How to Improve Long-Haul COVID Symptoms

Residual COVID Symptoms, Mast Cell Activation, and Your Gut with Dr. Leonard Weinstock

The scientific understanding of COVID-19 is evolving rapidly, and the research now tells us that there is a link between gastrointestinal dysbiosis and the symptoms of long haul COVID. 

On today’s podcast, I speak with Dr. Leonard Weinstock, a gastroenterologist and clinical researcher. We discuss his latest findings about long COVID, mast cell activation, and the relationship to gut health. 

For COVID-19 patients who are suffering with severe chronic symptoms post infection, these findings could change the way this condition is treated by highlighting the role of restoring microbial balance.

In This Episode

Intro … 00:00:44
Long Haul COVID … 00:07:37
Long Haul COVID Symptoms … 00:19:41
Long Haul COVID Therapeutics … 00:28:41
Over and Under Diagnosis … 00:32:00
MCAS Diagnostic Criteria … 00:36:30
MCAS and Gut Health … 00:39:12
FODMAP Diets … 00:42:10
Reducing Inflammation … 00:43:40
Algorithms for Diagnosis … 00:48:47
Adhesion Therapy … 00:50:49
Medical History and Adhesions … 00:56:00
Breath Testing … 01:00:23
Wrap-Up … 01:02:47

How to Improve Long-Haul COVID Symptoms - Podcast322 LennyWeinstock

Subscribe for future episodes

  • Apple Podcast
  • Google Podcasts
  • Spotify

Download this Episode (right click link and ‘Save As’)


Hey everyone. Today I speak with Dr. Leonard Weinstock, who is someone I really have a lot of respect for. He’s been on the podcast before. He is a conventional gastroenterologist, but he also has published and continues to publish really valuable and insightful clinical research. So we had a great conversation today, and we talked about a number of things, one of which was this long COVID. We definitely had, at times, a contentious, challenging, but I think overall very beneficial back-and-forth. Most of the back-and-forth centered around how we look at this and how we frame this.

What was helpful to see is even though Lenny is doing an impressive job of documenting how mast cell activation may underlie some of the long-haul COVID, when we analyze further and unpack down to what to do about that, we’re left with a very similar set of tools that we’ve discussed on the podcast and have been discussing on the podcast and in Healthy Gut, Healthy You for years now.

Perhaps some nuances, but one of the things and one of the main reasons why there was some contention here is that I have become progressively sensitive to how important it is to contextualize this for people. If we don’t, people can go to the worst-case scenario and think that there’s either a miracle drug for MCAS and if they get the miracle drug, they’ll feel better, and if not, they have no agency and no empowerment toward improving their own health. That’s not the case, and actually, there’s quite a lot that can be done. Thankfully, through having conversations on this podcast we’ve been able to discuss a lot of these things, even in a nuanced fashion, so you’re armed with what you can do to improve your health if you are someone who has post-COVID residual symptoms, which may involve the intermediary mechanism of mast cell activation.

We also did a short stint into some of his research on the impact that adhesion therapy, specifically the Wurn therapy or Clear Passage therapy has on IBS and SIBO and just GI cases in general, and a short mention on what he’s doing and how he’s thinking about hydrogen sulfide SIBO. So really a very interesting and productive podcast. I always enjoy the conversations with Lenny.

Again, I do want to remind you that the one thing where we really found common ground on how we look at post-COVID long-haul and how MCAS may map onto that is what can be done to improve someone’s health who finds themselves in that situation. These are the same exact things that we really have been trying to explore on the podcast. Your diet, of which there are a handful, and figuring out which one is best for you is very, very important. Your lifestyle, which again, is something that sounds so simple, but as we’ve been chronicling, monitoring, and treating now at the clinic, something along the lines of a respiratory problem at night or maybe mild to moderate obstructive sleep apnea can make a big difference in how someone’s feeling.

And then of course, one of the central things that we address at the clinic and I also discussed in Healthy Gut, Healthy You would be what we have to do to really get your gut health to its optimum. Lenny confirmed that it has a massive impact on mast cell activation syndrome. So the things that we’re doing at the clinic and/or are laid out for you in the book are really central to improving your health, no matter the intermediary mechanism that we’re discussing.

Is it a panacea? No, but these are the things that I’ve found to be the most effective in moving the needle for improving someone’s health. So I just want to remind you of the resource of the clinic if you are in need of health and you need guidance for how to put all the pieces together and not get sucked into an interesting podcast, blog, or what have you that may give you one snippet. Where do you go when you really need to be directed through the process? There’s a larger process that informs what we do and also filters out the things that we shouldn’t do, which is probably more than half the battle if I’m being honest. So again, if you’re in need of help, please do not hesitate to reach out to the clinic. We are more than happy to help you along the way.

I’ll be doing a podcast soon, although I’m not sure where it will release relative to this one, where I chronicle some of the nightmare-ish experience I’ve had in trying to get to the bottom of some of these sleep issues. When I say issues, it’s predominantly me trying to optimize, but you would be shocked when I released a podcast where I discussed how terribly I felt I was treated as a patient. Not on purpose, but that’s just how bad some of the standard care is. It really reaffirmed for me how important what we do at the clinic is, because I had people telling me I needed to have my face cracked open with surgery for this optimization for sleep I was going through.

Thankfully, I was able to keep my wits about me and not get pulled into some of this craziness. But again, it reminded me of how I was taking for granted the competent and practical advice that we’re giving at the clinic. That’s why I’d again remind you that it is there for you as a resource, because I don’t think that there are many like that. I’m just really honored and proud to be part of an operation that I think is giving people really competent advice. So in any case, we will now go to the podcast with Dr. Leonard Weinstock.

➕ Full Podcast Transcript

Intro:

Welcome to Dr. Ruscio Radio, providing practical and science-based solutions to feeling your best. To stay up to date on the latest topics, as well as all of our prior episodes, make sure to subscribe in your podcast player. For weekly updates, visit DrRuscio.com. That’s D R R U S C I O dot com. The following discussion is for educational purposes only and is not intended to diagnose or treat any disease. Please do not apply any of this information without first speaking with your doctor. Now let’s head to the show.

DrMichaelRuscio:

Hey everyone. Today I speak with Dr. Leonard Weinstock, who is someone I really have a lot of respect for. He’s been on the podcast before. He is a conventional gastroenterologist, but he also has published and continues to publish really valuable and insightful clinical research. So we had a great conversation today, and we talked about a number of things, one of which was this long COVID. We definitely had, at times, a contentious, challenging, but I think overall very beneficial back-and-forth. Most of the back-and-forth centered around how we look at this and how we frame this.

DrMR:

What was helpful to see is even though Lenny is doing an impressive job of documenting how mast cell activation may underlie some of the long-haul COVID, when we analyze further and unpack down to what to do about that, we’re left with a very similar set of tools that we’ve discussed on the podcast and have been discussing on the podcast and in Healthy Gut, Healthy You for years now.

DrMR:

Perhaps some nuances, but one of the things and one of the main reasons why there was some contention here is that I have become progressively sensitive to how important it is to contextualize this for people. If we don’t, people can go to the worst-case scenario and think that there’s either a miracle drug for MCAS and if they get the miracle drug, they’ll feel better, and if not, they have no agency and no empowerment toward improving their own health. That’s not the case, and actually, there’s quite a lot that can be done. Thankfully, through having conversations on this podcast we’ve been able to discuss a lot of these things, even in a nuanced fashion, so you’re armed with what you can do to improve your health if you are someone who has post-COVID residual symptoms, which may involve the intermediary mechanism of mast cell activation.

DrMR:

We also did a short stint into some of his research on the impact that adhesion therapy, specifically the Wurn therapy or Clear Passage therapy has on IBS and SIBO and just GI cases in general, and a short mention on what he’s doing and how he’s thinking about hydrogen sulfide SIBO. So really a very interesting and productive podcast. I always enjoy the conversations with Lenny.

DrMR:

Again, I do want to remind you that the one thing where we really found common ground on how we look at post-COVID long-haul and how MCAS may map onto that is what can be done to improve someone’s health who finds themselves in that situation. These are the same exact things that we really have been trying to explore on the podcast. Your diet, of which there are a handful, and figuring out which one is best for you is very, very important. Your lifestyle, which again, is something that sounds so simple, but as we’ve been chronicling, monitoring, and treating now at the clinic, something along the lines of a respiratory problem at night or maybe mild to moderate obstructive sleep apnea can make a big difference in how someone’s feeling.

DrMR:

And then of course, one of the central things that we address at the clinic and I also discussed in Healthy Gut, Healthy You would be what we have to do to really get your gut health to its optimum. Lenny confirmed that it has a massive impact on mast cell activation syndrome. So the things that we’re doing at the clinic and/or are laid out for you in the book are really central to improving your health, no matter the intermediary mechanism that we’re discussing.

DrMR:

Is it a panacea? No, but these are the things that I’ve found to be the most effective in moving the needle for improving someone’s health. So I just want to remind you of the resource of the clinic if you are in need of health and you need guidance for how to put all the pieces together and not get sucked into an interesting podcast, blog, or what have you that may give you one snippet. Where do you go when you really need to be directed through the process? There’s a larger process that informs what we do and also filters out the things that we shouldn’t do, which is probably more than half the battle if I’m being honest. So again, if you’re in need of help, please do not hesitate to reach out to the clinic. We are more than happy to help you along the way.

DrMR:

I’ll be doing a podcast soon, although I’m not sure where it will release relative to this one, where I chronicle some of the nightmare-ish experience I’ve had in trying to get to the bottom of some of these sleep issues. When I say issues, it’s predominantly me trying to optimize, but you would be shocked when I released a podcast where I discussed how terribly I felt I was treated as a patient. Not on purpose, but that’s just how bad some of the standard care is. It really reaffirmed for me how important what we do at the clinic is, because I had people telling me I needed to have my face cracked open with surgery for this optimization for sleep I was going through.

DrMR:

Thankfully, I was able to keep my wits about me and not get pulled into some of this craziness. But again, it reminded me of how I was taking for granted the competent and practical advice that we’re giving at the clinic. That’s why I’d again remind you that it is there for you as a resource, because I don’t think that there are many like that. I’m just really honored and proud to be part of an operation that I think is giving people really competent advice. So in any case, we will now go to the podcast with Dr. Leonard Weinstock.

DrMR:

Hey everyone. Welcome back to another episode of Dr. Ruscio Radio. This is Dr. Ruscio. Today, I’m here with Dr. Leonard Weinstock, someone whose work I really appreciate and respect. So Lenny, I guess let me just start by saying thank you for all the papers that you’ve published. You’re one of the few people that are in this leveraged position of being in clinical practice as a conventional gastroenterologist, but also publishing in the research literature. So it’s always a really prized perspective to be able to bring to the table. I believe this is your third or fourth time on the podcast, so you’re no stranger to the show. It’s always a pleasure to have you back, so welcome.

DrLeonardWeinstock:

Thank you so much, Michael.

Long Haul COVID

DrMR:

We were talking before and I wish we had actually been recording. We were bandying back and forth different pros, cons, and ways of thinking through some of this long-haul COVID that is being reported. I think we should pick some of that back up and rehash that for our audience. Maybe you could just set the stage for explaining that to people and what you’ve seen clinically, and then we can revisit our bandying from there.

DrLW:

Absolutely. Well, we had a theory article written primarily by Dr. Lawrence Afrin. That was in the beginning of 2020, I believe. It took off with the idea that about 20% of people who get COVID have severe disease. There are chemical studies that have been done and biological studies that have been done showing that the mast cell may mediate a lot of the bad COVID. And then we also thought that the long-haul COVID symptomatology that was being reported at that time was very similar to what mast cell activation syndrome patients have.

DrLW:

So we had a framework with the ending saying if this is the case then basic mast cell directed therapies like anti-histamines could have a great benefit for patients. We were talking about the fact that I just completed the data collection for a long COVID study looking at two different things — restless leg syndrome, the prevalence before and after COVID, and mast cell activation symptoms, but not syndrome, after COVID in long-haul state.

DrMR:

And you’re finding a correlation between those who have restless leg being at increased risk for this long-haul COVID?

DrLW:

No, it’s actually the opposite. It’s that patients followed for a while, namely they had long-haul symptomatology, they had an incidence of two-and-a-half times controls or themselves prior to getting infected. We actually looked primarily at women because there weren’t enough men in the group of long-haul participants that gave us their answers on the internet-based questionnaire. We found that 5.7% of all patients pre-COVID had restless leg syndrome, but after they had COVID and were in the long-haul stage, it went up to 14-and-a-half.

DrMR:

So that was the basis of one manuscript that’s being submitted. And then the other is on mast cell activation symptoms. And you can have these symptoms if you have DAO enzyme disorders, if you have mastocytosis or mast cell activation syndrome. So a number of histamine issues, as you like to say I understand, can come out with symptomatology in 11 different parts of your body. But what we looked at was control versus pre-COVID-19 long COVID participants, post-COVID-19 long COVID participants, and mast cell patients. And we basically had a questionnaire that had all the symptoms that you can possibly have with mast cell disorders and questions about problems that you can have with COVID.

DrMR:

Lenny, not sure if you can do anything about your connection. I caught most of that, but you were going a little bit in and out, so I’m not sure if you’re able to fool with any wires, so to speak. But I think I’m genuinely tracking with you. There are a couple of things here that I had said in response to that. Let me try to first frame for our audience my perspective here. Firstly, seeing how many patients have been wrongly diagnosed and the amount of emotional, psychological, and also physiological ill-health that seems to cause people has made me more sensitive to how we frame things and even how we describe things.

DrMR:

As you noted, and thank you for that, we’re moving away from labels like MCAS and SIRS, and more toward things that are less pathologically loaded, so to speak, to histamine intolerance and mold exposure. And because patients definitely do tend to internalize these things and I think perhaps providers don’t always fully appreciate that, a term for us that is just an academic acronym that’s convenient to use may sound more pathological than perhaps it’s intended to, or it just carries more of an emotional triggering capacity than other words.

DrMR:

I was tying that in with the fairly remarkable responses that we’ve seen when patients have done limbic retraining and how Ashok Gupta has even published this hallmark paper on chronic fatigue syndrome showing an impressive reduction in fatigue and other associated scores after performing limbic retraining therapy, which has made me more attuned to how important communication framing and a patient’s perspective on these things can be.

DrMR:

So that was part of what I want to try to clarify and parse with this observation, wanting to be careful and attentive not to create and therefore potentially facilitate a “nocebo,” a negative expectation from people who have had COVID. And I think we’re in an especially non-fortuitous climate, so to speak, because people’s lives, for a fair measure, may not be back to normal. People may have had severe disruptions in their daily rhythms, especially if they have children and had to homeschool them, if their gym’s closed, if how they got groceries was altered, or if their socialization was altered. If throughout all of that, even if that’s better than it was, let’s say they gained weight and became a bit de-conditioned. So now they go back to go for a run and they say, “Boy, I’m getting winded.” Well, I take two weeks off from the gym and I feel like I’ve taken two years off in some cases.

DrMR:

So I’m not discounting that there could be something there, but I’m also trying to be very vigilant about not making it any easier for people to attribute to COVID what might be, and this is just my “guesstimation,” but is predominantly situational. Again, it’s not to say it’s all one or all the other. We have to frame this in absolute terms, but at least my perspective would be that there’s a much higher likelihood that a lot of what we’re seeing could be driven situationally, and that’s my concern. Again, not to say it has to be all one or all of the other. That’s kind of where we left off, Leonard, so I guess I’ll give you a chance to respond to some of that.

DrLW:

Okay. Well, just to be controversial, Michael, there are 18 studies that have been done of long-haul patients, or long COVID as I would prefer to call it. And the symptomatology is quite diverse and also so interesting that from one study to another they pretty much get the same symptoms in spectrum. With respect to the largest studies, there was a study of 1.9 million Americans who had been infected by COVID and they were asked questions of what their symptoms and problems were after and if they went to the doctor.

DrLW:

So they actually took it from physicians, DRGs, and coding, and they found that if the American was hospitalized, 50% had long COVID symptoms. If they were not hospitalized, 23% had it. And then in Spain, where we had a big outbreak, they look at COVID prospectively. 44% of 1,100 Spaniards had long COVID symptoms, and then 47% of 2,600 prospectively-studied Russians had longstanding symptoms.

DrLW:

So what has bothered people, and this is a quote from somebody from the CDC, is that “Long COVID has been described as a mysterious mix of symptoms with no clear pattern.” But I don’t think that’s true by our research. And with respect to DNSR, Gupta and so forth, we talked about that it does not take away potential diagnosis of let’s say mast cell activation syndrome, which by the way is not just a bunch of symptoms, but it is also documenting increased levels of chemical mediators that come from mast cells or having a biopsy that’s having too many mast cells per high power field.

DrLW:

The factors that go from the brain outwards are true. And I have a slide that I show where eight different chemicals come out during stress and activate mast cells. So if you can control your brain and cut down on the mast cell activation factors, then with the cells that are living in parts of your body that maybe normal, mast cells won’t be activated or stimulated.

DrLW:

So as we discussed, I tend to believe patients who have long COVID for the most part do have a new disease, and I’m calling it the second epidemic or second pandemic. I think that ultimately there are going to be arguments about coding, having an ICD code to be able to give patients disability insurance and so forth. This is yet to be discussed, but I think that it’s really important because many of these patients are disabled.

Long Haul COVID Symptoms

DrMR:

Regarding the symptoms, are there some that are a prevalent cluster on this the somewhat non-uniform mixture?

DrLW:

What’s exciting about our paper is that this non-uniform mixture actually takes a shade of mast cell activation syndrome symptomatology. Not only the classic symptoms, but the severity levels are the same or higher. What’s really cool, and I’d like to show you at some point after it’s published for sure, is that Jill Brooks came up with a star of symptomatology in each organ system with a severity. These are thumbprints or spider net plots. When you were controlled, you looked like little starfish, and then when you pre-COVID, the patients remembered their symptoms and they looked exactly like the controls. And then in the long-haul state, their spiderweb plots were exactly the same as the mast cell activation patients that were from my practice.

DrLW:

So severe weakness jumped up on a scale of zero to 10, 1.5 baseline up to 6.8 post-COVID. Brain’s fog went up six fold after COVID. Fatigue attacks so severe that they had a hard time keeping their eyes open went up five times. Rapid heart rate went up five times. Now that’s interesting because dysautonomia has been reported after COVID. Muscle pain went up five times, and shortness of breath, for whatever reason, as you say, there could be multiple reasons, went up five times. Migraines, twice as much, and so forth. And one other one that went up quite a bit was nerve discomfort. It went up four times, and as I told you, one of my patients has to soak his feet in cold ice water to be able to cut down on the severity of the pain so that he can try to sleep.

DrLW:

The same gentleman had chest pain and he had gone to Mayo Clinic and Cleveland clinic and had an angiogram to work up his chest pain, which of course was normal. But here’s a guy who has severe weakness, severe muscle pain, severe neuropathy, and severe brain fog.

DrMR:

So continuing with your hypothesis, which again, admittedly does make me a little bit uncomfortable, but I’m open-minded. Whatever degree of discomfort I have is because I’m always wanting to protect people and making sure that they’re focusing their efforts to the most root causal factor that they can. So that’s where everything that’s resistant to whatever degree on my end comes from, just to frame this. So open, but a bit reserved.

DrMR:

But let’s continue with it in terms of, okay, we’ve seen this association. What now is the therapeutic support for this? I’m assuming that some of the typical MCAS agents are used, but have you gotten that far? And what are you seeing in terms of what people can do about this association?

DrLW:

Well, just before we do that, let me say that you talked about root causes and that’s really important. We have different theories of how long COVID can occur, but it may be that the SARS-COVID-2 virus activated mast cells by cytokines affecting the mast cells and microglia, dysregulation of genes by the virus leading to loss of genetic regulation of mast cells, development of auto-antibodies, which has been associated with the patient case report, POTS that occurred after long COVID, and then increase in toll-like receptors by the Coronavirus.

DrLW:

And then with respect to restless leg syndrome, in the other paper that we’re writing, it’s known that post-viral conditions can cause restless leg syndrome. Maybe these are all there for something that boils down to you get this horrible virus, which is the worst virus we’ve ever seen. This isn’t just a cold, this is the worst virus ever. And it has properties of getting in cells like crazy, like in the GI tract, you can have the cells harboring virus for months. Just parenthetically, a stimulus to let’s say, the GI tract, mast cells come to the rescue trying to defend the body, but then they get infected by the virus and then they change, they lose their controller genes, for instance. So I think those are the theories that make this “a real disease.”

DrMR:

As you say that, there are a few observations that I want to share with our audience that I think are hopeful. Hopefully you’ll corroborate some of this, Lenny, with the therapy interventions that you’ve gone through. In the clinic we’ll see a facet of what I’m predominantly assuming is mast cell activation. Now I say predominantly assuming mainly because, and just as a footnote for our field, I think we have to be very careful about proclaiming a disease versus having actual documentation and evidence of a disease. And I see this happening with SIBO where I have to affirm people actually have SIBO when they come in as a new patient because it’s commonplace now for people to be bloated and say, “Oh, my SIBO’s acting up.” Have you ever had a test? No.

DrMR:

So we’re predominantly assuming, although we have used Afrin and Dempsey’s questionnaire. We do send that to patients at least as an attempt to get a subjective form to give us some verification. So predominantly assumed based upon their presentation, in some cases we’ll have them fill out this questionnaire, and if it scores or flags for MCAS, then we have at least something diagnostic.

DrMR:

But the point I’m driving at is in going through the same sort of hierarchical interventions that I harp on in the podcast, which centers around GI, but isn’t limited to GI, the degree of improvement that we’ve seen has been pretty remarkable. In fact, it’s worked better than some of the fairly powerful mast cell stabilizing or H2 and H1 antagonizing drugs. It’s not to say it’s one or the other. Again, I don’t mean to be painting these kinds of false dichotomies, but what was reassuring about that was at first I thought, “Well, if someone’s presenting with these severe symptoms, it must be something loosely-described more pathological like MCAS.”

DrMR:

And the way I’ve been thinking about this through more observation is if we can get their diet right, that’s one notch down on the degree of mast cell activation. If we can get their gut healthier, which is usually something that takes quite a bit of trial and error and listening to find out, probiotics, antimicrobials, immunoglobulins, elemental dieting, fasting, how do we find the right approach for someone’s system? That’s a huge few notches on the dial down in terms of MCAS potential. And if we leverage that with mindset work, if there’s some residual fear, another dial on the notch down.

Long Haul COVID Therapeutics

DrMR:

So what’s hopeful for me about this is while there may be this intermediary of the mast cells, at least I like to think that a lot of this emanates from this causal root structure that many of the things that we’ve been identifying and working with on the podcast. And I don’t refute that there’s a time and a place for a certain medications, but again, just to share my observations that we’ve had some people come in from doctors who are mast cell physicians, and they weren’t really super satisfied with the various cocktails that they were on. Although many of them produce some improvement, it may have been missing some of the mark. So that’s at least a degree of optimism that I bring to this. I guess maybe as a segue into therapeutics, Lenny, what do you think?

DrLW:

The things that I utilize are anti-histamines. One of the first physicians who contacted Dr. Afrin is a professor at Yale who got COVID and couldn’t breathe, and couldn’t do his surgery. And with the reading of that one article that was written on mast cells as a root cause for long COVID and severe COVID, he started high dose anti-histamines, H1 and H2 blockers. He was actually taking 60 of famotidine, and if he took less he’d be short of breath. This is long after his infection. So he’s actually now joined our investigational group or study group and is helping organize a conference we’re giving in November.

DrLW:

So H1 and H2 blockers are critical. I think low-dose naltrexone is fantastic. It’s got multiple reasons why it can help patients who have mast cell like symptoms, and also in my experience with the restless leg syndrome as well, I love the drug. It’s amazing what it can do for you. With respect to making a parallel to exercise, running, and doing all the good things, it tricks the body into making endorphins which reduce T and B-cell activation, reduces mast cell activity, so I think that’s really critical. Vitamin D, in the right doses, likely played a role. I also use vitamin C. And the flavonoids may well have a major role here. So flavonoids are lutein and quercetin. They come from fruits and vegetables, very natural, obviously. There’s one doctor out of Tufts University, Dr. Theodocoles, who’s had a lot of success with lutein. So those are the basic things.

Over and Under Diagnosis

DrLW:

Going back to what you said, I’d like to discuss over-diagnosis and under-diagnosis, because we have that in IBS, SIBO, and mast cell activation syndrome, just to name three.

DrMR:

Yeah, please.

DrLW:

So when you’ve got a group of allergists who believe in only looking at the tryptase level, they’re basically going to shoot anybody in the foot coming through the door thinking they’ve got mast cell activation syndrome, because only 15% of people with this genetic disorder, it’s a mutation of the generic controller of the mast cell, have tryptase elevation. They also say that the tryptase has to go up during attack two times plus 20% of their baseline and they’ve never shown data, a case series, or anything with this. And so you’re going to take a person who’s been suffering for decades who could get a diagnosis if they use consensus-2 group criteria, which is actually the first criteria that came out by Dr. Molderings in 2007, you’re going to under-diagnose.

DrLW:

Now, over-diagnosis can be a problem, absolutely, but the number of Munchhausen-type patients running around I could count in my practice is one time in 35 years versus the number of undiagnosed patients and ones who I couldn’t diagnose until I understood mast cell activation syndrome. So that’s my long view on that. You could talk about breath tests, whether they were done correctly. One group in my hometown misdiagnoses every single breath test that I could do a second opinion on. But you also have for that bout of food poisoning that triggers post-infectious irritable bowel syndrome, you’ve got biomarkers with the anti-vinculin antibody, which makes it a real disease.

SponsoredResources:

Hey everyone. I’d like to thank Athletic Greens for making this podcast possible. And if you’re like me, you may sometimes struggle with getting in enough nutrient-dense foods. One thing that I’ve really appreciated about Athletic Greens or AG1 is not only are they the best tasting one that I’ve had to date, they also help ensure that I’m getting adequate nutrition and really hitting the mark regarding nutrient density. And I’ve been using them every morning, pretty much every morning, as part of my morning shake. Now, one scoop of AG1 contains 75 vitamins, minerals, and whole foods-sourced ingredients, including a multivitamin, a multimineral, a probiotic, and a green superfood blend all in one serving. The other thing I really like about the company is Athletic Greens continues to improve this one holistic formula based upon the latest research, and they’ve produced 53 improvements in their formula over the past decade, which is pretty remarkable, and a hat tip to them for that commitment. So I highly recommend Athletic Greens as part of your daily routine. And right now, if you visit athleticgreens.com/ruscio, you can get a free one year supply of vitamin D and five free Athletic Greens or AG1 travel packs. Again, visit athleticgreens.com/ruscio to really cover your bases for a well-rounded immune support vis-a-vis AG1 and that one year supply of vitamin D.

MCAS Diagnostic Criteria

DrMR:

Coming back to mast cell, one of the challenges here is there seems to be non-uniformity in the diagnostic criteria and/or to achieve the diagnostic criteria it’s challenging in the sense that, at least according to my understanding, you can’t even do it at one lab. Is that still the state of the diagnostic array? Is it still that challenging to get to that full diagnosis?

DrLW:

Well, the answer is yes. The best lab is Heparin, which is positive in 80% of people and explains a lot of bruising that goes on, especially in women who wake up with a bruise and don’t how they got it. But unfortunately it requires a highly sensitive test so it’s only available in one lab in the U.S. and one lab in Germany. After that you’ve got prostaglandin D2 and histamine which has to be done on plasma. It has to be spun cold. So if it’s spun in a regular centrifuge that doesn’t have ice cold jackets or is actually a cold machine that spins blood, then you’re going to warm it up and destroy it. And then you have chromogranin A, which is serum which is stable and tryptase which is stable, yet the tryptase is not that common.

DrLW:

And then you have three urines, and the urine tests are done at different labs. You usually send it to Mayo Clinic and Mayo clinic will send one of them to a super reference lab, but in my experience those are only good in about 10 to 20% yield in terms of making a diagnosis. The prostaglandin and the histamine are in the 38% range of being positive.

DrLW:

And so when I looked, let’s say at this study that I just told you about, I had 80 patients in the past year and a half who had positive mediators, and the average was an abnormal in 1.4. So basically one to two abnormal mediators per person, and that was the reason they were allowed in. You know, up until 2016, there was no biomarker for irritable bowel syndrome, it was just three questions. You had the three answers, you had irritable bowel.

MCAS and Gut Health

DrMR:

This is true. And bringing the gut into this, just to shift gears for a moment, it’s interesting to me that gut work doesn’t seem to appear on the treatments for MCAS, whereas in my observation, given a bit different, you have a huge dampening effect of global immune reactivity when you improve the health of someone’s gut. Everything from joint, to skin, to brain fog, to fatigue, to pulmonary — all these things will improve when you zig or zag in the right direction or combinations of directions, such as probiotics anti-microbials, immunoglobulin therapy, fasting, whatever it is. What role do you see the gut playing in this MCAS picture?

DrLW:

It’s a major role because probably the greatest number of mast cells we have are in the gut. So you’ve got gut, skin, bladder, and then the nasal and oral mast cells. But it’s basically the gut. And as far as diet goes, it’s critical to go on a gluten-free, dairy protein-free, and yeast-free diet. And the yeast may factor into the microbial balance. In fact, you’re right. You’re a hundred percent right. Of course the low-histamine diet is a trigger that comes in. So those are four separate dietary factors that really make a big difference. And I tell patients to go on a total elimination diet for three weeks. They can supplement with things like pea protein, protein drinks, and so forth, or even elemental diets, but these can be difficult and expensive.

DrLW:

Dr. Afrin wrote an article with the gastroenterologist about six or seven years ago looking at the gut microbiota and mast cell activation. And so an imbalance or dysbiosis makes a big difference. Gut permeability makes a big difference, and you’ve discussed how to fix that, and I’m a big believer in that. And then there are two major types of bacteria, which reduce histamine output, bifidobacterium and lactobacillus. So the gut is essential and it really is important because it’s our interface for what we eat. And so what we eat can often trigger mast cell activation symptoms.

FODMAP Diets

DrMR:

Right, right. And to what degree are you finding FODMAP restriction is helpful? I’ve clearly seen that it seems to feed this same syndrome, or if it’s addressed in sensitive individuals, alleviates some of this syndrome.

DrLW:

I would agree with that. That’s actually in our paper “MCAS: A Primer for Gastroenterologists.” FODMAP was listed as one of the therapeutic diets that could be helpful.

DrMR:

Right, right. And there have been some other papers that we’ve discussed on the podcast in the past where, to your other point about permeability and leaky gut, those scores can be reduced following a low-FODMAP diet. And certainly I think a baseline elimination diet is probably the better place to start, because if someone’s coming in from standard American diet, we should start with basic elimination. And then FODMAP is maybe a level two consideration.

DrLW:

Yeah, and there was just an article on intestinal permeability improving on a FODMAP-free diet.

DrMR:

Yes. It sounds like a lot of this then, even though perhaps some of how we described this or framed this is a little bit different, we ended up coming into a similar tool set that we’re using to help these patients get back to the highest quality of life possible.

DrLW:

Right. So important.

Reducing Inflammation

DrMR:

Not to oversimplify this, but along those lines for those whom view MCAS as a bit of a foreign concept, as a simple, rough heuristic to help people wrap their heads around this, a lot of the MCAS comes back, said loosely, to inflammation. And if we can reduce someone’s inflammatory potential, we’re going to reduce this MCAS or this immune burden. As a loose description, Lenny, are we in agreement there?

DrLW:

Pretty much so, except that we have to understand that you’ve got a misbehaving, unregulated, aberrant, genetically-altered mast cell line which then activates other normal mast cells. And it also lives longer, is less apoptosis. So there’s inflammation, and mast cells are the orchestrators of healing, inflammation, and controlling the inflammation. But when the mast cell is genetically abnormal, which is all throughout Dr. Molderings’ literature that he’s written, then it’s hard to change your genes.

DrMR:

Sure. But I do think it’s also important to clarify for people that the genetics may put them in a position where they have to be more careful with diet, more attentive with their gut health, more attentive to their sleep, but I don’t think it means that there’s nothing that they can do about it. And I’m not saying that you’re intonating that, but I’m just anticipating the response I typically see in patients where they may think that it’s either a drug or nothing they can do about it. And sometimes the genetic underpinning is looked at in a disempowering way. At least the way I crudely and albeit simplistically look at this is that sure, genetics may put you further up or down the field in terms of advantages, but no matter what hand you have, we can get the best out of that given hand by working with the same set of tools.

DrLW:

I agree 100% with you. I’m not minimizing any endeavors to reduce stress, reduce inflammation, reduce your dysbiosis, or treat SIBO. And SIBO is actually three times a control population. There’s a study that’s published by me and others. I have patients who have come back a year later saying they’ve been doing yoga every day and without it they’d be dead. I mean, it’s literally changed their lives. So the DSNR Gupta method, et cetera, all these things are really important.

DrMR:

Right. And I know we’re on the same page there. Again, not intimating that you are suggesting that, but I know how some times people will hear one thing while listening to this podcast or reading the transcript and take away another. So just trying to keep us on the most empowering tone for people as possible. I just wanted to make sure to reiterate that.

DrMR:

At some point, Lenny, I do want to pivot over to some of the work that you’ve done with adhesions, but before we close the thread on MCAS COVID long-haul, and I’m sure this is something we could talk for another hour about, but anything that you think is particularly important for people to be aware of?

DrLW:

If you’ve had COVID and you’re sick afterwards, and the doctor says it’s all in your head, find another doctor. That’s one.

DrMR:

That seems fair.

DrMR:

Number two is to utilize all the tools that are available for mast cell disturbances, such as medication, yoga, hypnosis, self-hypnosis, and changing your microbiome if you can. It’s so hard to know what to do with dysbiosis and it may be part of it and we don’t know, but diet is critical, absolutely critical. There are so many times I’ve seen a patient come back in who has MCAS who says, “I cheated and I had some gluten. I was so sick. I got a terrible attack.” So that’s really pretty critical. And some patients say as they come in, “Those cherries looked really good. I had those,” and they’re sick. And then I looked on the list, and cherries are high in histamine. And that could go both for MCAS and it could go for DAO enzyme deficiency.

Algorithms for Diagnosis

DrMR:

Right. As we close out this topic, we were at the SIBO Symposium together in maybe 2018 or 2019. We were having this sidebar conversation about challenging cases and exotic or unusual diagnoses. After going back and forth, we both kind of concluded that you just have to go through with the same algorithm or therapeutic steps as you would with anyone else.

DrMR:

Now sure, there are some nuanced differences, but I think the main important thing that we agreed upon was just because someone has an unusual diagnosis or presentation doesn’t mean we throw out the entire therapeutic algorithm or hierarchy. We still want to work through those same steps and personalize to that individual just like everyone else, because we’ll oftentimes see improvements in those either chronic or unusual cases. And so it’s important not to, I guess, put the cart before the horse, so to speak. So I guess I wanted to echo that, but also see if that’s something that you still agree with.

DrLW:

I do. I think you’re right on and I think your natural approach can be so helpful.

DrMR:

Right. And again, just reiterating that for patients because like I have said a few times, I’m just becoming progressively sensitive to what patients are told before they walk into the doors of our clinic. I want people to know that even if you’ve been told you’re a chronic case or a complex case, that could just mean you’re one doctor away from finding the right support and you’re right about to no longer be a chronic case. And it may have just been there was some fumbling in your case. You get to the right support, and in two months you go from being a chronic case to being a normal individual. So just trying to continually resound this bell of hope for people.

Adhesion Therapy

DrMR:

Coming over now to some of the work that you’ve done on adhesions. You had published a paper in conjunction with Larry and Belinda Wurn. I’m curious to pick your brain a little bit on that. It’s a whole other topic, and not necessarily one we have enough time to do a robust narrative on, but were there any key insights as you started getting more involved in referring for adhesion therapy? Any key insights or take-homes that you feel are worth sharing with people?

DrLW:

Yeah. Number one, in med school and residency you’re taught that adhesions are symptomatic only when there’s an obstruction and that adhesions are not seen by X-rays or CT scans. Only when somebody presents with severe pain, blockage, nausea, vomiting, and they’ve had a history of surgeries do you think about adhesions. But what I’ve learned by going to this SIBO Symposium is how dramatic chronic adhesions and limitation of the motion of the small intestine can cause SIBO, chronic pain, and obstructions.

DrLW:

So I’ve expanded my view of adhesions dramatically by learning these measures from Mr. Wurn who’s presented at the conference. He’s a physiotherapist, a physical therapist who learned how to help women regain fertility when there have been adhesions and scar tissue around fallopian tubes. And then it opened up the tubes and that was documented by X-rays where they put contrast up into the uterus and then into the fallopian tubes and then opened it up, and then women were able to get pregnant. And then he applied it to the gut adhesions and found great improvement in his own wife and in patients. So he started getting more and more patients coming to him for treatment to break up adhesions, the cross-linking. You really can’t break up big bands, but you can get to the little cross-linking fibers that go in between the tubes or intestines, if you will.

DrLW:

So to that end, a study was published in 2018 where 103 subjects with recurrent adhesive SBO, small bowel obstruction, were treated with the manual physiotherapy or Clear Passage compared to controls who were untreated adhesion patients. And what we found was dramatic reduction of hospitalizations, obstructions, and surgery in these compared to the treated patients versus untreated patients. So remarked improvement in several different domains, including diet pain, gastrointestinal symptoms, quality of life, and pain severity with Clear Passage therapy compared to controls.

RuscioResources:

Hi everyone, this is Dr. Ruscio. In case you need help, I wanted to quickly make you aware of what resources are available to you. If you go to DrRuscio.com/resources, you will see a few links you can click through for more. Firstly, there is the clinic, which I’m immensely proud of the fact that we deliver cost-effective, simple, but highly-efficacious functional medicine. There’s also my book, Healthy Gut, Healthy You, which has been proven to allow those who’ve been unable to improve their health, even after seeing numerous doctors, to be able to help them finally feel better. There’s also our store where there’s a number of products like our Elemental Heal line, our Probiotic line, and other gut-supportive and health-supportive supplements. Health coaching. We now offer health coaching. So if you’ve read the book or listened to a podcast like this one, or are reading about a product and you need some help with how or when to use or how to integrate with diet, we now offer health coaching to help you along your way. And then finally, if you’re a clinician, there is our clinicians’ newsletter, the Future of Functional Medicine Review, which I’m very proud to say, we’ve now had doctors who’ve read that newsletter find challenging cases in their practices, apply what we teach in the newsletter, and be able to help these patients who are otherwise considered challenging cases. Everything for these resources can be accessed through DrRuscio.com/resources. Alrighty, back to the show.

Medical History and Adhesions

DrMR:

Have you identified either any helpful symptoms or historical findings that have a good correlation to indicating someone does have adhesions? I mean, there are some that have been suggested, some that are quite obvious, such as prior surgery or any kind of frank abdominal trauma. There’s also this constipation and/or having thinner stools, but I’m wondering, in your experience, are there any things that you see or hear where you’re going to add adhesions to your differential list as something to moderately consider in light of this?

DrLW:

Great question. Well, we can’t all do everything perfectly by ourselves, so I rely on the skills of this physical therapist that is in St. Louis that works with us who can feel the adhesions, who can look at body motility movement and say, “this person can’t bend to one side without having internal pain,” and so forth. And so, physical exam and a trained physical therapist can be really remarkable.

DrLW:

History is really important. So if you’re taking a patient, let’s say who’s never had a bowel obstruction, but has recurrent SIBO and their anti-vinculin test is negative, and they don’t have the antibody to support post-infectious IBS, then you have to start thinking if it could it be adhesions. They’ve had three operations. They’ve had hysterectomy, appendectomy, cholecystectomy. Could they be suffering from chronic adhesion?

DrLW:

I always count the number of causes for SIBO, and at this point of 42 different causes for SIBO, adhesions are one of them. Maybe the most common is the autoimmune antibody that slows down the migrating motor complex with the anti-vinculin antibody that’s the bargain marker, but certainly with the amount of surgeries that have gone on and hysterectomies, adhesion really is probably up there as the next most important cause of recurrent SIBO.

DrMR:

I’m assuming, but I don’t want to assume too much that you’re seeing a skewing toward constipated patients having adhesions?

DrLW:

Well, certainly you can see that. Honestly, the wrapping of the colon or tenting up of the colon by adhesions is rare, but I’ve seen it. I’ve heard from surgeons saying, “Oh my God, there’s a band that was tenting up the stigmoid into this oblique, sharp-angled structure,” and cut the adhesion and everything normalized and the patients got completely better. But that’s less, I think, than IBS-D or SIBO-D, if you will, because of obstruction by adhesions and then hydrogen gas buildup. That said, you see patients who have hydrogen and methane and they can have a variety of symptoms.

DrMR:

So is it your observation that you’re seeing more mixed or diarrheal that have adhesions, or is it not that able to be identified?

DrLW:

I’d say it’s more diarrhea because it’s more involving the small bowel. So it’s like whatever’s slowing down the small bowel, whether it’s bad migrating motor complex, severe motility disease, or adhesions, the most common organism that goes up on the breath test is the hydrogen-producing bacteria which primarily causes bloating and diarrhea.

Breath Testing

DrMR:

And I guess while we’re on this topic, to broach another area that maybe deserves its own podcast, but just to get a few of your high-level thoughts: hydrogen sulfide. Have you been using the trio-smart test and do you have anything interesting there to share?

DrLW:

Yeah, I have. And because I’ve always been guessing that a flatline test meant hydrogen sulfide and/or asking patients if they’d had a rotten egg smell to their gas is positive evidence for it, the answer is neither one is strongly positive. Yes, you can definitely have a rotten egg smell to the gas or breath and then can confirm it with a trio-smart.

DrLW:

I like the trio-smart for things when I’m thinking about hydrogen sulfide or there’s significant constipation and let’s say a prior breath test did not show high levels of methane. It apparently is more associated with constipation than diarrhea. The other things that I think about are bad odor in the urine or interstitial cystitis being associated with hydrogen sulfide.

DrMR:

And in terms of how you’re treating this, are you doing antibiotic plus bismuth or is there some new exotic therapy that you’ll be releasing a proprietary mixture with your picture on the bottle soon?

DrLW:

I don’t think so. Especially with stinky gas, no, I don’t want that taste associated with that. No. What I’ve learned from Allison Siebecker is the high-dose oregano. And what I’ve learned from Dr. Jacobi is combination of bismuth and another herb. And what I’ve learned from Dr. Pimintel is using Rifaximin plus a bismuth agent.

DrMR:

Okay. Yeah so it sounds like keeping with the observations that have been offered up thus far, which is great. So we have pharmaceutical and natural options, and bismuth seems to be a commonality there. Okay.

Episode Wrap-Up

DrMR:

Well, Lenny, I feel like we’ve gotten our money’s worth with you today. We’ve zigged and zagged all over the map. Do you want to tell people where you hang out online and/or if they wanted to find out more about you or your office where they could go?

DrLW:

Sure. Well, currently I’m just doing patient care for people who live in Missouri because that’s where my license is. But there’s a lot of educational information on GIdoctor.net. Under “Physician Services,” a number of the articles and PowerPoints that I’ve given for lectures are listed there. And if you are in Missouri, you can look me up.

DrMR:

Great, great. And anything new and exciting on the agenda for you? I mean, seems like you just got done with some pretty intensive data mining there, but anything else coming down the pike?

DrLW:

Let’s see. Well, we’re doing a paper on mold with mycotoxin-induced GI motility disturbances. So that’s going to final. And then I have way too many lectures to get ready for a number of conferences, remote, and maybe theoretically, in person in November. So that’s what’s going on. A lot of PowerPoints to develop.

DrMR:

Awesome. Well, thank you for letting me pick your brain. I always I appreciate our back-and-forths, and also just your commitment to research. So again, pleasure having you and thanks for taking the time.

DrLW:

Thank you so much, Michael.

Outro:

Thank you for listening to Dr. Ruscio Radio today. Check us out on iTunes and leave a review. Visit DrRuscio.com to ask a question for an upcoming podcast, post comments for today’s show, and sign up to receive weekly updates.

 


Sponsored Resources

Hey everyone. I’d like to thank Athletic Greens for making this podcast possible. And if you’re like me, you may sometimes struggle with getting in enough nutrient dense foods. One thing that I’ve really appreciated about Athletic Greens’  AG1 is not only are they the best tasting one that I’ve had to date. They also help ensure that I’m getting adequate nutrition and really hitting the mark regarding nutrient density. And I’ve been using them every morning, pretty much every morning, as part of my morning shake. 

How to Improve Long-Haul COVID Symptoms - auto

Now, one scoop of AG1 contains 75 vitamins minerals and whole foods sourced ingredients, including a multivitamin, a multimineral, a probiotic, and a green super food blend all in one serving. 

The other thing I really like about the company is Athletic Greens continues to improve this one holistic formula based upon the latest research. And they’ve produced 53 improvements in their formula over the past decade, which is pretty remarkable and a hat tip to them for that commitment. So I highly recommend Athletic Greens as part of your daily routine. And right now, if you visit athleticgreens.com/Ruscio, you can get a free one year supply of vitamin D and five free Athletic Greens or AG1 travel packs. Again, visit athleticgreens.com/Ruscio to really cover your bases for a well-rounded immune support vis-à-vis AG1, and that one year supply of vitamin D.


Need help or would like to learn more?
View Dr. Ruscio’s additional resources

Get Help

Discussion

I care about answering your questions and sharing my knowledge with you. Leave a comment or connect with me on social media asking any health question you may have and I just might incorporate it into our next listener questions podcast episode just for you!

Leave a Reply

Your email address will not be published. Required fields are marked *