MCAS expert Dr. Bluestein is an anesthesiologist and pain specialist focusing on hypermobility and its associated pain syndromes. Having EDS and her own pain, she discusses the use of opioids, ketamine, pain programs in this population, and much more!

You can read the transcript for this episode here: https://tinyurl.com/potscast172

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EPISODE TRANSCRIPT

[00:00:00] Jill Brook: Hello, Mast Cell patients and lovely people who care about Mast Cell patients. I’m Jill Brook, and this is our fifth episode of Mast Cell Matters, where we go deep on all things related to Mast Cell Activation Syndrome or MCAS. I know you want to get right into it, so I’m going to hand things off to our amazing guest host, Dr. Tania Dempsey, Mast Cell expert extraordinaire trained at Johns Hopkins. Specializing in the most complex cases of immune dysfunction. Thank you, Dr. Dempsey. And which of your amazing colleagues have you brought with you today?

[00:00:35] Dr. Tania Dempsey: I’m so excited to have my friend and colleague, Dr. Linda Bluestein here with us today. Dr. Bluestein is a board certified anesthesiologist, integrative pain medicine physician, and former ballet dancer who has dedicated her life to treating those afflicted with hypermobility disorders. She founded and co hosts the podcast, Bendy Bodies with the Hypermobility MD, and is a former co host of the podcast, Hypermobility Happy Hour. Dr. Bluestein is widely published, considered an expert on hypermobility disorders, and has lectured internationally. She has contributed to two chapters for the book, Disjointed: Navigating the Diagnosis and Management of Hypermobile Erlos Danlos Syndrome and Hypermobility Spectrum Disorders. Dr. Bluestein serves on the Allergy and Immunology Working Group for the International Consortium on EDS and HSD, the Medical Advisory Board for Standing Up to POTS, the Board of Directors for the Bridge Dance Project, and Many, many other organizations. She’s a leading specialist in connective tissue disorders and has created online EDS continuing medical education programs and, and many other things. Welcome, welcome Dr. Bluestein

[00:01:51] Dr. Linda Bluestein: Thank you so much for having me. I’m so excited to chat with you both.

[00:01:55] Dr. Tania Dempsey: Yeah, we have lots to discuss and we’ll just dive right in. You know, so we’re talking, of course, you know, about mast cells today. And, you know, as a pain specialist how relevant is MCAS to your work? What do you think about the percentage of patients that you’re seeing with MCAS? How does it affect the work that you do?

[00:02:15] Dr. Linda Bluestein: So I really did not appreciate initially how impactful MCAS would be or how impactful mast cell disorders would be. And I really, the first few years of my practice, I knew about MCAS. I should back up by saying I practiced in the operating room for many, many years until my own EDS. And other you know comorbidities caught up to me and caused me to have to make a change in my career. So then I opened a pain practice in 2017 is when I first opened my practice. And for the first couple of years, I definitely addressed mast cell dysfunction, but I was not really as attuned as I have been the last few years as I started to read more and more and realize that I was having more success in patients where I was really taking a more mast cell directed approach. Those patients seem to do a lot better than when I didn’t have as much of an emphasis on that, even if they didn’t have as many indicators that that might be a part of their picture. So, in terms of what percentage of my patients seem to fall somewhere on that spectrum of mast cell activation syndrome or mast cell activation disorders. it’s really hard to say, but I would say it seems like almost all of them benefit from taking an approach that is directed at mast cell stabilization.

[00:03:39] Dr. Tania Dempsey: Yeah, that’s, that’s huge. That sounds like, you know, what I noticed as well had a similar sort of story, right? Starting to see complex patients and then inevitably, right? 90% plus, you know, I would argue 95% plus of the patients really have underlying mast cell activation syndrome. So what are you finding? What is your approach then to these patients? What are you finding helpful in the way that you evaluate and treat them?

[00:04:06] Dr. Linda Bluestein: Sure. So, depending on their picture that they are presenting with and what it is that they’re looking for. I sometimes have them fill out the validated MCAD, MCAS questionnaire, or sometimes I have them fill out different forms as part of the intake. But I always ask questions about other mast cell type phenomena, you know, whether they have allergies, asthma, eczema, irritable bowel, a lot of other things that we know are potential mast cell related conditions. And so this is some part of the intake. I assess for a lot of these other things, you know, do they have migraines, CRPS a lot of these conditions that definitely can be associated with aberrant mast cell activity. And when it comes to the treatment approach, I have an acronym that I created that I use As a constant reminder to me to always be thinking about multiple different facets of a person’s comprehensive treatment plan and the acronym is men’s PMMS and the first M stands for movement. So it’s of course, especially for pain management, important to get people moving better and then moving more. The E is for education. So I address stress, we identify triggers and how to mitigate those triggers. And then the N stands for nutrition. So of course, when you’re talking about MCAS, you’re talking about oftentimes different types of trials with different foods and eliminating different foods in order to see if that will affect their symptoms. And then the S stands for sleep. We work a lot on sleep hygiene and things like that. Cause of course, if they’re sleeping better than their mast cells are probably going to be more stable. And the P stands for psychosocial. So whether it be meditation or Working with some different apps and things like that, we can help alleviate someone’s stress and reduce that like fight or flight response that we so often get when we’re in chronic pain. And we have all kinds of symptoms that people don’t appreciate and don’t understand how they could possibly be related. And then the M stands for modality. So oftentimes this might be something like vagal nerve stimulation. The M stands for medication. So this could be antihistamines, leukotriene receptor antagonists, cromolyn, things like that. And then the S stands for supplements. And I use a variety of different supplements depending on the person and what I anticipate that they will most benefit from. Because I also like to keep things very doable for them so that they can comply with the treatment program. And I don’t want to just keep adding and adding more things. So if they come to me already on a number of supplements, I try to say, well, let’s stop these things. Cause of course they could also be Experiencing side effects from the excipients in the supplements, so whether they are on a lot of medications or a small number of medications and supplements, I try to take a minimalist approach, although I know, you know, Dr Dempsey, you know, that can be very challenging to do, but in general, I, I try to kind of use a less is more type of strategy.

[00:07:11] Dr. Tania Dempsey: Yeah, amazing. I love that. That’s a truly integrative approach care of patients. I love that. I’m curious about I know there’s some, some differences in terminology. I would love to get your take on it. I’ve heard JHS joint hypermobility syndrome. There’s EDS, there’s hypermobility EDS. Can you talk a little bit about the distinctions?

[00:07:36] Dr. Linda Bluestein: Definitely. So joint hypermobility syndrome is an older term. So we really, in clinical practice, research, writing papers, we shouldn’t be using that term anymore. We now look at the the scope of joint hypermobility and whether it’s symptomatic or not. And so I should back up by just saying joint hypermobility means that a joint or a group of joints has greater than expected range of motion. And this can be assessed using a number of different scoring tools. And oftentimes when we use the word joint hypermobility, we’re actually thinking about generalized joint hypermobility. And we forget that there’s a couple of other types. There’s actually three other types. There’s localized, for instance, a couple of joints. There is peripheral when it’s limited to the hands and feet. And then there is historical where a person used to be hypermobile and they’re not anymore. People with joint hypermobility can be asymptomatic or they can be polysymptomatic, right? They can have like symptoms in just about every system of the body. And if they do have symptoms, then it’s important to factor into consideration is that joint hypermobility related to, to what is going on. Now they could have that joint hypermobility due to a non genetic condition, or it could be due to a genetic condition. If they have one of the heritable disorders of connective tissue like the Ehlers Danlos syndromes, Marfan syndrome, osteogenesis imperfecta, Louis Dietz syndrome, etc. Then With some of those conditions, yes, definitely the treatment approach will be different, but for the most common type of EDS, the hypermobile type of EDS, there are no FDA approved treatments. And so whether a person is diagnosed with hypermobile EDS or HSD, which HSD means hypermobility spectrum disorder. A person did not meet the criteria for hypermobile EDS, nor do they have another condition to explain their symptoms that are likely attributable to their joint hypermobility. Then we diagnose them with hypermobility spectrum disorder. And in that case, the treatment usually is pretty much the same for HSD or HEDS. EDS because we are really addressing symptoms and how to improve quality of life.

[00:09:54] Dr. Tania Dempsey: Great. Thank you so much for that. I think that was great. And I think it’s important to understand those distinctions. And so how do you think the mast cells are involved in hypermobility? What, what do you think the connection is? And pain, you know, if we kind of put it all together.

[00:10:10] Dr. Linda Bluestein: Right, right. So we desperately need more data. We do a lot of research into these connections and, and potential causative factors, et cetera, but we definitely you know, need a lot more information. We know that mast cells and their behavior can actually modulate pain pathways and mast cells actually interact structurally and functionally with nociceptors and there’s cells in the central nervous system called glial cells, which are basically the supportive cells in the nervous system and the mast cells and the glial cells crosstalk with each other. And you can end up with these feedback loops where the mast cells basically get activated, release all kinds of lovely mediators, which include, of course, histamine and serotonin, proteases like triptase and chimase proteoglycans, TNF alpha, leukotrienes, chemokines, Substance P, Bradykinin nerve growth factor, and prostaglandins, many of which actually will increase pain and inflammation, and also we can end up in this feedback loop where that also causes more activation of mast cells. So again, I I started to learn a little bit about mast cell activation syndrome when I was first opening my practice. And I thought, oh, this is really interesting. But it was really only after I saw the results when I started to really shift my attention towards stabilizing mast cells that I really became convinced. There’s nothing like that kind of evidence, right? That you go, oh, wow, this actually is really, really important. And so in my practice, most of my patients they’re somewhere on the triad pentad, you know part of their picture. So if we’re talking about the triad we often think about having a condition of joint hypermobility. So oftentimes it will be EDS. And then they might have dysautonomia, most often that might be POTS. And then the third part of that would be the MCAS. So there’s a lot of people that have that trifecta or triad. And then, of course, some researchers and including yourself, Dr. Dempsey, we’re like, wait, there’s other things that tend to travel with these things like gastrointestinal problems and autoimmune conditions. So we can talk about the triad or the pentad, but either way. We know that aberrant mast cell activity plays a very important role in the disruption of the integrity of connective tissue. And our colleague, Dr. Larry Afrin, wrote a phenomenal paper that is titled, let me see if I can get this correct. Some cases of hypermobile Ehlers Danlos syndrome may be rooted in mast cell activation syndrome. And when I read that paper, I was just blown away. I was like, wow, this is

[00:12:59] Dr. Tania Dempsey: Yeah, I remember reading that paper, too.

[00:13:01] Dr. Linda Bluestein: it. It makes logical sense that when you activate mast cells and you release things like proteases and degrade connective tissue that you maybe in some cases, it’s not the primary cause of a person’s joint hypermobility or their joint instability, but it could be exacerbating the problem, right? And so we know that these things travel together and there’s been lots of researchers that have looked at, at this and have found you know, for example, in people with familial hyper tryptosemia that twice as many of the people had joint hypermobility compared to the general population and a huge percentage of People who have the familial hyper tryptosemia also have orthostatic intolerance. And so that’s a potential explanation for some cases. But we know that a lot of people do test negative for for that particular genetic condition. So we don’t really know what the explanation is. probably for the majority of cases, but we know that there is definitely a lot of overlap. And there’s been, you know, some really great studies looking at this. This one study looked at, you know, about a hundred patients where they found that 24% of the EDS patients had MCAS diagnoses. Another study where they found that 66% of patients with POTS and EDS had symptoms suggestive of a mast cell disorder. So that’s 66% in that study. Other studies where they found, you know, a higher prevalence of asthmatic symptoms and atopy. So we just, we know that these things really tend to travel together.

[00:14:36] Dr. Tania Dempsey: Yeah. Yeah, absolutely. So, so what kind of symptoms then do you see getting better when you approach these patients with MCAS targeted therapy? I mean, is it helping everything? Is there hypermobility changing with MCAS targeted therapy?

[00:14:55] Dr. Linda Bluestein: I don’t worry as much about their hypermobility. I worry more about their joint instability. So there’s mechanical joint instability, which is when we actually measure it, which most of the time it would be a physical therapist who would be doing different types of tests looking for accessory motion and a joint, you know, abnormally high degrees of accessory motion. But functional instability is when the person feels like their joint is going to give way even under low force conditions. So when we stabilize the mast cells, I find that this is very common that people’s functional instability improves whether or not we can actually measure that in clinical practices, you know, it’s another story. But they often feel like they are better able to control their joints. And of course, that could be a variety of factors related to inflammation. And also if they are able to have lower levels of pain and they are therefore able to be more active and whether it’s physical therapy or Pilates or some other type of movement practice where they’re actually able to develop some strength finally because They’re sleeping better. Their anxiety is less, their gut symptoms are improved, that’s probably the biggest thing that I noticed is people’s GI symptoms. It’s overwhelming to me how many people have abdominal pain, bloating, diarrhea, constipation, reflux, you know, all of these symptoms, right? And they’ve usually seen a gastroenterologist. They’ve usually been scoped. They’ve been told they’re fine. There’s nothing wrong with them. And yet they continue to experience these symptoms. But then when you, okay take a mast cell directed approach. Oftentimes those symptoms get vastly improved and it seems very logical that if you’re improving the function of their gut that they’re also absorbing their nutrients better and therefore their connective tissue is likely to be stronger.

[00:16:44] Dr. Tania Dempsey: Yeah. Absolutely.

[00:16:46] Jill Brook: Could I ask a question? Because this is all so mind blowing. And of course, in the patient world, there’s a lot of patients out there who say, I just have POTS and EDS. For example, I don’t have the MCAS symptoms. But am I hearing that POTS and joint instability can be symptoms of the MCAS? And I guess the reason I ask is because my understanding is that in order to be diagnosed with MCAS, you have to have symptoms in at least two different bodily systems. And

[00:17:19] Dr. Linda Bluestein: Oh, I see what you’re asking.

[00:17:20] Jill Brook: POTS were one potential symptom and joint instability or hypermobility were one symptom, well then that could be two right there, or am I stretching it? Would somebody ever have those two without having other MCAS symptoms in the beginning? Thank you.

[00:17:37] Dr. Linda Bluestein: I would take a more strict approach to that because I feel like it, once you start to have awareness about joint hypermobility, you see it everywhere. The statistics are, you know, for adults 20 to even higher 30 or 40% or within the dance population, it’s even higher. It’s like, you know, 80 to 90% have some degree of joint hypermobility. So I don’t think calling that a system and that single feature, to me, I would not necessarily classify that as a sign or a symptom of MCAS. And likewise, for me, I guess I would have to dig more into what the symptoms related to their POTS diagnosis. what symptoms are they having? Because although this triad comes together or trifecta comes together very, very frequently. I think it’s also important when we can to distinguish between the different clinical scenarios or clinical features so that we are directing our therapies most appropriately, if that makes sense. I don’t know. Do you agree or disagree with that? Dr. Dempsey.

[00:18:46] Dr. Tania Dempsey: Yeah, I agree. And I agree that we have to be a little stricter about it because as you said, you know, maybe hypermobility is more prevalent. It’s interesting the statistics you’re using, right? So you’re saying 20 to 30% of adults in the in the population, maybe more generally, right? Have some kind of hypermobility,

[00:19:05] Dr. Linda Bluestein: some kind of hypermobility and amongst children, it’s up to 40%. Of course, it depends on the age and we don’t really have good norms for children, which is why a lot of us really like to postpone making a diagnosis. A lot of people will say, I want you to evaluate my eight year old. And it’s like, we don’t know what’s normal at age eight. We don’t have enough data for that. So we know that it’s much more common for people to have hypermobility when they’re younger.

[00:19:31] Dr. Tania Dempsey: right? That makes sense. What I wonder about is the statistics, because, you know, we throw around 17% of the population has MCAS. I mean, that’s based on one study, many of us believe that it’s probably, you know, an under representation, so if I extrapolate up from 17%, I’d say it’s 20%, but maybe it’s really 25%. So then you start to wonder, we need clearly more research on this, then I do wonder how many of those adults who have some sign of hypermobility actually have other systems involved like GI symptoms. Maybe they have migraines and maybe no one has actually put it together for them. So, you know, I agree we can’t use that symptom alone, but I would venture to guess based on what I see that, that many of them have other symptoms that might bring them into the MCAS fold. But yes, you have to be cautious about doing that.

[00:20:27] Dr. Linda Bluestein: Yeah. Makes sense

[00:20:28] Dr. Tania Dempsey: Because once you see, like you said, once you see hypermobility, you see it everywhere. And once you see MCAS, you see it everywhere.

[00:20:34] Dr. Linda Bluestein: Yes. So true.

[00:20:36] Dr. Tania Dempsey: So those of us who do this, I think it’s just really important for us to step back sometimes because our lens is that and so we have to be careful not to. Right? Take

[00:20:47] Dr. Linda Bluestein: Yeah. Totally. And actually what I have actually started to do is quiz my friends and people who are healthy and I’m doing air quotes right now as a way of gathering more information because most everyone that I talk to as patients or clients, cause I, I offer a couple of different options for interacting with me one on one. So I, I’ve also started gathering more data just because I feel like it’s important to get a sense of people that I, I might observe that they have a little bit of hypermobility so that I will actually ask them even if they’re not a friend or, yeah,

[00:21:26] Dr. Tania Dempsey: Yeah. I think

[00:21:27] Dr. Linda Bluestein: so do you have any of these other problems? if you’re willing to share and of course, anyone can have mast cells being activated when they have a virus. Right. And so they’re getting, you know, signs of mast cell activation, they’re getting flushing or, or whatever, but they don’t have an ongoing problem with it, or they’ve drunk a lot of alcohol. And so they’re getting flushing from alcohol, but they don’t have an ongoing Problem like our patients do where they are suffering on a daily basis and often with, with multiple, multiple symptoms and multiple bodily systems. The human body is so fascinating. And I think that that’s exactly right is we tend to get into our practice and our patients, and I’m just trying to widen my lens a little bit.

[00:22:11] Dr. Tania Dempsey: Yeah, I think that’s smart.

[00:22:13] Dr. Linda Bluestein: Yeah.

[00:22:14] Dr. Tania Dempsey: I think that’s smart. I’m constantly doing the same thing. We have to. Maybe we can shift gears a little bit and talk more about pain. And I wanna get a sense from you how you approach pain in these patients, in terms of treatment how you might approach, you know, what they should take as far as pain medications. Are they good or bad? Those types of things.

[00:22:37] Dr. Linda Bluestein: Sure. So I use a lot of different medications for my patients that have persistent or chronic pain. Most of the time they’re not opioids. So I just want to clarify first that when we talk about pain medications, there’s a lot of things that are available besides opioids, but I do want to talk about opioids first, just because obviously that is one of the most potent medications for pain or groups of medications I should say. And they do have very important considerations when it comes to MCAS. So there are three medications that are The worst when it comes to having MCAS, and we only see one of these really with any kind of regularity outside of the operating room or the emergency room usually. And that would be morphine. Morphine is a very potent trigger of mast cell activation and histamine release. And so even in somebody who has no MCAS whatsoever. They can get an injection of morphine, especially if it’s intravenously, and they will have hives going all the way up their vein on their arm. that does not necessarily mean that they have a morphine allergy. That can just be a direct histamine release that that happens. But morphine is a very, very well known trigger of of that type of reaction. Another one is Meperidine or Demerol. And Demerol is very rarely used anymore, but we do use it Sometimes intravenously for shivering in the postoperative care unit. Sometimes we still use a meperidine or demerol. And then the third one is codeine. So hopefully not too many people are prescribing Tylenol number three anymore because we now know from pharmacogenomics studies that there are vast differences in the way that people metabolize codeine and especially in children. It is Strongly recommended that codeine be avoided in children because you don’t know if that child is a fast metabolizer or a slow metabolizer and so those three medications in particular are best to be avoided, especially if somebody does have MCAS, because they are the worst when it comes to histamine release. There are a couple of other medications that we don’t have a ton of data on. It’s funny when I was practicing in the operating room, nobody really knew what fentanyl was, or very few people knew what fentanyl was, and now everyone knows what fentanyl is. But fentanyl has some other derivatives called sufentanil, alfentanil, and remifentanil. And the general consensus is that these drugs do not cause histamine release. These are usually used in the operating room in the emergency room, and the fentanyl is used sometimes as a patch, but no patch for more really, really long standing chronic pain. I literally have never prescribed a fentanyl patch myself. I mostly use opioids as a short term medications for patients that might be experiencing subluxations or dislocations for short term to get them through those few days afterwards, where they’re having a lot of pain or, you know, use a muscle relaxant, something like that, if they have you know, an acute exacerbation of their pain. It is something that does get used sometimes, especially in the cases of substance use disorder. And so does buprenorphine. And both of those we know can’t release histamine. And in fact, buprenorphine can actually cause histamine release and tryptase release in the lung more so than in the skin. So that would be anticipated potentially cause more pulmonary problems. This is not something that I prescribe regularly because this is also something that is often used for really, really long term Chronic pain and and people who are like, at higher risk for substance use disorder and that kind of thing. We also have, in terms of a couple of other opioids, we have tramadol and to pentadol and we have limited data on those, but those may also induce histamine release. Fascinatingly, heroin actually may cause urticaria or hives and asthma and or a contact allergy and anaphylaxis. And so it’s possible that some cases of opioid overdose deaths could actually be due to allergic reactions. So in general, yeah, in general, I’m not a fan of opioids because Obviously, you have tolerance, you have problems of physical dependence, which is different from addiction. But you know, once you’ve been on an opioid for a relatively short period of time, your body becomes physically dependent to it. And then tolerance means that you have to increase the dose over time in order to get the same effect. And those are different from addiction. People often see that a person has developed physical dependence and they interpret that as addiction. And that is not the same thing as addiction. Addiction is where you are willing to accept adverse outcomes and do things like, you know, rob a store or something like that in order to get the medication. So addiction and physical dependence are two different things. With opioids, we have to think about mast cell degranulation, number one. We have to think about tolerance and tolerance develops in different systems differently. So, for example, a person could have a lot of tolerance to the analgesic effects of opioids or the pain relieving effects of opioids, but not as much tolerance to the respiratory depression. So as you escalate the dose. They’re getting less analgesia, relatively speaking, but they’re actually getting closer and closer to that threshold of respiratory depression. So, you actually get closer to that toxic dose. So we have to be very, very careful with that. I do prescribed ketamine, not infrequently, ketamine is an NMDA antagonist and actually can help with opioid induced hyperalgesia, which is when opioids actually sensitize the nervous system and actually make it so that you are more sensitive to nociceptive or painful input. And ketamine can actually help reverse that. And also nowadays most people have heard of ketamine like I got like I said back when I was in the operating room people didn’t hear of either of these drugs. Ketamine is used often in veterinary medicine as a analgesic and or anesthetic and we used it in the operating room as part of our anesthetic not infrequently because it has very very potent pain relieving or analgesic properties. It is available a lot of places as an infusion and can be effective that way. I prescribe it as usually as a sublingual tablet, because you do have to bypass the GI tract so you can administer it intranasally, sublingually, intramuscularly, or intravenously, but ketamine also does help stabilize mast cells, so from that standpoint, it is a very good either adjunct Or you know, rescue type medication for people who are having chronic pain. If you can find that sweet spot of getting analgesia without getting too many cognitive side effects, it varies a lot. Some people you can really get nice analgesia and they don’t have you know, really bothersome side effects and other people it doesn’t work as well for them. So as, as you guys know, there’s nothing that works for everyone. So we have to have lots of tools in our toolbox.

[00:30:06] Dr. Tania Dempsey: Just really quickly before you go on, I just wanted to ask you about the ketamine again, because I’ve had conversations with other practitioners who are administering ketamine. Some are psychiatrists, some are pain specialists, and And so there’s a little bit of a debate in the community about the best, I’m using air quotes, way to get ketamine in. And so you obviously, you mentioned IV, and then you mentioned sublingual, nasal. Do you notice a difference in these patients and how they respond and how their mast cells respond?

[00:30:38] Dr. Linda Bluestein: So I think in the last two days, I’ve had this conversation about five times with patients. It’s a conversation that we have very, very frequently because of course, as more and more ketamine clinics have popped up, it’s really challenging because, you know, whether it’s a ketamine clinic or an IV infusion clinic, and I know Dr. Dempsey, you and I have discussed IV infusions quite frequently

[00:31:02] Dr. Tania Dempsey: sure have.

[00:31:03] Dr. Linda Bluestein: other, yes, of other, you know, whether it’s Myers cocktail or vitamin C or magnesium or, you know, something like that. It’s very unfortunate that a person can just walk into one of these places and, it’s turned into the Wild West in a way. And for both of those types of therapies, if you want to put those into like two different buckets, I think it’s really important that you’re being evaluated by somebody who is not just a one trick pony. And this is what they’re going to do. And they’re going to give you this, whether it’s the right thing for you or not, because that’s really all that they have to offer. And there are some ketamine clinics where they really focus a lot on the mental health dosing of ketamine, which is a lower dosing protocol than the chronic pain dosing for ketamine. So I encourage my patients when they’re and they’re calling around and or having consults with different places to ask a lot of questions about dosing and some places will stack. So they’ll do, you know, a procedure Monday, Tuesday, Wednesday, maybe Thursday, take a few days off and then do a couple more. Other places they’ll do one treatment and that’s, that’s it. I literally had a patient today that I prescribed some, some legal ketamine to. And this gentleman actually has adhesive arachniditis, which is an extremely painful condition. And he actually has also an intrathecal pain pump. And he told me that he has gotten more cognitive side effects from the ketamine trochees or ketamine sublingual tablets that I’ve prescribed him then when he had a ketamine infusion Year or two ago. And he got minimal benefit from the ketamine infusion and I feel confident It’s because they gave him the mental health dosing not the chronic pain dosing because that might be their protocol. It might be that that’s what they’re comfortable with if you’re a psychiatrist most likely, your airway skills are not going to be the same as if you are a nurse anesthetist or an anesthesiologist. So you might not have the same level of comfort if someone goes into a respiratory arrest. So, for me, somebody goes into a respiratory arrest. No big deal. And for my colleagues, you know, we’re super comfortable with that. We’re totally used to managing airways, but if that’s not something that you have done day in and day out, then you’re going to really be trying to avoid that. And I’m not saying that you should be trying to go there. Ketamine actually helps preserve cardiovascular function. It’s great for trauma cases, or, I mean, we used it a lot in the operating room. If you had somebody who had tons of risk factors for apnea or you wanted to do like a Mac anesthetics, a modern day anesthesia care, but you wanted to keep them breathing like ketamine is a great drug for that. So it just really depends on where you’re going and who’s applying the treatment, but there’s a lot of nuance that is really important to consider and it’s hard for patients because how do they know, you know, it’s really, really difficult.

[00:34:03] Dr. Tania Dempsey: Absolutely. And it’s hard for patients to think about how hard it is for us having these conversations and there’s so much, you know uncertainty and just, just misinformation even in some cases.

[00:34:15] Dr. Linda Bluestein: Oh, definitely.

[00:34:17] Dr. Tania Dempsey: What about cannabis?

[00:34:18] Dr. Linda Bluestein: I recently moved from a state where cannabis was illegal to one where it is legal. So it’s interesting to see the evolution in the patients that I see and in my practice. And of course if we back up and talk about the cannabinoid system, and, and I should have mentioned that opioids, we have an endogenous opioid system and we have an endogenous cannabinoid system. We have cannabinoid receptors and we make endogenous cannabinoids and cannabis consists of a lot of different cannabinoids or different compounds. And one of the most common ones is CBD or cannabidiol. And when I was in Wisconsin where cannabis is illegal, and of course some states it’s like illegal for recreational use, but then you could get a medical license and in some states … there’s a lot of variation right in the across the country, but then it’s still federally illegal. So there’s a lot of tricky things around cannabis and THC specifically, but I do find CBD or cannabidiol to be very effective as a anti inflammatory molecule in the body. And a lot of my patients really have benefited from that quite a bit. if you’re in a state where it’s legal, adding in a very, very small amount of THC can induce what’s called the entourage effect. You’re reducing your pain by 2 points on the 0 to 10 scale, which, by the way, I hate that scale. But instead of reducing it by 2 points with the CBD and 1 point with the THC, you’re reducing it by 7 points by combining the 2. So if you use a very, very small amount of THC, oftentimes you can get a lot more mileage out of that CBD or cannabidiol. So sometimes I recommend that people in Colorado where it’s legal, where I now live and, and practice most of the time, if they, especially in the evening add in a very, very small amount and I tell them the goal is not to get high. The goal is to just facilitate that pain relief and you want to be careful because the other thing that can happen is as you are metabolizing the THC, it can make you sleepy, but then it can actually wake you up just like alcohol. Alcohol can make you sleepy, but when it’s metabolized to other compounds, it actually can wake you up. So you want to just be mindful of that and really be thoughtful about how you try all these things and you know, monitoring for improvement. But I, I definitely do think that that is a group of compounds that can be useful and there’s other cannabinoids besides cannabidiol. There’s other ones as well, like CBN and those can be effective also.

[00:36:59] Dr. Tania Dempsey: Gotcha. Thank you for that. So what other things would you like the audience to know about? What else do you use with your patients?

[00:37:08] Dr. Linda Bluestein: So, one of my favorite supplements is palmitola ethanolamide. It’s abbreviated as PEA, and PEA acts on endocannabinoid receptors, and actually also can help with mast cell stabilization. It can help with neuroinflammation, it can help with that sensitization of the nervous system that can occur. With chronic pain when you’ve had a lot of nociceptive input into the nervous system, we can often see what’s called nociplastic pain. So nociplastic pain is when the nervous system actually has become dysfunctional in the way that it processes pain signals, and we can think of it as not that the hardware is defective, but the software. There’s a problem in the software and this is something that I see extremely commonly in my patients. And if we can address the nociplastic aspect of the nervous system, then we can help with widespread pain. For example, I had a young man who came to see me, he was 10 and he had pain everywhere and mom asked him. Everywhere and he said, well, I guess my eyelids don’t hurt and this poor young man had been seeing, you know, his PCP, they’d taken him to a rheumatologist and I did prescribe CBD and PEA. And we talked about low dose naltrexone and that I didn’t prescribe it at the first visit or the second visit, but we talked about potentially using that in the future. And his pediatrician really did not like the fact that I had recommended CBD. He was very much opposed. And interestingly, he had recommended this young man take NSAIDs, you know, daily NSAIDs, which of course we know can be hard on the intestinal lining and cause their own set of problems. But he was concerned about the CBD. Because the NSAIDs weren’t working, I took him off the NSAIDs and I started a completely different protocol and never started him on the LDN because he got so much better. And I see another family member who I had a visit with the other day and he popped on the screen and said, hi doctor. You know, he’s doing great. He’s in school and feeling much, much better. Just, you know, I mean, has aches and pains like we all do, but doesn’t have that brain on fire type of. pain that can just take over your life. So my goal with patients and clients is to take that pain brain and, you know, start dousing the flames and getting people back into a place where, you know, you can still feel pain because pain is helpful. Pain is important. It’s information that comes in and is basically requesting a change. So if you are feeling pain in a certain part of the body, especially if it’s a new pain. You should think about, well, what have I been doing? What maybe should I do differently? What is this information trying to tell me? So the goal is not to eliminate all pain, but to improve functional capacity, improve quality of life, and to take away that whole body pain.

[00:40:26] Dr. Tania Dempsey: Yeah, absolutely. Wow. Great cases. Jill, did you have a question?

[00:40:33] Jill Brook: yeah, speaking of that all body pain and desperation to feel better, we get a lot of questions about some of those pain camp programs that are popping up, especially for some of the like adolescence or younger people. And we hear that oftentimes it’ll be kind of an intensive program for a month or 6 weeks or something like that with all kinds of recovery directed activities, and oftentimes it might have a whole lot of exercise involved. A few of them we’ve heard kind of have like a no excuses, push through the pain mentality… you must overcome. And people kind of really wonder about those. Do you have any thoughts for our audience on those programs?

[00:41:16] Dr. Linda Bluestein: I have lots of thoughts.

[00:41:18] Dr. Tania Dempsey: would.

[00:41:19] Dr. Linda Bluestein: When I heard this question, I was like, I love this question. So first I have some exposure to this outside of my patient population and I do believe that there is a role and that potentially some people are going to benefit from attending these kind of pain camps, but I think it’s really important to be extremely mindful about who is the ideal candidate for that pain camp and who is not a good candidate because it’s my experience that they are not super selective. And that they are not necessarily screening out people who are not necessarily a good fit. So I do not want any of my patients going to a camp where they’re saying no excuses push through the pain. No, no, no No. Your nervous system is just going to get more and more danger danger danger. I mean your nervous system is going to feel less and less safe and this is going to be Contributing to the symptoms that you’re going to be feeling. You’re going to have more anxiety less good sleep I feel with the patients that I see. That it’s It’s not a good approach for a lot of people. And I’m also, when it comes to my patient population, I’m also really biased because a lot of my patients that I see have been to those programs and they did not get better. So I’m sure there are success stories out there, but of course they’re not going to seek my help because they don’t need it. So I’m sure that I’m biased in my view, but I think that their role is probably in a certain very specific population and not a lot of people will fit that specific criteria. A lot of these places probably need to operate with a certain amount of volume, and so they may not be super choosy about who they take.

[00:43:17] Dr. Tania Dempsey: Do you think that those camps are danger to patients? Endangering their health?

[00:43:23] Dr. Linda Bluestein: I think that they can make people worse. I should say that. I don’t think that they make. Most people worse. I certainly hope not. Because then you would hope that they would reassess and look at, okay, what are we doing? Where are we going wrong? Because we’re making more people worse than we’re making better. You know, you would certainly hope that they’re ethical and, you know really wanting to improve people’s quality of life. But I do believe that there are people who are going to get worse in those programs. I will say when I was first saying about I have experience outside of my patients, I was recommended to go to one of these programs and this was about 2010 when I was in a lot of pain, I had pain brain. It was terrible. All I could talk about 24 seven was my pain. And that was a really rough time in my life. And it was recommended that I go to one of these programs and I started reading about it online and I was like, this really looks like it’s directed at people who are on opioids and weaning off of opioids and I wasn’t on any opioids at that time. Or since actually, I should clarify that. I kind of always knew that would be a slippery slope that I didn’t want to go down. So I fortunately did not elect to go to that program and was able to get myself better. I no longer have pain brain. I, you know, have aches and pains like everyone else. And because I have EDS, I have to be more mindful about overuse and, and things like that, but I do think that these programs can be recommended in cases when it’s not appropriate.

[00:45:03] Dr. Tania Dempsey: So, so the bottom line is somebody like you who has dedicated her life to helping patients like this. You were a patient yourself and, and you’ve seen the results, right? So that should give a lot of people hope.

[00:45:16] Dr. Linda Bluestein: Right? And that’s, that is really why I do my podcast. It’s really why I started writing papers and opening my practice. It started out completely selfish. I was given an EDS diagnosis in 2012 and I was told, well, go on and live your life because there’s really nothing that you can do. And I said to myself, I’m not going to take that for an answer. I am going to figure out how to get my life back because I’m young. I have a lot of life left to live. And fortunately, the strategies that I started applying to myself, I thought, well, once I started learning more about EDS and chronic pain and pain processing and central sensitization and nociplastic pain and mast cell activation syndrome and POTS and, you know, These things that tend to travel together and IBS and a lot of other :migraine and all these other diagnoses that I had had lifelong: eczema, asthma, allergies, a lot of things that I had experienced and no one had, you know, connected those dots. So when I first opened my practice, I, I thought, well, I don’t know, I’m gonna, you know, try some of these same things. I do lots and lots of research. So I never run out of ideas. Obviously, there’s tons of literature to, to sort through and at least I haven’t yet run into a situation where I’ve run out of ideas. So I feel like I’m very fortunate because I had that own personal experience to know what it’s like to be in that really, really dark place. And not that my treatment strategy works for everyone. There’s no doubt that there’s people that it won’t work for, but I at least know that it works for some people.

[00:47:00] Dr. Tania Dempsey: That’s amazing. Amazing. So, Dr. Bluestein where can people find you and your wonderful Bendy Bodies podcast.

[00:47:07] Dr. Linda Bluestein: So they can find me@hypermobilitymd.com and that is the website for my medical practice. And I do see people one-on-one first in Colorado or Wisconsin. And then we can do some of the follow up virtually. But the first visit does have to be in person. And the Bendi Bodies podcast website is BendyBodiesPodcast.com. I also offer one-on-one sessions. Coaching style sessions for people who are out of the country. People who cannot make it to an in person session and I give people like a one on one lecture and give them some suggestions and I write detailed notes that they can then take to their own health care team to carry out. So I’ve seen people from Singapore and Korea and tons of European countries and just give them ideas and I feel like I’m doing a little bit of the detective work and acting a bit as a translator between them and their own medical team.

[00:48:10] Dr. Tania Dempsey: Amazing. Amazing. I love the work that you do. You’re helping so many people.

[00:48:15] Dr. Linda Bluestein: Oh, thank you so much.

[00:48:17] Jill Brook: guys are amazing. I could listen to you all day. I already have to listen to this episode again. There were so many wonderful nuggets. Dr. Dempsey, Dr. Bluestein, thank you so much for this information and for all that you do to help MCAS patients and patients with the triad and the pentad and the ever growing bundle of issues. So I also want to just mention that at Standing Up to POTS, we’re thrilled that Dr. Bluestein is also our newest medical advisor, so we can bring you more of her awesomeness all the time. So that’s all for now, but thank you for listening. May your mast cells be good to you, and please join us again soon.