Understanding and Healing from Long Covid and Chronic Illness
Welcome to the Satiated Podcast, where we explore physical and emotional hunger, satiation and healing your relationship with your food and body. I'm your host, Stephanie Mara Fox, your Somatic Nutritional Counselor.
Over the past several years I've had more and more people come to me navigating both binge eating and also things like long covid, POTS (aka postural orthostatic tachycardia syndrome), MCAS (aka mast cell activation syndrome), and nervous system dysregulation. I've sat with people in their frustration, confusion, and sadness about navigating so many symptoms and binging on foods that increase their physical symptoms leading to more dysregulation where eating comes in even more to self soothe. I get how confusing this healing journey can be. As many of you know, it took me about two years to heal from long covid and while I would say I'm about 97% percent back to where I was before I got covid there are still symptoms I experience. I've learned a lot about the body because of this long covid adventure and I've realized that anything I discovered on this journey could be applied to anyone struggling in their relationship with food to further understand their body. Your reactions to food can be due to both physical and emotional reasons. I chat about this today with Lily Spechler.
Lily is a registered dietitian, fellow long hauler, and expert in post-viral recovery. She was able to regain her health and vitality after getting long covid through using her rigorous 5+ years of education to become a Registered Dietitian, her body intuition as a trauma-informed Registered Yoga Teacher, and her detective skills as a former journalist for Good Morning America. She now supports others through symptoms like long covid, POTS, MCAS, and dysautonomia to reclaim their lives. We chat about our own long covid healing journeys, what can happen in the body after getting long covid, navigating histamine issues, how food and supplements can play a role in increasing or decreasing bodily symptoms, the non-food reasons you may overeat or gain or lose weight, and so much more. Even if you don't have long covid there are so many gems in this episode to take away.
I have finally set the dates for the next Somatic Eating® Program which will start on Thursday, May 22nd-August 7th. I have had many of you ask for classes that are earlier in the day so classes will alternate between 3:00 pm ET and 5:30 pm ET. And, if you can't attend class live all classes are recorded to watch the replay. You can join the waitlist to be first to know when doors open and receive a waitlist only gift at somaticeating.com. Now, welcome Lily!
I am thrilled that you are here, and I feel like a little bit of this podcast episode today is also just something that I wanted to bring onto the podcast because of my own long covid healing journey. And I know that I've been so open about that here, that more and more people have come to me trying to navigate both what's happening, symptom wise, in their body and binge eating, and they're so confused, and so I'm just really excited to get into all the things we're going to talk about today. First, I just want to hear about you and like, how you got into your focus of long covid healing.
Lily Spechler 03:51
Yeah. So I think probably 99% of us who specialize in long covid I experienced it myself. So I got covid. I saw somebody call themselves a first raver the other day. I love that. I'm gonna adopt that. So I was a first waver raver got, like the first Delta strain, and was going downhill from there, and was super confused, like I had never experienced any of these symptoms before eventually came to discover it was POTS, like so many of us, living with dysautonomia, and just went on a whole healing journey with that. I think using the word healed is very bold, but I got to a place where I was very functional and living a very normal life, and I just felt very called to help others get through it, because it is just such a shock wave, and there's such a lack of providers in the space helping people from point A to point B. So yeah, that's kind of how I got into it.
Stephanie Mara 05:00
Yeah, thanks for sharing that I experienced something similar of just being so confused about what was going on in my body, and I look back now and realize that there were a lot of things that were probably already occurring in my system before I got long covid. And that getting covid, I was not a first waver, but I unfortunately was part of the Delta was leaving and on its way out, they're like, okay, people aren't like getting the Delta strain as much anymore and then right as it was moving on its way out in April of 2022, got the Delta strain. And I was like, noooooo, you were leaving. But you know, I realized looking back that I was kind of always very confused before I got covid, of like, why would my face just suddenly get really, really puffy? I think there was already some histamine issues that were going on in my body that now I'm like, oh, I'm having a histamine flare. Like, now I have the language for it that brings so much more compassion and understanding of what's happening in my body and how to support myself before I even got covid. I'm curious if you experienced something similar.
Lily Spechler 06:19
I would say yes and no, I have hypermobility, which is a comorbidity, so that is, like, lifelong and I was just like, oh, I'm really good at yoga, you know, for example, but I never experienced like, the things that got activated by long covid, like having full fledged POTS, or the MCAS. I actually had never experienced that before. And for me, I was having a really hard time breathing, and that was a first, like I had never had asthma, and they were putting me on all these inhalers, and nothing was working. And now I understand that, oh, it was MCAS, but I had no idea, and I didn't really have any of that history. Like, it was pretty new to covid.
Stephanie Mara 07:08
Yeah. And so for some listeners who are maybe new to all of these words, like, I know we're kind of well versed in them now, but if you could explain, like, and I know this is a big question, like, what is long covid? All these words of like POTS and MCAS and histamine, like, I know these are words that are a little bit more mainstream because there's more people that are talking about it after getting long covid, but I'm curious if we can go into some definitional explanations.
Lily Spechler 07:38
And that's like, the tricky and heartbreaking thing is, there's not really a clear and concise definition of long covid. So well, actually, there was one that came out this year that was a little bit more thoroughly encapsulated all of it, but there's over 200 different symptoms associated with it. And where we're at now, I would say I'm pretty confident that what long covid is is some expression of dysautonomia or MECFS, and the two can overlap. So dysautonomia is a dysfunctional autonomic nervous system. Your autonomic nervous system is supposed to be the one that just runs on autopilot, like you shouldn't really need to think about blinking or salivating when you're eating or digesting, but what covid can do is really throw off that autonomic response and make it so that it's dysfunctional. So blood pressure is one of the functions that gets regulated by the autonomic nervous system, and even though blood pressure does not fully encapsulate the experience, it's often used as a proxy for diagnosing dysautonomia, because otherwise it's pretty much invisible. You can't see it on an MRI or a CAT scan. You can't see it on an x ray or blood test. So blood pressure is one proxy. But even then, some people don't really have those classic blood pressure changes, but a lot of their symptoms still are dysautonomia, or congruent with dysautonomia, and then MECFS is so dysautonomia can be a component of MECFS, not for everybody, but MECFS is a slightly more severe presentation of this of long covid and what MECFS and we have barely any research, so I'm not even fully comfortable like defining it, but it's malaise that is different than just being a little bit tired. It's different than just needing a rest. Most people with MECFS will have unrefreshing sleep, and a lot of specialists believe that it's a disorder of the mitochondria, so the way your body is using energy is not appropriate. Like a lot of people, for example, they'll experience a full on crash from doing something as mundane as like cooking food or brushing their teeth, and it's the type of thing that won't go away from just resting. And what's interesting is, prior to covid, dysautonomia and MECFS were the two leading post viral illnesses. So like you see it a lot in Lyme disease, for example. So it's not that these conditions are necessarily brand new, and I think that it can feel very scary and new, because we're calling it long covid. It's something different. But I think there's a lot of research that exists in the viruses that have come before that do a pretty good job of explaining at least partially, or like, mostly, what's happening inside our bodies.
Stephanie Mara 10:53
Yeah, I remember because I also had POTS symptoms as well that I would just be standing in the kitchen, and then all of a sudden, be like, oh, I'm going down and just like, crash to the floor. I feel very grateful that I had my husband a part of my life. And you know, he would basically be like, making me an electrolyte drink with like, honey in it, just to be like, my body to be like, okay, let's stabilize you. You're okay here, and I just have to be like, on the floor with my head between my legs for like, 20 minutes, just like sipping on electrolytes. Like, I'm actually still wearing compression socks today. Like I'm wearing compression socks right now.
Lily Spechler 11:31
I've got my compression socks on. I got my electrolytes.
Stephanie Mara 11:33
And so you learn over time, like, okay, this is what my body needs. I'm curious if we could connect this with food, because I know that initially discovering and I didn't have like a doctor or anyone guiding me on this, I just in all of the work that I've done with my work of Somatic Eating®. And you know, my experience through long covid informed me even more of what I now teach others around how food is connected to their nervous system is that, you know, there was particular foods that would feel more stabilizing in my system, and ones that would make like POTS and histamine issues, much, much, much worse. And I know you speak a lot about that on social media.
Lily Spechler 12:21
It kind of takes everything you previously understood and flips it on its head. Because a lot of these foods that are a little bit destabilizing, or a lot of destabilizing, depending on who you are, a lot of these are very healthy foods. So it's not something like, oh, a cookie makes me crash later. It's not like that. It's like a tomato or a lemon can make you pass out in some cases, and it's so outside of what most people, certainly myself, like understood as healthy eating, or eating in a way that supports your body. It really kind of flips it on its head.
Stephanie Mara 13:03
Yeah, and I know that you have talked about and again, I know that long covid isn't happening as much as maybe it was many years ago, but I feel like there are some people who are potentially even navigating long covid symptoms, like we're talking about, of feeling slightly extra tired, having a hard, harder time getting through maybe a physical movement that used to be much easier for you, getting lightheaded and dizzy, feeling like you're having more skin reactions. You know, there's all these things that is like, you know, I've even heard some people be like, oh, oh, I don't have long covid. But like, after the last time I got covid, I just suddenly had, like, a harder time swallowing, but like, I'm fine, like, okay, like, there's something going on in your body that your body's trying to tell you, like, it did actually affect your system in some way.
Lily Spechler 13:54
Yeah, and it can be really sneaky, because A sometimes covid is asymptomatic, so you might not have even known that you got an infection, and then suddenly these body wide symptoms pop up that are seemingly unconnected, and it's like, well, I don't even really know what to connect them to within each other, and I don't even know what the stimulus was. And also, sometimes it doesn't happen right away, so you can get an infection, but long covid will take three, four months, usually, like three, but threeish months to develop before you even notice these symptoms. And that's also really confusing, because it's like, well, did I get exposed to something new that wasn't covid, didn't test positive for covid, you know? And I think people have a really hard time putting it together also, again, like these conditions are so invisible, so you could even fully realizing that something is very wrong, but all your labs are like clean bill of health, and your doctor is like all of your vitals look great. What do you do? You know, so it's a tricky one. And also, I think a lot of people don't have great mind body connection to begin with, and so if they are feeling a little more fatigued or, you know, a little bit more heart racy or just a little bit more sensitive or reactive. Some people won't even pick up on that. They kind of just morph into that, without being like, oh, there was a way I felt before, and then a way I felt I feel now that is different. Like sometimes it can be so subtle, like that, where one blends into the next. But the scary thing is, it can devolve if you don't address it.
Stephanie Mara 15:44
Yeah, thanks for bringing that up. You know, I even had to get better at my somatic language through this process, because, you know, I'd be talking to Ethan, my husband, and I'd be like, I'm dizzy. And he's like, okay, what does dizzy mean? Like, is the room spinning? And I'm like, no. He's like, okay, so you're not dizzy, so are you lightheaded? So we'd have to kind of find a language to describe what it is that I was actually experiencing in my body. And initially I didn't know how to describe that. I was like, I'm feeling something. I know that I don't feel regulated, like I don't feel grounded in this moment. I know that something is happening, but I also don't have the language to really describe what it is that I'm experiencing in my body. And I agree with you that it does take practice to be like, okay, how do I describe this to someone else so they can really understand what my lived experience is right now.
Lily Spechler 16:42
Sometimes it's frustrating, because you can appear totally normal, but in the inside, it's like, I feel like I'm gonna die, and they'll look at you like you're crazy, because it's like, well, doctor said you were normal. There's nothing we can point to here that would explain what is going on. So it's got to be anxiety. And that's like the hardest part. I think I experienced the challenge of that, and I think most of my clients, that sentiment of, just like, it's the most gaslighty experience ever. It's hard to explain and it's hard to prove right.
Stephanie Mara 17:17
I mean, I know that a lot of practitioners talk about how there isn't really a test to, like, test for mast cell activation, which is what we're talking about in MCAS. And so there's just a lot I feel like, you know, I talked to one of the covid doctors that I worked with was like, one of the beneficial thing that's coming out of covid is that things that we had never connected before we're now getting to understand in the body, like, for example, that the way that breathing and digestion is connected is that, you know, if we aren't getting in enough oxygen, and then, you know, all of our resources are moving away from our digestive tract towards, you know, our brain, our heart, like, everywhere else to try to, like, make sure we're gonna survive. And digestion is just shut down. And so we're like, wait, how is my breathing connected to my digestion? And it's like, yeah, your body needs to have enough oxygen to make sure that you can be sending all of your resources to your digestive tract so that your digestive tract can turn on. I find that some of the doctors that I've talked to are starting to, like, make these connections of really, when someone says they have a digestive issue, that actually what's happening is they're having some issues with their lungs, and they, you know, previously had, like, never looked at that before, to stop actually paying attention to the surface level digestive symptom that's coming at them and being like, okay, what else is going on in the body that's maybe leading to the digestive issue.
Lily Spechler 18:51
Yeah. And also, just before we leave the topic of like blood flow and digestion, it's a negative feedback loop too, because when you have dysautonomia. So backing up a few steps, when you have dysautonomia, you can kind of get blood pooling. So a lot of people have a low blood volume, because your autonomic nervous system is responsible for sending blood upwards to the head and heart. So people with dysautonomia, not everybody with dysautonomia, like there's a lot of different types, but POTS specifically, which is the most common one. After covid, people will have this low blood volume, blood pooling, so they're already kind of starting out their meal with slightly less blood in their brain and heart than someone without dysautonomia. And then when they eat, blood flows to the digestive track, and that alerts the stress response, because if you already have just a little blot in your head, and now you get more shunted away towards your GI tract, you get more stress. And so it's like that alone can be triggering that air hunger and need to breathe, which kind of then further throws off digestive. And it's just this, like, nasty feedback loop that can be so hard to break through. So I actually have all my clients eat in abdominal binders for that reason.
Stephanie Mara 20:10
Yeah, I'm curious, because I know before we started to press record, we were talking a little bit about this connection between, like, binge eating and long covid. And I'm curious, from your experience, is that, if you have found some of your clients like struggle with continuing to eat because now their body's in a panic, it doesn't feel good, and so they're like, oh, maybe I just need to eat more. Like I know for myself, one of the confusing pieces that I kept trying to have to figure out of, is this blood pressure or is this blood sugar? Sometimes I just didn't know, like, we even got a blood pressure cuff because I was like, I don't know why it is that suddenly I'm feeling lightheaded. Is this because I actually physically need more food, which I do want to come back around, because I know you've written posts about how much more food the body needs during long covid healing, or is this because my blood pressure is dropping, and actually I need to go eat some salt and drink some electrolytes and, like, rest my body for a second.
Lily Spechler 21:15
Right. And the other crazy thing, and it's probably both, is the answer. Like, it's probably both well, I've had two clients now come in wearing CGMS to our work together, so it was honestly very helpful for me to really see these numbers. So one of my clients has type one diabetes, and when they would wake up in the morning, they would stand up, and because they were obviously not drinking water through the night, their blood volume is a little bit lower in the morning, and they would stand up, and their blood sugar would spike to 400 because one of the things that happens In that stress response is, your liver will release glucose into the bloodstream. So we couldn't get their blood sugar in check until we implemented, you know, wake up, drink electrolytes first thing, put compression on before you get out of bed, and then get out of bed, and then their blood sugar was normal. And then I had another client who so she had PCOS. She came in wearing a CGM already, and it was really fascinating, because no matter what we did, we could not get her blood sugar to stop spiking at meals. I threw all the tricks at it. You know, we're doing bitters, we're doing food order, we're making sure she's, like, super hydrated, so that she didn't have blood pooling when she ate. But it wasn't until we implemented really heavy duty compression that we could get her blood sugar to stop really spiking at meals. And that was just so fascinating. And that's when I realized, you know, it really it's so profound, how much dysautonomia can impact your blood sugar. So it's like the blood pressure triggers the blood sugar response, and then people will go low after they've gone high with the blood sugar.
Stephanie Mara 23:16
I love all this stuff. I'm so excited right now, just that you're even bringing this up, because I find that even someone who doesn't have long covid, I think could also sometimes experience exactly what you're talking about, where their blood sugar gets a little bit too low after a meal, and then there's this panic that happens that it's like, oh, do I need to be eating more? Like, what's going on here, and there's, you know, I find that when, like, that blood sugar goes so low, there is kind of this, like, gnawing feeling of, do I need more food? And it's a really confusing bodily experience that then you find yourself eating more, and then your physical body's over full, and you're like, wait a second, but I thought body you needed more food. And so I love that you're bringing in right now, and I love to explore this, that there's so much focus on the food, how to eat, what to eat. Are you eating the right things? Are you eating the right things and the right timing? And sometimes it doesn't have to do with the food. It has to do with like, no, you are doing a great job eating balanced meals, eating consistently, and that your body actually physically needs more support with blood flow, just so that your blood sugar levels maybe don't crash as much at the end of the meal, so you feel more stabilized by your eating. So I love that you're bringing in this aspect to just being aware of how your body is responding, and bringing in a lot of curiosity around, like, what could be going on here that maybe has nothing to do with the food itself.
Lily Spechler 24:48
Right. And so many of my clients will come in and say, I'm reacting to everything, like I'm allergic to food. I had a client one of the my like, longterm clients, I love her. She came in allergic to water, but it's not it's that when water or any food hits your body, there's dynamics involved with that, and it's dysregulating, but it feels a lot like an allergic reaction, because it is the stress response. So much of it comes down to, I think, really understanding dysautonomia. And even if you have MECFS, like, there's typically an aspect of dysautonomia in there, yeah, it's just so important to understand how that works. I feel like all I do all day is just show people like graphs of the autonomic nervous system. Like, this is sympathetic, this is parasympathetic, almost everything you're describing can be really understood through that lens, to an extent. I mean, obviously there's so much nuance, but I think dysautonomia, if you are experiencing long covid, the first thing to do is become a wizard at understanding dysautonomia.
Stephanie Mara 26:03
Yeah. And the other piece that I want to bring back around is how much more food a person needs to be eating. And I find that when someone is trying to diet and they're like, well, I'm sick, I'm not moving as much shouldn't I eat less? That that's actually backfiring, and I know that, like, I don't know, probably the first month or so after I got covid, I was voraciously hungry. I was eating more food than I ever had before. And like, not getting full, like, my body needed so much nutrients to repair itself. And so I'm wondering if you could speak to that a little.
Lily Spechler 26:44
Yeah, and I'll go off my experience as well. So after I got covid, I didn't get those hunger cues, actually, but I was becoming underweight, and I was really confused, because I was just like, eating the same that I've always eaten. And I was like, why am I all of a sudden, like, 12 pounds lighter in a short amount of time? Like that doesn't seem healthy. And then I eventually did become, like, officially underweight. And I was like, this is really weird. And I felt so thankful that I happened to have been studying chronic obstructive pulmonary disease at the time and learning that you need so many extra calories when you have a dysfunction like that. And by the way, dysautonomia has studies that compare it to the same disease burden as COPD or even congestive heart failure. So it actually carries the same disease burden, which is wild and I think, just a helpful thing like anyone out there who's going through it, so that others understand how severe it can feel. That's a really helpful thing to compare it to, because it does, it can feel just like that. So with chronic obstructive pulmonary disease, because you have labored breathing, the labored breathing alone raises your caloric needs by about 800 calories. Then add in all of the inflammation, brings your needs up even more. With chronic disease, it really is important to especially, and this isn't even like, this can be acute even, you know, really, when people are at their rock bottom, like, that's also acute, and I typically tack on about 15% extra calories to people's diet, especially protein, is so so key. Because what will happen is, you know, I've had bodybuilders come in and be like, where's all my muscle mass? Like, it's just gone overnight, and that's what happens. So it's so important to protect any muscle that you do have, because muscle is also our primary blood pump. So well, not our primary but like one of our primary blood pumps. So if we just waste away all of our muscle, we're also losing out on our blood pump, because your muscles literally pump the veins and help your blood circulate. So not only do you have dysautonomia, but when you lose your muscle mass, you're losing that support. So it's so key to protect that as much as possible. I've had people who message me and they're like, I'm on an all liquid diet, and I've gained 60 pounds this year, because not everybody, like personally, I became underweight, but a lot of people have the opposite effect, where they'll start gaining weight rapidly. And I used to think that it was just, you know, your metabolism slows down in order to catch up to your metabolic needs, which is true, your metabolism slows down in that case to basically preserve calories. But now, after those CGM experiences, I also really do think that dysautonomia is also a major driver of insulin resistance. So because you're getting this inappropriate spiking of blood sugar, and it's forcing your liver to just work overtime, or, sorry, your pancreas to work overtime, producing enough insulin to process that weight gain can happen from that too. So I've kind of put the two and two together now where it's like, we really raise caloric needs, but then also eating and abdominal compression is so key to counteract some of that stress response from the blood pooling.
Stephanie Mara 30:28
Yeah, and just want to connect this with anyone who is listening that is just fascinated by the conversation, but maybe doesn't have experience with long covid is what you just pointed out, is also continuing to dispel the myth of calories in, calories out, and that there are a million other reasons why the body will gain weight, lose weight, hold on to weight, and that it's all its attempt at trying to regulate and respond to a dysregulated nervous system. And so, you know, I know a lot of the times I'm conversing with those that I work with around focusing less on the I have to change my body, or, why is my body responding this way? Or why is it like holding on to weight, or whatever it might be, and it's like, actually, can we just focus on the message in how your body is expressing itself now, and that potentially it doesn't feel safe, and we have to kind of build that sense of safety, and we have to support your body and moving more into that parasympathetic nervous system, more of the time. We want both the parasympathetic and sympathetic. I always like to go back to that, because sometimes there's that experience that you see on social media of just like, oh, we we never should be in like, a fight or flight response. And it's like, sometimes that's, you know, necessary, and the symptoms...
Lily Spechler 31:51
You gotta wake up in the morning.
Stephanie Mara 31:52
Right, gotta wake up in the morning. It's just the state of mobilization, just to like, yeah, wake the body up. And we want to find more of that nervous system flexibility, where we're spending more time in that and that can also just if we see long covid also as a trauma response in the body, like anyone here who has maybe experienced past trauma like these, things could also be happening in your body as well, based off of how the nervous system responded to that.
Lily Spechler 32:07
100%. I will say, like a lot of my clients, get stuck in the nervous system regulation programs that are out there, because it's a physical driver that, yes, it's the nervous system, but it's like a different way of understanding it, if your body is like rapidly losing blood in the brain from orthostatic intolerance, like it's really hard to deep breathe yourself out of bed, like...
Stephanie Mara 32:52
Absolutely. 1,000%.
Lily Spechler 32:54
You really need compression and eventually to retrain your autonomic nervous system. But I think that is one of the confusing elements to it, because people will be like, What am I doing wrong? You know, I do my yoga, I do my meditation, and my breath work and all that stuff is amazing. It's essential. It's literally essential, but it's not going to be able to override something like dysautonomia, which, yes, it's a nervous system disease, but it's like, also involves the baroreceptors too.
Stephanie Mara 33:28
Yeah, thank you for that clarification. You know I was on an oxygen concentrator while I slept for about a year, and completely understand what you are saying right now of like there wasn't a Stephanie, just take some deep breaths. Like, why are you so nervous and scared right now? There was no somatic practice of shaking or breathing, or, you know, proprioception, or anything that I can do in that moment. And once I finally got the oxygen concentrator, because there was a period of time where I was kind of turning a little bit into not an insomniac, but like, it was really hard to sleep because my oxygen levels were falling way too low while I was sleeping, and I would actually jolt myself awake until I worked with someone eventually that was like, we need to get you on an oxygen concentrator while we support your lungs in healing and that I finally started sleeping again. And so, you know, there was no like, somatic protocol that I could have done. Like, my body literally needed help getting in more oxygen.
Lily Spechler 34:32
But like, you need all those somatic tools to be able to soothe yourself and be like, we're gonna figure this out. But like, it's, it's the both, it's totally the both.
Stephanie Mara 34:43
Yeah, absolutely, I'm wondering if we can come back around to the food piece, because I know sometimes you're like, recommending meals and foods and things that can kind of very be supportive and in a way, of what we were just talking about, of like, there's no, like, ultimate healing, longcovid diet that you can be on, but there are some things that can be helpful.
Lily Spechler 35:05
Yeah, so high protein diet is so key. I typically, I mean, depending on your body and your function, I would recommend anywhere from like 1.3 to 1.6 grams of protein per kilograms of body weight, that's significantly higher than the RDA, and part of the need is a like, you gotta combat the muscle wasting and the chronic inflammation. I always explain this to people, like, if you were to walk into a burn unit, you would be put on a really high protein diet to literally help regrow your skin. And same thing, like, if you got a really traumatic brain injury, you would probably be given double portions in the hospital to combat all of that oxidative stress. I treat it like that in a way, because it really heavily involves the brain, and there's so much micro trauma to our tissue and our blood. So really helping to stabilize by giving your body plenty of protein, obviously going slow, because you don't want to give like, too much, too fast, but in a slow way, really increasing protein, getting yourself up there is so key protein also helps our liver get enough albumin to maintain blood in the brain, and it helps with the blood sugar response. So if dysautonomia starts driving this insulin resistance, its the protein that's going to really help keep us stable. So the protein is so key, and then low histamine diet, not everybody, I mean, there's varying extents, but almost everybody really finds relief. Like even people who are like, that's not me or I don't fit the bill for that, typically, even those people are going to find significant relief. Using the word mast cell and MCAS, but I haven't even explained like what that is, but yeah. So basically, the mast cell is just one cell, type of immune cell in your body. So we have a lot of different types. They all kind of different roles, and the mast cell sits in the places that interface with the outside world the most, as well as our connective tissue. And when we encountered covid, that was one of our first responder cells, and it was kind of this like perfect storm, because surrounding mast cells are the ace two receptor and that is the spike proteins primary entry site. It's not the only entry site, but that's the primary one. And what's worse is when the mast cell was under attack, it actually started expressing more ace two receptors, so it only made it easier for the virus to invade the host. So that kind of explains the why, why mast cells and not dendritic cells, for example. And so this cell became very over activated, so it was the first responder. And one of the theories is not proven yet, but one of the theories is that it then becomes the host of the virus. So these cells, compared to all of our other immune cells, just become really over active. So again, interface with the outside world and connective tissue, those are the primary locations of mast cells. So a lot of people with mixed connective tissue disorders we're finding are more prone to mast cell activation, and we don't fully understand like, why these two are overlapping. There are theories and there are links that make sense, but we just know that they are overlapping. So hypermobility, for example, is super common for people who then go on to develop MCAS or long covid.
Stephanie Mara 39:05
Yeah, just coming back to, like, the low histamine diet, I have a lot of people who come to me saying, like, should I go on this way of eating? And it's always kind of a fine balance, especially if you're navigating patterns of binge eating. What I've often found is that we have to kind of assess first, what your body's ready for, and that if saying, okay, I'm not going to eat these foods for now, that sometimes that can be so activating to other parts of you, or your nervous system that's kind of getting something out of eating that food that then you find yourself binging on that food more. And so I find that we have to start with what feels doable and what you're ready to try. I know for myself, just because as soon as I heard that there was a way of eating that might decrease some of the symptoms I was experiencing I was like, all in. I was like, let's just go all in. Let's give this a try, and I felt 1000 times better. Now is the histamine diet going to heal anything? No, but it could just decrease how many symptoms you're experiencing so that then you feel like you have more capacity to approach some of the healing that needs to happen.
Lily Spechler 40:34
Well, yes, and in a way, it can kind of be healing as well, because if you're have a high histamine burden, your body becomes less capable of breaking it down. So by temporarily decreasing the amount that we're exposing ourselves to, it actually can help turn on your degradation enzymes, which is also healing and helpful, but it's not gonna really be doing anything to your mast cells, like, it's not stabilizing your mast cells.
Stephanie Mara 41:06
Yeah. And I always find that that's just important to name because, especially from diet culture, when someone suggests, like, oh, go on this diet and it's gonna be so healing, it's like, yes, and it's like, food can kind of only take you so far, and there's usually, like, you've been pointing to other things that need to be addressed in non food ways that, yes, a low histamine way of eating can kind of help stop as much reactions in your body, but it's not the thing that's like, ultimately gonna heal the mast cell activation syndrome that's happening.
Lily Spechler 41:42
It's not the root of the problem, right? If it's not the root, it's very unlikely that it'll be the solution. But that being said, like it can be a helpful stepping stone, because it just helps regulate the way you feel. So it's not fixing the problem, but it can get you to a better head space to be like, okay, I can address the problem.
Stephanie Mara 42:04
Yeah. And I would say anyone who's listening to this just to tread lightly, like, get support on that. Do not do it by yourself, especially if you're navigating patterns of restriction or binge eating, because sometimes going on a specific guideline of, yeah, it can help. It helped me tremendously. It did take a while to kind of introduce some foods back in, because then my body wasn't used to being able to, like, digest and bring those foods in where my symptoms were I would just, like, break out in hives all over my hands when I started eating, like a higher histamine food again, but there, over time, as like, all sorts of healing has occurred, I've have been able to eat more of those foods and not break out in hives as much. And so, you know, I think it's get help. Don't do this on your own, because there's ways to do it in a way that I didn't ease yourself into it. You don't have to go all in.
Lily Spechler 43:01
I think there's also, like, some crazy sites out there that are just really promoting, like, an extensively restrictive, like, style that is the antithesis of what we really need with MCAS. Because MCAS really is, like so nervous system. I mean, mast cells are also neuro immune. So it the nervous system matters so much when we're looking at the mast cells and over restriction, your world ends up getting really, really small. It can just feel like impossible and it's not necessary. And actually a lot of those foods are really healthy, so there is some risk to, like, just restricting them willy nilly with no end in sight. Like, that's not what we want to do either.
Stephanie Mara 43:53
Yeah, and that's where, when you said, it's both, like, both the nervous system work and everything else of this is where I find some of the both and of, like, somatics comes in, where there's, yeah, there's a ton of websites that you can look at, of, like, what is the histamine diet? And, like, what are foods are higher in histamine, or histamine liberators. Also, it's, what does your body tell you? Do you actually get symptoms from that? Do you break out in hives? Like, does your throat kind of feel a little tight like do you actually have a reaction to this food, and in what quantity? Because your body is going to give you the best feedback of what foods really stabilize it, ground it feel like you can digest it easily. And it might be a food that is listed as a higher histamine food, but your body's telling you we can digest this. I'm pretty fine on this.
Lily Spechler 44:42
Right? The wild thing, this just reminded me, while you were saying that is like literally, food accounts for 10% or less of serum histamine, it's actually like such a fraction. So even if you do go the hardo mode, like you still might not feel better at all. I just think that's important to say too of like, most of this is endogenous histamine production. And yes, food can be a powerful tool, but it's actually, like a very small part of the story. It's minuscule.
Stephanie Mara 45:17
Yeah. Okay, so I now want to talk about supplements, because I feel like our conversation right now leads right into that. Because, yeah, I was suggested so many supplements, and also so many different medications while I was healing, that it can also get confusing, that I feel like some people have come to me on so many supplements that I'm like, do you even know if this is supporting you anymore.
Lily Spechler 45:42
Yeah, no. It's heartbreaking. Like, when people come in with those lists like that, it's really heartbreaking, because it's so coming from a place of, like, I will try anything. I've been there. Like, I totally get it.
Stephanie Mara 45:57
Oh me too.
Lily Spechler 45:57
But like, we gotta be careful, because it's because they're unregulated, first of all, and sometimes they can be working against us. So if we're taking, like, a really high zinc, for example, that can tank your copper, which, like, you need to degrade histamine, that's just one example. Like there's so many examples like that, of high doses that can throw off your other values. So really, food is the best place to find medicine, because, like, nature knows that synergistically, you know, eating a balanced diet like you'll get those vitamins that you need. Obviously, I don't mean to suggest that supplements are unnecessary, because sometimes they are and our food system is super depleted. Like, yes, there's that piece too. Like, supplements can be really helpful, but sometimes it's like playing with fire. And I think people it's funny, because people tend to like see it as the answer, but then also see it as no big deal. Like, the same person will see it as both. They'll be like, yeah, I'm on like 50 supplements and the reason they did that is, like some part of them is like, I think this is gonna heal me. But then another part of them is like, so laissez faire about it, too. And so I think that's also really funny, where it's like, we gotta respect these things, like they're, you know, powerful substances, and they should be used with our heads screwed on straight to, like, really know why we're taking something and for how long, and what it's doing and what all the implications are, because it can get crazy.
Stephanie Mara 47:37
Yeah. So I'm curious, are there ones that you do recommend, ones that you feel like people should be watching out for? Like, your example of zinc. I feel like, yeah, some people kind of are like, oh, I you know, it was suggested I should take all this zinc and this vitamin C to, like, bolster my immune system, and then they're taking way too much of it every day, not knowing what else is, maybe potentially getting out of balance.
Lily Spechler 48:02
This is such a tricky conversation, because, and I struggle with this, because every time I think I know something, I will learn something from a client about the way that they experience it. And it's kind of like, man, like, what do we do? Like, for a while I was like, quercetin. Quercetin is the best one. It can be so stabilizing and so so helpful. But then I started getting a few clients who really reacted poorly and like, well, this has got to be really a possible side effect of quercetin. I've just been, you know, more cautious about even that, even though it can be life changing, like I've also seen it act, be activating. And I think that's the really tricky thing with MCAS, is everybody's really individual, so what works for one person might not work for another. And the other thing to look out for is a lot of mast cell stabilizers can slightly lower blood pressure. So like perilla or cumin seed oil, for example, or magnesium.
Stephanie Mara 49:11
I was reading about vitamin C the other day and how, like, yeah, it can be recommended to kind of help your immune system, but also decreases blood pressure. So, like, you could be making things worse if you're already struggling with blood pressure, if you're taking too much vitamin C.
Lily Spechler 49:26
Right. So I think it's like, I have some ones that I love, and like quercetin, I really do. I think for most people, I love it. Same with stinging nettle for most people, it's great, but there is, like, that 30% where it's not great for and that's the really hard thing to figure out. You know, lately I've just been like telling people that up front and being like, look, I think this is gonna really help, but there is a chance it won't, and there's even a chance that it can make you feel worse. For the most part, it's not dangerous. But it might not make you feel better, and it might make you feel a little worse. And so I think you know having that open conversation with people is key, because there is some tinkering involved where, like, you kind of got to find the right fit for the person. I have a client right now who they definitely desperately need mast cell stabilizers, like even things that you would not expect to lower someone's blood pressure, like does. So it's just been a real struggle to figure out what's that perfect fit for them. You know, it's just hard to say, like, PEA is one that I love for mast cell stabilization, but it does lower blood pressure. So it's just like you gotta make sure you're giving it to somebody who is comfortable managing their blood pressure at that point.
Stephanie Mara 50:51
You know what this makes me think of is being able to come back to trusting the body, which is so hard to do when it feels like your body is like fighting against you, when in actuality, your body is doing exactly what it's meant to do, when it feels like an invader has come in and it's just trying to keep you safe and make sure that you survive and stabilize you the best that it can and that that trust piece of can I listen to my body, that it will tell me what resonates with it and what doesn't? You know, I was also put on a bunch of inhalers as well, and I remember that the very last doctor that I saw before I felt like, you know, I think of like you said, I wouldn't say, like, healed. Like, there's definitely certain things that I'm, like, still navigating, but I'm like, I would say I'm like, 97% you know, back to what I was before I got covid. And the last doctor I saw put me on a different kind of inhaler, and he was just like, oh, I don't know why they put you on that inhaler. That's not, you know, gonna do anything for you. And let's try this other one. Okay, you know, I was taking it for a few weeks and got so sick off of it, and he, like, swore, this is like, the kind of type of inhaler like most people do the best on, and it's really easy to assimilate. And I just was like, every time I took it and actually, like, physically, got ill. And I was like, okay, what is going on here? And I kept being like, I think it's the inhaler. Like, I don't think that my body resonates with this inhaler. And everyone kept, like, in my family kept being like, oh, you know, do you want to try it a little bit longer? And I was like, no, I really feel like I need to get off of this so, and I did, and some of the symptoms I was experiencing went away. Yeah, that was totally the inhaler. And so just coming back to that trust piece of, if you are navigating anything, any symptom, you know, long covid or not, to really be able to trust your body that it is going to give you feedback of what feels supportive and what doesn't.
Lily Spechler 53:04
100%. I think too, like I go really slow with clients, with everything we introduce, because sometimes people will be reacting to something in the beginning, but they, you can get your body used to it. And obviously this is such a nuanced conversation, because I also have clients who, you know, they're very sensitive, and they need EpiPens regularly, like they exist. You know, there's a spectrum to MCAS, but there is a huge spectrum. So for some folks, if we introduce something slowly and in a titrated way, you can get them to a place where they can tolerate things, and they start to enjoy it and feel better. And that part is almost retraining your brain to be like, this is safe. It's not everybody. And definitely high histamine foods, if you're a sensitive person to this, sometimes you can overcome it, and sometimes it's like, yeah, this I am sensitive to it, and it always makes me feel activated.
Stephanie Mara 54:09
Yeah, there's a concept that I've kind of coined the name Food Grief, that I talk about with most of my clients and in all of my programs around there comes a point and food grief shows up in a lot of different ways so I'm just going to list the one way that it shows up that we're talking about right now is kind of grieving a food that no matter the nervous system state, no matter the environment, no matter the somatic practices that you engage in, that food just never resonates with your body. You always get symptoms. You always get a reaction. And there is a real grief process that often needs to occur to kind of grieve that that may not be a food that you can eat very often anymore if you want to put the safety and kind of the respect of your body first, that you're like body, I want to listen to you. I want to respect to you. I want to honor what you're telling me, and you're telling me that this food really doesn't work for you, and that can feel so incredibly and utterly sad. So I never like to diminish that piece of this, that it can feel incredibly frustrating and sad, and you might go through a grief process realizing that you may need to take a break from a particular food for a certain amount of time.
Lily Spechler 55:23
And also it's like some foods are tied to social events or cultural events, and that is really tough, too. When it's not even just the food, it's like what everything wrapped up with that food that they feel like they have to extract themselves from. Yeah, it's super hard.
Stephanie Mara 55:44
Yeah, I appreciate you also naming that, because I find that the conversations that I'm having with a lot of people is how tough it is to feel like you can go back out and socialize. I feel very lucky that I already had digestive issues before I got long covid, so everyone was, like, used to me having, like, you know, just a very sensitive digestive tract. And so, you know, I think that everyone in my life is already very accustomed to that for me, but I know for a lot of people, it's like just this sadness of not feeling like you can just go out to a restaurant and, like, eat what everyone else is eating, or, you know, go to a family gathering or a friend gathering and feel like you can trust that there's going to be food there. And so, you know, I think that there is things that can be explored, but there is also coming into contact with just whatever frustration, anger, sadness, even despair that can come up in that experience of feeling like the life that you knew needs to change, and that some of the things that you really loved or felt really easy and were safety producing in the past maybe doesn't feel that way anymore, and it can feel really hard to navigate all of that.
Lily Spechler 56:57
100% and I think most of it, like, we can get creative with how we can do things. I think there's a lot of solutions. And, like, it doesn't have to be all or nothing. And that's the other thing with histamine is, like, there is this stacking piece where I even have some clients where, like, we cycle their food based on their menstrual cycle, because they're more reactive in certain phases of the month. And that is really empowering, because it doesn't have to be all or nothing. Sometimes, like sometimes, it's just figuring out what's my perfect way I'm going to dabble that is not going to throw me off, usually, with most things, there is that middle ground that we can figure out. Like, you know, yeah, we have to modify this. But it doesn't necessarily have to be, like, gone forever, completely.
Stephanie Mara 57:51
Yeah, I love that. And, you know, there is a way to kind of track the body and like, oh, okay, yeah the week before my cycle, I am having a more sensitive histamine reactions. And so I can respond to my body in this way this week, but it can be something totally different another week, and it just brings in the slowing down, turning into your body. What does my body need now? You know, I find that, especially with a lot of these things, it's like, what's the plan? We got to, like, create the plan, and then I have to follow the plan. And it's like, actually, we don't know how your body's going to be tomorrow. Sometimes we have to wait and find out once we're there.
Lily Spechler 58:27
My dad loves the expression, man plans. God laughs. It's such a good one. Like, it's so true. We can, you know, strategize and try to apply, like a blueprint. But there's variables that are sometimes out of our control.
Stephanie Mara 58:47
Yeah. So as we move towards wrapping up here, I feel like we could go on forever. I usually like to offer people a baby step, if someone's on kind of a maybe a covid healing journey, or just even any things that we've listed today, nervous system dysregulation, POTS, MCAS, all these things of just living in a very sensitive body. Where do you feel like is a baby step that they could start or you would offer them as something that might feel beneficial for them to play with?
Lily Spechler 59:15
So, I would say the first thing is an abdominal binder. I genuinely think that that is, like, one of the cheapest, most effective tools. So you do feel weird in the way you wear it. So I will tell people to get, like, those C section binders on Amazon or the internet and kind of like, fold it down under the belly button, get it, like, super, super snug, and it'll just sit under the belly button and just see what you notice. Because if you have taken a breath for the first time in a really long time after you did that, and you're like, whoa, I think that tells you a lot about yourself, and that tells you where to focus your efforts, like basically that that's suggesting you might have. Some blood pooling going on, which could probably explain a lot of the dysregulation you feel. And then the second is, I would go on a higher protein diet. So I really like people to be eating, like, at least five times a day, getting that, that solid protein all day through and yeah, those would be, like, the two most impactful baby steps you could take I think.
Stephanie Mara 1:00:26
I love both of those. And I find that it's both, like, a body support, yeah, I know that there's a lot out there that's like, oh, another person telling me to eat a higher protein diet. But like, there's also a reason why. Like, everyone is recommending to eat more protein. Like, there is a reason for that. If you're listening to this, like, you don't have to kill yourself over like, oh, like, how much more protein could I possibly take in? Find a balance that works for you. But I agree with both of those suggestions of supporting blood flow. And also, you know, I found that protein powder was the easiest way for me, especially because my long covid healing journey, I know we didn't get much in it was I'd lost my ability to swallow for about two years, so I had to be on kind of an all liquid way of eating for a period of time. But protein powder was kind of the easiest way to ensure that my body was getting the protein that it needed to support it in its healing. And so find a way of like foods that you really enjoy. Don't be just like, choking down like another bland chicken breast when, when, like, that's not something that you enjoy or you like, like there's a lot of different ways and a lot of different foods that you can get in more protein.
Lily Spechler 1:01:45
100%. Yeah, I know I always feel like I'm like, tricking people when they come to work with me and they're like, what's this juicy secret gonna be? And then I reveal that it's literally protein. And how?
Stephanie Mara 1:02:00
Oh, fine. Maybe I'll try to eat more protein. Let's just see what that does. Well, I just loved this conversation. Thank you so much for being here and sharing all of your wisdom. And how can individuals keep in touch with you?
Lily Spechler 1:02:16
Yeah, and thank you so much for having me on it's been a pleasure, and you can find me @longcoviddietician on Instagram. The link in bio is the best way to get on the waitlist if you want to work together. I am starting a program The Long Covid Academy, which will be like more of a cooking class, so just really easy, like, how do you care for yourself with this chronic illness. And that'll be a six week program. So yeah, ultimately best ways.
Stephanie Mara 1:02:45
That sounds amazing, and I will definitely like put all of those links in the show notes, just thank you again for being here and sharing everything that you know from your personal journey and working with others about healing from long covid.
Lily Spechler 1:03:00
Yeah. Thank you so much. And I've loved like listening to more of the satiated podcasts. And your content is amazing, and it was so great to finally meet you.
Stephanie Mara 1:03:09
Yeah, likewise. And definitely recommend following you on social media. You put out such great information.
Lily Spechler 1:03:15
You too!
Stephanie Mara 1:03:17
Well to everyone who's listening as always, reach out anytime if you have any questions, support@stephaniemara.com and I hope you all have a satiating and safety producing rest of your day. Bye!
Keep in touch with Lily here:
Website: https://www.longcoviddietitian.com/