129 - Lily Spechler - The Long Covid Dietitian

Episode 129 of the Long Covid Podcast is a chat with Lily Spechler, a registered dietitian who is working with people with Long Covid following her own experience with it. We chat through some of the trends she is seeing and some pointers for people to follow.

Lily's Instagram: https://www.instagram.com/longcoviddietitian/

The Energy Expansion Project: https://www.longcoviddietitian.com/ with some resources and a link to the application.

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

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am absolutely delighted to welcome Lily Spechler this afternoon. And Lily is a long COVID dietitian. So we're going to dive into all sorts of kinds of nutrition and stuff like that. So a very warm welcome to the podcast.

Lily Spechler  
Thank you so much for having me. Like I was so excited to get this invitation. I've been listening to this podcast since the beginning. So very excited to be here and be able to be in the position to share some info today.

Jackie Baxter  
So before we dive way down the rabbit hole, because I think that is going to be what's going to happen today. Would you just say a little bit about yourself? And what does a long COVID dietitian actually do?

Lily Spechler  
Yeah, so a registered dietitian is, it's like a nutritionist. The only difference is that there's a centralized credentialing body. So if somebody is a dietitian, it just means that they've gone through a certain set of schooling. And we've all passed the registration exam. 

And then dietitians are the ones who can legally work in hospital settings. So technically, I can legally practice medical nutrition therapy, which put me in a really cool position when I started getting into work with long COVID. 

And like so many practitioners in this space, I got into it because I experienced it myself, and definitely experienced just kind of a lack of understanding with my allopathic team. And I felt very lost, I felt like I didn't get a lot of guidance. And then I also just felt like I was incredibly lucky to have the education background that I had, because I was able to apply it. 

And I absolutely think that's part of why I've had such an amazing recovery. So when I started to feel so much better, I was like, Okay, I have to do this, I have to help other people through it. Because I feel like I just hear so often, you know, there's a lack of guidance. And yeah, I wanted to help fill that space a little bit.

Jackie Baxter  
And yeah, it's interesting, you know, people coming through this experience, and, you know, changing things around because your perspective changes a little bit, I think when you go through something like this. And you were working as a dietician, before you got sick, and then you were able to kind of apply your knowledge. And now you've gone, Okay, I need to do something here. Like, that's quite a cool trajectory.

Lily Spechler  
Yeah, I mean, it's, I felt like it was just the only obvious path. It was just where my heart was, I was like, there's so much here that has to be addressed. And I also felt like there was a lot of fear in the space. For people who are kind of on the outside looking in a lot of the time, they're like this just look so extreme to a lot of folks. 

And so I think there's fear and caring for this population and taking bold action, because nobody wants to be wrong. And so I think there's part of that, too, where I'm just like, you know, I don't feel as afraid, because I feel like I understand it, having gone through it. And I know that at the heart of it, everybody just wants to feel better. And so, yeah, you got to be courageous in this neck of the woods, and not worry too much about anything besides just helping people feel better. 

Jackie Baxter  
Yeah, absolutely. I think working with somebody who understands is important. And I think the people often that understand the best are people who've got some experience of it themselves. Having said that, you know, my experience of long COVID is not going to be the same as yours. And it's not going to be the same as anybody else's, you know, everyone's different. But I think even so, having experienced it yourself, you have a deeper understanding than someone who hasn't, for example. 

And you know, this, this is super, super interesting, because, you know, there are a lot of people who have quite specific ideas about you do this, or you do that in terms of kind of nutrition. Well, in other things as well. But nutrition is kind of what we're talking about here. So, is there a one size fits all sort of diet plan, for want of a better word, for long COVID? Does that exist? 

Lily Spechler  
No, definitely not. The way I often explain this when I first start working with people is that honestly, COVID a lot of the times is like dumping gasoline on an already low burning fire. And the truth is, every person comes from a completely different place. You know, before we're even born, you're exposed to certain chemicals, or when you're born you know, some are breastfed, some are not and that can play into your gut microbiome. 

And then as we grow up, we're all exposed to different environmental pathogens. And we have different lifestyle factors that influence our health outcomes. And there's different genetic pieces that can predispose you to certain things, or not. And so by the time people get to long COVID, I think part of the hard part is there's really no clear definition of it. At the end of the day, it looks so different from person to person. And part of that is because whatever was exacerbated by COVID, is going to be different from person to person. 

So there's definitely some similarities. And for example, dysautonomia is something that is so common, but even that, there's a lot of different expressions of it. And that's really an umbrella term. And so I really like to just call it post viral illness. Because that, I think, gives it the appropriate amount of ambiguity that it requires to be like, Okay, you have a post viral illness. Now let's dig into everything to see where it is you're coming from, and see which levers we need to pull. 

That being said, I do think that there are certain things that are important for everybody. And that doesn't necessarily mean every single diet is the same. But there are some pillars and concepts that will apply to everybody. 

For example, every single human on the planet, would feel the best with stable blood sugar, no question about that. Every single person, you know, no matter what foods you're actually eating, eating in a way that supports your metabolic stability in terms of blood sugar, that's going to be impactful for everybody. 

And then I will say, the number one trend that I've seen with long haulers, and so this does tend to be the place that I start, is malnutrition and making sure people's metabolic needs are being met. And so that's a pillar - having your metabolic needs be met. But then what those metabolic needs are is going to be different from person to person. And what foods do we eat to support those metabolic needs - totally different from person to person. 

So if that makes sense, there's certain frameworks that apply to everybody. But how we get there looks different for every single person based on where it is you're coming from.

Jackie Baxter  
I mean, that makes total sense. You know, every person is different. As you say, their history going back, as far as you want to go, to even as you say, before they actually existed almost, is going to be different. Even if people are similar, they're still not going to be 100% the same because of you know, a gazillion different reasons. So yeah, that absolutely makes sense. 

I mean this is the reason that some people talk so strongly about certain diets - the common ones are what low histamine keto, Paleo keto. And I'm sure in their place, they may be really useful. But if used in the wrong place, actually, maybe not so much?

Lily Spechler  
Absolutely. And I think this is where, you know, the number one trends, again, that I've seen is this malnutrition piece. Like if you're listening to this podcast, and there's one takeaway that you get, no matter what diet you're trying to do, make sure you avoid malnutrition. 

And so the concepts behind you know, keto, carnivore is one that I've seen a lot. I'm hesitant to say this, but I think all interventions have their time and place, no matter what. A tool is going to be the appropriate tool for the right person at the right time. But the issue with long COVID, and this is I think, something that a lot of people really miss, is that it is such an energetically expensive condition. Meaning you are burning at rest so much more energy than will most people probably realize. 

So, for example, if you have labored breathing, that on average is 800 additional calories that you are just burning at rest from breathing. And then the problem becomes a lot of folks with long COVID will move less. And because they're moving less they'll think, Oh, I'm moving less. I'm going to eat fewer calories now too. 

And the truth is that's really putting yourself at risk. People don't realize that even at rest, thinking, breathing, using your eyes, all of these processes require a lot of energy, which is why, you know, on average the recommendation is 2000 calories. That's because of all the calories we use at rest. Now tack on, again, breathing dysfunction, or tachycardia, or chronic inflammation which uses even more energy at rest. And you're really in an energy deficit. 

And so I hear all the time, you know, the number one issue is fatigue. And the more I've been in this field, the more I'm really wondering how much of that is genuinely just malnutrition... I don't want to say "just" malnutrition, it's, you know, it's a big deal. But sometimes, I often think that the answers are like hiding in plain sight with it, where this is a matter of an energy intake not matching the levels of energy expenditure, which are much higher than people realize. 

And then the extra confusing part is that weight gain can actually be a sign and symptom of malnutrition. And so that's an added layer of complication that I think is very challenging for people to wrap their heads around. But the reality is, when you are not getting enough calories, based on how much energy your body is requiring, your body is going to do everything in its power to save your life. 

And the first thing it's going to do is stop making muscle, because muscle burns calories at rest. It's a very energetically expensive tissue. And so when you are malnutrition again, first thing that goes is muscle. So now muscle is - that's a metabolic organ, and it's an organ for blood flow. So muscle is how we get blood up to the brain. It's also how we metabolize glucose, and use energy and make mitochondria as well. And so when muscle starts to go down, that's a big problem. 

And then the second thing the body will do, next to depleting your muscle, is it will start storing fat. Because literally, if your body thinks you're not getting enough energy in compared to what you're putting out, again, it's going to try to save your life by storing as much energy as possible. And so I often hear, you know, I'm not moving, and I keep gaining weight, I don't understand, I'm not eating anything. And I'm like, there it is. That's why, you know. 

So I think that's a much bigger deal than people realize. And when I see people will go on these crazy carnivore diets where they're taking away massive food groups, and maybe they're eating a third of their metabolic requirements, again, considering their metabolic requirements are, you're no longer just looking at body size, you also have to take into account disease state. 

And so when you look at your metabolic requirements with long COVID, and then you add a diet like that, and you ultimately ended up taking away a lot of food groups and you're eating about maybe a third of your metabolic needs, your body is really going to enter a state of fight or flight. And it can really, really lead to some of this profound fatigue, as well as metabolic dysfunction, because with the muscle wasting, again, that it doesn't just sit under your skin. Muscle plays a huge role in how we use energy and get blood to the brain.

Jackie Baxter  
That is incredibly interesting. And then you hear quite a lot of people talking about things like weight gain, for example. And not everybody, but many people with long COVID lived very active lives beforehand, I was one of them. So if you go from being very, very active to suddenly being very, very inactive, you know, putting on weight seems like an obvious thing, but at the same time it's not always, as you say, as obvious as that. And even if that is part of it, it may not be the whole story, I suppose, as you've just said. 

And you know, there's all sorts isn't there, in kind of research and people talking about the mitochondria and you know, mitochondria not working properly. And that being you know, one of the things that's contributing to long COVID. Well, I suppose if we're not powering them, then they're not going to work. That's sort of cause and effect, isn't it?

Lily Spechler  
It's...and they're immune cells, I mean, you know, and I'm sure we'll get to mast cell activation, but I always kind of explain this to people like if you've ever had a pet, you know, like a dog for example and you forget to feed them or you feed them a little late, they're going to start scratching the walls, they're going to start, you know, acting crazy. Or maybe they'll be super lethargic. 

Our immune cells are the same way, where if they're not getting enough of what they need to function, they're going to act crazy. And so I think so much of this really comes down to malnutrition. And it sounds so simple. But again, I'm like, I feel like some of the answers are hiding in plain sight in that way, where the gains I've seen people make in just in terms of how they feel, by simply meeting their metabolic needs, no matter how we get there, you know, no matter what that actually looks like, in terms of the foods. It's keeping your blood sugar stable, and meeting your metabolic needs.

Jackie Baxter  
That's kind of blown my mind a little bit. Wow. So this is gonna be as you say, not one size fits all. But I'm sure you're able to talk maybe generally, with what you've seen. You just mentioned mast cell activation, which definitely comes up quite a lot with people. 

So how does somebody tell which particular diet is gonna work for them? Because we've just said, you need to be taking in the right number of calories. So if you're more restrictive, you know, the low histamine, for example, is pretty restrictive. How do we work that out?

Lily Spechler  
Yeah. So I mean, there's so many layers to it. And so this is another piece. So the mast cell is kind of like its own thing. And the way that I've been helping support people with mast cell activation, is looking at how to actually stabilize the immune system. 

Because going low histamine, for example, the way I look at it is, you know, let's look at forest fires. If you were to take away all the trees in the world, we wouldn't have forest fires. But, you know, is that addressing the issue? Or is that creating new issues now? What about the environment has made the land so flammable in the first place? 

You know, when we look at addressing forest fires, we want to look at, okay, what are the conditions that are causing these trees to catch fire? Trees are so important, we know we need them. So yeah, you know, when you look at it in a reduction approach, taking away the trees, take away the forest fires. But we want to look at it a level deeper and say, Okay, why, why are the trees catching fire? 

Why are these mast cells so over activated, and there's a lot of different reasons why mast cells become so activated in long COVID, but part of it is because the mast cells are just one type of immune cell. And they happen to be very present in the areas of the body that interface with the outside world the most. So the gut, and the lungs and the skin are the major areas. 

And so when COVID first came about, everybody thought it was a respiratory virus. But the reality is, it's just that we have a lot of mast cells in the lungs. And surrounding mast cells are ACE two receptors, which is COVID's primary entry site. So COVID just kind of hit the jackpot by finding an immune cell that it locked into so perfectly, like, you know, key in a lock basically. And we just happen to have a lot of those receptor sites in our lungs. 

However, we now know that COVID is systemic. So it's not necessarily just a respiratory condition, even though it can have dramatic implications on the respiratory system. And so, when I look at mast cell activation, so the mast cells, COvid's primary entry site, because of the ACE two receptors. And so there's also a theory that these mast cells have even become the host of the virus now. And so they're just getting overstimulated, overstimulated, overstimulated, and one of the chemicals that they release is histamine. 

But I also like to remind people that that's not the only chemical they release. They also release prostaglandins and other inflammatory cytokines. So histamine is just one. And I think it gets too much press. I think it gets way more press than it deserves because then when we go low histamine for example, yeah, we might have taken away all the trees and so now we're not getting as much exposure to histamine, but what about the rest of it? 

And that's why you rarely hear people really healing completely from just going low histamine. Even though it can be a really helpful tool. 

So all this to say, when I look at mast cells, I like to think about, okay, what are the mechanisms? How can we modulate this mast cell activity and get to the root of the problem? And first of all, I'm gonna start with malnutrition again, because the immune system needs to have its energetic needs met, to stop freaking out and being in fight or flight mode. So that is step one. 

Step two, is I started to look into some of the microbial patterns of people with mast cell activation syndrome. And what I found is a lot of deficiencies in short chain fatty acids in the gut. So for example, butyrate, acetate and propriate are the big ones. And so there's a direct inverse relationship between short chain fatty acids and circulating histamine. The more short chain fatty acids we have, the less systemic histamine we will have. Because again, these short chain fatty acids are immune modulators. 

And the mast cells are part of the immune system. So these short chain fatty acids can modulate the activity of the mast cells. 

And so this is another reason why I get nervous about some of these diets, because they tend to be very low fiber. And the thing about fiber is that we don't digest it. When we eat fiber, it travels all the way down to the colon, where it gets fermented by good gut bacteria. When the good gut bacteria ferments the fiber, what we get are short chain fatty acids. So fiber is such an important piece. And it has an inverse relationship with circulating histamine for that reason. 

So when I see diets like carnivore, I always get very nervous, because I'm like, maybe you're taking away the bacteria. And so if you have dysbiosis, it will wipe out some bad bacteria too. But what good do we give up when we follow those diets. The other thing is, when we're talking about dysbiosis, the good gut bacteria in the gut requires fiber to survive. And when the good gut bacteria does not get fiber to eat, the bacteria will start feeding on the gut lining, and lead to permeability. 

And when you get permeability, you get more systemic inflammation, because the toxins that are in the gut can enter the bloodstream. So the layer of the gut is one cell thick, it's very thin. And coating that layer of the gut lining is a mucosal layer, where is one primary site where we produce the enzyme diamine oxidase. So diamine oxidase - DAO is a very common supplement in this world. Diamine oxidase is the enzyme that actually breaks histamine down. 

So fiber does two things. It helps us create the short chain fatty acids that modulate the mast cells. And it helps protect the integrity of the gut, which supports the growth of that mucosal lining in there for diamine oxidase. 

Third thing that I think is really key and really important. I mean, I could talk about fiber forever. But people know it as like the poop nutrient. And I always tell people like that's like the least relevant thing that fiber does for us when we look at the immune system. It's so much more than just that. 

But pooping is also really important. Because that's one way that we excrete estrogen. We excrete estrogen through our waste, and estrogen and histamine bind to the same receptor. I mean, it's part of why so many women are being impacted by long COVID. And so that's another really important benefit of fiber is estrogen detox, and therefore reducing systemic histamine. 

Jackie Baxter  
So we want fiber - fiber is good. 

Lily Spechler  
Absolutely.

Jackie Baxter  
Yeah. Now, just taking a little bit of a tangent here for a second. You just mentioned estrogen. Now, my knowledge of estrogen is largely from my A Level Biology which was some years ago. But it is generally seen as a female hormone, isn't it? But is this something that men have as well? 

Lily Spechler  
Yes. 

Jackie Baxter  
So it's not just relevant to women. It's actually both. 

Lily Spechler  
It's both. But it's the fluctuations of estrogen that go up and down that men don't really experience. So a lot of women report feeling super symptomatic around the mid luteal phase. And men definitely experience Long COVID too, but there tends to be less of this piece involved in it.

Jackie Baxter  
Yeah. And that makes sense. Because there's, as you say, much less of the hormonal up and down-ness that many women experience. 

Lily Spechler  
Exactly. 

Jackie Baxter  
And that's really interesting that that is also got a relationship with the histamine. 

So everyone's different, and different diets, or approaches can be useful for different people, if used in the right way at the right time. And working this out is, I suppose, part of the fun, fun journey of long COVID. 

Is there a way of people being able to kind of like work out which approach is good for them just by kind of hacking it themselves? Are there any kind of like warning signs of you definitely have a mast cell component, you definitely have a inflammatory component, are there things to look out for that people can work out themselves here?

Lily Spechler  
So I would definitely recommend that every single person goes to check out the chronometer app, which is a free application. It's similar to my fitness pal, but it's different because it looks at every individual amino acid, every single vitamin and mineral, and it shows you where you're deficient. So no matter what diet you follow, no matter what dietary style you follow, I would check that out. Because I believe there's a way to do it so that your metabolic needs are being met along the way. 

And when I say metabolic needs, it's more than just calories. It's also making sure you get all of your essential vitamins and minerals, which are the ones that you require for the basic functionality of a cell, but we cannot make ourselves. So you can't out human yourself, you know, we're all born with these essential needs. And if you're not getting them in your diet, or supplement - I recommend doing diet, not supplement - treat supplements as supplementary, I always tell people. But if you're not getting those things, they might really be contributing to some of this dysfunction. 

And I also just want to point out, there's a difference between an energy nutrient and a micronutrient. So energy nutrients are your macros, so carbs, fat, and protein. Whereas your micronutrients, you don't derive ATP from them. But they are critical for the functionality of a cell. So I always tell people, if macros are the gas in the tank, micronutrients are like the oil in the car. You can kind of drive your car without it, but eventually it's going to break down. And it's going to function best with these micronutrients present. 

So I really like chronometer, because you can see for yourself where your deficiencies are, and make sure you are not going too long just completely missing out on an entire group of essentials that you need. 

The other thing I will say is like, it's not to diss anybody, but honestly, I've gotten some folks who are really in critical condition from some of the advice that they've gotten. And I would just say, it's very important to listen to yourself along the way. If you're trying an intervention, and you are feeling awful from that intervention, the solution isn't to do more of that intervention or go harder with that intervention, it's to stop and reassess. And likely you feel horrible, because that intervention is not meeting your metabolic needs. So that's just one red flag. 

If you're working with somebody, and you're feeling really unwell, don't let them convince you that oh, this is just you know, the intermediary step that everybody has to go through before you get better. Like, that's not really true. And frankly, long haulers are not really in a position to experiment like that. Maybe that would work for a different population where you know, they're just playing around with body composition. But long COVID is a serious condition. And you don't want to just be experimenting to the point where you are really not well. 

And I will also say like electrolytes is another thing that I've seen, people are just promoting these blanket statements about electrolytes. But the truth is, there's a lot of different versions of long COVID, even though symptoms might express in the same way. And so how you feel with an intervention is so important. I've had some people require sodium supplementation and feel so much better with sodium supplementation. Others, however, are not okay with extra sodium. 

And so there's a few different reasons, right? Some people can have excess pooling, that's resulting in not enough blood going to the brain, those people might do well with some sodium supplementation. Others however, if you have ACE two receptor damage, for example, and now you have elevated levels of angiotensin two, what you can actually have is excessive vasoconstriction. 

And so, same outcome, you're not getting enough blood to the brain. But the reason is different. It's not pooling, it's because of too much construction. So if you go and add sodium to an already over constricted blood vessel, now you're going to feel significantly worse. And I've had people have vomiting episodes from trying to supplement sodium, or feel kind of like that intracranial hypertension, where they just feel a lot of pressure in their brain. Again, that's because probably, the constriction was already too high. 

So that's another thing, you know, try interventions, be open minded. But if you're getting a clear signal from your body that something is not right. That's not the time to go even harder. Take it seriously, stop and do more research, because there's probably a reason why it's making you really not feel good.

Jackie Baxter  
Yeah, that's a really good point. I mean, I think so many people with Long COVID, and I would put myself in this group, you know, they didn't get any help, they have no idea what to do. And they are doing their own research and using themselves as a guinea pig, because there is no alternative. And I think that's okay, that's kind of what we have to do. That's how people have recovered and have improved. 

But as you say, let's be sensible about this. If you try something, and it's helping, great. If you're trying something and it's not helping - cross it off the list, continue on, find something else. And I think that goes for all interventions, whether we're talking about diet or anything else, either. 

I mean, this probably ties in with what you've just been saying, actually. But as you say, everyone is individual. But is there any general do's and don'ts? 

Lily Spechler  
Don't override your internal voice with an external one. Don't gaslight yourself out of your real experience. If you're trying an intervention, like yes, it's so important to be open minded. And like you said, everybody is DIY-ing it, which is honestly why I love working with long haulers so much. I feel like this population is just so passionate, and intelligent and curious and interested. And I think it's incredible. 

Like, it's essential actually, to do your own research and keep an open mind. But don't gaslight yourself. If you're feeling not good about something, or you've tried something that doesn't make yourself feel good. Trust that your body is signaling to you for a reason. And trust that and it doesn't mean that it's hopeless. 

I don't like to say the expression there's a million ways to skin a cat. So I'm just gonna say like, there's a million ways to slice of pineapple. You can do it a million different ways. No way is wrong, right? There's so many different ways to do it. And if one thing doesn't work, it's not that nothing will work. It's just that that thing didn't work. 

And this is a challenge that I've seen a lot in my practice where people will not get hunger cues all the time. And I think honestly, and this is not research-backed. This is just my own personal theory, so just so just to make sure I differentiate with that. I think part of what's going on is that with dysautonomia, some signals are just kind of gone haywire, where signals are not showing up in like a straightforward way or the way that we've always understood them in the past. 

And so, something I've noticed a lot is people will not get hunger cues. And this is honestly when I think it's really important to eat anyway. Because your metabolic needs don't go away, just because you're not getting hunger cues. And this is just some thing I've noticed in my own practice is oftentimes when we get people's metabolic needs right, what they'll report to me is two weeks in, they're like, You know what, I'm starving, suddenly, I'm just ravenous. And I'm like, it's so interesting. 

And I wonder if part of it is, you're not getting your metabolic needs met for so long that your body stops sending you those cues as like survival mode. And then when it recognizes you're actually getting food, again, the appropriate amount of food, it's like, okay, let's definitely get more of that. So that's one thing that I've noticed. 

And that's where I would take a more prescriptive approach. I guess that's like, antithetical to what I just said, which is like how you feel is so important. But for this one, in particular, I think it's like there is somewhat of a science to energy needs. And making sure even if you have a no appetite day that you're not not eating, because your body still requires energy, even if you're not getting that signal clearly.

Jackie Baxter  
Yeah, and you know, as going back to what we were saying earlier, the body needs fuel. And, you know, when we're trying to heal actually, like, we need to put that energy into healing. You know, it's almost like we're doing less movement, but the body is still using all of that energy to try to heal. So if we're cutting it off from that fuel, then it's kind of counterproductive, isn't it? 

Lily Spechler  
And I think it's also like for women, you know, long COVID primarily is impacting women. And, you know, some women I've put on diets that are over 3000 calories, and they're sedentary. And it's so hard mentally to wrap their heads around that, but then they feel better. And so I think there's also this connotation of like, I need to be moving to be expending energy. But that's not the case, especially in this case of an energy wasting disease like long COVID, where really it's expending so so much more than you think it is, even if you are literally sedentary all day. 

So that's a hard piece too, I think there's like a mental block around high calorie diets. But it's such an important wall to break down. If you are experiencing fatigue, I think it's worth trying to see if that would help you. 

Jackie Baxter  
Yeah, and you know, what, like, what is one of the lessons that we've learned with long COVID - it's that there's different types of exertion. So we have our physical exertion. And that one's kind of obvious, you move or you don't move. But we also have the cognitive exertions, we have the emotional exertion. So just because you're not moving doesn't mean that you're not mentally exerting yourself, for example. So I suppose when we then apply that to nutrition, it's really obvious actually, now you've pointed it out to me.

Lily Spechler  
It's hiding in plain sight, I really think. There's also different types of physical exertion. So if you have orthostatic intolerance, for example, simply being upright, your body is working a lot harder than you realize to stay at homeostasis. And that's using more energy than somebody who's simply sitting upright, who doesn't have orthostatic intolerance. So it still technically is physical exertion. 

And I think that's what is the big controversy about adding movement in. Like, where is the thresholds? And it's like, well, everybody is just so different, because of all of these factors that use more energy than people realize at rest. 

My own experience with this, one thing that was happening was that I became underweight completely unintentionally. And I didn't know why. But I was having really labored breathing at the time. And I started looking into a COPD diet, chronic obstructive pulmonary disease. And that was the first time where I put the puzzle pieces together and realized, wow, people with COPD need so many extra calories, because of that piece where they're just having trouble breathing. It's so much energy, just to do that. 

And I was like, You know what, I'm gonna try this. You know, I've been eating around 2000 calories for my whole life, basically. And I added 1000 extra calories to my diet, and I felt so much better. It was just so eye opening because it also helped bring me back to a healthy weight. And I think that was also the reason that I tolerated rehab in the end. 

And with these diets that are just cutting out big food groups. I worry for people that they're missing that piece that's so critical for healing. 

Carbohydrates. That's a big one that I see being taken off the table or being demonized in media. And I think it's really dangerous specifically for long haulers. And the reason why is that carbohydrates play a massive role in serotonin production. 

So what happens when we eat carbohydrates is when we intake carbs, insulin rises. Insulin is the hormone that brings glucose from the bloodstream into the cells. And that triggers our body to uptake amino acids. So amino acids are what protein breaks down into. And tryptophan is an enzo... So you might have heard like supplement l-tryptophan, you know, that's a really common one. And so with tryptophan, that's just one type of amino acid. 

So when we eat carbs, insulin goes up. Amino acids get up-taken by our cells, except for tryptophan, which gets left behind, and the brain absorbs the tryptophan. So there's a receptor. When your body senses the presence of that raising in tryptophan levels from the tryptophan getting left behind basically, the brain uptakes tryptophan, and that is the precursor to serotonin. 

And so long haulers have been found to be low in serotonin. That's one biomarker that they're exploring. And the other hormone that long haulers are low in is cortisol. So the way that this plays into that is that serotonin is the precursor to the hormone, melatonin. Melatonin and cortisol have kind of this yin yang relationship. Where if melatonin is the sleep hormone, cortisol is the Wake hormone. 

So if you have less serotonin, you're naturally going to have less melatonin. And if you have less melatonin, that will also throw off your wake cycle, because again, they have this yin yang relationship. So that's not the whole story. That's part of the story, obviously. But one concern that I see a lot is people are very misunderstood with their relationship to carbohydrates, and they end up taking carbs out completely. 

And so carbs are one of like, I would call them like a Goldilocks nutrient, where you want to be right in the middle, right? You don't want to go crazy with carbohydrates, where you have a super high carb diet. But also, to be specific, you don't want a diet that's high in refined carbohydrates, because refined carbohydrates are very easy to absorb in the bloodstream. 

So when you have a diet high in refined carbs, it exits the stomach quickly. And it basically goes from the stomach to the bloodstream, which causes your blood sugar levels to rise. You really don't want high highs and low lows with your blood sugar, you want it to be in a stable line. 

So the way I explain this to people who have chronic fatigue is like okay, you have chronic fatigue, right? Imagine if I asked you to drive me to the airport, then pick up my dry cleaning, then write a 10 page paper, and then go to the gym and cook dinner all in one day. That would feel very overwhelming, right? Very overwhelming. Now what if I say okay, the To Do lists is the same. But you have two months to do all of this. Way different, right? So the tasks are the same, but the timeline is different. 

So how does that relate to carbohydrates? When you eat a large volume of refined carbohydrates at once, right, that is very quickly absorbed, there's nothing there to slow it down. So what happens is all that sugar goes to the bloodstream. Now, your pancreas has to produce a large amount of insulin in a small amount of time. That's very stressful for the pancreas to have to do that. 

And eventually, just as you would get tired from all those tasks in a short period of time, your pancreas also can get exhausted, which is what insulin resistance is. So it's not that we want no carbs, it's just that we want the right dose of carbs, paired with fat and protein to slow down the absorption of carbs, so that we're not getting too much at once. And that's really the key. 

So, having high blood sugar is not a good thing. But that doesn't mean no carbs, it's just we want to eat carbs in a way that is easy for our bodies to metabolize and handle.

Jackie Baxter  
And again, you know, we hear all the time, don't we, people with long COVID don't get good sleep. Now, as a breathing instructor, that is a rabbit hole I'm not going to go down right now. But as you've just said, this is relevant to serotonin to melatonin, to everything you've just been talking about with carbs. So people will say, Oh, everything in moderation, that kind of is the thing here, isn't it?

Lily Spechler  
And I think that's where the chronometer comes in. Because I get a lot of folks who are coming off the tail end of one of these programs where they've just been told to restrict so much. And now they have in their head that carbs are bad. And I just like to show them like, okay, but look at what happens when we take your chicken and ghee diet. And don't add any bread to it, right? 

Like, look at your folate levels, look at your magnesium levels, look at all the B vitamins are so low. Now what happens when we simply add two slices of whole wheat bread, and you see all of those levels come up so dramatically. And it's like, you know, it's not just - carbs are not just about sugar. Carbs are essential, because they're a vessel for other essential nutrients that are not really found in the same expressions in just animal food. 

So with moderation. It's also understanding that no one food is going to check every single box. That's why balanced diet is key. So I guess that's my thing. I'm like balanced diet. It's true, though. 

Jackie Baxter  
And you know, if you find that you need to restrict something for whatever reason, then you've got to make sure that you're getting the right things from elsewhere, I suppose. 

Lily Spechler  
Right. And so some people, and this goes back to what I was saying about like COVID is like dumping gasoline on a low burning fire. Some people had dysbiosis before COVID. And so what can happen with that is, when you eat certain types of fiber, maybe you're experiencing high levels of fermentation that's causing a lot of gas and bloating, so there is nuance to it. And there are unique needs. 

And some people really do better with taking out fiber for a time or taking out certain types of fiber for a time. But then I think the key is really digging in and getting to the root issue and working on the environment. Because ultimately, unless you really have an allergy, restriction forever can open the doors to different problems too. 

So usually, like carnivore diet, I would say treat that as a bridge and not a destination. Maybe it is really helpful for your symptoms for a time. But long term sustainability, you know, see for yourself on chronometer. Are you missing these essential needs that, again, are essential for the normal functionality of your cell and you cannot make yourself? And if the answer is yes, these things are restricted, then what you're doing cannot be sustainable forever. 

Jackie Baxter  
So you said that you are working with long COVID people, but you are also working with somebody else as well. So just say a few words about that?

Lily Spechler  
Yeah, so in my own experience with long COVID I was randomly connected with somebody who shared about the chops modified protocol. And this was really before I knew how controversial it was. I had never heard of ME/CFS at the time. And I just blindly went for it because I had finally gotten a POTS diagnosis. 

But at the time, I had connected with a girl who had PoTS herself and was part of a Mayo Clinic study where they were studying a modified Levine protocol. I was just desperate and like I just went for it. And that in combination with the diet stuff I was doing, so high calorie, high fiber, high protein diet was really, really helpful. And I think it was honestly the only reason why I was able to tolerate the protocol like I did. 

And because I know that not everybody has that experience, I would never recommend somebody try the protocol the way I did. I'm definitely not saying that, you know, I recommend it. This was literally just my lived experience. That's what happened to me. But I do feel that the only reason I am functional today, and by functional I mean, living a full life like I go back country skiing, I go uphill skiing, downhill skiing, I've gone on extended bike trips and music festivals and travel. And I absolutely accredit that to muscle health and fitness, and autonomic resiliency. 

So I feel really strongly that it's a mix of autonomic retraining and nutrition that is so powerful for people. And so I partnered with Dr. Meg Anderson, who, you know, she has the experience, she happened to have been studying dysautonomia, she was just curious about it, because, you know, it's not something most PTs get taught in school. It didn't make sense, what she was seeing based on what their labs were saying. 

And so she, you know, spotted dysautonomia, really early on and started her own autonomic rehabilitation program. Her whole thing is stability before movement. So she likes to get people stable before they introduce movement. So I scooped her up - through my own experience, I feel so strongly that people should not confuse pacing and inactivity. They're two different things. 

And to be functional in the world, it's so important to understand the difference, because deconditioning is a risk. And so I think it's like finding where that sweet spot in the middle is so important. 

And so we just launched a group program, the Energy Expansion Project, which is self paced, autonomic retraining modules and self paced nutrition modules. And then two weekly group calls with both of us, as well as a platform to ask questions and communicate with other long haulers. 

So we both still have that one on one option available. But it's been really cool to start the group program too that does both because I really, like in my heart of hearts believe it's both. It's been really cool to see people, how differently they handle these interventions when their metabolic needs are met. 

Jackie Baxter  
Well it sounds like we need to get Dr. Meg on here. But yeah, thank you so much for coming along today and sharing your expertise. And you know, as we've just been saying, it's so important to get that information out there because no two people are the same. I'll drop all of your links into the show notes as well. So if anyone's wanting to check out you, your website, your social media. So yeah, thank you so much.

Transcribed by https://otter.ai