hives
    • Respiratory
      • Asthma
      • Anaphylaxis
    • Inflammatory symptoms
    • Abnormalities in growth in development
      • Random cysts
      • Growth hormone insufficiency

Mast Cell and the Gut

  • Mast cells are in abundance in the gut
  • Gut issues can trigger mast cell activation
  • Gastroparesis may be caused by mast cell activation

Diet

  • Low FODMAP diet can be helpful
  • A low FODMAP/Keto Diet combination may be beneficial (try removing some of the veggies and add more fat)

Bartonella

  • Can be transmitted by other insects and animals besides ticks
  • Hides from the immune system
  • Colonizes different parts of the body, namely the vasculature – where mast cells also live

Testing for Bartonella

  • PCR
  • Elevated VEGF level (an inflammatory marker) may suggest Bartonella
  • Galaxy labs
  • IGeneX

Testing for Mast Cell Activation Syndrome (MCAS)

  • Basic/preliminary screen: Histamine plasma, Chromogranin A, Tryptase (can be done using LabCorp). If two tests are positive = MCAS
  • MCAS Questionnaire filled out by the patient and doctor.
    • Score between 8-14 = suggestive of MCAS, score above 14 = highly suggestive. Either score indicates you should continue looking for MCAS.
    • If the score is below 8, consider other similar conditions; Lyme disease, environmental allergen/exposures
    • Click here and we’ll email you access to our MCAS questionnaire

Mast Cell Treatment

  • Introduce one intervention at a time
    • Sensitive patients may do better on a single formula herb vs. multi formula
    • Some may react to fillers like cellulose in certain herbal supplements
  • Stabilize patients – eliminate triggers that you can control
  • Address histamine issues with natural antihistamines like vitamin c and quercetin or over the counter H1 and H2 blockers if necessary
  • Sometimes it may be necessary to elevate treatment to antibiotics

Bartonella Treatment

  • Practitioners must individualize treatment, one size fits all approach does not work
  • Helpful treatments though not every treatment will work for all patients
    • Sida acuta by Woodland Essence
    • Houttuynia
    • Camunda
    • Immune support – resveratrol, green tea extract

Gluten

  • Trial a gluten-free diet as the first step to treatment

Where to learn more

Mast Cell Activation Syndrome (MCAS) & Tick-Borne Illness - DrR Featured Tania 1
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In this episode…
Episode Intro … 00:00:40
Could You Have MCAS? … 00:04:44
Moderating MCAS with Diet & Gut Protocols … 00:12:03
Bartonella: a Widespread Infection? … 00:18:51
Testing for MCAS & Tick-Borne Illness … 00:25:50
Treatment for MCAS & Tick-Borne Illness … 00:39:24
Don’t Overlook Foundational Habits … 00:46:47
Episode Wrap-up … 00:51:50

Download Episode  (Right click on link and ‘Save As’)


DrMR:  It’s great to have you here. I want to get into this topic in full, of course, in a moment. Just give people your quick background and bio, in case they didn’t catch the last time that you were on.

DrTD:   Sure. So my background is actually from a more traditional world and I did my training in internal medicine. I did my medical school training at Johns Hopkins School of Medicine and my internal medicine residency at NYU. Then, quickly or slowly—however you want to look at it—I made my way over to the integrative world, as I realized that the traditional model wasn’t working for my patients. I’m proud to say that seven years ago, I started my practice, Armonk Integrative Medicine, which has grown dramatically. And I’m excited to say that it’s going to be growing even more.

Hopefully, over the summer, we’re going to have our new center built in Purchase, New York. Dr. Lawrence Afrin has joined me. He is really one of the world’s experts in mast cell activation syndrome. We’re excited about the work we’re doing together in research. We’re obviously continuing our clinical work. I’m hoping to teach others and other practitioners the work that we’re doing. It’s been really exciting.

DrMR:  Yeah, that is very exciting. It’s also one of the things I really appreciate about you and Lawrence Afrin: you’re both seeing patients but also participating in clinical research. As I’ve said many times in the podcast before, that really gives such a rich breadth. Not only knowing the academics, being able to check your bias, and making sure that things you’re seeing are significant, meaningful, and based on a scientific foundation, but also having that clinical instinct, intuition, and experience. So you’re not operating with holes in your vision on either side. That’s such a fantastic perspective to be able to bring here to the podcast.

chronic diseaseDrTD:   Yeah. Just to expand on that, the issue is, when we’re dealing with chronic diseases—which is really where my focus and Dr. Afrin’s focus has been—many of our patients have been chronically ill for decades sometimes. They’ve come to us, they’re looking for help, we’re providing them with answers, we’re getting diagnoses for them, and then they have to go to other physicians. Unfortunately, without research, without data, without everything documented in the literature, it’s very hard sometimes to convince the allopathic practitioners that these patients are really sick.

That has been really been our goal, to make people understand that these patients are not making up their illnesses. They are really sick, with symptoms that sound bizarre to many out there (but they’re not). We have reasons now to understand why that’s happening in these patients. And we need to be able to teach others so that other practitioners can treat these patients, and also identify other patients in their practice. We really have an epidemic of chronic disease.

DrMR:  Regarding these puzzling symptoms that you alluded to a moment ago… for the audience, if someone’s listening or reading this, and they’re asking, “Do the symptoms that I’m suffering from connect into this topic?” I’m assuming the question would be answered with a definite “maybe”. But would you say there are any predominant symptoms—just in brief—that if someone has, they should be extra perked-up at this topic?

Could You Have Mast Cell Activation Syndrome?

DrTD:   The way I think about this is, there are three main areas—and in particular we’re looking at mast cell activation syndrome—where people can manifest symptoms. They can have symptoms in all three areas, or they can just have one area. I would say the more common one, that everyone thinks about, is the allergic-like phenomena. So it could be hives, allergic symptoms, respiratory symptoms, asthmatic-type symptoms, anaphylactic-type symptoms. Some of them are true allergies. Often they’re not confirmed allergies. They’re actually what we call non-IGE mediated, meaning they go through a separate mechanism from the allergic mechanism, but they still manifest as allergic-like symptoms. That is very common.

But even if you don’t have those, you could still have this condition. The other piece of this is really what we call inflammation. We have allergic-type or allergic-like symptoms. We have the inflammatory symptoms. Lastly, we have abnormalities in growth and development.

When we talk about inflammation, that inflammation can really affect any organ system: the heart, the lungs, the muscles, the nerves, the genital organs, the GI tract. Inflammation is very broad. So it really can encompass a lot of what your listeners could have. The last one, abnormal growth and development, is where we see just that. Sometimes we have people who have cysts that develop in their liver, in their thyroid, just random places.

abnormal growthThey tend to build up these abnormal growths. We know that abnormal growth and development can cause issues, even in childhood, with actual abnormal growth. Growth hormone insufficiency may be linked. There are all things that again, are sort of broad, but they encompass a lot. If you think about it, lots of people have some aspect of many of those things. It suggests that this condition may be more common than we think.

According to research coming out of Germany, about 17% of their population (which we’re assuming is very similar to our population) has mast cell activation syndrome, whether they’re symptomatic at the moment or not. So that’s a pretty big number. Close to 20%. It’s one in five people.

DrMR:  Yeah. That’s enough to be something that clinicians will almost certainly see at some point, at that high of a prevalence. With the inflammatory connection, that opens the door to almost any symptom really. The other thing I’m wondering here is, how much or little are you looking at gut function as part of this syndrome? Gut function is something I know our audience is curious about. It may be relevant, it may not be very relevant. What’s your perspective there?

DrTD:   It’s extremely relevant on many, many levels. First, I can just say that we know that mast cells are in abundance in the GI tract, whether you have this mast cell activation syndrome or not. Mast cells tend to be at all those places in the body that interface with the environment.

So you eat food, it goes in; those mast cells are there to protect you. If you take somebody whose gut flora may be altered—maybe from their diet, from their lifestyle, lack of breastfeeding as a child, lots of antibiotics, all these reasons why the gut flora can start to shift—those mast cells recognize that there is something wrong. And that often can be a trigger for the mast cells to react.

Then that leads down this whole cascade of things that could happen in the GI tract. You can have things like bloating, constipation, diarrhea, or reflux. You can imagine, all those things.

brain mapWe also know that there may be some link between mast cell activation syndrome and autonomic function. Autonomic function is the part of your nervous system that controls things you don’t think about. When you eat food, you don’t think, “Oh, I have to produce that enzyme, I have to break down that food, and I have to move it all the way through the entire GI tract.” Your body just does it. We think the mast cells may play a role in the functioning of that part of the nervous system.

What we see is sometimes people get this condition called gastroparesis, where the gut slows down and food doesn’t move through properly. Then that sets up a whole issue with the flora, which also will be altered. We see small intestinal bacterial overgrowth (SIBO), for instance, quite frequently associated with mast cell activation syndrome.

DrMR:  Quick question there. Do you feel like there is a chicken-and-egg debate there, or would you say one tends to more often precede the other?

DrTD:   Yeah. I think it’s really complex and intertwined. I think, in some patients who have a genetic predisposition to mast cell activation syndrome (so this is something that they’ve probably had since childhood, that has evolved over time, has gotten worse), that sets them up for this. And then maybe SIBO is what develops after that.

But I certainly have a subset of patients for whom the mast cell issues didn’t develop really until later. There was really no evidence during childhood. In those cases, I think it’s a secondary problem, and I think it’s other things that have set them up for SIBO and then the SIBO has triggered the mast cell.

DrMR:  You know what’s fascinating there? There’ve been a few papers that have posited that either abdominal distension or short chain fatty acids may actually stimulate mast cell degranulation. Perhaps this is why we see patients with SIBO who’ve gone on a lower FODMAP diet or treated their SIBO and seen such improvements in a broad array of symptoms. They may be greatly reducing their histamine load, which is just one component of mast cell function.

And there was one paper that showed an eightfold reduction in histamine after going on a low FODMAP diet. You’re right, it is this complex knot or web of causality. But certainly, at least in my clinical experience, we see patients who have a diverse array of inflammatory symptoms that can only get better as we improve their gut health. So I’m glad that you’re seeing the same gut connection that I am.

Moderating MCAS with Diet & Gut Protocols

DrTD:   Absolutely. I’m glad you brought the diet piece up and FODMAPs, because I’ve taken it a step further with many of my patients. I always personalize with diet. I don’t think there’s a one-size-fits-all, but generally speaking, FODMAPs is a good place to start. It’s not uncommon for me to eliminate many of the vegetables, the fibers, and the things that I think are maybe causing more inflammation for them in the diet, and putting them on a more ketogenic diet where they have more fat, more moderate protein, and almost no carbohydrates.

SIBOThe SIBO does respond very well to that and so does the whole gut function. Then the mast cell activation syndrome really does, for many, dampen down. It’s not across the board, I don’t think the diet is right for everybody, but when it works, it’s quite remarkable.

DrMR:  Yeah, it is remarkable. There’re so many patients in my office with whom we’re thinking about MCAS, we’ve been using the MCAS questionnaire. I know Dr. Afrin was part of developing that. Were you involved with that questionnaire development also?

DrTD:   Not the development, but we certainly utilize it in every patient that we see.

DrMR:  Yep. So I’ve been issuing that to some patients where we are suspicious. And it’s definitely something I’ve had my eye on more, especially after the interview with you and Lawrence. But it is amazing when I’m saying, “Okay, this may be an issue where we have to come directly to MCAS therapies,” how infrequently we actually have to do that when we optimize someone’s gut health. Now, it’s also possible I’m fortuitous in the population that I’m seeing.

But it seems that it’s only a much smaller percentage of people for whom we actually go to the over-the-counter H1, H2 antagonist protocol or even consider referring to an MCAS specialist. If I’ve done all the gut work and we’ve done the over-the-counter antihistamine protocol and we’re still not close to where we want to be, that’s when I say, “Okay, I’m getting to the edge of my expertise and now we’ll refer to a specialist.” And we have sent a few patients over to your clinic when that has occurred.

DrTD:   Great, yeah. I think you’re right that there’s some groundwork that can be done and often that can tip the patients over in the right direction. But there are many that we see, by the time they’ve come to our clinic, they’ve already exhausted all that. It’s our job to figure out why they are not responding the way we think they should respond, based on our experience.

In that case, there’s often either residual infection that hasn’t been treated (so it’s not infection in the gut, but it’s a tick-borne disease) or it’s a mold exposure or a systemic fungal infection that may have been precipitated by a mold exposure, precipitated by antibiotics, or something like that. Those are the things that I think about, environmental exposures. What keeps this process going?

Sometimes you can get to the root—often you can—and sometimes you really can’t find their multiple roots. What you have to do is just be more aggressive with the mast cells, because no matter what you do, they’re just going to continue to be sick.

immune systemsDrMR:  Great segue by the way. Also, do you think it’s fair to say—and this is more just a question for the solace of some patients who are hard on themselves—some people’s immune systems may have formed to be so exquisitely sensitive to a somewhat natural environment that the environment is pretty darn good even after all the work? And now, we just have to go to work on trying to tone down their immune system reactivity?

DrTD:   Yeah, that’s correct.

I think there are some patients who genetically have what I will call a more autoimmune reactivity. They’re more prone to that sort of reaction and their immune system is on hyper-alert. The mast cell is just one piece of that immune system. You’re absolutely right: at the end of the day, you can clean up everything, and the mast cells may keep reacting. We think that has to do with mutations that happen at the level of the mast cell. This is research that has to be done. Dr. Afrin and I are always talking about how we would even go about testing this. But that’s the key, that there’s something about each person’s mast cells. Sometimes once they’ve mutated, you really can’t change them, they’re reactive.

You have to use these different modalities to stop them, but you’re never going to change their genetic composition, and that’s the problem. If we can figure out how to prevent the mutations from happening in the first place or we can figure out what those mutations mean for that mast cell, so that we can match it with a therapy, that would really change the quality of life for a lot of people. So that’s where we see the research going for the future.

DrMR:  Well, hopefully, significant strides will be made there.

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Bartonella: a Widespread Infection?

Coming back to the facet of the environment, one environmental factor that would be, of course, highly modifiable would be a chronic tick-borne infection. We have Lyme and Bartonella, I know you were saying. So this is one of the things that really made me curious: in email correspondence between the two of us, you had mentioned that you’re finding Bartonella could be fairly common, strikingly common—I think you may have even used the term “pandemic”—in driving the nonresponsive symptoms.

Tell us about what observations you’ve made there and lead us into this topic, because I’m sure people are curious to hear more.

DrTD:   Well, first off, I practice in a Lyme-endemic region of the country, so it’s very hard to avoid. We see so many patients coming in. I know it’s hard to imagine. I’m trying to think of the last time I saw a patient who wasn’t exposed to Lyme at some point or infected with Lyme, because of where I am.

Mast Cell Activation Syndrome (MCAS) & Tick-Borne Illness - 240F144635892DRXKkc6APUKm7s8khqS5gEt7evIz7zYAAnd while Bartonella can be transmitted by ticks—and that’s been proven already, the same ticks that transmit Lyme can transmit many infections—the problem with Bartonella is that it can be transmitted by other insects. It could be transmitted by spiders, biting flies, lice, and fleas. If you think about the range of insects that can transmit Bartonella, you can imagine that I’m not only going to see it in my neck of the woods because I’m in an endemic region for ticks, we’re going to see Bartonella worldwide. And that’s in fact what we see. There’s a great map that I use in my presentations that shows the different species of Bartonella that are found in every corner of the world.

There are insects in every corner of the world transmitting these. In addition, every mammal on this planet can carry Bartonella of different species. So if the animals are carrying it, and the insects are biting the animals, and the insects are biting humans, or even, the animals are biting humans… I’m sure there are listeners who have been bitten by a cat, bitten by a dog, scratched by a cat, and these animals often carry Bartonella quietly. It may not be active in those animals, the animals might not be sick, they can still transmit it.

And I was seeing a lot of Bartonella when I was testing for Lyme. But it became clear to me that I was seeing Bartonella without Lyme. I was seeing more Bartonella without Lyme that I ever had seen in the last couple of years. That, to me, really raised a red flag. The more and more I look for it, the more I see it. And the more I see it, the more I see that there’s this link between Bartonella and mast cell activation syndrome.

There’s a link between all infections and mast cell activation syndrome, but there are some special things about Bartonella that maybe make it a little bit more likely to happen. Bartonella is we call it a stealth infection. It has a way of hiding from the immune system and it can camouflage itself. It can do things that, again, make the immune system not realize it’s there. At the same time, it’s colonizing different parts of the body, including going into the red blood cells, going into the arteries, into the lining of the arteries and the veins, what we call the vasculature.

These are the very areas where mast cells tend to also live. If you imagine that the Bartonella invades that area, the mast cells are there ready to fight. You can see how it would get kicked up. What’s really interesting to me, as I was exploring this link, is that if you look at the symptoms that mast cell activation syndrome causes and you look at the symptoms that Bartonella causes, they overlap completely. Bartonella can affect every single organ system. Mast cell activation syndrome can affect every organ system.

You start to wonder, what is the link? And I think many of the symptoms that people have from Lyme, also, and Bartonella, Babesia, and all those coinfections, are being driven by the mast cells so the symptomatology is coming from that. Not necessarily the infection itself. And the treatment also can lead down that same path. One of the challenges we have with patients who have both a mast cell issue and infection is that if you try to treat the infection, their mast cells go nuts, they get sicker, and they can’t tolerate treatment.

infectionThis is where this is really important, where I’m looking at ways to deal with the mast cells, calm them down, get the patients in a better state. So if there is still active infection, we can go after it, and they won’t be as reactive. I want to mention one other thing, there’s a term that we use in the Lyme world called “herxing” (a Herxheimer reaction), and really, I believe that that’s a mast cell reaction.

DrMR:  Very interesting, but it makes sense. It makes sense if someone has an infection, but they’re just hypersensitive to treatment, it might not be a “die-off,” it might be more an issue of immune system reactivity. I’ve leveled that same criticism on the podcast in a slightly different but similar analogy, which is, some people feel that they have to spend five months working up to a full dose of a certain antimicrobial.

Actually, Alison Siebecker and I were having a conversation about this yesterday. To me, when someone asks to start off with taking, say, an eighth of a capsule of a probiotic, and they can only get up to one full capsule by month five or six, that sounds an awful lot like allergy desensitization therapy (where they might be allergic to the compound). So it might be an allergic reaction, not a die-off or a detox reaction.

What you’re saying is brilliant. I think, yes, sometimes it’s not that you’re having this herxing die-off crisis, it’s that the immune system is over-reactive. And we’ve got to find a different approach to be able to get to the therapeutic endpoint we’re trying to arrive at.

DrTD:   You’re absolutely right, yeah. That’s a great example.

Testing for MCAS and Tick-Borne Illness

DrMR:  Now, the challenge here is the testing piece. Testing is not perfect in many different realms. This shouldn’t be a surprise to anyone on the podcast because it’s been a recurring theme, but especially with Lyme. At least in my observation, it seems very hard to get a straight diagnosis. I know one of the things that we had discussed, also via email, was with some of the larger labs, like LabCorp and Quest, you found very difficult to see a positive profile. Wherein I’m assuming you may have seen a positive via another test, maybe IGeneX, or the patient just responded to treatment.

This, in my mind, is the biggest hurdle. How do clinicians grapple with the diagnostic part being so challenging, to know if a person is already reactive? We already have to be so careful with the therapies that we employ because we run the risk of flaring them. We really want to try to be as precise and as guided as we can. If the testing we’re using to be precise and guided is ambiguous, it poses such a conundrum. How do you navigate that?

DrTD:   Yeah, that’s for sure the challenge I face every single day, every single patient. I want to be clear that not everybody with Bartonella or Lyme or co-infections have mast cell activation syndrome and vice versa. Not everybody with mast cell activation syndrome will have had an infection or these Lyme-coinfection-type things. You can have one or the other and they can be unrelated. I tend to see a population that is overlapping and they are related. What I need to do is I do need to piece it apart.

DrMR:  Is one of the reasons that, or one of the presentation pieces, that these patients are just highly reactive? Is that the unifying theme: sensitive patients?

DrTD:   It’s a good question. Yeah, I think that’s probably a good way of putting it. Is your question, how do I identify the patients that have both?

cell activationDrMR:  Or either. Some patients may just have Lyme, some patients may just have mast cell activation syndrome, some may have both. But I’m assuming a non-MCAS Lyme patient may just go right through therapy and not have many bad reactions and be fine.

DrTD:   Correct.

DrMR:  But then, people that have both, or people who had just have MCAS are reactive to many types of therapies. Is it the highly reactive nature that is a commonality of MCAS, plus or minus other conditions?

DrTD:   Yeah. I think you’re right. That probably is the unifying character. Having said that, I have had patients who have been treated for Lyme and co-infections, and have had aggressive antibiotic, herbal, homeopathic regimens thrown at them, and have tolerated it fine. Although they do have this history of being maybe in a more allergic type of person, more inflammation, and things like that, but they tend to sail through it.

Then, they go off everything, they do well for a while, and then they “relapse” and feel like their Lyme symptoms are back. Then you say, “Okay. Well, now we’ve just got to go back in and do the work again,” and now they react to everything you give them. I see a lot of that. And I think that they probably had mast cell activation syndrome, but maybe it just wasn’t primed or it was “quiet.” We don’t know why. Maybe it has to do with these mutations or lack of them.

But then at some point, it’s either that the infection really did come back, or the body thought the infection came back, and the immune system just got revved up, and boom. They look like they have a recurrence of infection. And in fact, they may not, and that’s the challenge. We’ve got to try to figure out if there’s still active infection or if we are just dealing with the progression of this immune dysregulation. The testing we had is really not enough in that role.

We have pretty good testing for mast cell activation syndrome. It’s not perfect, but we can usually make a diagnosis. On the flip side, we can do IGeneX, we can look for markers that suggest persistent infection, we can do PCR testing to look for whether we can detect the DNA of the bugs, and we can still not know for sure if it’s all there or not. Bartonella, in particular, is really difficult because it’s hiding everywhere. So if you do blood work, first, you’re looking for an immune response, so you’re looking for antibodies. But the body is not producing antibodies because the Bartonella is hiding in these other places. You may not see it. It might look like you don’t have it. You could try to get PCR, but again, if the bug is hiding and you’re drawing blood, the DNA may not be in the blood from the bug, it’s hiding in whatever organ. It is challenging. The key is, how do we really confirm or rule out that a patient has an infection?

infectionDrMR:  I’m wondering the viability you would see in the approach of using treatment as a test. As we were having our conversation, I was saying, gosh, it would be great if we can develop a questionnaire that tries to partition, let’s say just arbitrarily, the top three to five tick-borne infections and what their most commonly presenting symptoms are, and we had a corresponding therapeutic protocol that you could use. So if someone subjectively flagged, you could then use a trial of, let’s say, four weeks (or whatever the trial period should be). Then if you were seeing movement of their symptoms that would tell you that you were on the right track diagnostically.

That might be easier in theory than in application. But how do you feel about that as an idea? And if you like it, can I commit you to working on that project? Hahaha.

DrTD:   Haha. Let’s do it. I think it sounds interesting. I think it’d be hard to know if it would really work, and so we could come up with this questionnaire, we can develop it, and then we can study it. We can publish our data on it to see whether it really is predicting what we wanted to predict.

DrMR:  I would love to have something like that. One of the things I grapple with as a clinician who is not a specialist in this—and that’s maybe one of the things that I’m trying to achieve with this conversation and with this whole proposal—is how do we help non-specialists be able to grapple with this somewhat successfully?

DrTD:   Yeah.

DrMR:  Right? Because I think you’d like to see more doctors being able to offer this to patients. I’d love to be able to offer this, but I don’t feel like I’m qualified. Some sort of checklist like that, that maybe could knock off 40% of cases. 40% of cases, just as an arbitrary example, may respond to that simple protocol and the other 60% still need that specialty referral. But that would be, in my mind, a huge step forward.

DrTD:   Yeah, that brings up a really good point. I think that there are plenty of patients out there who have been exposed to these tick-borne infections. They get sick or they don’t feel well. They have symptoms, but not to the degree of really chronically ill yet. Those are the patients that this questionnaire would really target because these are patients that you’re either catching early enough or their immune system is still intact. And then you can do the work that you need and you can move them to other side.

“Patients that you’re either catching early enough or their immune system is still intact. And then you can do the work that you need and you can move them to other side.”Mast Cell Activation Syndrome (MCAS) & Tick-Borne Illness - tweet e1540485375388

I use this example sometimes with patients. If I pull 50 patients off the street in front of my office—because I work in an endemic region of the world for Lyme—and I test them, 90% of them probably will test positive for Lyme disease in some form or co-infection. But not all of them are sick. Some of them might have subtle symptoms, some of them may be really sick, and some of them will have nothing, right? If you target those patients in that middle ground with this sort of questionnaire—they have some symptoms and no one can figure it out—then you can target therapy.

I agree with you. A lot of them would get better because their immune system for some reason is handling it differently. The question I always raise is, why do some people get to that severe chronic stage where all these therapies have been tried and nothing is working? Those are the patients that need those specialists. But those middle-ground patients, I think there’s a lot of work that other practitioners can help them with.

DrMR:  Awesome. Well, I will follow up with you via email for the audience. We’re not promising anything. We’re going to give it a shot, but it’s much easier said than done, but hopefully, we can get it done.

DrTD:   Yeah, I think we could explore it. For sure.

DrMR:  Great. Coming back to the testing… is there something that you want to leave practitioners with there, before we can move on to treatment in terms of tests you like, or how you are getting through that quagmire?

DrTD:   As far as testing, you want to talk about the tick-borne testing specifically?

symptomsDrMR:  Yeah. If someone is thinking, “Okay, there are all these symptoms here, and maybe these chronic symptoms are due to a tick-borne illness, but it’s complicated. What might I do?”

DrTD:   I think that you could start with what I call the regular lab testing. There are markers that suggest that there is some chronic infection going on.

It may not point the finger to the exact infection, but for instance, if I do blood work and I see a VEGF level (vascular endothelial growth factor level), that is really a marker for inflammation. I call it a chemical hormone that’s produced by a number of different cells in the body. It’s meant to help your vasculature, your arteries, your veins, to be healthy and allow oxygen to flow through them. So it’s an important hormone, but you want the right amount of it. You don’t want zero and you don’t want off-the-charts. I sometimes use that as a marker for inflammation. Specifically, there is some correlation between Bartonella and elevated VEGF levels. If somebody has an elevated level, it might suggest that I have to do a little more digging for the Bartonella.

I like to use markers and combine that with the specific testing. Really, the best test I think right now for Bartonella is Galaxy Diagnostics. They do both antibody testing for Bartonella Henselae and Bartonella Quintana, which are the two more common species that affect humans, but they do PCR testing for all strains of Bartonella. So far, that’s been the test has been the most helpful in identifying, at the very least, exposure to Bartonella and then hopefully can help confirm true infection.

IGeneX can be very helpful too in a variety of different ways for other things. So those are the two tests that I’ll do. But the problem is that they’re very costly and not every patient can afford that. That’s where we have to rely on some of these markers. We have to rely on clinical symptoms and it’s sometimes the best we can do.

DrMR:  Gotcha. Just trying to connect back to that project we discussed a second ago: would you say potentially, if the questionnaire flags, and if you want to be ultraconservative, you could pair that with a positive VEGF? And if that was positive, that gives you a fairly high clinical suspicion that you should move forward into whatever the connected treatment protocol would be?

homeopathyDrTD:   Yeah. And if I don’t have real confirmation of Bartonella, I’m going to be reluctant to put the money on antibiotics, but I certainly have herbs. I sometimes use homeopathy. Then you can get a sense from how they respond whether you’re on the right track or not.

If they start to say, “Yeah, it’s doing something. I maybe feel a little better,” you think, “Okay, this might be.” If they start having negative reactions to the herbs or whatever you’re using, I have to determine if it’s a mast cell reaction or really a die-off reaction. That becomes a little more complicated. But if they respond positively, then I have some proof that we’re on the right track.

DrMR:  Now, do you find time helps you to parse that? Meaning, if it’s a mast cell reaction, their negative symptoms are going to persist almost indefinitely, but if it’s a die-off reaction, they’ll appear and then fade away over the course of a week or so?

DrTD:   Absolutely.

DrMR:  Good. So we’re in agreement there, because that’s the same thing that I’ve seen.

Treatment for MCAS and Tick-Borne Illnesses

Now, another area that we seem to be in agreement is regarding treatment. In my parallel of GI to your parallel of Bartonella and other like infections here, I’m noticing that for sensitive patients, I have to use more of a single ingredient formula rather than a combination of multiple herbs. And it seems, at least when we were emailing, you agree with that same general type of approach. But with that as a springboard—and we can’t go into all the details obviously—what are some of the salient points regarding how you’re treating these things?

DrTD:   Again, these patients that I think are very reactive and have histamine issues, have mast cell activation syndrome, I’m going to really want to stabilize them from that perspective first. We are looking at the gut, the diet, and their exposures. If they’re living in a moldy house, they also have Bartonella, and they also have mast cell activation syndrome, no matter what I do, if I don’t get them out of the moldy house, nothing is going to work.

You really have to eliminate the triggers that you can control. Sometimes they can’t control that they’re in this house. They have nowhere to go. I wish I could find a way to build some housing where I can put patients who have mold toxicity and just get them out so then they could recover. That’s my dream, to establish something like that. But in the meantime, we do what we can to help stabilize them. Then, if we still feel that the mast cells need work, I’ve got to deal with that.

vitamin CWhether it’s the natural antihistamines like quercetin or vitamin C, or I go to the H1, H2 blockers over the counter, or obviously, lots of other steps, I really want that in place before I start trying to treat the infection. I do want to say, on the flip side, I have patients who, when I start treating their infection, see their mast cells symptoms come down dramatically. I also know that I can’t waste so much time doing that if I really think that infection is the driving force.

So I’m balancing. I’m always balancing in each patient. Always one intervention at a time, one ingredient at a time, always looking for filler issues. A lot of these patients react to things like cellulose in the capsule, in the powder. It’s challenging that way. Sometimes we use tinctures. Sometimes they’re better tolerated, sometimes they’re not. Again, very individualized. We’re overlapping the treatment, trying to see how much is infection-driven.

Then, if I need to, I’ll pull out the big guns: the antibiotics. Sometimes you need them. You can’t do everything herbally sometimes. And then I pull out the big guns if I need for the mast cells too.

DrMR:  Gotcha. It makes a lot of sense that you’re trying to find the right balance between quelling an overzealous immune system and when to go right after the infection. Yeah, I think that makes a lot of sense. It’s a good theoretical premise for providers to be cognizant of. And then if they’re familiar with the treatment on those different areas, they can select therapies that would hit each endpoint: mast cell stabilization, immune system stabilization, or direct therapeutics against Bartonella.

Regarding the Bartonella, are there a few companies there that you think stand out, if providers are looking to dig a little deeper? Where would you point them?

DrTD:   For herb treatment?

DrMR:  Yes, I’m sorry. Treatments for Bartonella.

DrTD:   Yeah. I would say that my top choices for herbs would be things like Sida acuta, I like Woodland Essence for that. Houttuynia is another that seems to be Bartonella-specific. Those are probably my top two. Cumanda, which is made by the Nutrimedix line, is another one that seems to cover Bartonella. Then there are these other immune-supporting herbs. Sometimes you need Resveratrol, green tea extract, and things like that. But again, everything has to be very individualized.

patientI think that’s the main take-home point to those who are watching, who are practitioners. I would say that number one, you have to individualize. Every single patient is different. And sometimes, when I get referrals, I see there are some patients from specific practitioners that are all on the same protocols or doing the same thing. Sometimes that works for a subset of patients, but these patients who are really sick, who have mast cell activation syndrome, who have been sick for a long time, one-size-fits-all is not going to work.

So I could love Sida acuta in the last three patients I saw, but I have patients who cannot even take a drop of that. I need to always go back, look at the patient, and look at what they’re dealing with, and what else they have that I’m not thinking about. Again, if I’m going after Bartonella, but they have mold issues, other environmental triggers, or they’re still eating gluten or whatever, nothing I do is going to work.

But those are my top herbal treatments for Bartonella. I do tend to stay away from Byron White Formulas for these patients. I don’t know what your experience with Byron White is. They’re fabulous herbs, but there are so many herbs in each formula.

DrMR:  Yeah, I had Byron White in mind when I was referring to the multi-ingredient Lyme formulas. And I do think that Byron White Formulas are fantastic and can be terrific. But if someone is highly sensitive, the multiple ingredient nature of them makes them a little bit dicier.

DrTD:   Exactly.

View Dr. Ruscio’s Additional Resources

Don’t Overlook Foundational Habits

DrMR:  I’m glad you said that piece about gluten. Just to share my personal experience with all of this with audiences— because I think it is a good reminder of the simple clinical order of operations—I was convinced I had a Bartonella infection, due to this migratory joint pain and fatigue that I was experiencing. I ran some testing: a LabCorp profile, multiple antibody assays for whatever, the different Henselae. They have two or three different antibody profiles, they offer nPCR. And everything came negative.

However, I went on an herbal treatment protocol for Bartonella and I felt so much better… convinced, still, that I had Bartonella! This is why I think it’s so important for clinicians to be objective and to isolate variables because you can easily see a false association, which I did. Later, the symptoms returned, I went back on the protocol, and the symptoms didn’t get any better.

I finally figured out through observation and trial and error that I was eating more gluten than my body could tolerate. I had been ardently avoidant of gluten for many years. Then as I learned more about the issue, I discovered that not everyone has a problem with gluten. I opened that part of my diet up. What ended up happening was, I was consuming gluten habitually.

I’d have maybe one or two beers, regular beers, on the weekend. If there was whatever type of gluten, I’d have something. I was having gluten probably three to five days per week. And I think that was more than my system could handle. And it was when I throttled that back to only the occasional splurge that I saw all of those symptoms go away and never come back.

glutenWe don’t want to make everything caused by gluten, on the one hand, yes, but we also want to make sure that we revisit some of these basics. Because if a patient comes in and tells you that they’re eating a really healthy diet, that healthy diet may have a different definition for a different patient. Albeit this is rudimentary. It’s just something to double-check, to make sure that you’re not going after phase four or five therapies when you’ve missed phase one, which would be just getting the diet tucked away.

DrTD:   Yeah. Thank you for sharing your experience. It does make a good point. I’m sorry that you had to go through it, but I think you learned a lot, obviously, about yourself and your patients. But that’s the truth. You say you’re not a Lyme specialist, you may not feel comfortable treating those really complex patients. But the work that you do is tremendous. You do help a lot of people and that’s because you get to the root, you’re dealing with the base.

You’ve got to establish that base—the foundation, I should say—so that if they’re not getting better with that foundation, then we can institute these other treatment protocols. And they’ll be better at accepting these treatment protocols because you’ve done that work. When a patient comes to me and says they’re not getting better on this protocol, and I have them on antibiotics and herbs, on every visit, I always ask them about their diet.

“Yeah, yeah. No, I’m good, I’m good.”

“It’s okay, you know what? Why don’t you just run through a typical day for me?”

I always have them run through a typical day. They go through the day and it sounds pretty good, but I’m still suspicious and say, “Okay. How many days a week do you do that?”

Then, it comes out that they’re grabbing the bread at the dinner table, in a restaurant. They’re having a sip of beer as you said, or they’re having things. Things are entering the equation. Then, I think, well, maybe they’re not getting better, not because what I’m giving them is not working, but because they’re introducing more inflammation. Their immune system can’t deal with it.

So I think you make a great point. We have to set that foundation. Patients need to understand that they have to do the work, which is hard work in getting some of that stuff eliminated.

DrMR:  Yeah. It is. But I also tell my patients that it’s not forever. Let’s get you to a point where you have no symptoms. Then we can start opening up the boundaries and figuring out what you can’t and do. But if you’re trying to get to the point of no symptoms, you can’t be missing these foundational pieces. It just doesn’t make sense.

DrTD:   That’s right.

The gluten piece, I think, is really more critical than we think. And the question is, and you brought it up, what happens in the future for these patients? I do the same thing. I say we don’t know what the future holds. Let’s do this now, let’s get you better, and then we’ll reexamine. But I do wonder whether gluten really isn’t good for most people.

DrMR:  Certainly, I would think, in a somewhat chronically-plagued-by-symptoms population, you’re going to have a much higher distribution of people who don’t do well with gluten at all.

Episode Wrap-Up

Great, this has been a fantastic conversation, Tania. I always enjoy connecting and talking through some of these points. Do you want to refer people to a website, a paper, or anything?

DrTD:   Yeah, absolutely. My website is drtaniadempsey.com. I post blog posts on there. And my Facebook is Dr. Tania Dempsey. I have a Facebook Live event that’s going to be coming up in May, which I think maybe your listeners will be interested in. We did a Facebook Live event last month, which was really great, very successful. We answered all kinds of questions about mast cell activation syndrome, and I’m sure there’ll be questions about Lyme and other things too this time. So check out the Facebook page and the announcements for that coming up.

And stay tuned to information about the new center that will be opening hopefully by the end of the summer. We’ll have exciting opportunities for practitioners. I’m hoping to bring some more people on board. Those listening, if you might be interested in joining us, definitely reach out to me via these different places and I’m excited to see what comes next.

DrMR:  Awesome. Well, thank you again, Tania, for being here. It’s a pleasure chatting.

DrTD:   Thank you so much for having me. It was really great.

DrMR:  Awesome, you’re welcome.

What do you think? I would like to hear your thoughts or experience with this.

Dr. Ruscio is your leading functional and integrative doctor specializing in gut related disorders such as SIBO, leaky gut, Celiac, IBS and in thyroid disorders such as hypothyroid and hyperthyroid. For more information on how to become a patient, please contact our office. Serving the San Francisco bay area and distance patients via phone and Skype.

Discussion

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4 thoughts on “Mast Cell Activation Syndrome (MCAS) & Tick-Borne Illness

  1. a thought occurred to me during this episode – is it possible that SIBO is frequently not an active infection but a *past infection* that triggered a kind of vicious circle of immune activation that the gut can’t pull itself out of?

    inflammation triggers the mast cells, which triggers mast cell migration/proliferation in the gut and then the mast cells release their stuff that triggers inflammation too potentially producing a vicious cycle of immune activation in the gut. plus there’s a constant flow of stuff moving through the gut “agitating” those areas and now there’s more mast cells and they’re primed, the area is already inflamed so healing will be difficult, just like you can’t keep scratching an itch if you want it to heal.

    because many people (like me) have not responded to antibiotics at all but what seemed to trigger this mess in the first place was a bacterial infection in the past, but it seems to be gone now and antibiotics don’t do a thing now.

    in other words, could some cases of SIBO be a remnant of a past infection and not an active one anymore and that mast cells and nerves rewiring themselves for inflammation (neuroplasticity?) could be the reason the problems persist even though the infection is long gone?

    much of this was covered in the podcast but i think this is a really important area to explore more. other than this episode, i hadn’t heard about this angle much at all, most practitioners seem to be focused on killing or starving active infections but a significant portion of SIBO patients might not be dealing with active infections at all but rather their immune systems/nerves being dysregulated by a past one.

    otherwise, thank you Dr Ruscio. you are doing amazing work. gut diseases are usually not lethal but make no mistake, they destroy people’s lives. it’s not much of a life when the majority of your time is consumed with your gut and the toilet all the damn time. your work is so important.

    this link i found interesting too:

    Significance of Conversation between Mast Cells and Nerves

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877069/

  2. a thought occurred to me during this episode – is it possible that SIBO is frequently not an active infection but a *past infection* that triggered a kind of vicious circle of immune activation that the gut can’t pull itself out of?

    inflammation triggers the mast cells, which triggers mast cell migration/proliferation in the gut and then the mast cells release their stuff that triggers inflammation too potentially producing a vicious cycle of immune activation in the gut. plus there’s a constant flow of stuff moving through the gut “agitating” those areas and now there’s more mast cells and they’re primed, the area is already inflamed so healing will be difficult, just like you can’t keep scratching an itch if you want it to heal.

    because many people (like me) have not responded to antibiotics at all but what seemed to trigger this mess in the first place was a bacterial infection in the past, but it seems to be gone now and antibiotics don’t do a thing now.

    in other words, could some cases of SIBO be a remnant of a past infection and not an active one anymore and that mast cells and nerves rewiring themselves for inflammation (neuroplasticity?) could be the reason the problems persist even though the infection is long gone?

    much of this was covered in the podcast but i think this is a really important area to explore more. other than this episode, i hadn’t heard about this angle much at all, most practitioners seem to be focused on killing or starving active infections but a significant portion of SIBO patients might not be dealing with active infections at all but rather their immune systems/nerves being dysregulated by a past one.

    otherwise, thank you Dr Ruscio. you are doing amazing work. gut diseases are usually not lethal but make no mistake, they destroy people’s lives. it’s not much of a life when the majority of your time is consumed with your gut and the toilet all the damn time. your work is so important.

    this link i found interesting too:

    Significance of Conversation between Mast Cells and Nerves

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877069/

  3. I am following the treatment plan outlined in your book. I had (have) Lyme Disease and it was the aggressive abx treatment for Lyme that pushed my body into a chronic state of fatigue 12 years ago. I find even detox herbs to be overwhelming to the body (Byron White Detox, one drop to the bottom of my foot was too much).

    From experience with your sensitive patients, do you have suggestions regarding taking the antimicrobial herbs? I know to go “low and slow” but have you seen them to be effective at killing gut bugs at low doses?

    Thank you much for these informative, encouraging videos.

  4. I am following the treatment plan outlined in your book. I had (have) Lyme Disease and it was the aggressive abx treatment for Lyme that pushed my body into a chronic state of fatigue 12 years ago. I find even detox herbs to be overwhelming to the body (Byron White Detox, one drop to the bottom of my foot was too much).

    From experience with your sensitive patients, do you have suggestions regarding taking the antimicrobial herbs? I know to go “low and slow” but have you seen them to be effective at killing gut bugs at low doses?

    Thank you much for these informative, encouraging videos.

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