207 - Dr Nathan Keiser - Stop Chasing Labels, Start Fixing Mechanisms

We explore a mechanism-first approach to Long Covid & ME/CFS, shifting from labels to measurable neural and vascular bottlenecks that can be retrained. We share how to use dose, recovery, and sleep consolidation to build capacity through precise, small inputs that compound over time.

• reframing diagnosis as a map to mechanisms, not a label
• why cerebral perfusion and autoregulation drive symptoms
• concussion lessons that translate to Long Covid recovery
• structural vascular traps and simple tests that reveal them
• pacing versus targeted micro dosing for plasticity
• using DIY tools as experiments with clear signals
• breathing, CO2 balance, and baroreflex sensitivity
• reading feedback, spotting plateaus, shifting bottlenecks
• linking progress to recovery capacity rather than feelings

Links:

www.keiserclinic.com 

https://www.youtube.com/@dockeiser

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

Meet Dr Nathan Kaiser

Jackie Baxter 0:56

Hello and welcome to this episode of the Long COVID podcast. I am delighted to be joined today by Dr. Nathan Kaiser, who is joining me today to talk about his approach to long COVID, but also from this perspective of neurology, autonomic physiology, to help people with all sorts of these complex or certainly misunderstood conditions that come under this kind of bracket of uh difficult illnesses. So I am so excited to hear more about um how you work, what you do, uh how we could help people. So a very warm welcome to the podcast today. It's lovely to meet you.

SPEAKER_01 1:40

Thanks a lot. I really appreciate it. It's a pleasure to be here. Um yeah, let's get into it.

Jackie Baxter 1:45

Amazing. So to start with, would you be able to say a little bit more about who you are and what it is that you do?

What Chiropractic Neurology Means

SPEAKER_01 1:54

Absolutely. So um my name's Nathan Kaiser. I'm a doctor of chiropractic neurology, which is a weird thing. We can get into that in a minute. Um, but uh I have been practicing this in my 17th year, and we've mostly focused in helping people with neurological injury, which obviously uh in the last you know five years, six years has um folded into your main topic of interest in this COVID world. And um we've helped over that core time period um thousands of people be able to get their life back specifically around autonomic conditions. Um we say autonomic as a as a bucket, as you know, people talk about dysautonomia, and there are certain diagnoses within that, but we actually um do so the the unique part of what we do is probably going another step deeper into understanding rather than classifying things based on a syndrome, collection of symptoms. We think about it in terms of the mechanism, like what is what is actually the departure from health here and how can we measure that? And then that gives us an entree into then figuring out, well, then how do you how do you fix that problem? And it's just a little bit, it doesn't seem like a big change, but it is it's a significant different approach because it helps us to be able to think about all the myriad tools that are available to to help people. But um, as you've probably experienced, a lot of times it's just you're kind of grabbing on a tool and say, is this gonna work for me? Um, rather than being able to figure out, well, what is the exact problem I'm trying to solve? And then let's solve that. And then I can use whatever tool I want that fits that project. And um, that's kind of been the thing that that we try to try to focus on in the world and try to share with people so that uh they can have that moment of, oh, maybe, maybe there's more to this, especially for people that are that are kind of stuck or finding that the tools they're using aren't quite getting them where they want to go.

Jackie Baxter 3:50

Absolutely. And it's like it's that idea of you know, a diagnosis is only useful if it gives you like answers as to what you can actually do about it. Um, and I think, you know, long COVID is obviously a term that has brought a lot of people together and you know, that kind of feeling of validation and and that which is very, very important, particularly when you're feeling very isolated, which you often do with these conditions, but it's not useful in terms of it doesn't tell you what is going on, um, which kind of comes exactly to what you were saying, you know, getting to the roots of what is actually going on in someone's body to then be able to understand, okay, what do we do about this? Um before we continue, partly from my own interest, and I'm sure everyone else is wondering as well, what on earth does chiropractic neurology mean?

From Concussion To Long COVID

SPEAKER_01 4:42

Good. I'm glad you asked that question. It's it's never come up before. No, I'm just kidding. Um, so I have my initial training is as a chiropractor. So my licensure is as a chiropractor, but my specialty is in clinical neurology. So the same way you'd practice, you know, a medical doctor would practice clinical neurology in kind of a framework around using medication. Um, same idea, but with a with a different concentration on thinking about neuroplasticity as the main language that we're speaking through. So um kind of using native stimuli rather than exogenous stimuli, meaning um like this body and system has been around way longer than we understand the chemistry of. Even most of the chemistry interventions that we use, we mostly don't understand. Uh, and that's not to be harsh or mean to anyone. It's just kind of the reality. And everyone does everyone does an intervention from their place of of expertise and and a heart full of help. Um, but just that little bit different application of the same knowledge base. Let's just kind of think about things in a non-surgical, non-pharmaceutical sort of methodology that has actually been really helpful in this particular demographic. We I actually started to give you a little bit more of my background. Um, most of the work that I did early in my career was around concussion, head injuries, things like that. And so that is the where I lived for several years. And then, but there's this overlap. So when you look at concussion, there's this glaring reality that people that don't recover, a huge percent of the percentage of them actually have these autonomic type constraints, right? So high heart rate being associated in over 80% of people that don't recover from concussion, um, you know, changes in blood flow kinematics, in cerebral autoregulation. So these things were things we already were working with from that perspective. And then, you know, got good at that, and then people started to ask, like, well, what about this? And so we started seeing people that were having postviral illnesses and you know, sequela from the swine flu, and you know, mono and epstein bar, well, mono epstein bar and Lyme, like all these things that were obvious, like brain injuries, as you'd put them, um, but from just a different perspective. So the brain was injured in a different way, but the underlying um the underlying tool to be able to solve that problem was still around figuring out what's happening descripty in the brain and how do we, how do we stimulate those areas in a way that allows them to get stronger again? And I think most of the time we, when we think about brain, like if you picture it, uh most people are thinking about it as just kind of like one structure, a black box, and it's just like the brain. It's all just the brain. Um, but uh we don't think about it that way. We think about it in terms of how all these pathways work together, kind of like a rail system or um like a power system. And they all have to work both in parallel, so they're working at the same time, but then dynamically as well. So you have all these systems that are kind of linear, but then they are all connected to each other in this giant web. And if we can think about it that way, then it's easier to see like where do things actually break down within those loops. And the same way you might think about training, you know, if you're trying to get a muscle stronger or you're a cellist, right? Yeah. So if you're trying to learn a musical instrument, right, same idea is you're you're learning these patterns of sensory inputs that go in, movements that come out, and then being able to coordinate those in a way to where it becomes plastic or permanent. And the same way you might think about, I've never been a cellist, but if I were thinking about it, you're training both a motor pattern, two hands, same time. That's tough. But then you're also thinking, so you have sensory inputs that tell you am I on the strings in the right spot? Do I have the right shape? Am I maintaining the rhythm? But then I'm also correlating that or I'm calibrating that to the sound I'm trying to make. So you can tell if you're off pitch or if you're off rhythm, wrong note entirely, wrong song. And so we have this system that's beautiful at this multi-sensory processing. So it's actually taking in multiple things at one time and turning them into an overall picture that we can work with. And so when you look at things like we're talking about with long COVID, but really anything that affects the brain, one of the things we have to be very aware of is how this multi-sensory system is both taking in inputs, how well it's processing it, and then how it's how well it's able to generate the output that it's supposed to generate. And um, so if you think about it in that framework, thinking about things as a learning experience, as I'm trying to relearn a subject, allows you a much bigger palette of paint to color with because you're just trying to figure out how do I stimulate this system at a dose that is appropriate for this particular person, and then how can I scale that? And it's the same as you would learn anything else. And that's that's uh I've I've lost my way in the original question, but but that kind of is a quick summary of how we think about uh trying to solve these types of problems.

The Brain–Body Loop Explained

Jackie Baxter 10:10

Yeah, I I think you probably just answered my next three questions anyway. So, you know, you've just saved uh listeners um more of my voice, which they'll probably thank you for. Um I I love this idea of um, you know, the the sort of um the visual picture that you just painted of, you know, kind of what the system looks like. Um, because you know, all of those interconnections and railway lines and things, I think um, you know, I mean, and I would say that I was guilty of this as well and start until I started to have more of an understanding of it, I would have thought that the brain and the body were kind of separate. Um, you know, the brain is up here in your head, and the body is down here, and your brain thinks, and your body does, I suppose. You know, I'd never really thought about it too hard. And then, you know, we start talking about the nervous system. Well, the nervous systems in your brain and in your body, how does that work? Like they're connected and like, you know, that you you well, certainly for me, everything turned on its head when I started to understand kind of the connections between it. And um I think there can often be miscommunication or misunderstanding as well, because I think certainly there can be this feeling of, you know, if we're talking about the brain, we're talking about the nervous system, that often it can be misunderstood as your condition being all in your head. And, you know, you you mentioned earlier that your work started in brain injury. So, you know, if you have long COVID, your brain is broken and it's all in your head. Um, and um, I would love to hear you kind of unpick that one. Um, you know, that uh that you know, it's it's not all in your head, but it yeah, take take that one and run with it.

It’s Not “All In Your Head”

SPEAKER_01 12:01

Yeah, absolutely. So I think a good place to start from understanding that is looking at people that have had like for me, the story goes back to head injuries, concussions, and you see these people who most of them are athletes, a lot of them get paid to be athletes, or you know, high school kids, or or people that are at very vibrant times of their life, which I'm sure you've experienced. And and so everybody when they come in, there's this like, I'm not me anymore. This isn't me. And you know, parents will be showing videos of them on the soccer field, or you know, you're watching highlights from ESPN or all these things. But the person that you see in front of you, I mean, you teach these things as well, but you just see this kind of dejection or state change that happens with people, and everything slows down and your mood changes, and you're, you know, you might develop apathy. You know, I don't care, I'm depressed, I'm anxious, but it's not that state of you that you normally kind of feel like you you represent. And then you we would see that over the course of working with people, you could measure on one hand, like like look at these improvements that are happening in the brain function here, but then you also start to see it in the in the state change of the person. And early on, I kind of was taken by that, and that was magical to me, even though I've been trained in all these things and and and knew it, but seeing it was different because seeing it was like watching a person come back to life, you know. You see, you know, women start to, you know, do their hair again and wear makeup again and start to, you know, be feel like themselves. And it made me think back to in high school, I was like super gym rat. I loved to be in the gym and work out and was you know athletic, and I loved all those things. And I had a friend who was very tall and very thin and kind of wimpy, and decided one day, like, I'm gonna start lifting weights. I was like, that's great. So we did it together, and like to watch how fast his body changed, but then like the confidence and his grades got better and he just got more calm. And it made me kind of it all at once made me think about like how these things you cannot separate them. The same way anybody who's had who's had children knows they will cry when you have a little little one, they will cry when they are hungry, they will cry when they are tired, and then that never changes. So when we're adults, we can still get hangry, we can still start to, you know, get a little maybe you know, boo hoo-y at night when we're tired and we just our affect isn't the same. And so if you think about that on just a level of like the things that we experience physically, the things that we experience emotionally, behaviorally, cognitively, you can't untangle them. They are all part of the same machine. And so you they cannot exist outside of each other. And then you can also witness that when you look at people that have different movement disorders. So a common one is a dystonia. I don't know if you're familiar with that, but where you see angulations where people's muscles kind of get stuck. And so the muscles being stuck, you're you're getting a constant signal, right? So it's firing all the time. But then you also notice that people that have that dystonia are also more likely to have rumination or perseverative thoughts. They can't get a thought out of their head. So the same way that muscle is just firing, firing, firing, firing, that thought just keeps firing, firing, firing, firing, and they can become correlated. And so then you kind of extrapolate that out and you look at, you know, something like we're experiencing if you've got long COVID or or kind of anything in that realm, um, you see these alterations in the ability to be able to provide normal fuel to the brain. And if I can't provide normal fuel in that system, I'm going to have like very obvious, predictable changes to that. So if I can't fuel a neuron, I'm not gonna, it's not gonna operate as well. I'm not gonna be able to use whatever that function is, is not gonna operate as well. And you can see that in the studies where we see um the massive changes in cerebral perfusion that come with that. That's a big part of what um we look at from a marker perspective, and um, and being able to kind of understand how do we backtrack that and and rebuild the system again so that these things across the board, well, maybe what you're experiencing is like just a profound depression or an anxiety or even tremulousness. But somebody else might experience that as like, I'm very dizzy or it's very I'm achy all the time, or I can't see, or I'm foggy, whatever that is. So depending on where those territories in the brain are that are affected, or if it's global, then we're just gonna have different experiences of that. But that different experience, sometimes we're trying to lump that into a category based on the experience rather than trying to understand what is physically going on underneath it.

Jackie Baxter 17:44

I love that. And it's like this this idea of us being, I don't know if the word holistic is a bit of a buzzword, but you know, we we are, you know, holistic beings, aren't we? You as you said, you can't separate any part of us from the rest of us because it would be like chopping off a limb, which, you know, I would imagine is severely uncomfortable. Um, so you know, you you in the same way that, you know, nutrition and hydration and the way you breathe and your brain and your nervous system and you know, everything that you just mentioned, it is all so connected, um, which, you know, makes the whole thing incredibly complex. But the way that I have seen it in people I've worked with and people who I have interviewed who have recovered is that it means that there's also quite a lot of different ways in for different people, depending on what kind of resonates with them or what is available to them, depending on, you know, their location, their environment, you know, what they're capable of doing, you know, physically as well. So it's um, I suppose in its complexity, it also has a lot of potential options, which to me feels quite empowering, even if it is a bit of a sort of um octopus with extra legs, um, so to speak.

Blood Flow And Brain Fuel

Pacing, Dose, And Plasticity

SPEAKER_01 19:08

Yeah, that's the part that makes it great, is exactly as you said, is that there are multiple entry points. And so, you know, I think a thing that's really useful is then to consider like, so if we've got a certain amount of energy to spend, then we should probably consider like we should spend it in the way that is most we get the most leverage on. And so you'll find that you know you end up trying a lot of things and some things don't work and you don't know what to pull out. But if we can give people clarity on what is the exact problem we're trying to solve under this, then you can devote resources. So, like we think about one of the main problems, especially in the COVID world, is this problem with um cerebral hypoperfusion or changes in blood flow in the brain. And so we use we use a Doppler ultrasound, and that helps us measure blood that goes into kind of the the middle cerebral arteries, so kind of from the front of your neck and the carotids up into the brain, and we can measure changes in that cerebral perfusion, which is really, really helpful. And we can see changes that happen, especially with a tilt test. That's super obvious. As you know, a lot of people experience differences with being upright uh in orthostasis. So being upright, we can see that change, but that helps us understand the difference between someone who has a problem with maybe cerebral autoregulation, which is just a simple reflex in the blood vessels in your brain. And so people talk a lot about um endothelial dysfunction, and that has become a really common word, but it's a word that I think people just we don't know what it means. And for a lot of people, what that endothelial system does is it largely acts as a signaling system. So it's a way that the vessel can then talk to the area that it's feeding. So if you have a neuron, that neuron interfaces with the glial system and the astrocytes, and they have this network of communication that happens. And the endothelial system is where that's where you are you are actually interfacing with the blood supply so that you can have that communication. And you have two main ways. You can have like pressure against that wall, just lets you know there's more blood coming in, and you just have simple reflexes that happen without anyone thinking about it that if there's too much coming in, you'll just constrict a little bit and try to keep keep the amount of blood flow stable. And if the amount of blood flow is going down, we'll dilate a little bit and just to keep it stable. So normally we should have the ability to be able to regulate the blood pressure in your brain. Whether you are sprinting down the road and your blood pressure is super high, or you're at rest or even sick and that blood pressure is super low, it should all be a sustained blood flow throughout the whole process. But what we see, particularly in people with long COVID, with POTS, with orthostatic hypotension, cerebral hypoperfusion, all of these kind of constellation of symptoms, MECFS kind of gets lumped in there, even though they all kind of, it's a little bit of a crossover in the Venn diagrams. But um, but in all of these, that ability to regulate blood flow matters because everything we then think about in terms of how are we going to stimulate the brain? How do we get it stronger again? All these parts that help us actually create that strength again, if we don't have that underlying layer of can I get fuel there effectively, it doesn't work. And and I think that that part really matters because this is where um that conversation gets heavy into, you know, do we train people? Do we pace people? Do we uh hyper-rest people? Where does that fit? And that whole conversation is kind of like it's not, it's it's not that. I mean, I understand you kind of look at like pacing just means I'm gonna do less than than exceeds my metabolic capacity. But at some point, that has to be enough to stimulate activity. And normally, the nor in normal conditions, you'd you'd mentioned that you had an experience where there was a difference between like doing something as an optimal, healthy human being and someone who's trying to regain their health, those are different dosages. That's a different, different Goldilocks there. And so the same thing applies where if we think about well, we want to do radical rest or we want to do, you know, hyper hypertrophic like exercise, those are two very different things. And for most, People, there is a spot somewhere in there that is the right spot for them, that minimum effective dose. And that's kind of where pacing gets you. But that's that's largely done as an overall, like a macro, like a global concept, right? So, like me as a whole person, I can go to the grocery store for X number of minutes and then I'm done, right? But what that doesn't take into account is like, well, maybe I actually just need to do this little exercise for this territory of my brain, which might mean I'm I need to move my hand over here or move my eyes this way. And that actually stimulates this area that is bottlenecking the whole system, so that I can just take all of that exercise that, you know, if I use my whole body and go do something, if I focus all of that here, I can close that gap a lot quicker. And I'm taking that energy and I'm focusing on what's the matter. It's kind of the analogy we use is like if you sprain your ankle, you're gonna probably, if you're trying to rehab that ankle, you want to walk again, you want to do a marathon again, you're gonna do things that make that ankle more stable and then make it stronger and then start to put it under load. You're not gonna just like continue to do Olympic weightlifting hoping that your ankle also gets better. Um, you're gonna do things that are targeted. And I think when we talk about that macro, we get lost in that macro instead of focusing on what is the exact problem I want to solve, because I can actually redirect all of my energy there. I can change the gap in that bottleneck and I can move faster, which then allows you to have more of the gray space as you continue to go up. As you know, it's it's brutal when you don't know what is causing it, right? So it's like I was outside and I felt good for a little while today, and then a car drove by and I don't know what happened and I tanked. And you're like, a car drove by? You're like, yeah, a car drove by. And then people think like, well, they've lost it. But it's you know, it could be that that visual motion talking to this part of the brain was just enough to deplete that system and then start the cascade. So um, I really think that that underlying structure of looking at can we get enough fuel there? And then can we target what we're going to do from an activity level specific to the area that needs to that is limiting the rest of them in a way that the dosage allows them to be able to input the dose and then to be able to create the plasticity that generates learning. Now, now we're on it. So another way I know I said a lot of words, but another way to think about it is like you played an instrument, you probably didn't start out playing the most complex. You probably didn't start out like the two cellists where they're like playing ACDC thunderstruck by ear. Like that's probably not how you started. You probably started with like scales and then you feel like your hands are weird, and where does it go? And so you have to start with where it's capable, but if you just go up piece by piece and scale, then then that tissue can start to conform. It can start to be able to do a bigger load of getting the right resources there on time, and it can do more and do more and do more.

Jackie Baxter 26:48

Exactly.

SPEAKER_01 26:49

That was a lot of people.

Jackie Baxter 26:50

No, not at all. And you know, I I think you know, it's it's useful to have examples because you know, we we relate to them. Um, some people can't picture what's going on in their own brain. Um, but having an example, I think, is really, really helpful. And you know, I think you've basically just solved music teachers' dilemmas from years and years, years there. You're also taking me back to my is that how you started?

SPEAKER_01 27:16

Were you just trying to play ACDC by years?

Jackie Baxter 27:18

I was totally a child prodigy, absolutely. Um I I think, yeah, you're you're definitely taking me back to traumatic years of teaching people how to play Twinkle Twinkle Little Star. Um maybe, maybe places that I want to go back to.

SPEAKER_01 27:33

Yeah.

Micro Targets Beat Macro Effort

Jackie Baxter 27:35

Um But um, you know, I mean, I I love that, you know, you know, everything is a skill, right? We don't wake up one morning having never done anything before, and then we're suddenly good at it. You know, you you don't wake up and be able to play the cello like a child prodigy. Like no one does that. Um, so it totally makes sense that you do have to build those brain muscles. And um, you know, your your example of you know, the car driving past and you crash, like, you know, I I think most people listening will have had, if not that experience, then an experience that is equally misunderstood by the wider world. And I think, you know, it's a perfect example of you know these conditions being so misunderstood because, well, what on earth is wrong with you that a car drove past and you crashed? Like that just sounds like you're crazy. But you know, once you've had that or you've worked with people who do have similar experiences that are so misunderstood, it's suddenly like, okay, well, you know, maybe I still don't understand what's going on there, but I can understand that you had that experience. And then we start to realize that we do understand more about what's going on there, and then that understanding helps to have more idea about what we can do about it. Um, but yeah, I I love I love your chat about the um, you know, the energy exchange. You know, if if we don't feed ourselves what we need, then body ain't gonna work. You know, if you're if your car is out of fuel, it's gonna stop running, right? Um, we've we've all had that experience where we ran out of petrol on the side of the road because we didn't have time to fill up. Um, you know, and that car is not going anywhere until you put that in. And, you know, the the body is far more complex. Um, but you know, all of these different fuel sources, if we don't do these things, then you know, the body will let us know and it will stop functioning in the way that we want it to. So I suppose, like you were saying, it's finding out, okay, well, what what is going wrong here? What what is the fuel deficiency and how can we start to you know unblock or um find a way to refuel that. So um you mentioned that you know there's different things. You mentioned things like HOTS dysotonomia, the um was it cerebral hyperfusion, which I'm probably massacring there, uh, you've mentioned brain injury, you've mentioned all sorts of different things. You're laughing at me because I'm massacring science. Um but um you know the the body can be quite a complex thing. Um, do you see all of these conditions being very similar, very different? Are there a lot of commonalities, or is it really that every single person is totally different? How does that kind of look for you in your experience?

Mechanism Over Labels

SPEAKER_01 31:05

That's a really smart question because I think it kind of points at one of the the weaknesses with the way we've inherited thinking about health. So most of the naming that we used is syndromic naming, meaning it it is a collection of our symptoms compiled into a name so that we can communicate what we're feeling. Because that's really like when you're when you're first there as a patient, the first struggle is like, I've never done this before. I don't have words for what is happening in me. So step one is like, can I acquire some words that I can communicate to someone else so they kind of know what's going on in here? And so for that reason, a lot of those terms that we use that you just mentioned are all ways to kind of get to that. Um, and they overlap, and some of them don't really fit anymore because they came from a prior time, but we still use them, they become culturally popular, and so but they're all just kind of like names that don't really mean a lot, other than to try to describe what we try for me to talk to you about what I'm feeling. But even that, most people with let's call it POTS or even long COVID, they don't feel the same things, the experience isn't the same, and so it really doesn't even serve the purpose very well, even within that. So we bucket people into kind of these arbitrary groups because of you know some of the core features of what they feel. Okay. But if instead we think about underlying that, what is wrong? So instead of going from like symptom to treatment, going from symptom to like understanding the mechanism of what is causing that symptom, and then try to fix the underlying mechanism, that gives us a little more purchase. So when I think about all the things you just talked about, to me, they're all things that kind of have these mechanisms that hub around communication and in two major ways, which are going to be neurologic communication and vascular communication, and then the way they synchronize. So, in many ways, most of what you're describing are actually breakdowns in simple reflexes within the system that we don't typically account for. That's a huge chunk of people. Vestibular reflexes, neurovascular reflexes, oculomotor reflexes, et cetera, et cetera, et cetera. But then there is a cohort of people that actually have problems with communication of the vasculature. So, for example, I turn my head and without knowing it, I've completely disrupted the flow of blood to my brain, right? I've just, I've just structurally compressed this. We see this constantly to the point where at one point we were like, Is it what are what is going on here? Because you see these structural changes, but the catalyst was COVID. But if we have a structural change that you can kind of adapt to, like I pinch that artery partway, but it's still enough to let blood circulate through and I can still get that oxygen to the system, I maybe don't feel that bad. But then if I create an inflammatory load in all of that vasculature, and so if you think about a blood vessel swelling, it's gonna swell on the inside and on the outside. It's gonna fill. So it's gonna make the actual tube that you're sending blood flu through smaller, and it's gonna make your ability to adapt heartbeat by heartbeat harder. So you can take something where the initial problem actually probably was already there years ago, or I had a you know a head injury or a neck injury, but I'm doing okay. But then I do something that constricts that vessel or loses the normal underlying function, and then now, boom, I feel terrible. But in that case, we can do all the things in the world to help that blood vessel out. But if I don't unchoke their neck, then nothing will change. And we had this case, I literally before we got off the phone, my team, we we have this case right now. Um and so you can see when she turns her head, she's dropping blood flow in one artery by 40%. But everybody's looked at it as a COVID problem, which it is. That was a catalyst, right? That was the thing that kicked the beehive, but it wasn't the thing that was going to solve the underlying problem because it was already there. And so I guess like I get really passionate about that because I number one, like have had my own experiences, we've seen it in people, but also because um most of these people are just coming from the prime of their life to a dead standstill, and it's brutal to watch. And and so to me, there's like the reason I do this, I don't have to, but I like to because there's this part of me that really just wants to like wave my hands and be like, we have to look at these other things too, because they're things that are so simple to solve for, but they're completely un unnoticed. Not we're not even not noticing, we're not even looking. And so I guess I'm just here as almost a contrarian voice to say, like, maybe also look at some of these other things too, because there might be magic in that for you. Like that part is exciting.

Jackie Baxter 36:27

Yeah, so it's like what happened before is also really important, um, whether it's something structural like that or whether it's childhood trauma, I suppose, you know, that that maybe I don't know, I'm not sure it would be so it's be so glib to say wasn't a problem before, but you know, wasn't noticeably restricting someone's life in a way that they noticed, but could have caused, you know, yeah, as you said, kick the beehive when on COVID came along. Um, so yeah, I think you know that that history is so important because you know it's it's it's what came before, isn't it? Um I I love that. Um so what I would love to know a little bit about, I know you you've touched on this in some ways with with how we've spoken already, um, but you know what are some things that you sort of do in your day-to-day to help people? And what can people do themselves at home now?

Structural Traps And Vascular Signals

SPEAKER_01 37:37

Let's do them both. So we'll do them, I'll do them separately. So I think I think the part that people would get the most leverage from is actually the way that we are are approaching it, because so often we're we're trying to match a tool to a feel rather than to the underlying. So I would say if you are stuck, it's probably not a DIY solution to be able to figure out what's wrong. But once you do the step of like, we need to really figure out what is wrong, and not just what is wrong, like on the simple ways that are available, but like specifically, what is failing? Um, that's probably the most leverageable step for most people because then once you know, you know, I need to solve this pathway between my cerebellum and my frontal lump, right? So like those things become much easier problems to solve, and then they do become things that we can do at home. But sometimes, like my experience is I only tend to see people that have been dealing with things for a long time, they've already been through a conventional route, they've done what they perceive to be everything, and they are just the type of people that will continue to hunt until they find it. Um, so I think that is probably the number one thing is getting away from trying to fix what you feel and fix what is wrong. And with that, then the DIY world becomes much more useful. So I know you had somebody on that was talking about vagus nerve stimulators. We've had a ton of people wreck themselves with vagal nerve stimulators because that's not the problem. And then they generate a plasticity toward that system in a way that is completely maladaptive, right? And so we take something that's a very simple tool and can be magic for one person, but can be catastrophic for another person. And so I'm not, I am a DIYer myself. I will build a bathroom on YouTube, all of it, right? But uh in this particular realm, in this particular instance, I would say getting very clear about what the problem is is the most useful step. And then on a DIY basis, then you're able to start, then your your aperture really opens up because now you can say I'm trying to solve this specific problem, and it makes it much easier to be able to find the resources to help. And a lot of the people that we see, we're able to send home with resources. We measure them on the front end, we test is this going to work? It's working. Let's go home and do that. Uh, and that shaves a lot of time off the process. So unfortunately, I don't have like a quick hitter for everybody. I think a lot of the things that you've talked about before, you people should listen to those podcasts again, because those are a lot of the things that are amenable, but then you can use them all as their own individual test. And you can say, if I do this at the dose appropriate for me, what is the outcome there? And that can help you lead lead you toward things that are working. So, for example, you know, with breathing, we see a number of people that are already hypocapnic. So hypocapnic meaning like they're already breathing, it's the pH of that system's already off. We're not able to maintain CO2 ratios, and it's not a function of breathing. And so, but we do, we end up breathing them. And as you know, most people trying to do breath work will tend to over-breathe, even if they're trying to slow it down, right? Slowing it down often often turns into just like deep breathing. And that deep breathing with the becomes hyperponic, you just blow off too much and then you make it worse, and then you feel tingly and anxious, and away you go. And so tightening that in much with the way you do, is its own test in a way. So it's like if I have this really thin window of where I can breathe and be normal, then I probably need to look at what's going on with my brain, because I should be able to have these wide gaps in what I can do and it shouldn't normalize and be fine. And so, if that's a really tight constraint for me, I maybe need to look at why is that system, what is it about that chemo reception that's not working? Is that something that's happening in my baroreceptor system in my neck? Is it in my carotid arteries? Is that something that's happening in my brainstem? Is that something that's happening in my vasculature, in my brain? Is it because I've got some weird thing that happened? I got in a car accident and I actually like my diaphragm doesn't expand correctly, or I can't mechanically move my ribs. So all of these things become really useful. You know, if you're doing, you know, at home, whatever, you're using heat, you're using cold, you're using any of the things that have been made common and available, you use them as a test. So I should be able to tolerate this much of this. By doing bit by bit by bit, do I make progress? If so, that's wonderful. Keep going. If I'm finding that I'm stuck at this spot, okay, there's a problem with that thermal regulatory system. Where do I then look from there? So all of these inputs, as you do them, also give you feedback. They teach you something on the back end. And if you can be open to that, even if you don't have access to somebody that just can run you through it, they can be things that help you to be able to start to figure out where you are in a way where maybe you can find the resources to get leverage on it. But just doing it, I know there are some people, some of my favorite people in the world are people that are like, I will do whatever you say, and they will just do it to the letter. But the second part of that is doing it to the letter, and then what happens? Like, what are we getting? What are what's the feedback in this system? And then you can see is just yes or no, is that feedback what it should be? If it is not, then we know something in that loop, something in that pathway is not is not able to communicate effectively. So that's probably how I know that's maybe not everybody's favorite answer. You want me to say, like, you tap your head three times, and that's good. Um, that's what I would want. But um, I think most people at this stage in the game have probably been in it long enough to where they kind of know that they know where their limitations are. But my I guess my encouragement to people would be even if you feel stuck, it probably doesn't mean that you necessarily are stuck. And I know that's a bold statement, but it's something that we see every single day, and it's not from any fault of anybody going through it. Being an amateur neurologist on your own person with with like the resources that you can pull out of your mind and computer and conversation is it's a task that no one should have to take on by themselves, but it's just the way it's people are forced to operate. So I would want to be encouraging that. Um even though it feels like it feels like you've done everything, there's probably more to do, and there's probably still upside for almost everyone we've ever seen. There's still upside. So uh I would just be encouraging in that and don't quit.

Jackie Baxter 44:46

Yeah, I think so. I mean, you know, I had the same thing in my own recovery, and and I think everybody that I've interviewed who's recovered, every single recovery story that I've heard, you know, you find something that helps, great, that helps a bit, and then you get stuck, and then you find a different doctor who suggests something else, or you find a different strategy, or you know, whatever it is, and you know it's it's this kind of like climbing stairs, um, where you, you know, you do a thing and then you get stuck on a plateau and then you find that next thing. And it's like if you've got stuck, you know, you're feeling stuck and like you're not getting anywhere. And it's kind of like, okay, well, what do you need now? You know, it's a sign of unmet needs, isn't it? Um, whether it's a different specialist or a different strategy or a different dosage, maybe an increased dosage of uh of whatever you're doing. It's um it's just finding whatever is next. And, you know, I I love the idea you were talking about a moment ago of, you know, I mean, basically listening to our bodies, you know, whatever our body tells us is information. And sometimes it's information of, yeah, we really like this. This is awesome, this is really helping me. And then we often get the opposite of that, where the body's going, you know, and that's That's the one that is more uncomfortable and you know tends to result in us feeling far worse, unfortunately. But it is it's really great information on top of a huge amount of discomfort. Um, but you know, if we can kind of, as you say, kind of learn from that, and of course, the gentler we go with everything, and that's what's so important. And I think certainly what I see is why it being so important that we start to listen to our own bodies, but also work with people who have experience or training in this area, is that it's that like being taught to go slow rather than to go in at that kind of like boom level. It's like inch yourself in really, really gently because it's so much easier to increase than to decrease having done too much, isn't it? And this is a lesson that I think everybody with long COVID, MECFS, any of these conditions has probably learned many times over and will continue to do so for you know, probably most of their recovery journey. So I think, yeah, if we can see it as that kind of learning experience, I suppose, like you were saying, it makes it feel a little bit less painful when it happens because it's it's absolutely as you said, it's absolutely brutal when that happens. It really is absolutely awful.

DIY Tools As Tests

SPEAKER_01 47:27

There's there's one framework if I can add. So most things that start to feel like they work should also then not work. So as they start to work, the fact that they do work means that that system is low enough to where I can give that input and it matters for how I feel. It shouldn't really, right? So those things should really just kind of be normal, innocuous things. And so when it gets to the point that it doesn't work anymore, what it is telling you is that your body is able to tolerate that now and it's just normalized. And so there should be these moments, you're almost chasing them. There's these moments of like, how do I move the needle on this thing? And rather than like that macro to micro idea of like, what do I focus on in the micro that is the biggest roadblock right now? And then there should be a point where that exercise or that stimulus, whatever I'm doing there, stops, which is great. And then now you want to look at how what is the new bottleneck, and then you solve that bottleneck. And so that way, as you keep solving forward, um, you just solve until that system is able to reboot and kind of get back up to the top. And so for people that get discouraged by that, like, oh, it worked great, and then it stopped working, wonderful. Now we figure out where the new bottleneck is at.

Jackie Baxter 48:47

And I love that that's a great way of reframing that, is because I think, you know, again, that can be such a horrible moment, you know, that breath practice or that strategy or that, you know, whatever it was that you were doing, you become reliant on it, I think, as well. Sometimes, you know, you're feeling so dreadful, but this is the one thing that makes me feel slightly better. And what do you mean it's not working anymore? You know, it it's like you're you're left on your own. Um, so having that kind of, yeah, flipping that over and saying, actually, this is a good thing because it means that you're making progress. You know, yeah, okay, you have to go find something new now.

SPEAKER_01 49:24

Yeah, that's not the bottleneck anymore.

Jackie Baxter 49:26

Yeah, I've solved that problem.

SPEAKER_01 49:28

That's the hard part. And that's why having like having somebody helps, but you know, even however you approach that, I'm not here to tell anybody how to do that, but that will be the process for most people, is because there will be a bottleneck and then there will be a different bottleneck, and you have to be able to kind of number one, expect it. But then number two, can you anticipate it and then be able to shift gears quickly? And then now that becomes your new anchor point, and then you just keep moving. And if most people do that, they keep moving just out of their will and their just personality kind of takes them in that direction. But I think if that's not how you're wired up, if you can kind of almost engineer that within yourself, saying, I'm gonna look for when that starts to fail, and then I know I got to find what is the bottleneck now, and then just keep solving until you get back to that strength point.

unknown 50:16

Yeah.

Jackie Baxter 50:17

And I think we get better at that throughout recovery. Certainly I did, and it's something that I find really helpful in my life now is that kind of understanding what my needs are. And you know, it it gets quicker and easier the more you practice it, like everything. Um, learned that one in my cello practice. Exactly. Um, you know, and and you do start to recognize the signs a little bit quicker, a little bit sooner, and you can yeah, preempt them a little bit. And yeah, I I think you know it's it's a really great skill for life, um, you know, as so many of the skills we learn in recovery are. Um so I mean, I think you've left us with quite a lot of hopeful stuff that you've just said there. But um maybe finally if you had one piece of advice for people on their recovery journey, what would your kind of number one piece of advice be?

Breathing, CO2, And Baroreflex

SPEAKER_01 51:14

That's a good question. From a mindset perspective on the battle of it, is trying to just keep focused on what is the problem I'm trying to solve right now. If you try to solve solve the whole thing in an afternoon, it's too overwhelming. But if you can make a little bit of progress all the time, that's how you get there. I would also say linking progress to how you feel in any given moment is a recipe for being um discontented because most of the time, you know, we I use my hands to talk about this a lot, but most of the time, like when we're when we're taking some, we usually keep people for a couple weeks. We go through that process. It's we push people, it's surprising to people because they're in bed all day, but because we're shifting all their energy to focusing on the one problem, we can get way more out of them because we're we're just taking all this energy and we're putting it into one problem. And as we do that, they're normally very surprised that they're able to do what they can do. But then over that period of time, I also am very aware of the fact that if your capacity is here, I want to take it and I want to go right there so that my brain, when I'm sleeping and its recovery and that allostatic load resets its new threshold to here. And then I'm gonna push it to there and then I'm gonna reset to here. And all what I'm looking for is that recovery next day is to be able to just get to that recovery point where I might have felt actually really crummy over, you know, as I left, but then I was able to use sleep as a way to recover. That's one thing in this world that we think of sleep as I want to go back to that, but we think of sleep as a just like you turn the lights off. But your your brain and body when you're sleeping is just as active as when you are awake. So the same way those processes have to occur to keep you up and running when you are awake, they also have to do it when you're asleep. So the same thing we're trying to do with giving you more function while you're awake is correlated to trying to get that system more efficient at doing its job when you're asleep. And so we're looking at that, that give and take as that sleep architecture or structure may not be strong enough yet to deal with that dose. So we're looking at a dose that is enough to where the sleep can integrate it and resorb it and give us a new threshold. And as you're walking up, though, you might not, that might not be like a like a relieving experience because you're you're walking right to the edge of capacity at the weakest bottleneck that you have. So the thing that is the the weakest point, you're gently pushing it up, but it doesn't mess necessarily mean that that's going to be like relief in the moment. The relief comes when I can push that system up. And then when we do the activities, I'm no longer expanding beyond my capacity. So I'm starting to build that capacity back in so that by the end of the day, I haven't overshot my capacity anymore. I've done like I can do this amount, but my daily activities only require that I do this much now. And so, but in order to do that, you have to push that capacity up. Otherwise, the brain is never going to create more capacity than it needs. It's a waste of energy, it will never do it. So you have to then take it there. But in the course of doing that, it may not feel wonderful because you're at the edge of your capacity the whole time. So if we're using how I feel to dictate what I do, we'll never really get out of it. Because if we're trying to keep that sensation below our comfort level, then we can't push the capacity up anymore. So it is that part of being comfortable with saying I'm going past my comfort level right now with a purpose. We're doing it on purpose because I'm targeting this one thing and I'm going to do it just enough so that I can recover it on the back end. And if I can recover on the back end, that is the huge win. So I don't care how I feel right now. If I can recover that, that means both awake and asleep, that system is operating better, which means I can push it a little bit more and build that tolerance again. And that might not be tolerance to like the way we normally think of exercises, like I can just do more things. That's tolerance to a specific node, but that specific node should then give tolerance within the whole system. Um, if that makes sense. So that would be my advice is yeah, don't get bogged down in the moment. Think about is the thing that I'm doing giving me more capacity over time? Am I willing to sacrifice this moment to get a measurable improvement on the back end so that I can just keep that evidence? Otherwise, if we just go by how we feel, it's way too up and down, it's too volatile. You can't get a good enough signal to know if what you're doing is actually working or not.

Jackie Baxter 56:12

Right. So it's doing it within the limit of what you can recover from.

SPEAKER_01 56:18

Yeah. If you're at home, it's what you recover from. When you do it, like when we do it in clinic, we have things that we are measuring in the moment, and we can see when that when that system starts to fail a little bit, and then we're done. And then we give them some time to rest, and then we go right back, we go right past the failure, and then we do it again. So um, and we do that. You can look at even something as simple as a pupil moving, right? So I may watch somebody, you know, doing a vestibular exercise, right? Vestibular rehab is very common, but doing it, you know, in these big stimuli versus something that is very targeted is very different. So I might find that somebody has been doing vestibular rehab where they're trying to just not throw up when they do that, where I might say, I'm just gonna turn your head this far and close your eyes and come back. And what I'm looking for is that pupil not to have that big expansion when you go over there. And as long as we're not expanding and you're not losing the target, we're just gonna keep going in that small range, and then you see that system kind of come back online, and so it's just starting with that that small dose and measuring looking for like right when it breaks, perfect. That's the time to know it's done. And then I want to just use that sleep recovery as a way to get you like back online and then do it again, increase the dose.

Jackie Baxter 57:37

It's getting the dose right as well, isn't it? Yeah, amazing. Thank you so much uh for joining me. I feel like I have learned so much, um, which has been awesome. And um, I think there's loads of helpful stuff in there for people listening as well. So thank you so much for um giving up your time for sharing your knowledge and experience and your humor as well. Um, so yeah, thank you so much.

SPEAKER_01 58:05

Thank you so much, and thank you for doing this for people. Um, you're a light for a lot of people in a dark place. Keep doing that.