201 - Lily Spechler - Fuel Before You Fix

I sit down with Lily Spechler, a registered dietitian and long hauler, to unpack why weight change in Long Covid is a metabolic story, not a willpower issue. We map a safer path: fuel first, stabilise blood sugar and blood flow, then make tiny adjustments that your body can tolerate.

• Adding 10–15% above BMR to halt weight gain and calm stress signals
• Glucose spikes from standing and why compression and electrolytes help
• Why cutting calories can worsen dysautonomia and fatigue
• Protein-forward plates with modest carbs to flatten swings
• When weight loss is medically useful in MCAS, hypermobility and sleep apnoea
• Stabilise first, then small deficits from added calories
• Safe strategies for unintentional weight loss using high calorie, low volume foods
• Using CGMs to link symptoms to glucose patterns
• Practical supports: salt, fluids, compression, pacing and low histamine choices

Links: 

Connect with Lily: https://www.longcoviddietitian.com/services-5
Our previous episode: https://www.buzzsprout.com/1835170/episodes/14847447

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

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 2:47 Lily’s Story And Practice Focus
• 5:31 The Problem With Rapid Weight Change
• 9:26 Why Cutting Calories Backfires
• 11:53 Stress, Glucose Spikes And Dysautonomia
• 14:37 Practical Fixes: Electrolytes And Compression
• 17:39 Inflammation, Protein Needs And Safety
• 21:57 When Weight Loss Is Medically Useful
• 26:59 Stability First: A Safer Weight Loss Path
• 32:50 How To Lose Weight By Eating More
• 42:42 Addressing Unintentional Weight Loss
• 49:34 High Calorie, Low Volume Strategies

Transcript

Jackie Baxter: 1:51

Hello and welcome to this episode of the Long COVID podcast. I am absolutely delighted to have Lily back with me. Um now Lily was a guest uh back in 2024, and it was such a great episode that I had to have her back. So uh we're gonna dive into a whole load more stuff today. Lily, welcome back. It's so good to see you.

Lily Spechler: 2:16

Thank you. I think it's truly an honor to be here. So I appreciate it so much.

Jackie Baxter: 2:22

I'm so delighted that you have agreed to come back and share some more wisdom. Um, so before we kind of dive in, would you just give the sort of like two-minute version of who you are and kind of what you do?

Lily Spechler: 2:36

Definitely. So I am a registered dietitian and I currently exclusively see clients with long COVID. And I am also a long hauler myself. So I got COVID back in 2020, and this was back before anyone really knew much about long COVID, and you know, it was two years before I got my first POTS diagnosis. And once I got that, was really pretty much left empty-handed. So after that, finally, you know, got that diagnosis and put applied my educational background and then just anything, any resources that I could find, and was able to kind of dig myself out of the ditch. And I was like, okay, now nobody is getting left behind. And so then I just started specializing in this, and I've been seeing this population ever since.

Jackie Baxter: 3:37

And I love that. I mean, I think so many of us do. We dig ourselves out of the hole, and it's like there's a gap here. Like, so many people, as you say, you know, really do struggle for such a long time. And, you know, if you don't go searching or you don't find the right things, they don't always find you. So it's like, okay, I've come through this, I need to help people who haven't yet. And like, I I love that you've chosen to do that, and uh, you know, I I feel that way as well.

Lily Spechler: 4:09

I know, I feel like almost all of us who got into this space now are like, I'm a survivor as well. Because it's just like it's the craziest thing ever, as we all know. So yeah, we we all need each other for sure.

Jackie Baxter: 4:24

Yeah, it is a journey for sure. Um now the first episode that we recorded was absolutely amazing, and I'm gonna drop that into the show notes because for anyone who hasn't heard it, I can highly recommend it. We cover a lot, I think, don't we? Um, but one of I think the biggest takeaways that I took from it, um, and that the reason that I share it with other people when I see people asking the question is around the sort of calories required, um, you know, and actually that so many people with long COVID MECFS actually are malnourished and are not getting enough calories in because healing is an energetically expensive process. Um so one of the things that we thought we would maybe talk about a little bit today is weight changes and sort of weight management and around all of this sort of thing. So I suppose maybe the first question is to say what do you kind of see in terms of weight changes? Um, do you do you sort of see both ends of the spectrum? And are there any kind of particular trends there?

Lily Spechler: 5:37

100%. So I have seen it all when it comes to weight changes. Sometimes people will lose a really significant amount of weight where all of a sudden in a month they're down, you know, 12 to 15 pounds and they don't know how they got there. For others, it will be the opposite, where they've gained a significant amount of weight and they're feeling uncomfortable and they don't know why this is happening and they don't know how to make it stop.

Jackie Baxter: 6:08

Yeah. And I I guess both ends of that are uncomfortable and potentially harmful.

Lily Spechler: 6:17

Totally. So honestly, but between the two, if I'm being completely honest, I would much rather see somebody gain weight than lose weight. Because if you're having the rapid weight loss, I definitely see that as a more risky position where your body is really hypermetabolic at that point. And if you were, it's kind of this catch-22 because in order to get out of that hypermetabolic state, it's going to, for most people, involve some form of rehab. But when you're malnourished and underweight like that, it's really unsafe to start. And so I would almost rather people have a little bit of extra weight on them before starting something like that. So it's it's the underweight that I see being more of a, you know, it's a more pressing concern where it's like, okay, we really, really need to address that. With weight gain, you know, of course, there's going to be metabolic changes. So I am definitely, I would say my style as a dietitian is I mirror back what people are feeling the most. So I'm not going to, you know, if you're coming to me because GERD is taking over your life, I'm not gonna be like, wait a second, but you know, you have this extra weight. It's definitely you're taking the lead. And if you're the one who feels uncomfortable with it, that's when we address it, especially with the weight gain. I see it more as an issue, honestly, when it's being spoken about in doctors' offices as kind of the primary concern. And so people will oftentimes leave doctors' visits feeling super freaked out about their weight. And then the advice that they're given is to just simply cut calories. And that is when I see people get into trouble with long COVID, because oftentimes the weight gain is actually happening due to this metabolic crisis because your body is working so, so, so hard, but you're not taking in enough calories. And so your metabolism can slow down to essentially make the most out of the energy coming in. And that's not the only thing at play, but that is a big part of it. So then when you just take away the primary source of energy, not only do people feel significantly worse, but it also doesn't tend to solve the problem if that's the underlying root cause. You know, so I'll have people message me saying, What the heck? I've gained, you know, 60 pounds on an all-liquid diet. Like, how is this happening? Like, what is going on? I'm tracking every single calorie going into my body. And it's because it's so much more complex than just calories in, calories out when you have a systemic issue like long COVID going on. Since we last spoke, one newer thing that I have discovered in my practice is how big of a role blood glucose plays in dystotonomia. So just from working with people and having, you know, so many people wear glucose monitors, something that has become very, very clear to me is how many of them have abnormal blood glucose. And this is true even when they haven't eaten any food. So I had a client with type 1 diabetes, and every time they would get out of bed in the morning, their blood glucose would spike off the charts before a single morsel of food has gone to their body. And this, you know, tells us that there's a there's a metabolic process happening here. So there's actually a glucose response that happens in the stress response. And it makes sense from a biological standpoint. So, you know, if you were running away from a bear, it would be really convenient to have a little extra sugar in your bloodstream to run or fight. So when we are stressed out, our liver literally releases stored glucose into the bloodstream. And you're gonna get this glucose spike, followed, of course, by a glucose drop after it spikes our insulin levels, right? So both of those can be really uncomfortable and drive a lot of metabolic dysfunction. And now you're talking about changes in your blood glucose independent from food. So, of course, you know, it's way more complex than just what we're eating. Of course, what we eat matters, but for these folks who are struggling with long COVID, they go to their doctor, they are told to cut calories. That's actually not touching the root of the problem. And then many of these clients will then just get worse and worse and worse. And that's you know what happens when we take away our primary energy source. So yeah.

Jackie Baxter: 12:05

Like this makes so much sense, doesn't it? You know, and you know, your example of running away from a bear, like absolutely, that is a legitimate stressor, but you know, a legitimate danger that you have to run away from or fight it. But I would say I would run away from a bear rather than attempt to fight it, but that's just me. Um but you know, you need that fight-flight response to kick in. And in order to have that extra energy to run away from it, you need that extra release of glucose. So it makes absolute sense. Now, I guess you know, your example of the person who woke up in the morning, got out of bed, and whoo, glucose spiked. That was the stress response kicking in because they'd got upright. Um, how dare they get upright? But you know, we we know this, don't we?

Lily Spechler: 12:57

But what was so fascinating is when he implemented electrolytes before he got out of bed and compression, that's when we got the glucose spike in check. So it's not like it's there's no way forward, you know, there's things we can do, but it's just building awareness around that, that when you have dysautonomia, you also have this glucose dysfunction as well. There's no way to really uncouple the two. And I think that is a major reason why we're seeing these big weight fluctuations in long COVID. It's not just about the calories, even though you know, trying to cut calories in this moment is definitely not doing you any favors.

Jackie Baxter: 13:48

Yeah, because I think one of the things that you were talking about last time was that actually if you reduce your food intake, you know, and your calorie intake, then your body is actually going to feel more stressed because it's trying to run on less. So actually, if you reduce that calorie intake, you're exacerbating the problem rather than reducing it, right? Because you're putting yourself into more stress, more stress response, more fight-flight, burning more glucose when you've got less resources coming in. So this is where you're saying that actually you see people really struggling with this approach when they're trying to lose weight by cutting calories.

Lily Spechler: 14:32

Exactly, because we're we're talking about, you know, dysautonomia. But when, and you know, a lot of this is still a theory because we don't exactly know why dysautonomia happens after COVID. But one of the dominant theories is inflammation. And so if we're tracing it all the way back to inflammation, look at every other disease that has a really high level of inflammation, right? COPD, cancer, burns in a burn unit. All of these require significantly more calories to put a halt to that inflammation and specifically protein, too. So it's high calorie and high protein. Um, and of course, along the way, you know, we don't just want to eat bags of chips, right? We want to keep our blood sugar in check too, because we're still looking at this total metabolic picture. But to be at a caloric deficit in this really demanding moment, it just continues to perpetuate this cycle. And it's really hard for people to believe it until they experience it themselves. Yeah.

Jackie Baxter: 15:49

Yeah. And particularly as you said, if they go to the doctor and the doctor says, well, if you lost a bit of weight, that would probably help. Um, you know, and not all doctors are quite as patronizing as the one that I just impersonated there. Um, you know, and and many have very good intentions. Uh, but you know, particularly somebody who maybe has put on a lot of weight and is maybe feeling very self-conscious about it, you know, that that can be quite a difficult thing to hear. And, you know, we we can often go into that the wrong way.

Lily Spechler: 16:24

Totally, totally. And I think, you know, in the general population, right, when we're just talking broadly, it is more about calories in, calories out. But when we're talking about long COVID, it's a totally different ball game, like any chronic disease, right? It's really a complicating factor. And so it's it's just very important to look at the whole picture. And again, what kills me about this scenario too is when we when we're talking about these people, you know, we're talking about folks who can't walk across their living room from the fatigue. So if we're taking away those people's primary source of energy, that's a really bad recipe. And then it's like, okay, at what cost, you know, and it's not even solving the problem, usually. And so these people will just get so frustrated and feel like, oh, I followed all the rules, like I cut the calories, what's going on? Why am I feeling worse and worse and worse? And it's because dysautonomia is way more complex than that. And it does, there's so much inflammation involved, even when we're talking about mast cell activation syndrome, your mast cells are still part of your immune response. So it's still, you know, it's just a very energetically demanding process. And so we just have to be very, very careful about cutting calories. And I always tell people too, you know, let your body lead the way. If you know, I would never tell somebody not to try something if they're curious if it would help them feel better, you know. But I think the key here is listen to your body and don't gaslight yourself. Because if you take this, if you cut calories and feel really significantly worse, that's when we got to pump the brakes and say, okay, what are we missing here? What else could be going on that's contributing to this state? And, you know, some people really do genuinely want to lose weight. And I think that there should be a safe place for those people to do that safely. But it's just a delicate thing when you have a chronic illness. And um we have to look at the whole picture here and just make sure we're accounting for everything.

Jackie Baxter: 18:55

Yeah, I I absolutely. And you know, I I think it's it's maybe looking at why as well, isn't it? You know, what why do you want to lose weight? And you know, that there's a spectrum here as well, isn't there? You know, there's there's someone who has put on a little bit of weight and they're feeling self-conscious about it, but it's not like a you know, medically worrying amount of weight, you know, and not to dismiss that person because you know, they probably are feeling terrible about it, um, but it's not a sort of medically concerning amount. And then you might have someone who's put on a very significant amount of weight. And, you know, again, it's you know, someone who has put on a lot of weight, actually moving around will be more difficult and take more energy if they have put on a lot of weight. So at what point would you say, and you know, again, it's probably not for you to say you should lose weight, um, at what point would it be useful for someone to lose weight? And how would you kind of look at doing that safely?

Lily Spechler: 20:02

Totally. So I would never put a number on it necessarily, right? Because we're always looking at the person. But I think there are some really important instances where, and also by the way, I'm just gonna preface this by saying, you know, everybody's body is their individual body, and everybody gets to be in charge of their journey. And, you know, if you don't need to explain to somebody like why you want to do a certain thing unless it's like really putting you in harm's way, right? So just prefacing it by saying that. But I think for medical reasons when weight gain would be a real concern, I mean, with mast cell activation syndrome, one of the big problems I see is that adipose tissue is actually can actually be estrogen producing. So, for example, like breast cancer, right? One of the reasons why the top breast cancer experts say they recommend weight loss if that's a concern for people, is because it's it has an estrogenic effect. And we know that really high estrogen levels, estrogen dominance, can really drive up histamine levels as well. So there's totally that connection there, where you might see somebody have a really significant weight shift, especially females, born female, have a really significant weight shift and then all of a sudden see their mass activation syndrome start to really, really shift in the wrong direction. And then we say, okay, well, this could be a factor at play that is, you know, turning on this reaction in your body. And so they're playing off each other, right? Because when we have really high estrogen levels, our body becomes even less good at putting the brakes on histamine. It's this really silly adaptation we have as humans. So that that could be one reason. Um, a lot of people in this community are hypermobile. And so sometimes if you are have a lot of excess weight, it could be putting strain on your joints that are it that are making you have more pain. You know, that's a totally that that can totally happen. Sleep apnea is another one that can definitely be influenced, and we know that that has widespread effects on the body. So that's a really, really important one. And inflammation in general, you know, it definitely can if you're having that really dramatic metabolic shift, it can increase overall inflammation too. You can start to see your CRP creep up, etc. And so there can definitely be medical reasons that weight loss makes sense. And again, if you're pursuing that, it's just important to do it in a way where you're really listening to your body because it matters so much that along the way you're not feeling more fatigued because of weight. Like weight loss should not make you feel more fatigued. If it is, that's when we pump the brakes and say, wait a second. This because basically, when you look at your metabolism and your metabolic health, I love people to think of it like an engine. We are learning how to fuel the engine. So a weight loss pursuit ideally should not be making you feel more zapped of your energy. Ideally, as you're, you know, really supporting your body's needs, you're feeling really good. Now, the one caveat I will say is that as you lose weight, unfortunately, a lot of toxins are stored in adipose tissue. So the one caveat I will say is like even if you are pursuing a healthy weight loss, sometimes, unfortunately, people can have it almost feels like this flu-like effect, where as they lose weight, they actually really don't feel good and your body actually really doesn't like it. And so I think this is where, you know, it just the person comes first. We're always looking at the person first. I think that if you're dealing with long COVID, weight loss in my mind is typically like secondary to just getting your symptoms under control, getting to a more stable place with your health. Um because of this factor, right? Where the weight loss itself, even if you are losing weight in a really supportive and healthy way, it can still make you feel lousy. And so it is really important that as you're losing weight, you're opening up those detox pathways, you're drinking lots of water, you're eating lots of cruciferous vegetables and fiber because it can make you feel worse. And for some people, even that little it makes you feel worse is like the tipping point for long COVID. And then it's like, is it worth it right now? I don't, you know, it's so person specific. So that's the tricky part about general, general advice for this is like it's there is so much nuance. And it really is so important to look at the person first and make sure that you know, we're not sacrificing anything for healthy weight loss. The person is always coming first.

Jackie Baxter: 25:47

Yeah. And you know, you you said that, you know, even healthy weight loss can sometimes come with sort of flu like symptoms, like so does long COVID, right? So, like, you know, you might even find that you're like, well, I'm listening to my body and I'm getting these flu-like symptoms. Is that because of long COVID or is that because of weight loss? And you know, it could even be quite hard to distinguish that, couldn't it? And and make a sort of informed decision of actually, is this a healthy thing for me to be doing right now?

Lily Spechler: 26:15

And and this is why, so I I do have a a lot, a weight loss course for long COVID, just to give people kind of this safe place to go. And in the course, I make sure people are stable first. So we actually don't start in any caloric deficit for this exact reason where I feel very strongly that people should be in a stable place first before they really pursue weight loss for the reason you just said, where it's like if you know, the last thing we want to do is destabilize it to do something that quote unquote should be making us healthier. So it's so important to be coming from a stable place. And that was like half the reason why I did it, so that people had that safe place to go, so that they're not just, you know, okay, here I am. Yeah, I can barely get out of bed, yeah, I can't walk across my living room, but I'm now gonna implement a low-calorie diet. And, you know, just it's it's a recipe for disaster. So yeah.

Jackie Baxter: 27:25

Yeah, absolutely. Um, now, you know, we we've just been talking about how you know that there are or there can be medical reasons for weight loss potentially being something that is useful for people. And you've just outlined a whole load of different um, you know, reasons, things like mast cell and inflammation and hypermobility. And I don't think we can talk about this without also talking about mental health, um, because you know, you you get the situation again, somebody who has been an athlete or a model or just cares about the way they look, and there's no reason why they shouldn't. And you know, they maybe have put on an awful lot of weight and mentally they're struggling as a result of that, and you know, mental health is a medical reason. So, I mean, how would you approach that? You know, maybe there's not a quote unquote biomedical reason for weight loss, but maybe there is a mental health reason. And how would you kind of approach that?

Lily Spechler: 28:30

I mean, again, like this is a way I preface this conversation because I feel like nobody owes anybody an explanation for why they want to do something unless they're putting themselves in harm's way. And I think that there has been this weird cultural shift that has happened where all weight loss is demonized, and I think that's really shames a lot of people out of, you know, it it's just shame-based. And so now people feel like they have to operate from a shame-based place, which isn't healthy either. So I feel like really the only situation I would say it's not safe is if somebody is pregnant, you know, if somebody has a really complicated, you know, if somebody has a complicated history, for example, like an eating disorder, I think it is really important to get that under control before pursuing weight loss. And then of course we're looking at BMI, you know, if somebody is already on the lower bracket and they are below what is considered a healthy weight, then you know, that that is putting you in harm's way. So at that point, it's like, okay, yes, you gained a little weight, but losing weight would put you beneath the bracket. You know what I mean? So is that safe to pursue weight loss then? And I would say not necessarily, right? So those are the situations where I would say it's, you know, not, but otherwise, I think everybody's body is their prerogative. And you don't need like your body is never up for debate or discussion, you know, your your choices for your own body are yours to make, and you should always feel extremely empowered and rooted in that. And, you know, regardless of the culture, right now, I think just let it, you know, you gotta do what's best for you. And if your driving force is simply mental health, which is not even simple simple, right? If that's your driving force, that's your driving force, and you don't need to communicate that to anybody. You're allowed to have that be your driving force again, unless you're explicitly like getting into harm's way.

Jackie Baxter: 32:26

Yeah, absolutely. And you know, I I think as well, like you said before, you know, doing it from a place of stability.

Lily Spechler: 32:35

Exactly.

Jackie Baxter: 32:36

You know, if if you're all over the place, you know, booming and busting, or you're crashed out really badly a lot of the time, you know, it's it's like maybe maybe find a way to stabilize before destabilizing.

Lily Spechler: 32:51

Um 100,000 percent. Exactly. That's I I think that's the key, especially with long COVID. Like I would look at weight loss secondary to long COVID because I see weight changes as a byproduct, it's not the root cause. So sometimes when You address long COVID itself and you get to a better place with that, the weight also might settle back to where you want it to go without even quote unquote trying explicitly for weight loss, you know?

Jackie Baxter: 33:30

Yeah, absolutely. Because the the body is working better, um, and therefore able to be more stable in in every way, I suppose.

Lily Spechler: 33:40

Exactly. Exactly.

Jackie Baxter: 33:43

So you said that it's not just a case of calories in, calories out. Um can you give just a maybe a very brief kind of idea of how someone with long COVID would approach losing weight? Because uh I think you know, most people, I mean certainly myself, you know, if I'm like, right, I want to lose weight, well, I need to eat less. Um, you know, eat less, exercise more. No, that that's not really possible with long COVID, or certainly not safely.

Lily Spechler: 34:17

Exactly. So the way I approach it is first, and this is probably gonna shock some people, but I actually recommend adding the 15%, and it's a range, right? Depending on how severe you are. So I in in the course I say like 10 to 15%, depending on where you are, to your BMR. So your BMR, your basal metabolic rate is how many calories you burn based on your size and your height. We add that extra percentage on to account for the metabolic demands of long COVID, including the tachycardia, the blood pressure changes, the chronic inflammation and the stress on the body. And so adding more and then just staying. And of course, also as we do that, I really like people to hone in on blood sugar because honing in on your blood sugar, again, I see that as part of the stability phase. Where, and I I have said this a million times on my Instagram in the past year. I really feel like erratic blood sugar is underratedly the biggest driver of long COVID symptoms. I really, really do, specifically low blood sugar, actually. So I I think I've had a lot of people get CGMs this year just because it's so eye-opening to see the trends against your symptoms. And even if people are in a normal range, when their blood sugar drops even a little, they'll they'll start to feel their symptoms really kick on. So paying very close attention to your blood sugar, I think, is an absolute key. And so as you add on the extra calories, we're really looking at a stable plate. So carb fat protein, I like people to keep a pretty tight ratio between protein and carbs. So ideally like 10 to 15 grams. So for example, if I'm eating, if I'm eating 10 grams of protein, I'm eating um about 20 grams of carb, maximum like 25. So kind of trying to keep those levels pretty balanced, understanding that you're probably gonna be more glucose sensitive or sorry, more insulin resistant than others. So just keeping that in mind, like keeping that bracket pretty tight, really focusing on protein, and then that's when I like people to really focus on the dysautonomia support. So whether that looks like electrolytes, compression, um, different interventions like Utah Adapt, if they are able to tolerate it after they've started eating enough calories, and then after they start to feel a little bit more stable, we just tend to leave it there for a few weeks. And what I like to see is a few weeks of no weight gain. So if somebody has been consistently gaining weight up until that point, that's our answer, right? So typically what I'll see is the weight will start to slow down and then stop. And then once it stops, I like people to just keep it stopped for a couple weeks, just ride that wave, let your body get really stable, let the inflammation start to come down. And then I start to add little incremental deficits, but it's from that place of increased calories. So the deficit is not coming from your BMR, it's coming from the additional calories, if that makes sense. Right. So we we calculate these little deficits, and so it's it's really interesting because usually, and then that's a really, you know, it can be a process because we see what you can tolerate. If we start to go into a deficit and you become really symptomatic, that's when we come back up a little bit and we see what you're able to tolerate, and we see what weight loss cadence you can tolerate. Because, you know, in a healthy person, ideally it's like one to two pounds a week is considered healthy weight loss, right? For this population, they might not feel healthy at that. That might feel like doomsday. So maybe for these people, it's you know, one to two pounds a month, but they're able to consistently do that. And so it's really finding like what is your sweet spot where you can tolerate it. You're subsymptomatic, you are not feeling worse. Um, and again, just really like beating that drum of stability the whole way through where your blood sugar is really stable, you're trying to keep a stable blood pressure. And along the way, we do histamine support as well. So, of course, that's always gonna be a part of it. Like I do have most people on a low histamine diet, and that's gonna be a piece of it too, but I don't necessarily see that being a big factor in the weight gain. It's more so the way they feel, even though sometimes it can be the mass activation syndrome can be a contributing factor with water weight. So, like fluid retention can be an allergy thing, right? If you've ever had an allergic reaction, then your eyes get really puffy, you know, you can have fluid retention. But I see that as not being the whole picture, the way blood glucose is and the way calories really is. And yeah, that's kind of my overall framework for how I do it. Yeah.

Jackie Baxter: 41:01

I mean, that makes total sense. But like when you first started answering that question of like, so how would you lose weight? And you said, well, actually, we feed you more. I'm thinking, did she answer the right question there to start with? And then like it makes absolutely total sense, you know. You you you go more to then come back, focusing on that stability and going slowly.

Lily Spechler: 41:23

But it but what's so interesting is like even we add the more though, yeah, that's when people will typically stop gaining weight.

Jackie Baxter: 41:59

Yeah.

Lily Spechler: 42:00

So it's so fascinating, and nobody believes me until they try it, you know, and I get that because it just sounds so counterintuitive. But that is what I've seen for most people, not everybody, you know, not every single person, but most people.

Jackie Baxter: 42:17

Yeah, that's amazing, isn't it? Um, and it totally comes back to kind of where we started that actually that if the body isn't getting enough fuel, then it's gonna go into kind of danger mode because it's you know, and then burn it up faster, um and and save it more, hence, hence the weight gain. Um so yeah, it makes it makes total sense. Um can we just talk a little bit about the the other end of the spectrum now, the sort of the weight loss? Um, because you know, we we do see this happening. And as you you know, you started off by saying that actually the weight loss would worry you more if you started seeing sort of rapid rapid weight loss. Um, and you know, obviously there are all sorts of factors for this, and you know, often people struggle to tolerate certain foods and take in foods, and that may be contributing to it. So, what would your kind of approach with someone who is losing weight? And how would you start to sort of look at helping them to gain weight and to you know get more more of what they need in them, basically?

Lily Spechler: 43:32

Totally. So for these folks, it's funny because it kind of starts out the same where we're still at, and those people, it's definitely at least 15% more calories based on their BMR. So I take their BMR with a BMR calculator and then adding 15% at least, or up to 20, depending on how severe the weight loss is. But with these folks, the complication is more so how do we get the food into their bodies? Because often when we go zero to 100, it doesn't go well. So it's a slow process of getting your body used to eating more food first. And there's a lot of reasons why somebody might have had that weight loss, and it's usually never one thing. You know, it could be an issue of malabsorption, it could be an issue of you know, you just have really bad dysautonomia and your body is just burning through calories, plus now you've got bad MCAS, and so on top of it, you're just barely eating because you're afraid of eating. You know, that that can definitely happen. And it's funny, you know, some people their metabolism metabolism will slow down. For other people, they just have a different response in their bodies and they'll just lose a lot of weight. And um, yeah, again, the challenge is how do we get enough calories into the person? And so I think that's when being creative is really important. You know, we'll we'll use a lot of honestly, sometimes I'll have people do like olive oil rich recipes, right? Like we'll make an olive oil bread and it's just a really high calorie, um, high fat, high protein food item to try to get them to gain weight, because we also want high calorie, low volume. Because if you're having that bad of dysotonomia, part of the problem is whenever you introduce food into the body, about 20% of your blood gets diverted to the GI tract. So if you already have blood pooling and then you're losing more blood to the GI tract, that's really dysregulating. So, how do we get you on a high calorie diet while minimizing that blood pooling effect and minimizing that stress around your body? And so that comes down to like dysterinomia management, but also high caloric density, low volume foods. And that's a tricky, it can be a tricky one. I mean, yeah, sometimes like I really try to stay away from the weight gain products, but like in extreme cases, sometimes I've needed to use things like Benacalorie, which is just something you, you know, it's like a tasteless food that you would mix into your food. It's like a food enhancer. So it just adds calories to your food without changing the volume. And, you know, I try to never use products like that, but sometimes they're, you know, they're needed when we've exhausted all of our solutions with food. And yeah, but those cases, it's really cool when they start to feel better because it's just such a dramatic improvement, usually, and they just feel so much better. And you know, when somebody is in that place of extreme weight loss, it's tricky because it's hard to get them unstuck without the nutrition piece. Because even though they're having extreme dysautonomia and they need some type of autonomic nervous system retraining, at that point, any additional exertion could really put them into trouble. So the preliminary step of getting their weight to a healthy place is just so essential for getting them unstuck. And yeah, it's figuring out how to do that. And, you know, when people, I've had a lot of people have extreme food sensitivity. So they'll come in and they'll say, you know, I had all these foods and now I'm down to five. And what I'll often do with those cases is just use, leverage their safe foods to eat enough calories still. So let's say, you know, they're they're down to five foods. How do we get creative with those five foods to make sure you're at least meeting your caloric needs? And then at that point, your body will be a little less reactive when we do start to expand your diet. So the first step is just malnutrition, you know, macronutrients. I don't even care about micros as much when we're in that state. It's, you know, macros first, and then we we build, we build you out. I do care about micros, by the way, but like, you know what I mean? In that, in that place, we're just focusing on calories first. Um and yeah, but I think with those folks, it's not necessarily that they're in imminent danger or anything. It's I mean, it depends. It does depend, but for the most part, it's more so just that they're a little more stuck because rehab will be that much harder. Like it will just feel impossible before you get uh into a healthier weight, yeah, weight category and just get your calories up.

Jackie Baxter: 49:22

Yeah. So actually, from both ends of the spectrum, whether you are, you know, significant weight gain or whether you've had significant weight loss, it's actually bringing safety back into the body before trying to make any sort of dramatic changes, isn't it? It's making sure you're getting enough in order for your body to feel safe enough, um, which which is amazing. Um just before we finish, you mentioned uh with the the sort of uh significant weight loss, um getting in those kind of like really calorie dense foods, you know, what are the things that are the most calories for the least volume? What sort of foods are they?

Lily Spechler: 50:09

So it's definitely gonna be fats. So for every gram of carb or gram of protein, it's gonna be four calories. For every gram of fat, it's gonna be nine calories. So it's, you know, when you're trying to get more calories, a couple of tablespoons of olive oil, it's not a huge volume, but that's a lot of calories compared to a couple spoon, you know, forkfuls of chicken, of chicken breast, right? Even though it's the same volume, the olive oil is a lot more calorically dense because it's a fat. So that's really, you know, how do we like if we're eating a piece of bread, for example, how do I maximize the amount of fat that we're getting into that bread to make it just the highest possible calorie option while not being such an overwhelming volume that it's gonna really make your blood volume do crazy things? So we're not talking like swigging bottles of olive oil, like I mean, I have had definitely, you know, I mean, one client had to get really creative, and we did some like Himalayan butter tea one time, which you know, that's what he tolerated, and he was able to gain weight from that, you know. And I think part of the reason why he liked it was like because it was a tea, it was expanding his blood volume at the same time. So he's getting all those calories, but it was expanding his blood volume. So the drinkables in the beginning can actually be really helpful for that, big for that, if you're somebody who's really struggling to get food in because of these issues.

Jackie Baxter: 52:04

Yeah, so it really is. It's yeah, be be creative and and get those calories in somehow.

Lily Spechler: 52:10

It's it really is, and you know, it doesn't have to be fancy, it really doesn't at all. I I think the simple repetition when you're in that state, if you can be simple and repetitive and knock it out of the park, amusing.

Jackie Baxter: 52:28

Yeah, yeah, it doesn't have to be pretty.

Lily Spechler: 52:31

No, definitely not, definitely not. We're not trying to win top shaft. We're just trying to get from point A to point B.

Jackie Baxter: 52:40

Yeah, it's it's creating, as we've said again, you know, creating that stability that you can then start to build from. Yeah. Lily, thank you so much. I feel like I have learned so much in the last what 45 minutes. Uh, this has been amazing. So thank you so much for coming back on. Um, I'll make sure that all of your links and everything that you've mentioned go into the show notes. So if anyone wants to check out your Instagram or get in touch with you, then you know where to go. And yeah, thank you so much. This has been awesome.

Lily Spechler: 53:13

Oh, it's my pleasure, truly.