Jill Brook: [00:00:00] Hello fellow Mast Cell patients and wonderful people who care about Mast Cell patients. I'm Jill and episode of Mast Cell Matters, Deep Dives on MCAS with our wonderful guest host, Dr. Tania Dempsey, world renowned expert on MCAS and chronic illness and immune dysfunction, and so much more. Physician, researcher and educator to other physicians.

Dr. Dempsey, thank you so much for being here today and which of your fascinating colleagues did you bring with you today?

Dr. Tania Dempsey: Well, I have, I'm really thrilled to have, uh, my good friend and colleague, Dr. Alexis Cutchins, um, who is an assistant professor of medicine in, in the division of cardiology at Emory. I. She works out of Emory Midtown and Emory St. Joseph's, and is a consultant to the Women's Heart Center. Dr.

Cutchins graduated from Hamilton College in 1998, then Emory School of Medicine in 2004. She did her residency in internal [00:01:00] medicine at Weill Cornell in New York City, and then moved on to an NIH Research fellowship at the University of Virginia for cardiology. She joined the Emory faculty in 2012 specializing in cardiovascular disease in women.

Over the past 11 years, she has developed an expertise in the area of Postural Orthostatic Tachycardia Syndrome, Dysautonomia and Long COVID and more. Dr. Cutchins is currently the medical director of Emory University Hospital, Midtown Echo Lab. Thank you for coming.

Dr. Alexis Cutchins: Thanks for having me. I'm so excited to be here. It's always a pleasure.

Dr. Tania Dempsey: Well, I, I, I love, I love picking your brain and, um, I love, we're gonna have a great conversation today. What I'd love to start with, you know, for our audience, is really just to understand how you came to be aware of MCAS. What was your journey to the MCAS world?

Dr. Alexis Cutchins: Yeah, that's a great question. So as, [00:02:00] as my journey often is, it came because of patient, like experience with my patients, essentially. I didn't know what Mast Cell Activation Syndrome was until a patient of mine came in to see me one day and said I was diagnosed with Mast Cell Activation Syndrome and I was started on medication for it,

and now I don't need any of the medicines that you've been giving me for my POTS. And I was like, whoa, what is this in incredible cure for POTS? Like, that's amazing. And so, she was really happy with that and she was happy to tell me all about it. And so I started looking into Mast Cell Activation Syndrome as I do.

And learning about it. And, and this was kind of around the time when COVID hit and I was seeing patients with Long COVID and many of them had POTS, but they also had a lot of Mast Cell symptoms. And I started asking more and more questions about reactivity and allergy and rashes and, and things like that.

And they all sort of said, yes, yes, yes. [00:03:00] And that's when I really started realizing this relationship and that it was important for me to ask these questions for these patients, and then work on trying to treat them. And of course, it's taken me some time to get where I am in terms of my comfort with treating patients with Mast Cell Activation Syndrome,

but I feel pretty confident at this point after, you know, the guidance from many experts, just like Dr. Dempsey.

Dr. Tania Dempsey: Thank you. Thank you. So, what do you see as the relationship between MCAS, POTS and some of the other conditions that you treat? And as a cardiologist in general, some of the other cardiac, uh, manifestations that, that you take care of?

Dr. Alexis Cutchins: Yeah, so you know what? The way I think about MCAS and POTS is that in the extreme form, MCAS causes anaphylaxis, right? And we all have patients who are very easily triggered. They go outside and they get anaphylaxis or you know, they have, there's certain foods that trigger anaphylaxis and and that [00:04:00] causes shock, which is a high heart rate and a low blood pressure.

And, you know, patients can really pass out and, and have, you know, need epinephrine and all these things to reverse this reaction. And so that's sort of the extreme of MCAS. But you can imagine that when the Mast Cells are triggered more mildly or they're not quite, it's not quite as elaborate, you can get this sort of autonomic response of high heart rate, low blood pressure.

I do also see a lot of high blood pressure in these patients, and they have this sort of hyper adrenergic state, which I think all stems from the Mast Cell degranulation, in my opinion. And so that's in my, that's what, how I sort of correlate POTS and MCAS. And when I treat MCAS, a lot of that stuff quiets down, which is very helpful.

Now, there are other things that drive high heart rates in my patients, but this is just one of them. And, and so by targeting multiple things, you know, I, I can have more success treating their dizziness, their shortness of breath, their chest pain. I would say the [00:05:00] other main symptom that I treat for, you know, through Mast Cell targeted therapies is chest pain.

And I have a lot of patients who are diagnosed with endothelial dysfunction and coronary vasospasm, and inevitably when I ask them about their symptoms prior to these episodes of chest pain or you know, the chest pressure that they feel, it's, it's as if they're having a heart attack. They have this really tightness in their chest.

There's usually some trigger. It can be stress, it can be, um, it can be exposure to some environmental trigger. Like I have one patient who whenever she gardens and if she touches poison ivy, she gets a horrible horrible reaction in her chest. So, and I've found that treating patients with Mast Cell targeted therapies helps calm down the, the response, the chest pain response in those patients.

So there's something going on between the Mast Cells and the coronary arteries that's causing some [00:06:00] irritation and potentially vasospasm or, or tightening of the arteries causing chest pain. So I think those are the, the two things that I really focus on when I'm looking at Mast Cell treatment in my population of patients.

Dr. Tania Dempsey: Yep. I think that's important, and I'll tell a little story because after I learned about MCAS and I learned about chest pain related to MCAS, sometimes Kounis Syndrome or vasospasms, right? I realized that I think my grandmother had this. And I, and I carry this guilt to this day about uh, how we managed her.

I was a resident at NYU and for the first time she had, you know, like chest pain. She had, she carried this diagnosis of angina for years, right. And, you know, she had various things she would pop and, and then, you know, as a resident I was like, I don't know, this doesn't sound normal.

And then she had that like, big episode of chest pain, felt like a heart attack, but it wasn't a heart attack. And [00:07:00] they took her to the cath lab and, and she actually got taken to the cath lab twice. Over the course of, you know, several years and every time they took her in, they would say it's really just vasospasm.

She, like, her arteries are clear. She was like 85, 90 at the time, you know, and um, and I kept thinking at that time like, how can you have clear arteries that have vasos? Like what is this thing?

Dr. Alexis Cutchins: Yeah, like legitimate EKG changes, like all the things that you would see in a heart attack. Yeah.

Dr. Tania Dempsey: Yeah. And I feel so guilty that I didn't know. I could have put her on an antihistamine. She probably had MCAS. Like, I have no doubt now looking back at her history, you know. But it's so crazy, right. So that's really important, a really important point.

Dr. Alexis Cutchins: I mean, we learn a lot from experience and from keeping our minds open, right?

Dr. Tania Dempsey: We Sure do. We sure do. So, so let's also talk about, one of the areas that I know that you have really become very passionate about is pelvic venous disease. And venous [00:08:00] compression syndromes or, or pelvic compression, there are different names.

So how did, how did you come to really become really interested in it and I started identifying so many patients with it. Tell me, tell me a little bit about that.

Dr. Alexis Cutchins: I think I started by looking at lower extremity venous disease. You know, my patients with POTS really benefited from compression. It worked really well and you know, that was great until sometimes it stopped working well. And at that point I started looking for other things like why did the compression stop working?

And I screened some patients for lower extremity venous insufficiency, and found that they had very incompetent venous valves in the veins of the legs, and that they were pooling a lot of blood in their lower extremities. And so, I started, once I found it, um, I had one patient where we treated it and she did extraordinarily well.

And so I started looking for it more and more, asking more questions about leg pain and leg heaviness and leg swelling. And, you know, everyone [00:09:00] was like, yes, yes, yes. But these aren't normal questions that we ask POTS patients, at least back when I was learning all about this. And so, um, so I was looking for it, looking for it, looking for it.

We were finding it in everyone. We were doing this procedure to ablate the lower extremity vein to try to relieve that pooling. And it was working in many patients, but not in everyone. And I didn't know why it wasn't working in everyone. And so, you know, then I started learning about pelvic venous disease, and this was through conversations with other people.

I was telling them what I was seeing. They were like, oh, have you looked at this? And I didn't know what it was. So I started looking for left iliac vein compression for varices in the pelvis, for renal vein compression. And sure enough, all of my patients had that too. And so, and I think probably many of the patients that I treated and felt better also had that.

It's just that I didn't know about it yet. And so I started looking for these things. I started talking to experts in the, in the field. I started asking more questions. You [00:10:00] know, they were very interested in talking to me about their patients 'cause many of them had a diagnosis of POTS or had a diagnosis of Mast Cell Activation Syndrome.

But they were coming to see these experts for pelvic pain, not for those things. And I was not, I was, patients are coming to see me for POTS, but I would ask 'em about pelvic pain and they'd all have pelvic pain. And so, there's a lot of overlap, you know, between, there was, there very much was a lot of overlap between the patient populations that we're seeing and I think what, you know,

what we're not good at as doctors is this kind of siloed form of medicine where everyone sort of stays in their lane and does their thing. And you know, there's some people out there that try to bridge that and and look for the connections. And I think that's what we all need to be doing. And so that's sort of how this evolved.

And then, you know, now that I've been looking for it, I mean, we document about 80% of our patients have pelvic venous disease or compression of that left iliac vein, and [00:11:00] 80% of our patients have venous insufficiency or floppy valves in the veins of the legs. So it's, it's definitely prevalent. I think it has to do with the underlying connective tissue disorder that's probably in all of these patients.

And the way that the extracellular matrix is working, the way that collagen fibers are lining up, whether or not the collagen is abnormal, you know, there are a lot of different factors that are at play, but it causes their veins to be stretchier, more compressible, more compliant, dilated, et cetera. And I think that contributes a lot to, to their symptoms.

Dr. Tania Dempsey: Do you think that addressing the MCAS sooner in these patients could potentially help prevent the progression of this?

Dr. Alexis Cutchins: Yeah, I don't know. I think there's a lot we don't know, right? Is, is the Mast Cell degranulation causing connective tissue problems and laxity in the joints and laxity in the veins, or are these patients predisposed to this [00:12:00] joint laxity and venous, you know, laxity to begin with, and is that triggering something that's going on in the Mast Cells?

Because, you know, the Mast Cells line the veins and the nerves and so they're very intimately connected with, you know, with blood vessels and with the nervous system. And so everything is intertwined. And I just have patients that tell me, you know, oftentimes they come with their parents and the parents are like, she's been passing out since she was two.

And I'm like, gosh, that's a really long time. Like most of my patients start developing symptoms at puberty. But there are some patients that really started developing like in infancy or at, at a very young age. And you know, so then that begs the question like, why, why are those children having these symptoms? And is it because they're born with hypermobility and connective tissue disorders?

Is it because they're born with some sort of infectious process that's causing laxity in these tissues? Is it because their Mast Cells have been [00:13:00] triggered from the, from day one and they've developed these things? I don't know. I think there's so much, so much to learn and so much that we need to investigate in this area.

But, so I can't say, but I do know that treating the MCAS helps. I also know that treating the pelvic venous disease helps the MCAS. I've definitely seen that happen. So people are less reactive when they have the, when the pelvic venous congestion goes away.

Dr. Tania Dempsey: So one of the, the concerns that some people have, and I certainly have patients who are really concerned about this, is putting a foreign object, right, a stent into the body of somebody who already is reactive. So what's your experience with this? What do you think people should know about?

Dr. Alexis Cutchins: I mean, it's a really, really good question and appropriate topic, right? Um, so many of these patients have metal intolerances, metal sensitivities. The stents are made predominantly, you know, they usually don't have nickel in them, which is [00:14:00] usually the most triggering, uh, metal. But, you know, they do have minor, you know, components of it.

I do have interventional radiologists who will patch test with the stent to see if there's any, at least skin reactivity to get an idea if, you know, if that matters. We don't know if you have a skin reaction or you're gonna have the same reaction in a inside the blood vessel. It's just, it's not the same surface, it's not the same type of response, so it's not the same cells.

But just in general, what I've found is, and some of these patients get patch tested and, and an interventional radiologist or the vascular surgeons decide to use a different stent because of that. Okay. So, but not everyone does. And in my experience, you know, working with patients who have been stented, uh,

what I find is there's, there's not a long-term reaction to the stent. There is a, in some patients, a flare in symptoms that [00:15:00] occurs when they get stented. So they get this sort of immediate Mast Cell sort of inflammatory response. And I don't know if that's from opening the blockage that's there, um, and allowing this sort of like inflammatory cascade to occur or if it's

because of reactivity to the stent itself. I think it's more of a blockage opening problem. Um, we usually treat that with steroids and we ramp up the Mast Cell targeted therapies and that resolves over the course of a couple of weeks. And it's not in everyone, right? But it does happen. I have one patient who had surgery on her

venous system because it was not on the right side. And so there were a lot of issues with that. And the surgeon went in and, and we were very adamant not to use a graft, but he had to use a graft. And actually he, she came out of the OR and immediately was reactive and so he brought her back in and switched the graft to a different

material. And then, you know, she still had a lot of [00:16:00] Mast Cell flaring after that surgery. The question is, is it the stress of the surgery or is she reacting to the graft, right? And you know that you can have this post-surgical stress response that can last months. It's not necessarily because there's something new and foreign in the, in the person.

Right. So, she's actually doing better, I will say, but but it's hard, it's a, it's a great question. I think after a certain amount of time, six to 12 months, that stent endothelializes. So basically it gets covered with the with the same cells that are lining the venous system to begin with, and I think it becomes pretty inert.

Like I don't think that it's really reactive anymore at that point. We also know that we've been putting in coronary stents forever, right. And those patients come in, they're having a heart attack, they, it's emergency, they get a stent put in there, boom. Right? No one's asking you if you have a metal allergy.

Okay. I know because I've been in the cath lab [00:17:00] with these, with these patients who are having heart attacks, right? And so those patients, I think in my career, I've seen one that I suspect may be reacting to the stent that was placed. Um. That's, you know, thousands of patients. And so, and I don't even know if, if she is reacting to it or not.

And so, there's definitely risk, there's no question. And, but in my opinion, and from what my experience, I haven't seen a lot of reactions to the stents other than that initial sort of Mast Cell flare.

Jill Brook: I was wondering if you could say a little bit more about the last question that you see MCAS improve when people get a stent and improve the venous constriction. Like how much do they improve? How quickly, and why do you, why do you think they're improving?

Dr. Alexis Cutchins: So the MCAS doesn't resolve. Like it's not a cure for MCAS, fixing the pelvic venous congestion. Um, but patients have told me, you know, [00:18:00] like after the stenting happened, you know, within the first month or so, I recognized that I wasn't reacting to things the way I had been reacting to them before. And I think patients very well much know, you know, if they're really reactive or not.

And so it's anecdotal completely. But I do think that the Mast Cells are sort of flared in the pelvis from the congestion that occurs from all the edema and the swelling and the fluid buildup in the pelvis. It's triggering some response there, and that's sending some systemic signal from the Mast Cells that are local.

I don't know. But it's, it does seem that if you, if you eliminate all that and if you calm the pelvis down so you're no longer in pain and you're no longer, which could be also a trigger by the way, if you're no longer experiencing all this discomfort in your pelvis, if it's not congested and edematous, those Mast Cells sort of chill out, I think.

Jill Brook: And I heard an interview with Dr. Jordan Vaughn, and he had credited [00:19:00] you with, um, teaching him about some of this stuff, but he had an analogy that was a little bit gross. But he said that if your circulation is kind of trapped in your lower body and not getting up, he said it's like if your house had its sewage not able to leave

and it kind of backs up.

And no matter how much you might clean your house, it's gonna be pretty gross and dirty if the sewage is not able to leave.

Dr. Alexis Cutchins: There's a lot of inflammation. There's a lot of micro clots, you know, and yeah, he said he has used that analogy with me before. We've talked about that. I think, I think he's right. I mean, I think.

Veins are there for a reason. So is, so are the lymphatics, by the way. And the lymphatics play an important role in removing inflammation and, and, you know, keeping the septic system clean, so to speak.

And if those aren't working properly either, then you know, we have inflammatory reactions also. And, and I think it's also a major problem in this population of patients. And so it's not just the [00:20:00] veins. Like sometimes you really have to fix, you have to work on the lymph system as well, and that's not as easy to fix.

Dr. Tania Dempsey: How do you, right, and how do you do that?

Dr. Alexis Cutchins: So, you know, I have patients who, who do well post stenting, but then sort of symptoms creep back in and they're like, I, you know, I was feeling so great. Why am I feeling badly again now? And I think in part it has to do with their lymphatic drainage and that it's not occurring, it's not working properly.

And so, you know, thanks to people like Kelly Barnes who's taught me a lot about counter strain and other techniques that you can use to sort of clear the lymph system. I've had patients who have gone through those sort of techniques with people locally here in Atlanta, and and they feel better.

Their fatigue improves. Their pain improves. And so, I, I think it's a multifaceted problem and you have to have a multifaceted approach.

Dr. Tania Dempsey: Can you share with, uh, our audience what symptoms [00:21:00] I, I know you mentioned pain and sort of pelvic pain and things like that, but can you talk about the array of symptoms you might see with pelvic congestion syndrome? Because I know there are very, there are a lot actually, more than just confined to that area.

Dr. Alexis Cutchins: So, so what we see is, um, obviously pelvic pain patients have very, very painful menstrual periods and heavy menstrual periods. There's pelvic pain outside of the menstrual cycle, so this heaviness and discomfort in their pelvis and in their groin area, not during their periods.

There's pain with intercourse, or any kind of insertion into the vagina that is that can be very painful and they've usually kind of experienced that their whole life. And then outside of the pelvis, well there's the bladder and so there's sort of interstitial cystitis symptoms, which can also be Mast Cell

mediated and certainly you know, Mast Cell therapies can help with interstitial cystitis, but sometimes they don't. And we have patients whose interstitial cystitis [00:22:00] symptoms improve after fixing the pelvic venous disease. And then you can have varicose veins of the vagina, the vulva, the upper thighs, um,

you can have leg pain, like heaviness, like weakness. I have patients that have told me after they've had their pelvic venous disease fixed that they just thought their legs weren't capable of getting stronger or they just felt like their legs were chronically weak. That was just who they were. Like that was how their body was built.

And then they had their, their iliac vein stented, and all of a sudden they feel like their legs work properly and they can go exercise and they can do things and they can strengthen their legs and it's no problem. So, the leg symptoms are very real. And then back pain. So patients who have typically low back pain, that gets worse over the course of the day, better when they lie flat.

So that's just a function of pooling blood and pooling and congestion of fluid in the pelvis that irritates the, that sacro iliac plexus of [00:23:00] nerves that can cause back pain symptoms. Usually, patients describe, you know, the sensation that it just, it happens all the every day, but it's just worse and worse and worse throughout the day.

And then if you have renal vein compression, you can get left flank pain, which is a little bit different and you can get blood in your urine. And renal vein compression is kind of a whole nother beast. You know, it's not as common, but it does exist in this population of patients too.

Dr. Tania Dempsey: And then, you know, I've seen, um, headaches, certainly, certainly POTS right, is associated. So all these other symptoms that may not be thought of as, you know, related.

Dr. Alexis Cutchins: Yeah. So, um, you know, if you talk to the interventional radiologists who see a lot of these patients and take care of them, they will anecdotally tell you, you know, I've like cured headaches by stenting the pelvic veins and I've, you know, cured you know, uh, chronic fatigue and brain fog and I think that there's some validity there.

I think, I personally [00:24:00] believe that because of the congestion in the pelvis, the spinal column's not drained properly. The the veins are not allowing for cerebral spinal fluid to drain in the correct way. And so you can get some increased intracranial pressure, which can cause shifts, you know, there.

Then you're talking about the whole spiky, leaky stuff and the CSF leaks and the headaches and you know, positional headaches and all these things. I think they can be related to volume, the volume status in the CSF. And so that could be connected. And I definitely have had patients who tell me their headaches improve after pelvic venous disease treatment. However,

that's rare, in my opinion. I have many patients who have extensive amounts of, you know, migraine and, and tension headaches and, and chronic pain, other headaches, you know, all kinds of headaches. And so they're very, there's very, they're all kinds of different types. I think there probably is a specific type that's related to

pelvic venous disease, but I don't know if they [00:25:00] all are, right.

Um, I do think, I mean, in my personal experience, I see orthostatic intolerance improve. It improves in about 70% of patients. In our research, they've told us they feel better from an orthostatic intolerance, you know, perspective by surveys. 40% of the patients that we've treated feel like their orthostatic intolerance resolves.

So they score much lower on that, on that survey. So you know, what I tell patients is when there's a blockage of blood flow back to the heart, there's less blood going back to the right side of the heart. There's less blood pumping out of the heart. You have decreased cardiac output, you have decreased blood flow to the brain, and you get tachycardic and you have all these symptoms.

Right? And it's same, same concept just for venous pooling in general, right? Which we've been talking about in POTS forever. And the neurologist would say that's a, that's a function of the autonomic nervous system not working properly, and I don't disagree with that, but I do think that there's [00:26:00] structurally something wrong with the veins and the lymphatics that causes the pooling.

And so if you can fix that, then you have less pooling and you have more blood return to the brain. So most patients respond in a way that says, you know, my fatigue is much better. I can exercise more. I feel like I can get through the day now. Those are the kinds of, that's the kind of feedback I get when patients see me after after fixing this.

And so I, I don't know, but it seems like that's real and that's related. Obviously we need more research, randomized controlled trials.

Dr. Tania Dempsey: Hundred percent, lots of that. Um, is there anything else that people are looking at for treatment other than stenting? Is there anything else out there?

Dr. Alexis Cutchins: Yeah, so there's so there's some ultrasound therapy, sort of like shockwave therapy that some people are doing. I know Dr. Vaughn has this in his office and he's been working with the vendors to try to come up with the protocol for that. And, um, I do think [00:27:00] some patients respond well to that.

And can, you can sort of open up that scar tissue in the vein and get a little bit more return. I don't think it, I mean, I don't, it doesn't work for everyone, you know, but it's, it's certainly a, a something to try if you're not interested in getting a stent. I do think that the fascial counter strain is an option, um, in, in the correct hands.

I think there's some people that can manipulate the vein and the fascia in a way to open it up. I don't think there are a lot of people in this country that are experienced enough with it that really know how to do that, but I think there are a handful. Um, the, you know, then there's, you know, anticoagulation.

How much does that play? How much does that help? I think it does something, but it's, it doesn't fix this. The, unfortunately, the problem is that when the vein is pressed down, um, by that right iliac artery and it's compressed, it gets, there's all the scar tissue forms in it, and over time it gets worse and worse and worse.

And when you get hit with COVID, it gets even more inflamed [00:28:00] and even more scarred down. And so once it's down, like, there's collaterals that form, but those collaterals don't have valves. So there's all this dependent fluid from the collaterals, right? So the more collaterals you have, the more pooling you get in your pelvis.

So, you know, in some ways I think it really does need to be opened up, personally. But you know, that's coming from a cardiologist who likes to fix things and like, you know, find the answers and you know, do that. So it's, you know, it's hard to say.

Jill Brook: So I think you both some months or maybe now even years back, had been talking about a supplement that was not yet really known,

but you were kind of trying it out to see if it helped people with their endothelial health. Did that ever go anywhere?

Dr. Alexis Cutchins: Well, I can tell you my experience and then Tania can tell you her

experience. Diosmin. I've, I've used it. I recommended it frequently for a long time. And much [00:29:00] like all therapies in this population of patients, I would say in a hundred patients, I might have three who told me that it was like life changing for them and all of a sudden they, you know, they had venous return and they felt better and their energy level went up and their legs stopped getting tired.

You know, all this like, it was like a miracle in like three out of a hundred patients, so. This, but this is like standard for me, right? Like every time I try something, I feel like it works, you know, in just a small population and it, you just, it's a lot of trial and error. So I don't I don't discount it.

I think it works, but it works in the person who it works for and not for all patients. And I don't think it's placebo. I think it truly does work in, in some patients, but not all patients. And I think it's pretty harmless, so it's worth trying.

Jill Brook: How long would

somebody need to try it do you think?

Dr. Alexis Cutchins: Like a month.

Dr. Tania Dempsey: At least a month or two, I would say. And the dosing has to be right, right. What [00:30:00] I found is that it does have to be much higher than a lot of like the bottles say on it. Um, the research is done, so it's a higher dose. Um, what I find is that even if it's not helping, the, let's say the pelvic congestion symptoms or POTS symptoms or whatever, it does seem to help a lot more patients when it comes to their venous access.

So if I have patients who are particularly difficult sticks when we're trying to get blood or IVs. I'll put them on this for a month and then, or usually longer, but then you'll give it a month, and then they come in, and then the other trick we, we use, so we use that, then we put them in the red light bed to open up everything.

And then we, we get, and these are people who have like we're, we're taking blood from their feet. We can't find any other access, and all of a sudden now we can find an antecubital, like in their, in their arm because, because everything's sort of opened up. And I've had patients who have tried this Diosmin product [00:31:00] and then have stopped, um, because, you know, there's so many things that I'm treating them with, right?

So it just starts to become less important. Um, and then they forget about it, they come in for blood work again, they, we can't get the blood. They go, oh yeah, I forgot, you know, stopped this supplement. So I have patients who absolutely notice a difference in that regard, if not for the other symptoms. So I still think there's utility.

Dr. Alexis Cutchins: Yeah, I wish, oh God, it's so, it's so hard because with every single supplement, with every single medication, with every single treatment, it's like one person thinks it's a miracle and the next one has no, no effect whatsoever. And wouldn't it be nice to have some way to sort of test these, test these things out like

systematically or have, you know, have some type, sort of engineered device that we could sort of screen patients like, okay, we're gonna look at your DNA and figure out which of these therapies is gonna work for you. I mean, I think there's so much that we need [00:32:00] to learn, and right now we're just trying to throw whatever we can at these patients to help them feel better in a, in an intelligent way.

So that, you know, and then sometimes it doesn't work and sometimes it does. And I tell patients that all the time. It's just, unfortunately, a lot of trial and error. We don't have enough research to predict what's gonna work.

Dr. Tania Dempsey: So things that are, you know, kind of, uh, low risk, right? I mean, if you think about it right, it might be worth trying with the absence of, you know, other things that, you know, or more aggressive things.

Dr. Alexis Cutchins: Yeah, I that, I mean, I think it's absolutely true. The other one is Horse Chestnut extract. That's another supplement that's used in relation to the veins that has some data in clinical trials and seems to help in the same way that Diosmin does.

Dr. Tania Dempsey: And there's a seaweed also that has been studied or a couple of different seaweeds for the endothelial.

Dr. Alexis Cutchins: Mm-hmm. The

Glycocalyx. Yeah. Yeah. And, and that's, you know, a [00:33:00] whole nother area that needs to be explored. Like, how do we really heal that endothelium and how do we repair the the endothelial, you know, dysfunction or um, or trauma that's occurred in these patients. And, you know, the other, the other drug that's, you know, only available in Europe, Sulodexide, seems to be very good at that, but you know, we don't have that in the US. And then as I was, I was telling Jill this right before we started actually, EECP or Enhanced External Counterpulsation is a technique that has been shown to help with endothelial dysfunction.

And so, you know, that's another potential thing to try, I would say to help revive the endothelium and help with venous return and help with you know, help improve cardiac output.

Dr. Tania Dempsey: And then with my lens, I'll add that I see a lot of endothelial dysfunction in patients who have had infections, certainly COVID, which you mentioned, right? That seemed to be a big trigger for a lot of [00:34:00] people. I'd love to talk a little more about that. But you know, it turns out that, um, Babesia and Bartonella, Bartonella even more so, has a direct impact on the endothelium.

They both invade the red blood cells. And they both then also sort of go through the endothelium and, um, at Bartonella more, more so, and cause this sort of inflammatory reaction, which probably the Mast Cells are involved in. I'm sure they're like, again, multiple layers here. And Babesia is known to induce

like a, like a micro clotting, particularly the level of the capillaries. It's small, really small blood vessels. So, you know, I do wonder about the role of these infections, particularly post COVID, where I think a lot of these infections were reactivated for, for some people. So whether it's the COVID itself or whether it's other infections, I think that's an important point to make that I think that the Mast Cells are also being triggered by other, other [00:35:00] things.

Dr. Alexis Cutchins: Yeah, and I think, I mean, when you think about, you know, going back all the way back to med school and you're learning about blood vessels and how they work, you know, the blood vessels have to be supplied with blood as well. And so there's the vasa vasorum, which is these teeny tiny little capillary blood vessels that surround the normal

blood vessels that actually like carry blood around the body. And when those have infectious inflammatory micro clotting, you know, then we get dysfunction in the blood vessel itself. The arteries stiffen, the, the veins stop working properly. You know, there's all kinds, there's a whole another cascade of events that can occur there.

So yeah, it's complicated, unfortunately. And the infectious side of all of this is very real and a whole nother layer that baffles me daily. I'm trying to get better at it, but

it's such a challenge and, and part of me always seems to go back to thinking, you know, why [00:36:00] do these patients get chronic, complex, chronic infectious sort of syndromes and others don't, and is it a chicken and the egg kind of thing?

I don't know. But, you know, not everyone has reactivation of infections. Not everyone has chronic Lyme. Not everyone has Long COVID. So, I think that there's something about this population of patients that predisposes them to that as well, and treating those helps with the inflammatory process and all of the things that, all of the things that are affected by that inflammatory process.

So.

Dr. Tania Dempsey: So this is gonna be a big top, a big focus of our, of our next ILADS annual conference in October in San Antonio. For those practitioners listening, I would highly recommend going to our ILADS conference, uh, which is practitioner only. And of course, uh, Dr. Cutchins spoke at our last one last year on pelvic venous congestion.

But this year we're talking about the terrain, the, the host. Like what is it about the host [00:37:00] that is predisposing people

to having chronic infections?

Dr. Alexis Cutchins: I can't wait. I really enjoyed that conference and I, you know, I'd love to go again and I, it really opened, you know, as far as being a physician is concerned, the, I learn the most at conferences where it's completely out of my, you know, subspecialty, right? Like, I think everyone should be required,

it should be part of our CME that, not for me to go to the ACC meeting every year, but for me to go to, you know, a GI conference and uh, and an infectious disease conference and, you know, all of these other areas, 'cause we all need to look for that overlap in our patient population. And I think it, it's just very valuable.

I think it's really important and I don't know how to impart that on the next generation of doctors, but I do think it's, it's really useful.

Dr. Tania Dempsey: And well, that's what makes you stand out. I think that's that a lot of us in this community are hungry for more knowledge for learning to help our [00:38:00] patients, right? Because as we said, each patient is different. You know, we, we may think that we came across the cure with one patient, right? And that doesn't work at all for the next patient, right?

Dr. Alexis Cutchins: It's very frustrating.

Dr. Tania Dempsey: But you need bigger toolboxes. You need, and so you need to keep learning. And so how do we, you know, how do we impart that on our next, on the next generation? How do we teach, how do you handle this, 'cause you're, you're in academia, right? So how do you handle this with your med students, your residents, your fellows, your other

attendings.

Dr. Alexis Cutchins: Yeah. It's, it's a really good question. I love, so the way that our inpatient service works is that I am, I work directly with interns. We don't have residents on our team. We have interns, and then we have a fellow. And it just happens to be the way that the cardiology service at the hospital that I work at is run.

It's not like that at all the other Emory locations, but it's ours. The interns are great because they're totally like eager for knowledge. They are ready to go, like they wanna learn, [00:39:00] they want to absorb information, they wanna learn everything they can on that rotation, like they are really eager. And so I spend a lot of time trying to obviously educate about general cardiology, but really bring up the nuances in these patients that may relate to

Mast Cell Activation Syndrome or chronic venous disease or POTS or orthostatic intolerance because I know that they won't hear that ever again from anyone else. So I try as hard as I can to to bring it up almost on a daily basis when I'm working with the interns on, on rounds. And it happens. I mean, we see it, it's all everywhere, right?

So it's not hard. When I have residents or fellows in clinic, um, they some, usually they, they sort of rotate through and they can, they work with me a couple times or, or sequentially so they can sort of get an idea of how I, what I do in clinic and how I see patients and the ones that have been there a couple days completely get what [00:40:00] I'm doing.

I mean, it's amazing how quickly they can pick up POTS and Mast Cell Activation Syndrome and venous disease and all these symptoms. You know, I think they, by demonstrating how I interact with these patients and all of the questions I ask and, and the questions that may seem unrelated and, you know, they sort of watch and learn and then they pick that up themselves and, and then when they see patients by themselves, they come back to me and they tell me about all these things that

I'm expecting to hear, right? Like, are they having pelvic pain? Do their legs hurt? Like how reactive are they? Have they ever, you know, had hives, unexplained hives, you know, all these things. And they know, they ask all those questions and they, they, they start, their understanding. And then of course, in clinic they also see patients who have come back,

who have been treated, who tell them, you know, all the things that worked. And I think it's really powerful for them to see these patients through my lens. And so that's how I impart [00:41:00] my, my knowledge on these, on these residents and, and interns and, um, med students. But I don't see all of them. So what I need is like a lecture in the first year or second year medical student curriculum, which I haven't quite gotten yet, but but I don't even know if that would be super helpful.

I think that the, the patient experience is really

important.

Dr. Tania Dempsey: What about your other colleagues, you know, the people, the other attendings and other, how, how open are they to these conditions?

Dr. Alexis Cutchins: I think you have to be a, you have to have a, the right perspective and the right personality to be eager to learn about this population of patients. And I don't think all doctors have that. And I think there are many doctors out there who understand what POTS is and who

understand how to diagnose it, who, who understand that it's real. They're not telling patients that they're, you know, crazy or it's all in your head. They, they do understand how to [00:42:00] diagnose POTS and maybe like minimally manage it, but there aren't a lot of doctors who have really gone that next step further and taken a deep dive into this population of patients to figure out actually how to, to help them.

And it's a lot of work, and it's hard, and we're busy people and so I get it. You know, I think you just, unfortunately until we're starting, until we're educating medical students from the ground up, you know, most doctors aren't going to try to, you know, take a lot of extra time to understand all these nuances,

like what's Mast Cell Activation Syndrome and what's pelvic venous disease? It's just sort of out there. It's a little bit like the wild, wild west for most physicians. So, so they're not, I, I think they respect what I do. You know, I've given some lectures in the, in the school of medicine.

They listen, they think it's great. Like they're so happy that I'm taking care of these patients, [00:43:00] but I'm not sure they're adopting it yet into their practice, which I think until you're doing it a lot and you're seeing the results yourself, i, I get that. That's fair.

Dr. Tania Dempsey: We actually started talking before we got on the recording and we, we talked about MALS, Median Arcuate Ligament Syndrome, which may be worth mentioning and talking about for a few minutes.

Dr. Alexis Cutchins: Yeah. Yeah. I find, i, I have some frustrations with Median Arcuate Ligament Syndrome 'cause I have a lot of patients who have a lot of GI symptoms and who have been seen by multiple gastroenterologists and, and they've diagnosed them with gastroparesis and, you know, other GI issues and they've tried to treat it and they've, they've used a lot of medications.

It's not that they don't care, but once I see them and I ask them some specific questions about their symptoms, it seems pretty obvious to me that what's going on is something with irritation of the celiac plexus of the celiac artery. And so these patients, you know, who have connective tissue disease, who have abnormal [00:44:00] vessels, who, whose vessels aren't quite in the right place at all the right times, can develop a significant pain with eating. And the, you know, the crux or the, the

the sort of, the main symptom of Median Acurate Ligament Syndrome is pain after eating. To the point where patients become scared to eat, they lose weight. There's, you know, some fear of food and and it's not gastroparesis because gastroparesis is nausea and, and slow emptying and bloating and, and constipation and maybe poor absorption of

nutrients and medications. I mean, these are all very real and happen in all my POTS patients, but, but the specific symptom of pain after eating like immediately is, is, you know, I think you have to think of Median Arcuate Ligament Syndrome. You have to at least rule it out, um, because that's something that can be fixed and patients feel better when it's fixed.

And I can't tell you the number of patients that have diagnosed with this [00:45:00] who have had it fixed, who you know, are so grateful because they can eat again. And they're hungry, they want to eat. They're not, they're not, you know, trying to avoid eating. They just have to out of, because, because it causes them so much pain.

And sometimes the ultrasound doesn't show it. So you have to do, um, a CT angiogram or just go straight to a celiac plexus block, which is done through interventional radiology. And the celiac plexus block is amazing because patients will have relief from any pain for a couple hours after that procedure.

And then you know that that's what's causing the, the pain with eating problem. And so it's important to not give up if the ultrasound, the mesenteric Doppler ultrasound doesn't show necessarily compression of the celiac artery because I think we're finding more and more that it's not really compression of the celiac artery that's, it's the problem.

It's the median arcuate ligament sort of irritation [00:46:00] of the celiac plexus, which is a sympathetic ganglion at that point, that's causing the pain. It's not necessarily because the artery is stenosed and there's less blood flow to the GI tract.

Dr. Tania Dempsey: Right, which is why sometimes the CT angiogram doesn't show it either.

Dr. Alexis Cutchins: Right. And why sometimes just removing the median arcuate ligament doesn't relieve the pain because the celiac plexus is still irritated and scarred and inflamed, and it's still there. So, I mean, there's a lot we have to learn in this realm also. It's, it's also something that really needs to be studied, but patients feel better when it gets fixed.

And I hate, I, I just hate that it gets missed. Or not even that it gets missed, but that people don't even think about it as part of the differential diagnosis in someone who's coming in to see for abdominal pain.

Dr. Tania Dempsey: And that's where it comes to like the, the teaching in the medical schools and during residency, right.

Should be on the differential, right. Mast Cell Activation Syndrome should be on the differential, you know, for a lot [00:47:00] of

things too.

Dr. Alexis Cutchins: And POTS should be on the differential, and connective tissue disorders should be on the differential. Yeah. And, and I'm not saying that everyone has it and neither are you, you know.

Dr. Tania Dempsey: A fair number do, but that's the point is it's a, it's a fairly high number if you think about it.

Dr. Alexis Cutchins: Right. It's, I think, more common than we think. And I think people doctors don't think about it. And so when you're not thinking about it, you're not looking for it, then therefore it becomes rare because no one's finding it. But maybe it's not so

rare.

Dr. Tania Dempsey: And I think that, I don't know if we have to thank COVID for this, but it certainly seems like since COVID and so many people developed Long COVID that there is, we are seeing more of lots of inflammatory conditions and I'm sure a lot of these patients had symptoms way before COVID, but there's something about, for many of them, there's something about this timeframe when things may be escalated,

um, maybe we're just more in [00:48:00] tune because of the type of medicine we practice. I don't know what it is. I have a lot of theories and thoughts, but it does seem more than

before.

Dr. Alexis Cutchins: I think it's multifactorial. I think more people have these symptoms. I think more people are being diagnosed and not dismissed, and I think there's a huge increase in awareness in this population of patients. I mean, I can't tell you the number of times that I've seen a young woman who's there with her mom and the young woman is I'm asking all my questions and the mom is like, oh yeah, I have that,

I have that. I have that too. I have all those things,

it just never occurred to them that it wasn't normal, right. And I think I think the other thing that has really brought a lot of attention to this field is social media and the internet.

I mean, I as a physician, I'm proud to say that when a patient comes to me and tells me that they saw something on the internet, I ask them all about it. And I wanna know more because they have time to look for this stuff and I don't. [00:49:00] And if there's something that works, I wanna know about it. And you know, I'm not trying to figure out the cure for my own disease, which all of these patients are doing, and they're all very smart. So I believe them. I listen to them, I try to learn from them. Then I go and look those things up and try to figure out, you know, how I feel about it. But I think TikTok, Facebook, the internet, I think they're all super helpful.

They've educated me

a lot.

Dr. Tania Dempsey: I agree. And, and doctors who get angry when patients bring up Google searches or whatever, clearly have an ego problem because you don't, I don't, I mean, really, really it's about, right, there's information out there. Sure, are there things out there that are not, you know, reliable?

Yeah. Yeah. But, but generally speaking, there's a lot of stuff that, that we can all learn. We can all learn from each other. I learn from my patients every day and I say that like they are the ultimate teachers.

Dr. Alexis Cutchins: And I would say that [00:50:00] the internet has become wiser over the years, right? Like when, when all this first came out and people were finding things on the internet, like you really couldn't trust any of it. Like you're kind of like, well, how do we know that's real? How do we know that's, you know, but

over time, the internet's become more and more sophisticated and people are become more and more sophisticated using the internet and going to reliable sources and, you know, looking for red flags. And so I think, you know, we can trust patients more and more to come to us with information that's real and valid.

And I, I just don't, I don't like to dismiss any of that because what if it's the next cure for POTS or MCAS? I don't know. I'm always looking for one.

Dr. Tania Dempsey: I hear you. I hear you. We all are.

Well, this has been fantastic. Um, I'm so happy to have you here. Is there anywhere on the internet or social media where people can find you?

Dr. Alexis Cutchins: [00:51:00] Yeah, actually you can go to alexiscutchinsmd.com and put your name in there, email and hear more about what I'm gonna be doing next and my adventures in medicine, if you're interested.

Dr. Tania Dempsey: Great. Great. Well, again, thank you so much for coming. We all learned so much. We're gonna have to have you back for part two once you figure out more of this

stuff.

Dr. Alexis Cutchins: I would love to, I always love talking with you guys. It's, you know, it's super fun for me and thank you so much for having me.

Jill Brook: Well, you guys are just brilliant. I could listen to you all day. Thank you for being so curious and so smart, and so open and so caring and oh my goodness, I wish every doctor were like you guys. This has just been such a pleasure. I think I'm gonna go listen to this again, like right now. Um, this has been amazing.

So, okay, listeners, that's all for today. We'll be back soon with another episode, but until then, thank you for listening, remember you're not alone. Remember, there's amazing doctors out there, like these two. And please join us again [00:52:00] soon.