E142: Unravelling Medical Complexities with Dr. Ilene Ruhoy and Dr. David Kaufman

Episode 142 May 30, 2023 00:47:27
E142: Unravelling Medical Complexities with Dr. Ilene Ruhoy and Dr. David Kaufman
The POTScast
E142: Unravelling Medical Complexities with Dr. Ilene Ruhoy and Dr. David Kaufman

May 30 2023 | 00:47:27

/

Hosted By

Cathy Pederson Jill Brook

Show Notes

Drs. Ruhoy and Kaufman specialize in people that suffer from several chronic invisible illnesses. Thinking about them as a cluster and then breaking diagnosis and treatment down into pieces can help all physicians treat POTS, ME/CFS, and MCAS. They also regularly look for anatomical problems in their patients, which medication alone cannot fix.

Link to their podcast: https://www.patreon.com/posts/introduction-75440859

You can read the transcript for this episode here: https://tinyurl.com/potscast142

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

View Full Transcript

Episode Transcript

Unravelling Medical Complexities [00:00:00] Jill Brook: Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your hyper adrenergic host, and today I'm excited to have two really special guests who are renowned physicians specializing in the most complex patients. So, for example, if POTS is just the tip of an iceberg of medical issues that you or your patients have, Then these physicians are your people. If you or your patients have comorbidities up the wazoo, they will not be phased by it. In fact, they have a podcast called Unraveled, where they unravel medical mysteries and dig deep into angles of complex illness. Dr. David Kaufman and Dr. Ilene Ruhoy, thank you so much for joining us today. [00:00:45] Dr. Ilene Ruhoy: I am happy to be there. [00:00:47] Dr. David Kaufman: Thank you for having us on together. [00:00:49] Jill Brook: We like doctors who have a lot to say on this topic. They're hard to find. Since you two have spent so much time exchanging ideas about complex illness and medicine, I thought it might be fun to have you introduce one another and say why you appreciate the other's perspective on complex patients. So if that's okay dr. Ruhoy, could you introduce Dr. Kaufman for us? [00:01:14] Dr. Ilene Ruhoy: I would be honored to introduce Dr. Kaufman. I love Dr. Kaufman. And to be fair, he's been doing this a whole lot longer than I have actually, and I have learned a tremendous amount from him. So, Dr. David Kaufman is trained as an internist, but spent his entire career basically immersed in infectious disease. And in fact, started way back in the eighties. We're both New Yorkers and I remember those days of the HIV epidemic and where no one knew anything. Right. All of these people were getting sick and no one really understood what HIV was about, how it was transmitted. That was a whole big controversy, much less how you treat it. But Dr. Kaufman spent day after day treating these patients who were suffering from HIV and was really on the forefront, was just sort of part of that whole landscape of learning about HIV and really devoted his practice to these patients and not only helped so many people, but learned so much that he's been able to bring that forward into the more chronic and complex world, and that's what he's basically spent his career doing. And so he for many years has seen patients with chronic and complex disease, mostly now that we recognize have been post-infectious. And so that's again why his infectious disease background really has played such an important role in how he's been such a phenomenal doctor for so many people, and has sort of focused on diagnoses such as ME/CFS, fibromyalgia. Now long COVID as well. And I was lucky enough to meet him several years ago at a mast cell conference, actually out in Denver, Colorado. And at that time he was not yet living in Seattle, but he soon thereafter moved to Seattle and I was so excited and we immediately planned to work together. And it's been a match made in heaven and we collaborate on a lot of patients. And I just can't say enough great things about him. He's the smartest guy I know. He's the smartest guy in the room always. And has just seen so much and has just done so much with regards to treatment and research and reading and caring for patients that he's just a wealth of information and I learned from him every single time I have a conversation with him. So that's Dr. David Kaufman. [00:03:19] Jill Brook: Wow. Okay. Dr. Kaufman, I'm sorry you have to follow that. [00:03:23] Dr. David Kaufman: Really that leaves me a little bit speechless. Thank you, very much. So I was going to begin my introduction with what you said towards the end, which is that I remember meeting you at the mast cell meeting in Boulder and jumping outta my chair thinking, oh my God, I found a neurologist in Seattle where I'm gonna move and I don't know anybody. And that was a very important moment because we have worked together constantly since then. And Dr. Ruhoy has come everything I was hoping for, which is an extraordinary neurologist who easily and consistently thinks outside the box, doesn't accept things at their face value, doesn't kind of accept when another doctor says, oh, there's nothing wrong with this patient. And is constantly learning, constantly searching and challenging me with, I gotta learn what she's talking about. Cause I don't know these diseases, these neuro terms, these brain structures. And I'm constantly trying to catch up. So she's an amazing person to work with and aside from being an amazing neurologist and knowing all this stuff, both with regarding neurology and mitochondrial disease and integrative medicine, she never stops learning and never stops wanting to know more, and always is focused on patient care. So I think we are a great team together and I really love it. [00:04:44] Dr. Ilene Ruhoy: Well, thank you Dr. Kaufman. [00:04:46] Jill Brook: I'm already so jealous of your patients. Can you tell us what kinds of patients you collaborate on? Who are these complex people? What kinds of things do they have going on? [00:04:55] Dr. Ilene Ruhoy: We have a very diverse patient population. Having said that though, there are a lot of common themes as well. One thing that we often talk about is that how every patient is the same, but yet every patient is different, and that's what makes them so challenging, but also so rewarding, right? Because you know where to start because we talk about the septad and that number just of course, keeps going up, but we still are just sort of stuck on the septad, which we always say gives us a roadmap of even where to start the treatment. But importantly, every patient is different. They have their own history. Sometimes a symptom is more prominent in one septad patient versus another. And so you can focus in on that particular symptom and how it's impacting their quality of life and what we can do about that. So while there's very, very many similarities among the patients, there's also many differences. And so that's why we just sort of consider them complex patients, right? And they're challenging, but like I said, rewarding to treat them. And we learn from patients every single day because of that. Because they're not all the same. They're not just sort of the same package of the septad diagnoses. They are that, but so much more. [00:05:58] Jill Brook: And can I have you just say for our listeners what you mean by the septad in case they haven't that before? [00:06:04] Dr. David Kaufman: How many words can she use? 25 words less [00:06:06] Dr. Ilene Ruhoy: I'm am gonna let Dr. Kaufman answer that one. [00:06:09] Dr. David Kaufman: Alright, well, so I want to give credit to Andy Maxwell, who's a cardiologist in the East Bay in the San Francisco area. And he came up with, initially as a Pentad, he's still angry at me for taking it over and calling it a septad. it is a concept that I think is ultra critical to understanding these complex patients. And let me digress for one second. So yes, we see complex patients, most of whom fall under a diagnosis of mE/CFS and or long COVID. One of the few virtues of long COVID is that everybody seems to understand what that is describing. So when somebody says, what do you do? I now say, well, I do long COVID, except I've been doing it before long COVID, and it makes it a lot easier. Okay, so these patients never have a single problem. They always have multiple problems and in terms of thinking about it, ME/CFS and long COVID are simply the phenotype. It's what they look like, it's how they present or walk in the door. Sadly, most of the healthcare system stops at that point. They open the door, they say, oh my god, you have ME/CFS bye, we don't want it. The septad concept, we think, helps us understand better, but also I hope will help other physicians understand better. So, Ilene, help me if I missed things. Okay. So the concept refers to the fact that andy first noted that when we all discussed our patients online, we had like a listserv. There were these frequent overlaps. All the patients would come in with at the time, mast cell activation syndrome, but aha, wait a minute. They also had EDS, dysautonom ia, POTS gastroparesis, and small intestine bacterial overgrowth, autoimmunity, chronic infection. Progressive connective tissue disorder separate from their EDS. Did I get 'em all? [00:08:00] Dr. Ilene Ruhoy: Yes. [00:08:01] Dr. David Kaufman: Okay, good. That was fast. Usually I forget one. And once you have that roadmap, as Ilene put it, it helps you, the physician or the patient plan the workup in a very common, methodical way and begin to consider how to treat. And it turns this mysterious, complex illness that everybody tends to roll their eyes at into a manageable problem that can be effectively treated. [00:08:27] Dr. Ilene Ruhoy: I think that's key for patients going forward because as David said, very often they show up at a doctor's office and the doctors just don't know what to do with them and basically send them on their way. But if we can somehow communicate to doctors that wait, just take a step back, take a deep breath. This is actually a lot more manageable than it seems on the surface. And hence the whole septad picture then that is obviously in benefit for the patient, right? So that will help the patient get appropriate care or at least appropriate evaluation which is where it needs to start. [00:08:59] Dr. David Kaufman: That is the motivation or was the motivation for doing our Patreon unraveled understanding chronic complex illness? We had hoped, and still hoped that we will have physicians look at this and begin to see, wait a minute, this is not so complicated. Most physicians can easily understand what POTS is if they're willing to just open their eyes and open their ears, you know? Once you look at even that single item, that single pathology, you can do so much for the patient. I mean, POTS is a major driver of illness in our patients and morbidity. It's what makes them have brain fog, makes them feel dizzy, causes their fatigue. So even if they only get one out of seven, that's huge progress. [00:09:40] Dr. Ilene Ruhoy: Yeah, for sure. And that is, that's exactly what I was gonna say. And each diagnosis of that septad really is not that complicated, right? It's like anything else, right? Break it down into its pieces, then it's not that complicated. You just start with the pieces. [00:09:54] Dr. David Kaufman: right. And and you end up with actionable pieces. [00:09:57] Jill Brook: So I have a few questions here. So I guess why and how did you choose to specialize in these extremely complex patients? How is your approach different than the normal doctor? For example, how is your thinking and your tools, and your tests and your treatments different than average doctors? [00:10:19] Dr. Ilene Ruhoy: I always say they chose me. I could speak for myself certainly. I opened up a private practice because long story short, in the academic setting, you don't have a lot of time to delve into history. And history is super critical for these patients because you have to get a really comprehensive and detailed history and you will find the answers there. But in the more conventional setting, you don't really have enough time to dive into the history the way it should be delved into. So I went into private practice, gave it more time, and then I just started to sort of see these common denominators and histories based on the symptoms of which the patients were presenting. And largely exposures. Usually infections, sometimes other kinds of environmental exposures, sometimes even physical trauma like motor vehicle accidents or TBIs and things like that. And they would present with the same kind of symptoms. And over time I started to see the same story over and over and over again. And I realized that there was something here. And I started to research more and started to look into these more obscure diagnoses, these more controversial, at least in my neurology world, controversial diagnoses and so that I can understand more and form my own opinion. And so that led me into realizing that there is something there that these patients were suffering and perhaps there was something that I can do to help. And so that's where I started to find other doctors who were doing what I was doing. And that's what led me to the mast cell group begin with. And that's what led me to the conference in Denver and led me to Dr. Kaufman. And of course the many others on that listserv, I've learned from all of them, on a regular basis. So it led me into that world basically, where then I realized I was gonna devote my career, my time to understanding these patients as best as I can. But the other thing is that I recognize is that where were the neurologists. A lot of these things present neurologically. And so where were all my colleagues, and to be fair, there are actually a handful of neurologists in our listserv and our mast cell group, but that's it, right? So I wanted to then learn more as a neurologist so that I could then communicate it with other neurologists and hopefully, bring them on board so that patients had access to care. Because, I regularly hear that patients can't find a neurologist. [00:12:32] Jill Brook: So in some ways it sounds like you're saying the difference between you and an average doctor is that you took enough time with people to notice some patterns, to realize that it was happening over and that it was something [00:12:44] Dr. Ilene Ruhoy: A hundred percent. Yeah. [00:12:45] Jill Brook: one sad thing is that the average doctor isn't gonna get there because within the normal system, they're just never gonna have the time. [00:12:53] Dr. Ilene Ruhoy: Yes. That is absolutely true by the way. I don't really believe that every doctor does not wanna help these patients. Obviously there are some that just aren't curious enough or just don't wanna be bothered because they're burnt out. I really firmly believe that a lot of it is not the doctor's fault. I think our healthcare system is just broken. And I know there's a lot of controversy about how some doctors behave and how some doctors treat patients, but I think for the most part, everyone becomes a doctor because they wanna help on some level. But the truth is the system doesn't give us enough time, especially a specialist, by the way. In neurology, we don't have a lot of time to dive into history that may have nothing to do, at least seemingly so nothing to do with neurology, right? So there is very limited time to do so. So when I went into private practice, I afforded myself some more time with the patients so that I could understand them more. And then once you start to really understand them more, then you connect with them more. And then you really understand how their quality of life has been impacted. And then you can't help but just really wanna help in any way you can, right? Because you make that connection. And that's what I found had happened to me early on. And so now of course I've sort of perfected. My h and p, my initial visits, right? So I know exactly where I'm going with every new patient. Eventually, it makes it a lot more efficient and streamlined, and that's what I wanna help other doctors get to that point where they're not so like overburdened when a new patient walks in the room, I am no longer burdened by it. I understand them before they even said a word. I understand a lot about them, I should say. [00:14:15] Jill Brook: That's encouraging. Okay. Dr. Kaufman? [00:14:17] Dr. David Kaufman: So I think there were two parts to the question, right? What, how did we start doing this and then how do we do it? Is that right? Okay. Yeah. So as Ilene mentioned if for 30 years, can't believe I'm so old. First 30 years in New York, I started it with HIV in 1980. So literally the start of the epidemic, and without going into details on HIV medicine, It's clear to me, or it became clear to me actually as I left doing that because HIV became so manageable that it had taught me how to think outside the box and to be ready to think about or try almost anything for patients that were desperately ill. Okay. I was not trained to do HIV medicine because we didn't have any HIV medicine in school or in training. And most of the opportunistic infections they had, we were not taught much about. I think back in those days, pneumocystic pneumonia had maybe a paragraph of information in a course, which was a disease that was killing my patients by the dozens, literally. So it it just created a different kind of mind, I think, for me. And then I decided to leave New York primarily, or one major reason because healthcare in New York was really becoming terrible, taken over by hospitals and corporate medicine, and I just wanted no part of that. And I literally gave my practice to another doctor, jumped in my car, packed up my stuff, had no job, and drove to California and basically was recruited for two different jobs. One was medical, which would be just a general internist, and the other was to a practice that did ME/CFS. And I will humbly admit that I didn't know a thing about ME/CFS. I was a typical New York eyeroll or doctor about ME/CFS. I just didn't understand it, I was too busy doing other stuff, so, I don't think I gave it the attention it needed, but I became completely obsessed with it in this practice, and I loved it. It very quickly became clear to me what a complicated, complex problem it was that had causes, if you looked below the presenting information below the fatigue. Okay. So I really dove in and I think one of the things that made such a difference and makes a difference is what Ilene is alluding to. You cannot do this work unless you're able to spend more time taking a history with the patient. That's sort of the dividing line between uS healthcare and complex illness healthcare. And it's the reason that that on our list serve of 400 physicians, probably 90% are not taking insurance and unfortunately have to do a cash practice because they spend two hours. I spend about two hours in the initial visit about an hour before the visit, reviewing all the stuff that gets sent to me, cuz most of 'em have had 10 to 20 years of doctors and illnesses. And then another hour writing the case up and writing all the orders. So if I was a regular healthcare doc, you can't do that. Nobody pays for that. So on the one hand, that's a big negative. It means certain people can't get in because they can't afford it. On the other hand, it's the only way to do this kind of care. And again, to echo something Ilene was saying, I believe, number one, I believe physicians really do want to do the right thing. Sadly many of them are getting burned out or just miserable with their work because of the corporatization and the, the unbelievable criminal role that insurance companies plays in healthcare. And I think they would love what we do because it's really fun. It's exciting, it's interesting. It's the most amazing detective work. It's like being Dr. House every day of the week. It's incredible. I love it and, and I think that's a, a feeling we can somehow communicate to other doctors that would, would be great. [00:18:08] Dr. Ilene Ruhoy: I agree with that completely. Like once you feel like you've gotten your sea legs, and once you feel like you've learned enough and are comfortable and have a level of like, okay, I understand what's going on. It's actually fun. I enjoy medicine more now than I have for a very long time because I feel a sense of control in terms of just my confidence, in my knowledge base, my confidence in understanding these patients, my confidence that I have a good chance of making them feel even a little bit better. I don't pretend to cure anyone. I mean, I think we'll all agree that if there was a magic bullet, everyone would have it. So it's a lot of complex care, not only complex patients, but it requires complex care, a lot of trial and error, but I know there's a good chance that I'll find something that will at least help. And so it makes medicine fun again. It's, it's the reason why we got into medicine. [00:19:00] Dr. David Kaufman: I want to emphasize something you just said. Okay. I think most physicians, when they hear ME/CFS in long COVID and these complex things, Also assume that there's nothing we can do for these patients and that they won't get better. And that's really depressing for most physicians. Okay. It's why it takes a certain kind of physician to go in oncology as an example. Okay? Although they can do things, it's not always very successful. And it was one of the things in HIV medicine. I mean, back in those days, I literally had 10 patients a day in the hospital and 20 dying every month. I wasn't trained for that. So the point I wanna make is that people do get better. Alright? I mean, this has been a particularly great week for me in that I had a whole bunch of patients who really are better. I got a card the other day from a patient's mother, and it was her graduation, an architectural degree at Wisconsin. Her graduation document saying, thank you for letting my daughter go back to school, finish it, it was amazing. And then I had another patient who is a European patient who had cranial cervical instability. Not exaggerating, bedbound for 10 years, living in a sound booth because of hypersensitivity to light and sound, she could not communicate with her children. Her husband was this like Saint who just took care of her, diagnosed her with CCI 8,000 miles away, frankly, because I never got to see her. Brought her in to Dr. Bolengese and yesterday on my call, she's sitting in her chair talking to me, discussing her medications, telling me what she can do. This was a person who could not speak. You get one of those every month, and that's good enough for me, you know? [00:20:38] Dr. Ilene Ruhoy: Yeah, no, for sure. Eh, I was actually in New York this past week with Dr. Bolonese and I did the rounds on his post-op patients, and I can echo what you said. It was a really good week. I was in tears several times because there were two patients in particular that were like the patient you just described who are now like sitting up and walking the hospital floors and in tears telling me about what we've done for them. Their lives are just, completely different now. I mean better obviously. So I cried along with them because this is the kind of work that we do [00:21:08] Dr. David Kaufman: yeah, [00:21:09] Dr. Ilene Ruhoy: why I say medicine is fun again and very rewarding. [00:21:12] Dr. David Kaufman: yeah. It definitely brings tears. [00:21:14] Dr. Ilene Ruhoy: Yeah. [00:21:15] Jill Brook: Wow. And you're just reminding me that when you're a patient and you're feeling so bad, you know, on a scale from zero to 10, going from zero to one, is infinity going from eight to nine or nine to 10? I think that's what most doctors do and that zero to one is just infinite. And I remember it. Yeah. Yeah. So I'm so thrilled that you guys have now created a podcast so that you can share yourselves with physicians, patients, anyone who wants to learn. Tell us about your podcast. [00:21:46] Dr. David Kaufman: So I have to say I was really nervous about this, doing this podcast. wanted to, [00:21:52] Dr. Ilene Ruhoy: of convincing. [00:21:53] Dr. David Kaufman: I wanted to do it because I really want to be able to teach more people and educate more people, and especially physicians. For me, one of the biggest challenges is how do we educate more docs and recruit more docs. Long COVID has made this a crushing critical need. Okay. And I've done some webinars and I've done talks. I'm preaching to the choir most of the time. So when Ilene and I go to AESO meeting and I give a talk or she gives a talk, everybody already knows most of that stuff. They're not learning that much new, I don't think. So this idea came up. Ilene and I tossed it around and Ilene and I had already been meeting. Probably not every week, but pretty frequently. Several times a month we'd go for coffee and our coffee would turn into two to three hours of just talking about patients or healthcare, laughing and interacting and sharing patients and then going, not just outside the box, but off the rails. Okay. So we decided to do this podcast and it's been great. It's literally a conversation. And we just go back and forth. We interrupt each other a lot. Like she said, we're both New Yorkers. We both talk pretty fast. And one way you could say we're all over the map, but on the other hand we're pretty focused for each episode, but it can easily go off, down one road and then back to another road. And that's kind of the way our minds work. And that's the way a lot of this pathology is, frankly. [00:23:10] Dr. Ilene Ruhoy: Yeah, we think of it as people eavesdropping in on our conversations is sort of how we've approached it. And the Patreon page is very interactive, so subscribers who are listening will post questions or comments and that's very helpful actually, because we do go off the rails and we go on tangents because we just can't help ourselves. But there questions and comments sometimes will bring us back. So like on the next episode, we might decide to address a particular question so that we will eventually cover all grounds. That's the ultimate goal. I think it's fun for people to sort of eavesdrop into the machinations of our brain because it's not scripted at all. [00:23:44] Dr. David Kaufman: In the beginning I was so nervous thinking, oh, I gotta prepare for this. Where are we gonna find the time? lately I'm lucky if I know what the topic will be [00:23:52] Dr. Ilene Ruhoy: know, I know. Usually he shows up and he says, what are we talking about today? [00:23:55] Dr. David Kaufman: And [00:23:56] Dr. Ilene Ruhoy: do have topics for episode [00:23:58] Dr. David Kaufman: Right. [00:23:58] Dr. Ilene Ruhoy: that's as far as we go. [00:23:59] Dr. David Kaufman: Which may show, I don't know, maybe our subscribers have something to tell us about that. don't know. [00:24:05] Dr. Ilene Ruhoy: Yeah. And, we've never done this before. We wanna make this work because we want to educate. And we also want to give hope to patients who may not have been able to find doctors who are willing to help them. So we just want to disseminate information, teach, educate, share what we know, share what we see, share what we do and where that goes. I hope only for good. [00:24:28] Jill Brook: That is exciting. And you know what it makes me think about is that famous journal article that talked about 17 years being the time between the average knowledge from new research and implementation in the clinic. And I think of you guys as being the people who are first on the research, first on the knowledge, first implementing it and solid, wonderful findings that the average clinic isn't gonna know about for 17 years and maybe longer in this area because nobody's got time to dig into it. [00:25:00] Dr. Ilene Ruhoy: It's on Patreon which is all we know how to do right now. It is a paid podcast so it's not for free. We have it on occasion, posted a free episode just so people can sort of see what it's like. [00:25:12] Dr. David Kaufman: If they search YouTube as unraveled with your name or the name of the podcast, you'll [00:25:18] Dr. Ilene Ruhoy: right, [00:25:19] Dr. David Kaufman: with a link to the Patreon as well. [00:25:20] Jill Brook: And I seem to recall it's not an exorbitant amount, I think for what you guys are giving. [00:25:25] Dr. Ilene Ruhoy: Right. It's $9 a month and we have been posting every Wednesday, and we will continue to do so for the foreseeable future unless we don't have one for a particular week, but we've been actually really good. [00:25:37] Jill Brook: So can I ask a question about disease clusters? Because you had mentioned the septad which was something like POTS, MCAS, joint hypermobility syndromes, autoimmunity, ME/CFS, dysautonomia, gastroparesis. I might be missing one, but is that a special disease cluster? Like are there other ones that are that big and gnarly? Because sometimes when you're in that disease cluster, it feels like you're just in the biggest, baddest disease cluster of all time. But are there a bunch of 'em, or is this one special? [00:26:13] Dr. David Kaufman: Hmm. [00:26:14] Dr. Ilene Ruhoy: Is the Septad had a specific disease cluster or does it overlap with others? [00:26:20] Jill Brook: I guess my question, are there a lot of other disease clusters? Are there people who have seven diseases at once that are all kind of intermingled and maybe they're all syndromes so they're not that well understood, and is this like a common occurrence? [00:26:36] Dr. David Kaufman: I think a better way to think about it might be to, not say seven diseases, but seven Pathophysiologies. Seven, seven pathologies. Okay. While as I said Andy Maxwell initially, Describe this or talked about it in our, in our listserv. It's since been written about by the NIH people that EDS, mast cell activation and dysautonomia are a triad that's often found together. Right. And that's a really powerful statement. You can leave out the other quartet. Because now if you think about it, if one in 5,000 people have hypermobility, EDS, but they don't have ME/CFS and they don't have long COVID, might they still have some of these other things? i.e. Mast cell and POTS, that is kind of not diagnosed because Jill, as you probably know, so many patients have problems or complaints that fly under the healthcare radar. They just live with it. It's like background noise in their day and they just think that's okay. That's just the way I am. So I get dizzy when I stand up and then something happens, they get a flu or COVID and suddenly that dizziness stand up turns into full fledged POTS and brain fog and hypoperfusion. So I think the point I'm trying to make here is I think there are clusters with other illnesses. It requires the physician to think beyond that single illness. So I'll give another example. I'm to some degree making this up. Okay. Let's say have a patient with coronary artery disease and they have mild, almost subclinical or not yet diagnosed angina where there's not an adequate blood supply when they are active to their heart, and that causes some symptoms. And let's say they are in that group that doesn't get chest pain. They just get a little breathless. They get a little weak in their legs. Well, those are other symptoms. You can think of that as another cluster. Okay? And that patient may go in and if the physician says, well, do you have chest pain when you walk up that hill? The patient says, no. Then suddenly the door is shut on worrying about c oronary disease. But if you take a better history and you say, well, what do you feel walking up the hill? Do you have any problems talking to your wife as you walk up the hill or to your partner? Or can you talk on your cell phone and walk down the street at the same time? If you can't do that, something's wrong. And so in that sense, there's clusters of symptoms. Maybe that's the way to talk about it. I dunno if I answered your question. [00:29:04] Jill Brook: Okay. No, I think you did. [00:29:06] Dr. Ilene Ruhoy: Well, I think when you think about the systems that the septad diagnoses Involve, you can see where there's a whole lot of disease states where those systems would be recruited and so can very well present similarly for different disease states, right? I mean, take the mast cell for example, mast cell activation syndrome. Mast cells are the first responders, they're to protect our body, to fight off anything that's attacking us. No matter what it is, right? So there's a lot of different things that we can be attacked by that the mast cells will be recruited. And so you can easily then evolve into a mast cell activation kind of picture, and it might be from a different pathogen, from a different exposure. Like I said earlier, even physical trauma can recruit mast cells, other kinds of inflammatory damage, autoimmunity even. Which is sometimes secondary to chronic mast cell activation, but sometimes it's the provoking event for mast cell activity. So if you think about all the septad diagnoses and what they consist of, you can very easily see where they would all be somewhat involved to some extent or another in other kinds of diseases. [00:30:13] Dr. David Kaufman: Exactly [00:30:13] Dr. Ilene Ruhoy: Yeah. [00:30:13] Dr. David Kaufman: it's so much better than me, Ilene. exactly what I was trying to say. Thank you. I felt like I got so lost in that. [00:30:19] Dr. Ilene Ruhoy: You said it very well. I was just echoing you. [00:30:21] Dr. David Kaufman: Let me add I don't wanna oversimplify this. Okay. We're talking about septad in a way because it does keep it simple initially in terms of making a roadmap, but everybody should understand that within these septadelements, it's pretty complicated. So if we say chronic infection, that could be viral reactivation, it could be Lyme disease, it could be Bartonella, it could be a fungal infection, it could be mycotoxin illness, or all of those combined. All right? And similarly, gastroparesis can be small intestine, bacterial overgrowth, leaky gut, chronic constipation. It's a question of taking each element in the septate and then teasing it apart. And patient A might not have everything, but patient B may have an overwhelming example of everything, and it's [00:31:07] Dr. Ilene Ruhoy: Mm-hmm. [00:31:07] Dr. David Kaufman: to understand that. [00:31:08] Jill Brook: When I think about the septad, I think about, basically a bundle of intertwined problems and some of them seem a little bit more easy to start addressing than others, and maybe it's because I'm not equally familiar with all of them, but for example, the mast cell activation syndrome, I feel like, oh, okay, if someone's got that, there's some obvious things to try. When you think about the septad do you think about certain pieces of it that are easier to start with. And then are there ones where even you are like, oh man, that part of the septad is just so hard that nobody knows what to do about that. Like, can you talk about which parts might be like the easier or tougher to address? [00:31:55] Dr. David Kaufman: Sure. So Ilene's heard me talk about this as have my patients endlessly. I, I think that the major, major, major drivers of illness in most of our patients is their POTS. Meaning and aka hypoperfusion inadequate flow of blood to their brain, core and muscles and small intestine bacterial overgrowth and the leaky gut that it causes. I'm just convinced that those two pathologies alone drive a huge portion of the morbidity seen in our patients, and they are 100% treatable. 100% manageable. And if you can fix those, now you have a patient as you put earlier, Jill, who goes from zero, not to one, but maybe zero to four. Now we can go after the mast cell activation and the chronic infection and Do they or do they not have CCI and things like that? And as a concrete example I have many patients where I will diagnose in my head anyhow, tickborne infection or E B V reactivation on the first visit, meaning I, I'm pretty sure, but now I have to prove it. Okay? Then I prove it with lab tests. But I will not treat them yet until we get their pOTS and their mast cell activation and in this case and their SIBO controlled because they won't tolerate the treatment, be much more difficult. [00:33:19] Dr. Ilene Ruhoy: I agree with David. I often just start focusing on the POTS diagnosis, the mast cell diagnosis, because they really can be easily treated, or at least there are easy things to try first that potentially can treat those symptoms. They absolutely low hanging fruit. That's a perfect way of describing them. I think though that, and I think David would agree, we see so many complex patients who have connective tissue involvement, that there are anatomical diagnoses that are just contributing, if not perpetuating the problem. And so all of the medications in the world, And David and I often say this line will not correct an anatomical diagnosis, right? So I can give all these meds and I've got patients who are on 10 to 15 different medications, but nothing is going to correct the anatomy once it's out of alignment. And once it's become pathologic, right. So a lot of really great physical therapists, especially those that are EDS literate, a lot of great rehab docs are really good at sort of realigning certain parts of the anatomy and it gives patients relief. It's just not sustainable. And so when there's been chronic misalignment and now the connective tissue is just sort of shot I tend to wanna focus in on that sooner rather than later because that's my only way of really getting traction, no pun intended, in terms of getting patients better. Right if I start addressing what the anatomy is telling us in terms of how it's contributing to the patient's presentation. So I tend now, these days, while I definitely start with the mast cells and I start with the POTS and I start with certainly any kind of gastroparesis and even some fatigue I might start to address. I am always thinking about, all right, let's start like looking at your anatomy. Let's start getting imaging. Let's start looking at what might be going on. [00:35:01] Dr. David Kaufman: I want to emphasize what Ilene is saying and, and maybe even get a little more specific. So I'm gonna go at, I have gone out on a, Risky limb lately with patients and I think I may have even said it in one of our episodes. I'm at the point where when I accept and see a hundred percent bedbound patient, I start from the position that they have cranial cervical instability. I am convinced and I have now so many patients where that's been proven. Okay. And when that's the case, My approach is exactly what Ilene's saying and I tell the, usually the family, cuz the patient can't even talk to me. Look, I can do some things to fix some things, but at the end of the day, it's really not the problem. The problem is you need to go to the operating room and I need to convince you of that because all the meds in the world are not gonna fix this anatomical problem. And I want to emphasize for me to say something like that, as an internist of 40 years of career. Internists are trained to keep people away from surgeons. There's nothing worse than me referring to a surgeon, and yet now I find myself referring to, to a surgeon once or twice a week. I mean, this week was another great example of that. I have another patient in Europe, again, a hundred percent bedbound, and I told the family in this call yesterday, She has terrible mast cell activation syndrome. She's on tpn. She can't eat or take anything by mouth. It's a disaster. And basically I said all of that's true, but until we figure out a way to get it to New York, I don't think we can fix her. And I haven't even proven it yet. [00:36:35] Dr. Ilene Ruhoy: but but that's been our experience. so that is the benefit of the fact that we have seen so many patients over so many years. Right. So, I think that in terms of our assumption or our assessment without even the proper kind of workup I think holds weight just because we've seen it so many times and I regularly tell that to patients, we're not just sort of pulling this out of the air. [00:36:58] Dr. David Kaufman: right. [00:36:58] Dr. Ilene Ruhoy: We have seen many patients like you. [00:37:00] Dr. David Kaufman: Let me add to that. So that's the first group is the bedbound patient. The other group related to this anatomical issue is the following patients who are not bedbound, who I've taken care of for a significant amount of time, meaning usually years and I've done everything possible and they're still sick. They've maybe gone from a four to a five. Okay. What I have learned is that those patients, I need to start all over again and look for their connective tissue disorder in the cranial cervical instability or tethered cord. And either I'm an idiot and I missed it in the beginning or what I actually think I might be an idiot. But what I think is happening is that over those years, that chronic inflammatory situation from all of these different other six pathologies has further damaged their connective tissue, and now the problem is anatomical. [00:37:55] Jill Brook: Right, right, right. I always remember again, Dr. Andrew Maxwell's amazing online presentation about the embryology of, I think the pentad is what it was called cuz we didn't know about the septad. But then by talking about how mast cells have some mediators like elastase two that can break down the collagen. And [00:38:18] Dr. Ilene Ruhoy: they do. Yeah. They have. They have. And the proteases. Yeah. So they're actually a major source of certain proteases that target collagen fibers. So we do know that the mast cells contribute to the degradation of connective tissue, which is why sometimes we think it's an acquired hypermobility syndrome and not necessarily a congenital, which is what Ehlers Danlos, would imply cuz those are genetic syndromes for the most part. I mean, we're learning, and this is sort of this, exciting new area of connective tissue dysfunction. And what many people don't realize is that many autoimmune disorders historically have been referred to as connective tissue disorders. I mean, even the common ones like lupus and Sjogren's and rheumatoid arthritis, so we know that. [00:39:01] Dr. David Kaufman: in medical school. They're still called connective tissue disease [00:39:03] Dr. Ilene Ruhoy: there's, yeah, Exactly. Exactly. But at least in my opinion, we no longer acknowledge how important the connective tissue is and the role that it plays in the structure, alignment and the functioning of our entire body. And of course, it houses many mast cells, right? So there are connective tissue mast cells, and so then you start having mast cell activation and hypersensitivity of these mast cells that are constantly de granulating and releasing all of these enzymes. Then it's just a, a recipe for disaster. And so our goal is to manage all of that, prevent its progression as best as we can, but then fix the damage that's already been done. [00:39:40] Dr. David Kaufman: Since we're talking about things that have been forgotten, like the connective tissue name for autoimmunity. The other thing with autoimmunity is back before we had a hundred thousand dollars a year biologics. In the world of rheumatology, it was well accepted that most autoimmune illnesses were caused by infection. That's been lost, except in our population of patients. It is absolutely what we see over and over and over. If you look hard enough, you'll find infection. You'll find evidence of reactivation of E B V or reactivation of Tickborne infection, reactivation of Borrelia Lyme disease. So I, a key piece to just keep in mind. The other thing I want to say, and I don't think we've talked about this, Ilene, there's a sort of paradoxical situation that comes up in patient care for me. I'll have a patient. This is referring to the second group of patients I mentioned where I'm treating them and treating them and then we're just not getting anywhere. Okay. So I'll treat their POTS and I'll make some progress, but I can't seem to get them better as, as better as I want them to be and as they need to be. And then we end up making a c c I diagnosis with brainstem compression. And I sit there and I talk about how that's causing their autonomic nervous system dysfunction, except in the beginning they didn't have that happening. Right? So this is very, I dunno if paradox is the right word. They have an initial dysautonomia that's caused probably by autoantibodies. But if they're sick long enough, their illness progresses to connective tissue fragility and CCI and brainstem compression. And that now is the driver of their dysautonomia, because that's where the autonomic system sits in the brainstem and all the drugs in the world are not gonna get them better. So it's like, it's the same phenotype, but turns into a different cause. [00:41:29] Dr. Ilene Ruhoy: Mm-hmm. [00:41:29] Dr. David Kaufman: the way to say it. it's [00:41:30] Dr. Ilene Ruhoy: Yeah. [00:41:31] Dr. David Kaufman: very confusing. [00:41:32] Jill Brook: Yeah, what a dynamic situation and so fascinating and this is why I'm definitely gonna get on Patreon and listen to another 20 hours of you guys talking about this because yeah, it's absolutely fascinating and I really feel like you guys are just decades ahead of anybody else. And I wanna be really respectful of your time. I know how busy you are. Do you have any final thoughts you'd like to share, either in terms of what you wish more doctors knew about complex illness or why they should get interested in treating patients like this? [00:42:09] Dr. David Kaufman: Well, I think as we both said earlier, I think it's totally interesting and fascinating. It's kind of why I think most people go to medical school in the beginning, but they kinda lose sight of what their goals were because of the nature of the training. So much of medicine that the physicians are driven into silo thinking where they're just gonna be a cardiologist or just be a neurologist or just be an endocrinologist or just be an internist and that's not what their original intent was. The, as Ilene said, the original intent was, I want to take care of people and see if I can help, and this is an opportunity to do that. And there's no silos here. That's one of the [00:42:45] Dr. Ilene Ruhoy: There's no silos. no and, and right, and yeah, it is so true and it's motivating because when you don't have the silos to work within, it gives you the motivation to sort of second guess everything that you thought you knew that you were trained to learn, that you were trained to do, that you were trained to think the perspective that was just sort of ingrained in us during not only medical school, but residency and fellowship. Like it gives you this freedom to sort of second guess, maybe that wasn't true. Maybe that's wrong, you know? And um, it's liberating. It's liberating. And again, in the end, it's all about the patients, right? So liberated doctors who feel free to question, who feel curious and want to do more and learn more, then the patient ends up benefiting. And that to me is a win-win situation for everyone involved. [00:43:33] Dr. David Kaufman: So let me just say one or two more things. So one of my anxieties about doing the podcast was that I have no room for more patients. I'm overwhelmed, as is Ilene. And I was concerned that this would just make the phone ring constantly and my office staff would have to say no, he's got a waiting list of 10 years or whatever, you know? So secondary to that anxiety was, let's see if we can figure out ways to educate and recruit doctors. And one of the things I hope comes out of this and out of any talks we do is that this is not that difficult. Okay? It doesn't take a lot to learn how to take blood pressure in a standing position for 10 minutes. Okay. And the other thing I wanna say, and I'm gonna say this in contrast to the HIV years that I worked, And this is kind of mundane, stupid statement, but the internet has changed everything. Okay? I am an internist, but I have learned so much endocrine and infectious disease, and you name the specialty, okay? By simply going online and searching a term. It's unbelievable. In the middle of an office visit, I can double check something. Alright. I had a call today about antibiotics. I wanted to check on what's called a plasma level in literally 15 seconds. So it's that easy. So any physician can go online and look up the word POTS and really find out what it is. Very quickly. I have a lot of patients who say, my doctor won't give me low dose Naltrexone. It's right online. It's so simple. They just have to be willing to try. lot of time. [00:45:03] Dr. Ilene Ruhoy: believe what they read. Right. [00:45:05] Dr. David Kaufman: right. [00:45:06] Dr. Ilene Ruhoy: lot of times they'll read something on the internet and still roll their eyes. [00:45:09] Dr. David Kaufman: I think what I'm trying to say is, [00:45:10] Dr. Ilene Ruhoy: ai, AI [00:45:11] Dr. David Kaufman: Oh, just, yeah, so I, what I'm trying to say here is that the internet and search engines and now AI can further transform the care of complex illness patients overnight. [00:45:24] Dr. Ilene Ruhoy: Yep. [00:45:24] Dr. David Kaufman: and it opens up to all physicians if they have even a little bit of interest. [00:45:28] Jill Brook: And then your podcast does so much curating of that information that it gets even easier. I think it's beautiful that you're offering to share what you have learned and make it easier for the next generation. [00:45:40] Dr. Ilene Ruhoy: Well, the caveat is that we filter everything, so it's through our filters. [00:45:45] Dr. David Kaufman: Which is a good reason to bring on some other people. [00:45:47] Jill Brook: Well, Dr. Kaufman and Dr. Ruhoy you guys are amazing. I cannot thank you enough for taking the time with us today and for working so hard to understand and to help. Just the most complex of the complex. So very much gratitude to you. [00:46:04] Dr. David Kaufman: Thanks for [00:46:04] Dr. Ilene Ruhoy: you so much, Jill. This was fun. [00:46:05] Dr. David Kaufman: Yeah, it was fun. Thank you very much. [00:46:07] Dr. Ilene Ruhoy: Yeah. Thanks for inviting us. [00:46:08] Jill Brook: Oh, good. Okay, listeners, that's all for today, but we'll be back again soon. Thank you for listening. Remember, you're not alone, and please join us again soon.

Other Episodes

Episode 148

June 24, 2023 00:32:27
Episode Cover

E148: POTS Diary with Nicole from Texas, news reporter who got a POTS story on the Today Show

Nicole's career as a news reporter in Anchorage, AK and Raleigh, NC was cut short when she developed POTS. While her symptoms have improved...

Listen

Episode 104

December 20, 2022 00:56:12
Episode Cover

E104: Understanding myalgic encephomyelitis/chronic fatigue syndrome through research and personal experience with Dr. Leonard Jason

Dr. Leonard Jason, world renowned father of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research, shares his very personal story with this illness along with what...

Listen

Episode 88

September 27, 2022 00:52:08
Episode Cover

E88: Three Types of POTS with Dr. Cathy Pederson

Many like to think about POTS as having three subtypes - hyperadrenergic, neuropathic, and hypovolemic. We discuss these subtypes, their causes, associated symptoms, and...

Listen