Post-Viral Epidemiology (LONG COVID) Part 2 with Wes Ely

Oh, hey, it's still your aunt who always has Kleenex in her purse. This is Ali Ward. This is allergies. We're back with part two of a long COVID episode. Answer as many questions from patrons as we possibly can. If you have not yet started with part one, I don't know why you're here. Go there. It's an essential step to learning why we love this expert so much. We cover so many basics like what long COVID is, why some doctors don't believe their patients, the similarities to other viruses, whether it's autoimmune, so much more. So we're going to get to this episode in a sec. But first, thank you to all the patrons who sent in great questions. And you can become one of them by joining patreon.com/ologies for as little as a dollar a month. We also have tears. You can send in your audio questions so we can hear your voice on the show. Thank you to all the folks spreading the word via merch on your bodies, which we keep affordable at allergiesmerch.com. Thanks to everyone also spreading the word about our new kid-friendly spin-off show. It's called Smaller Gs, which is in its own feed wherever you get podcasts where it's also linked in the show notes. And thanks to everyone leaving reviews for the show. I read them all. I read them all, including this one from Effing Scientist who wrote that the show is like my favorite science books are hugging me. Effing Scientist, I send you a bookish hug in a high five. Thanks for that. Now let's move on to part two of long COVID in which we address asthma, autoimmunity, long-lime, new research, flimflam, pots, pulmonary health, clots, prevention, vaccines help prevent long COVID, the mental load that comes along with the illness, how to advocate for yourself and the people you love and advice and info from our friend Diana Cowern, aka the physics girl and her asthma Kyle and more with Professor, author, researcher, intensiveist and post viral epidemiology expert and pulmonologist, Dr. Wes Ealy. Okay, since this is part two, we're diving straight into your questions and many listeners asked via patreon.com/aligees about this, including Vanessa Adams, Will Constantini, I like plants more than people. Creole Ramassari, Rye the Tiger, Jeremy Snyder, Shante, Heckraiser, Fabi Listening, Livlon, Shayla Payne, Silent H, Jennifer Grogon, and Alex Minor. And again, there's an audio question submitted by patron Marcella. Hi, this is Marcella and the question that I had, I had just got over about of COVID for the second time and how does the experience of COVID different individuals who've had multiple infections compared to those who've had it only once? If you have it more than once, is that a higher risk? Yes, it's Marcella, you said, right? Marcella. Marcella, thank you for your question and it's a very good one. Yes, there are data to show that multiple infections is a greater risk for developing long COVID. And if you think of it like a fog, like think of you're in a city and a fog comes in for one day and it leaves quickly, but sometimes a fog comes in and sits down. It's a dense fog and it stays for a week. Think of a London fog where it just sits there over the city hovering. And I think that patients who get long COVID after one infection, it can kind of come and go. And that's why sometimes the long COVID is actually gone after two to three months, which is why we designed our study, by the way, to enroll patients who had had it for six months rather than just three because we really wanted people who weren't going to spontaneously resolve. And some of the patients who have had COVID infections three and even four times that that fog just sits in there and it doesn't go away at all. Now that can happen after one infection, but I think the risk of it sitting down and not going anywhere that really activated immune system is greater if you've had multiple infections. Have you had COVID? I'm guessing you have. I've had COVID two times. The first time was in late 2021. I went to an event. They had a stick a bus. The second I saw the bus, oh my gosh, I do not want to get on that bus, but my wife said, let's go on the bus. And three days later, I had COVID. I regretted it so much. And the only other time I've had COVID was about four months ago. My wife and I care for her brother, his Greg, his name is Greg. He's got Down syndrome. And so he's 60 years old and he gets exposed a lot and he came home with COVID and I got it from him. Thankfully, I do not have long COVID symptoms, but yes, I've had it those two times. Surprisingly only twice considering, you know, yeah, I feel very fortunate. Yeah, I feel like I'm still I'm still masking in places. I still have not gotten it. My husband's only gotten it once, but I feel like I'm one of the more cautious people and I've just because I've known so many people with long COVID that that's what freaks me out, you know. I tell people, I don't care about getting COVID. I just don't want long COVID. Yeah, but they go together. So I'm thankful that you are silly Novid, Ali, you know, it's around knock on what? I keep a bunch of new and any fives in my backpack. And if me or your pod mother feel sick, we test for COVID, you know, like riding in a car, there's always going to be risk and no one's perfect, but I take it really seriously. And I'm super lucky so far, especially since the strains have evolved. And on that topic, many of you asked about variants and lingering COVID such as Sierra, Dawn Smolchick, Jeremy Snyder, Kylacy, and spicy native who asked, what are the odds of getting long COVID nowadays with the strains of COVID that are currently floating around? Is it less of a risk now that we're five years down the line with COVID being the new normal? I'm wondering if the strains being less severe in terms of symptoms as we've gone on. Does that change the intensity to get long COVID or is like the worse your infection, the worse your response to your initial infection, the higher the likelihood of long COVID or is that just not related? There's no doubt that the earlier strains had more of a rip-roaring infection generally. And there was a very high incidence of long COVID earlier on. The problem with speaking to the incidence rates of long COVID now is that the testing has completely changed. People don't test. If they do test, it's only home tests. So we don't have a good way epidemiologically of tracking the percentage of people who have long COVID from current strains versus the previous ones. But I will just tell you that what literature is out there, the data that are out there, and my own impression, which may not be right. But I nevertheless, I can share it with you, is that I think that we generally have lower symptoms complexes now from COVID than we used to generally. The recent one I got, I almost know symptoms at all. And I think that there probably is a lower rate of getting long COVID, but there is still absolutely a risk of getting this disease state. And I have dozens of people in the past few weeks who told me they've just now developed long COVID. So it should not be accepted that long COVID is done and it's over. And if you didn't get it, you're not going to get it. I do not think that's accurate. Yeah. So patrons who asked how to avoid long COVID, Carol Young, RJ Ranson, Brick Klein, first time questresskers, Nia Holt and Jessica H. One of the ways is to not get COVID in the first place. And patrons had questions about the shot, including James Hales, Chrisless Ashton, Gullnext, or Kit the creator, Haley Pingle, William Andrews, Ozam, and Gurley Hippie, who asked, does the vaccine actually make a difference? Does it help prevent or minimize long term COVID? And studies show, yes, according to a September 2024 study published in the Journal of the American Medical Association, vaccinated persons had a lower cumulative instance of long COVID at one year than unvaccinated persons at about a 50% reduction if you're vaccinated. So in general, unvaccinated folks had about a 10% chance of developing long COVID, but vaccinated people had about a 5% chance. As the vaccine can reduce the severity of the infection. And in part one, Dr. Ely did address vaccine injury, but noted that the chance of that is much lower than getting long COVID from skipping the vaccines and the boosters. Now, what if you can't remember if you got the booster because you have brain fog? Well, you're not alone with that mental cloud cover. This was on the beautiful, but possibly beleaguered binds of patrons Aaron Hatton, Patrick Beddine, Ellison, Merced Jacobson, Rebecca Jackson, Quinn, Amber Pineda, Julia Breason-Bruch, Anastasia Zagaroitz, Katrina Fisher, benevolent-ish and Laurel, who asked in their words, "When I had COVID summer of 2021, I felt like I was missing puzzle pieces with my thoughts and memories. And it slowly came back, but I still feel like my brain doesn't work as well as it did pre-COVID," Laurel says. What's that about? And a lot of people had questions like in Aaron's words, how common is it to have brain fog following COVID and can this last for an extended time? benevolent-ish also says, "After avoiding COVID through the official pandemic, I caught it last October." And I know that the difference between the quarantine and pandemic, I feel like, is very important to note. I think a lot of people say the pandemic and they mean quarantine, do you know what I mean? Yes. Just my side note. But they say, "I caught it last October now four months later. They're still mental fog going on. What the hell is that? How much longer will it last?" So a lot of folks want to know, struggling to remember words, things like that. Any idea how long on average it tends to last? Yeah, you're, Ali, all those people's names you mentioned, I'm so sorry that they're suffering from this. The brain fog and that term really is an under-description of what they're experiencing most times. It's really neuropsychological impairment and be clear that we test these patients, and they have sometimes meet absolutely meet criteria for mild to moderate dementia. So, don't think that this is just, oh, I'm a little foggy in my memory. No, this fits with the criteria for dementia in some cases. In fact, our NIH sponsored study, reverse long COVID, the funding is there with the first aim of the studies to see, can we improve brain function with an immunomodulator? So, it's a serious and a problem that lasts for weeks and months, if not years, that we believe that it should be subjected to clinical trials of immunomodulation. And we are doing that. And you can find out more about the study at reversinglongcovid.org, which is a study to see if an FDA approved immunomodulary medication. It's a drug called Baracitinib, which is already used to treat COVID, can help improve thinking and memory problems and reduce fatigue for people who have long COVID. And this study is federally funded by the National Institutes of Health for now. But in general, how long does that cloudiness of brain fog hang around? In short, the person said, how long can it last? It can absolutely last an entire season of your life, spring, summer, fall, or it could end up lasting a couple of years. And we absolutely have patients who say that they're on their third year of long COVID and they've never been able to cognitively get back to where they were before. I know that sounds harsh and scary. I do not want people to give up hope. I absolutely believe that we can get the brain back just like we've done with the ICU survivors. I think that this can happen for long COVID patients too. And so I hope that people don't lose hope. >> Some of them brain shenanigans, right person to ask this question. I want to know if there are any sort of similarities in brain scans between long COVID, brain fog and Alzheimer's, dementia, amnesia. Is there anything we're seeing neurologically that would qualify as a different neurological disease? >> The data are rapidly emerging. But if you look at the data, especially out of the UK, but now out of the US as well, there are data from MRIs and FMRIs to show the both atrophy of different areas of the brain and functional deficits in the way that the brain is working. And I did a couple of pretty long tutorials about this. Back when I was on Twitter, I'm pretty much off Twitter X now. >> Nice. >> But the data are very clear that people do experience functional and neuropsychological deficits as well as anatomic deficits. So what we think is happening there is that tells you earlier the glial cells are injured. And then when the glial cells are injured, the neurons get injured. And so you're actually losing, I did that analogy of the plants with the soil and the water. >> It is covered in part one. The non-neuronal glial cells help support and clean up the neurons of the brain. So they're like the soil and the plants are doing the thinking part. >> The plant itself can wilt and the neurons themselves can die. And when you have that occur, you can lose actual brain tissue. The good thing about this is though that the brain can come back and we can rehabilitate the brain and the brain can cells and neurons can regrow. And we know that that can happen. So there's a beautiful story evolving in the area of neuroscience. And I'm not a neuroscientist, so don't think that I'm trying to pretend to be a neuroscientist. I'm an intensivist, but these data are very encouraging. >> And for more on that, you can see the paper, Brain Abnormalities and Survivors of COVID-19 after two year recovery of functional MRI study. Which found that survivors of mild and severe critical, long COVID had a significantly higher score of cognitive complaints. Involving cognitive failure and mental fatigue than the healthy control group. And even if you have brain fog and you can't find your keys or do the Sunday crossword, you're like, oh, people who had long COVID have complaints about cognitive failure. No shit, Sherlock. However, the study is noteworthy because researchers are getting data from these functional MRI studies to locate exactly what parts of the brain are affected. Scary and encouraging. Maybe we can do something about it in the long run. >> And their curator wanted to know, since getting COVID, why does my nervous system freak out whenever I have any virus now? >> So people can't get both central and peripheral neurological diseases in long COVID. And we talked about the central ones quite a bit just now. But the peripheral neuropathies that people develop are very discouraging to people. They get burning and tingling in their hands and feet and motor difficulties as well. You asked, why does it get worse now when you have other viral injuries? Once these things are set in motion, any kind of infection or exacerbation of inflammation will make them worse. And whenever you get a viral injury, you get inflammation, which then can exacerbate what is the now newly acquired nerve disease in your body. >> You know, someone asked about, only one person asked about diet, which I was surprised about. And we're going to get right back to that diet question in a minute. But first, of course, we donate to a cause of theologist choosing and this week it's going to ICUDelirium.org, which we talked about in part one, is offering support to long COVID patients. And we're also sending additional donations this week to the Cohen Center for Recovery from Complex Chronic Illness, which is the world's first medical center dedicated to researching and treating infection associated chronic conditions. And we'll donate to Diana Cowern's favorite cause, the Open Medicine Foundation to support research and clinical trials for ME, CFS and long COVID. So thank you to sponsor this show for making all these donations possible. Okay, back to your questions. And if you're hungry for more on the diet and long COVID one, here you go. >> KPALIS asked, is there any correlation to long COVID and nightshade sensitivities? Is going on an autoimmune friendly diet, like a low inflammatory diet? Does that help any of your patients that you've seen? >> I love that you asked that. So whoever asked that, thank you. >> You're welcome. >> This is anecdotal, but I've gotten in the 20 to 30 emails from physicians, scientists, people who really do know science well, who said that going on a keto diet has really helped them, which is supposed to be lack of inflammation. I'm not saying to everybody here to go on that diet, but my point is this, there's absolutely a relationship between what you eat and how this disease might go forward. And I do think that a healthy, appropriate, balanced diet is the first way to start. Whether or not you go fully on a low inflammation diet to generate ketones and avoid the inflammation that can occur with other virus eating, is something to try. And do it under the advice of a nutritionist, I think don't wing this and have somebody professional in your life helping you figure out if this is making a difference or not. >> Yeah, I know with Diana, there were very few foods that she could eat for a while, she's starting to introduce them back. Do you see food intolerances common in terms of just wiping people out? >> Absolutely, wiping people out. Again, I'm not a nutritionist, but there's no question in my mind that some people have been made way better by eating very, very strict diets, removing multiple things and adding one thing at a time back in. I'm encouraged to hear that Diana is adding them back in slowly. And I think that that sort of a controlled approach is the way to go and no doubt she and her husband are scientists, so they'll take a very careful approach as she gets better. >> Yeah, it's been really heartening to see that she's able to introduce more things for a while. She was like pistachios, yeah, I'm super restricted. >> And I really wanted to highlight more of Diana Karen's story. Her YouTube channel goes by the name Physics Girl and she's a pillar of the SICOM community. You've probably heard of her. And she has had long COVID since 2022. And a year into it, her husband Kyle posted an update for her saying, thank you everyone so much for the kind messages I'm checking in, the support and love is overwhelming. And Diana went on to say through Kyle, I just don't know how to respond. I am very sick. She writes, "My brain works at 20% capacity for a few minutes a day. I can barely move or talk. The rest of the time I lie here with my eyes closed in a quiet dark room. No music, no reading, no phone. I count breaths, meditate, repeat mantras to soothe my fears. Sometimes I succeed. She continues, "I have severe MCAS, mast cell activation syndrome, and severe ME/CFS, pots, small intestinal bacterial overgrowth or SIBO, and a lower gut infection that have been diagnosed so far. The mast cell activation syndrome is brutal. I get dizziness, nausea, and chest pain from everything. Every food I eat, fragrance I smell, organic cotton sheets that have been boiled with no detergent. All my meds, they're supposed to help MCAS, she writes. I can't wear clothes, I can't use toothpaste. Kyle has to boil hypoallergenic baby wipes so I can bathe without getting rashes. This disease is truly horrible. But we're still trying treatments, and I promise I'm hanging in there. I have the best support system I can imagine you all included. So that was what Diana had, Kyle, relate. in 2023. 2025, she's still suffering greatly. And her primary caregiver is her husband Kyle. And they were married in spring of 2022. She got COVID in the summer. And by that August began to realize something was very wrong. And Kyle and Diana have been very vocal advocates for the treatment and the research around long COVID. And they were so kind to send me about a 10 minute voice note detailing their experience. And I was gonna cut out just a few minutes to share with you. But I listened to it and all of the information and the insight and their lived experience was so compelling. I'm just gonna share the whole thing with you 'cause I think it's super important. And then we're gonna jump back into our interview with Dr. Wes Eley. But first let's hear from the bedside of Diana Cowern and her caregiver and spouse Kyle. - All right, here goes. I'm Kyle Kitsmiller. My wife is Diana Cowern, aka the physics girl. She's had severe long COVID for coming on three years now. And yeah, I just wanna talk a little bit about our experiences and my experience as a caregiver for that. Let's see where to start. Long COVID is probably the hardest disease to be a caregiver for that I could imagine. And I'm talking about both long COVID and ME/CFS here. Sort of these overlapping diseases. And one of the reasons it's so hard is because people just don't know about it. And when I say people, I mean friends, family, doctors, basically nobody knows about this disease and that makes it so isolating. So imagine somebody has cancer. You get diagnosis cancers. This absolutely terrible thing. And friends, family, they're there for you. They say, oh my God, this is so terrible. Anything I can do to support you, let me know. And long COVID, you get this diagnosis for it and people ask you questions like, oh, have you tried fish oil? Have you tried meditation? Have you tried to acupuncture? And it's not to say that those things are bad, but it speaks to the fact that people just don't understand that this is a disease just as serious as cancer and that requires the same type of medical attention to it. But nobody understands that. It disrupts your life, especially when people have brain fog and fatigue and mass cell activation stuff. These symptoms that just completely derail your life and you unable to work, housebound, bedbound, things like that. - Just a quick primer on mass cell activation syndrome. So, mass cells are a part of your immune system army and as white blood cells, they protect against foreign invaders and they release histamine to chase out the viruses and other pathogens. And MCAS, mass cell activation syndrome occurs when they're overactive in that histamine response, causing things to go haywire among other long COVID symptoms. And you just lose your life and people don't understand that it's serious, they don't understand how to comfort you, they don't know how to support you and because of that it's so isolating. At the same time, doctors don't know how to treat it. There's many doctors who still, you know, four or five years into this don't understand how to treat or address even the basics of long COVID and can give you information that hurts you. - This is why Dr. West, Eli is renowned in the field. - It's getting better but it's still a huge problem and he can take years sometimes to get the proper diagnosis. One experience we had was going into an emergency room and that was the worst experience, the worst medical experience we've had so far because essentially in that situation, the doctor treating Diana did not understand anything about long COVID or ME/CFS was not familiar with these diseases at all. And so didn't respect the fact that Diana has a limited amount of energy she can spend each day. She has this energy envelope and going beyond that is really detrimental to her health. - This is the spoon theory that we talked about in part one and spoonies as they sometimes call themselves deal with chronic illnesses and they have a finite amount of energy that they can expend without a debilitating crash afterward. - And so the doctors just wanted to run tests after tests after tests after tests, regardless of the way Diana felt if she was too tired, it didn't matter, they were searching to find something that they could diagnose her with when she had long COVID. That was the disease she had, but there's no test for it, there's no biomarkers, so they're trying to test for everything else that they can find. But the problem for us is we went in there for a very specific thing. Diana had been exhibiting signs of having a pulmonary embolism. We went to the emergency room for that. We told the doctors that her nurse that had been treating her said she seems like she has a pulmonary embolism go to the emergency room and the doctors didn't listen to us. They didn't run any tests for a pulmonary embolism. They ran every other test that they can imagine, probably 50, 60 tests. Everything came back normal. We ended up having to leave because Diana was just too tired. We left against medical advice and then you do that and the next time you go to the emergency room, the doctors treat you like crap because you're somebody who doesn't listen to them. Long story short, she had a pulmonary embolism, we went back to the emergency room a week later. They did the test right off that the nurse had advised me to ask for. They found the PE, they gave her medication for it and we were out the door. And it could have meant that simple. But again, the doctors don't know the disease. They don't listen to patient's experiences. They don't listen to other doctors and medical professionals who are outside of it. So it's a really, really difficult system to be in. Medical insurance systems is different in different countries. But here in the US, you know, another aspect here that's just kind of icing on the cake is that insurance isn't covering long COVID treatments in and of itself. Again, we have this problem of lack of biomarkers, lack of knowledge around the disease. And so most of the time, the only thing that insurance will cover are comorbidities. So let's say you have pots or you have high heart rate or your blood pressure is lower high or something like that. You might be given specific medications for that. And that'll be covered by insurance. But what if the tests are, quote, normal and there's something your doctor wants to try because they read that it'll help you. You know, there's keeping up with the research. They read, okay, this will help you. Insurance isn't gonna cover that unless there's a specific test for it. And that can be really prohibitive for a lot of patients. So the whole insurance system and how that works and doctors not being able to get things covered that may help their patients is just a huge roadblock for a lot of people who are seriously sick. More often than not, doctors just don't know about it, right? There's no just general knowledge about long COVID and how to treat it out there. So you have to search and keep searching for a doctor that actually knows what they're doing or someone who's gonna listen to you as a patient, which both of those things are just for whatever reason exceedingly rare. Again, Dr. Elyse approach is so appreciated in the community of patients with long COVID and their caretakers. And according to the December 2024 paper, prevalence of post COVID-19 condition and activity limiting post COVID-19 condition among adults, in the US it's around eight and a half percent of people and about 2% currently suffer from it. And globally around 35% of people who have confirmed COVID cases have some form of lingering long COVID symptoms. Now, what if you're just exhibiting the first signs of long COVID? Diana had planned to hike miles and miles of trails in this long trip in the Scottish Highlands, but she had to stop every 10 minutes. She only lasted two days on the trip. Kyle recounts trying to get a diagnosis shortly after Diana first started having brain fog in extreme fatigue. Now, prior to getting COVID, Diana had been really healthy, super active. Again, planning a long hiking trek, keeping up with her YouTube channel and then she got COVID and she knew something was wrong but didn't know what. When Diana first got sick, I went to the doctor's office with her and I had all of this paperwork and all of these different tests that people were doing to try and figure out what's going on with long COVID. This was back in like 2022 and basically was just met with blank stairs from her doctor. This was her primary care doctor. We went in there and I was like, there's these different tests, use different biomarkers that people are measuring, talking about blood. clodding and things like that. Can we start investigating what's going on with her? There's something seriously wrong with her. I was sitting with her and that visit as a patient advocate and I literally just got Iroles and Blank Stairs for 30 minutes. Every single test I asked for, every single thing I brought up was just like, we don't do that. There's no reason to do that test, whatever it is, or just like, I don't know, kind of like, just go home and rest was the only response we got in this primary care meeting. So that's what a lot of patients are faced with. So advocate for yourself and if you're very lucky, you have a trusted caregiver. The last thing I wanted to chat about was advice for patients and caregivers. Yeah, I have a lot of advice. The first piece of advice that I would give to caregivers is to listen, listen, to whoever it is you're taking care of. The person who's sick with long COVID, they know their body the best. They understand what they're going through. Everyone with this disease wants to get better, wants to get their life back and they just don't know how. The only reliable intervention we have right now that works across the board is rest and it's so freaking frustrating because you want to do something to get better. As a caregiver, you want to encourage the person you're taking care of to get better. They want to do something to get better and we just don't have the medical interventions, the science, whatever you want to say. We don't have enough knowledge to say this is what you need to do to get better. Sometimes your only choice is just to rest and as a caregiver, you have to honor that and you have to know and believe and have faith that the patient wants to get better and it's frustrating and it's hard and it's normalizing but you just have to listen and support and be there for that person. Then the next piece of advice is to not give up, to keep going, to keep experimenting. You have to honor the energy limits of the person you're taking care of, of course, first and foremost, but you have to keep experimenting, keep trying, finding doctors that will listen, getting on the forums, just making lists, staying organized, trying to figure out what's the next symptom or thing that you're going to try and tackle. Don't race through it, don't try and do everything at once. It's, you know, a marathon. People are staying sick for years and they're seeing gradual improvements and you just have to keep going over time, trying things and finding what works for you. Diana, do you have anything on that? Okay. Kyle and Diana, sharing her story, is why I still mask, why I get every boosters, why I know COVID is not just a cold because COVID and long COVID get buried in the news cycle and a lot of people want you to say it's not that big a deal. Now long COVID can cause a constellation of symptoms with so many letters, MECFS, POTS, SIBO, MCAS, that mast cell issue and elevated histamine levels. And that last one was on the minds of patrons, book is Shelley and special K and Kate Tim's both wanted to know in special case words are elevated histamine levels, part of long COVID complications. And Kate says one of my major features is tones of sudden food intolerances that can increase histamine. What is the role of histamine in long COVID? Yeah, I think some people are really affected by this and there's even MECAS mast cell activation syndrome. So some people get a lot of benefit from anaestamine therapies and in that circumstance, you know, that's an example where I said earlier of each of these patients needs to approach this on individualized basis and clinicians need to say what works for one person isn't working for another. So just because you know, three people in a row got way better with anaestamines doesn't mean the next three will. And yet it doesn't deny the fact that those three had a more histamine-based disease state than did the others. So if you do have overactive mast cells and high histamine, anaestamine medication may help or it just might not. Why do some things work on some people? And what therapies are bullshit? So this can sound kind of quacky in a way and this is what I was kind of worried about at the beginning when I was getting into this area is that, you know, I'm a I'm a board certified internist. I've got board certifications and, you know, pulmonary critical care medicine as well. So I come from a very traditional medical background and get a lot of people in this realm are having to go kind of off-committional Western medicine and are finding a lot of benefits. So I say go for it. If it helps do it with somebody watching over your back, you know, Ross Douthet wrote a great book called The Deep Places where he's a New York Times author and he had long line and his book was very useful for me to realize that he even he said, I can't believe I'm trying these weird things, but they're helping. And so he did. And so I think everybody used to just show each other respect and listen. Any advice for people who might be getting sold some snake oil? I know that when you are sick, you will try everything. And sometimes those things might work, but any flags that you want to raise, like, if someone is trying to sell you this or if someone is trying to promise like this one we know doesn't work. You know? Absolutely. And I think it's important to know that people have hurt themselves quite a bit by different long-covid treatments. People have gotten bad central eye infections, they've gotten infusion-related complications, they've gotten blood clots. There's a lot of damage that has been done by just trying anything. And I think we have to be very careful. That's why I said multiple times already do it under the supervision of somebody that you trust. And I think that we have to acknowledge the need for randomized control trials. I still believe in the beauty of the double blind placebo control trial. That's what we're conducting right now. And it's a high science trial. We're measuring a lot. Patients are being very, very generous with their time here. When people are doing things recommending and saying definitively that it works, but you don't have a control group, you don't really know. I think it's worth considering, but you have to take it with a grain of salt and realize that you might get started on something that could harm you. Okay. So in that book, the de-places about long-lime, the author details, therapies, that other patients attempted to find any relief. And that included herbs and enzymes, hyperbaric chambers, ozone therapy, sonos, acupuncture, raky healing, bvenum, ultraviolet light or photon therapy, magnetic therapy, colonics, high vitamin C, and more remedies that are not exactly vetted or approved of by Western science and are deemed ineffective or at least in need of much, much more testing. And long-lime, like long-COVID, tends to draw patients desperate for a cure. And doctors skeptical of their condition in the first place. And you mentioned someone who had long-lime. Long-lime, I know, is very controversial, chronic-lime. I feel like there's still maybe patients who say they have it, doctors who say they don't. Taylor Clinton wanted to know, is there a correlation between people who have had a prior diagnosis of lime or Epstein Bar and those experiencing long-COVID? What kind of similarities exist between those kind of chronic infections? So this was also in the minds of Brittany Corrigan and Amanda, the farming linguist Kayla White, Emily Jean, Nikki G, Curtis Takahashi, Catherine B, Garden Specialist, Daniel Opedal, Earl of Grammolkin, Bjorn Fredberg, Long-Aided Muscat, Megan Walker, Katrina Kaleif, genetic sore, Melissa Berger, Valerie Kirby, Andrea, all of whom asked about EBV, Epstein Bar virus or Mono, you might know it as, and other post viral illnesses. It's an important question. And the top immunologist in the world would not even be able to definitively give you an answer. But let me give you an idea. Let's look at human noses, okay? Human noses come in all different shapes and sizes and colors. But what they have in common is way more important than the disparate nature of the noses, right? The air inhalation, the way it controls filtering risk of infections, the way it provides good gases for your exchange and your body for cellular metabolism, et cetera. That's kind of like the way I feel about these post-infection associated chronic conditions. If you have already gotten long lime or already have the post-sars infection associated chronic condition and then you get COVID three times, you're way more likely to develop this problem. So these ICCs have more in common than they do disparate. And just a reminder, as covered in part one, an AICC is an infection associated chronic condition. And if you've already got it activated in your body, then the next time you get a viral illness like this, you're likely to get it jacked up. I do not think that these, like going back to the noses, things, I don't think that a different colored nose is like the different, like SARS, long lime, a chronic fatigue syndrome from EBV, that these are all totally different illnesses. I think there's a lot of overlap in the mechanism behind these diseases. And let's not forget that Dr. Ely is an intensivist, also a long guy. And Patron Leora Spitzer wrote in, "Hi, my spouse hasn't fully recovered from having COVID." last summer. Various tests of lungs and oxygen levels haven't found anything physically wrong, but they're still experiencing breathing and heart problems. Is this something commonly seen with COVID? They ask. And patron Nikki G said, "I'm really curious about the incidence of vascular events like strokes, deep vein thrombosis, heart attacks, and pulmonary embolisms in younger patient populations with limited other risk factors." And remember from the surgical angiology episode and part one of this episode, one complication can be a PE or a pulmonary embolism. And that's a blood clot that travels to the lungs and that can be fatal. And you mentioned pulmonary system. We had some people who have had COVID who are still having respiratory symptoms. Lauren Miller asked if weasing is a long COVID symptom. Stacey Bendixin also has a wease that hasn't gone away in two or three years. Stephen Shelley says, "Okay, as someone who had asthma but then grew out of it and then got COVID and now has it again, what's the deal with that? I feel cheated by my lungs," they say. And so, yeah, folks who their oxygen levels are fine, but they're still experiencing some breathing and heart problems. What's up with that? I'm a pulmonologist, so this is right at my alley. The number of ways that the lung can respond to injury is somewhat limited. And it filters everything. So the lung gets involved in tons of systemic diseases. In the New England Journal of Medicine, when we read our CPCs, our clinical pathological conferences, the lungs are almost always involved. You know, that's why we say is ICU doctors that we have to be involved with all different types of disease states and know them well. In COVID, patients could have scarring after a very severe bout of COVID that landed them on a ventilator or they could get reactive airway disease, which is what your patient just described. She says, "Now she has asthma again. She has a reactivation of reactive airway disease. That's asthma." And that's an immunological disease. So we're talking about activation of the immune system. She already had a disease state like asthma that had an active problem, vocally in her lungs. And although it had dampened down over the years, it's now very active again after COVID. I'm not surprised. And she'll probably need to be on steroid inhalers for a long time, but need to work with her doctor about that. That's the right treatment for her. So my main message to anybody who's experiencing breathing problems is you can't be told what you have without a formal evaluation. So you need to actually see a doctor who knows about lung diseases, get a chest x-ray, get lung function studies done, and get this evaluated formally. And you know, there are people who after COVID said they had lung COVID, got a lot of shortness of breath, were losing weight, thought it was their dietary problem, and they had lung cancer. Yeah. So that was not from the COVID. They just happened to have lung cancer. So we need to rule out other disease states as well, Ali. Okay. And you know, talking about the heart a little bit, Julie Scott says I have a friend who is diagnosed with AFib due to long COVID. I would really like to know how COVID impacts the heart. Looking at you, Shannon Demodi, Sam Wise, Tiger Yudy, and Pink Puppy. Other people have, they have friends or themselves have had heart issues for relatively young people, stroke risk. What is the long COVID doing to the heart? Yeah. So just like we talked about inflammation in the brain and or the lungs or the GI tract, that can happen in the heart. And people can get inflammation of the heart muscle called myocytus. They can actually get valveular disease as well. And then getting a fib, you're talking about the conduction system. More on heart health, of course, in the recent cardiology episode with Dr. Herman Taylor. But so the heart has its own electrical system. And if there's damage to that electrical system, you can get different types of arrhythmias. So that's why cardiologists have to be involved in long COVID patient stories at different times because people do get actual organic disease of the heart as part of this systemic disease state of long COVID. I feel like I know so many young people who have had blood clots after having COVID. Is that something that would be related to long COVID if it happens six months later or is that just sort of chance or is that the virus working on that clotting in the end of the olio cells? Remember from part one, those endothelial cells line your blood vessels and they can get damaged, leading to plaque buildup and blood clots. Yeah, good. We talked a little bit earlier about the vascular nature of this disease process. And no doubt during the acute event of COVID is when the biggest vascular risk occurs. But think about a person like the woman I told you about earlier who's only getting out of her bed once a week. She's immobilized and she's got a lot of different changes going on in her body regarding her weight and other aspects of things that are very difficult for her to manage right now. So immobilization is another risk factor for large vessel clotting. And we know that if you already have a vascular disease and or get COVID acutely and then start having weeks and weeks of basic immobility, you're going to be at risk for blood clots. And cardiologist Dr. Herman Taylor mentioned that he and other heart experts say to keep a moving, keep that blood pumping. Now what about heart rhythm issues like atrial fibrillation, which we just covered in the cardiology episode? That's when the beats of the upper receiving chambers of the heart get a little wonky. And patron Julius Scott said, I have a friend who is diagnosed with a fib due to long COVID, I would really like to know why and how COVID impacts the heart. Anything anyone should know about a fib in general or? Well, atrial fibrillation is a risk factor for strokes. When the atria quiver rather than contracting, then that blood has a problem with stasis in that chamber of the heart and it can clot. If the blood's not flowing, it likes to clot. So if your atria is fibrillating, that is quivering, then it's not contracting and that blood gets static and you can get a clot. And then if that clot gets shoved out into the body, you can have a stroke. So if it was a very serious problem and you must get that evaluated by a cardiologist or your doctor, so you can get other right treatments. You should definitely see a doctor. I've also heard of, is it myocarditis? Yeah, myocarditis. And that's the inflammation of the heart muscle itself. That can happen post vaccine or it can happen as part of long COVID as well. Does that tend to reverse with treatment or is that a timing thing? Most of the patients that we've had with long COVID and myocarditis have gotten better over time. Sometimes they require anti-inflammatory medications to help that resolve or might resolve spontaneously. But again, I just advise people to get evaluated by a cardiologist if they're having heart problems. Speaking of heartbeats, Rachel Gillian, first on Quest Drasker wants to know how much of long COVID is pots? How much is pots adjacent? How much is unrelated? Does pots post COVID present slightly different from classical pots? They are a first on Quest Drasker and recent pots diagnosing. And their GP said all long COVID is pots. So pots on your minds and brains and hearts. Patrons, lazy Martinez, Danny Gray, adgum, Jennifer Fro Sophia, A Sarah Summer, two stones with one check, Carrie Leid, Jojo Emerson, M Sarah's Janks, and Kevin Wilson. Again, I'll ask about pots. I didn't hear about it ever before COVID. What is going on in the rise? Right. So, postural orthosatectic cardiocindrom is a very prominent feature of long COVID patients or post viral illnesses generally. And we've seen a rapid, rapid rise in the numbers of people seeking help for the pots. You're talking about massive rises in your heart rate, wide swings in your heart rate without any prompting. You're talking about standing up and passing out or just sitting still. We have a medical student who has long COVID and just sitting there in a classroom, studying and all of a sudden I have nowhere getting very sweaty, diaphoretic, lightheaded, clammy, having to go to the ER. These are autonomic instability problems and pots problems. And so, what's going on is the disease of the cardiovascular system and the autonomic nervous system whereby formally regulated heart rate and blood pressure are now dysregulated. And people get formal evaluations that is diagnostic testing with cardiopulmonary exercise testing, CPETs, and also tilt table tests. And according to the Mayo Clinic for this test, you don't eat or drink for two hours and then you're tucked into a big bed and you're strapped to it if we're being honest and you lie flat on this bed horizontal for about five minutes and they monitor your heart rate and your blood pressure and then they pivot you to an upright position, a vertical position, to see how that heart rate and blood pressure change. Now if you have pots, you may feel sweaty or lightheaded or dizzy or sick to your stomach or you might have a pounding racing heartbeat, usually because of low blood volume. And patients when they go on the tilt test will absolutely lose consciousness or get wide swings and blood pressure and heart rate because of this. And the treatment is sometimes salt loading and fluid loading and other times getting medicines to control those heart rate instabilities. And low blood volume is that that's sort of part of all of that. So beefing up that blood volume. Yes. So the low blood volume, what some of these patients require is getting sometimes 60 to 90 ounces of water a day and salt loading as well because the salt in with that fluid, the electrolyte solutions will hold that water in better. Instead the water might just go right out of the vessels into your third spaces and you make to create a DEMA. So the salt and water loading keeps those blood vessels filled and therefore you're less at risk to have the blood pressure drop and the heart rate sore. Is that just salt or Or is it other electrolytes like? magnesium and potassium, things like that. Yes, magnesium, potassium, sodium. Usually you can get the kind of a tasty mixture of those things where it's not like drinking water out of the Gulf of Mexico or the ocean. I don't want to get into the naming of the Gulf of Mexico right now. It's only about it. I can't. That's can. Well, you know, some people, just a few, do you have time for a couple more listener questions? Like, too many? Okay, you're amazing. Okay. So Amber Dickerson, Erica Bennarski, Maria Ford, Arifox, Sarah Haas, Georgia Claire, Chaval Airman, asked about hormones. A few people asked about long COVID and hormonal fluctuations. People assign female at birth, people who are going through menopause are people who, uh, men straight do they have a higher risk factor for long COVID? What's going on there? Well, this is definitely out of my wheelhouse. I would just say, though, that if you were listening to this and you're having problems like that, you're not dreaming that up. And just like the other organs in the body, the endocrine system can be absolutely affected. Any organ in the body can be affected by long COVID that we said that in our nascent report in the New England Journal of Medicine recently and the report we published for the general public at large. I thought he was talking about a doctor, Nassim, but he was referring to Nassim, the national academies of science, engineering and medicine. And that paper he authored is titled a long COVID definition, a chronic systemic disease state with profound consequences. And one aspect that they found is that any organ can be affected. And your endocrine organs are the ones making those hormones. So they require a stable blood vessel supply. They require a lack of inflammation. And if they get microclots and blood vessel problems and or inflammation, they absolutely can be dysregulated as well. So I hope that you find somebody to help you with these problems. Yeah. Patrons magpie laughs and Elissa Burke wanted to know in Elissa's words. Any more research on whether Paxlovid helps prevent long COVID? I don't have any good data to say that Paxlovid reduces the risk of long COVID. In fact, there was a randomized control trial recently done by state headed out by Stanford that was negative in this regard. It was a two-week therapy, I believe, of Paxlovid. We don't have any evidence to say that the antiviral specific to COVID virus reduced long COVID risk. The drug metformin studied by Carolyn Bromante did have some predictive nature of reducing long COVID. We need more data in that regard. And actually we have a grant that's being reviewed by the NIH to see if metformin can be tested in a double blind placebo control fashion in patients who have long COVID. The data for metformin thus far were prevention, not treatment of long COVID. So you asked about nanokinase and naltrexone. These are other therapies that absolutely some people have claimed have made a big difference for them. Again, I don't want to disregard that these people have had big benefits from these therapies. I just know that too we don't have solid randomized control trial data, but I'm not discouraging people from trying these things. If they're professional, their doctor thinks that they should. Okay. And last, listen to a question, Julie, how closely to an actual treatment protocol for physicians to treat long COVID? Okay, protocol that health professionals should know about. Asked by Mary Strombum Johnson, Marie Spallery, Bertha Kendall, Lenore Poeter, Taylor Clinton, Kathleen Reggovich, Mufumama, William Andrews, Sky, Rebecca Jackson, Rob H. Carla D. Azavito, Eleanor Chandler, Julie S. Marine Flood, and Cynthia M. Winja. I wanted to know how do we treat this? They all asked. How is the consensus going out there? I think that it will be years into making, unfortunately. I think that this is not months away for a treatment protocol to be widespread, adopted. I think that for the next several years, while the randomized control trials are being done, and they are being done right now, that for the next several years, the rule approach here is going to be to take individual patients, listen to their symptom complex, understand them as well as possible, and then individualize those care approaches. Rather than this is the step A, B, C approach that all patients with long COVID should get, I don't see that happening anytime soon. And your book too, it feels like it would give a lot of hope to patients in terms of how to approach healing with the doctors' help and what questions to ask and what care to expect. In every deep drawn breath, the beauty of it is that these are people's stories, real stories, actual quotes that are recorded with an audio device. So I didn't make them up. And all the patient's pictures are available, including Maya Angelou and some other famous people that I've had the blessing of caring for over the years, are online. You can see the actual people. So you can identify with these people who have taught us. And the main message there is that we have to create a relationship. This is a healing relationship that should extend over the course of somebody's survivorship. And we need to recognize that it is in that relationship that we can find our healing path forward. Chronic illness is very difficult. And so there's an entire section at the back of every deep drawn breath that helps people approach chronic illness. And I hope that that's of used to people. What's the hardest part about what you do? The hardest part about what I do is knowing that at the end of the day, my science will never be enough. I love my science and I am a scientist, but it will never be enough. I have to infuse love and mercy and what I'm doing. And that takes a lot out of a healer. But at the end of the day, I want that love and science to go together and that it's that touch and technology. It's that combination. And I found that earlier in my life, I really relied almost all on the science. And I got injured. I was walking around with chest pain and some moral injury because I was not providing the right type of healing combination that I needed to with my patients. So I like to now keep coming back and allow myself to dive all the way into their lives to try and help. Last question. I always ask a favorite part of your job. Best thing about what you do. Oh gosh. The best thing about what I do is that I get to come into contact with people like you, Ali, and others who know that we are imperfect, but by working together, we can find a way forward. And it's this community of knowing that I don't know the answer. But knowing that if I walk with you, we can find it together. That's the best part is the community and the relationship. Thank you so much for being on. I was so excited to talk. I'm still nervous, even though the interview's done, I'm still nervous because you're such a bad. Not at all. No, you're amazing. And what you bring to the table here is so great because you have translate for other people all these complicated topics. I hope this, I hope the answers for somewhat useful to people. No, absolutely. This has been really such a privilege to talk to you. And I'm going to keep just trying not to get COVID the best I can. I'm proud of you. That's a gutsy move and stay in the, stay in the oven. I'm glad you're protected. Still still walking around with those masks in my pocket, baby. Me too. Me too. On airplanes, you won't catch me on an airplane without a mask. I'm like, I'm in a tube. I'm wearing this thing. Yeah. That's like asking me to use a porta-podio without hand sanitizer. I'm just like Ick. No, no, gross. I just went to Kuwait in Africa last week. And I, I mean, I wore that sucker for 14 hours on that plane. Yeah. Yeah. I'm like, no, thanks. Yeah. So once again, ask wonderful people what you are wondering. And thank you so much, Dr. West Ely for all of the really kind and helpful factual information about this illness. Thank you, Kyle and Diana for sharing your story and links to all of the places we donated are in the show notes along with a link to our website with more info and links to studies and to Dr. Ely's book, Every Deep, Deer on Breath. I hope these episodes have helped you feel seen and informed. Please pass them along to anyone and everyone you know. I feel like everyone can benefit from this. We are at Allegis on Blue Sky on Instagram. I'm an alleyward on both. Again, we have kid-friendly episodes called Smologies, where we get podcasts. You can submit questions forologists before we even record at patreon.com/allegis. It costs $1 a month to join. AllegisMurch is available at allegismurch.com. Thank you so much, Aaron Talber for admonining the Allegis podcast Facebook group, Aveline Malik, makes our professional transcripts. Kelly Ardwire works on the website. Noel Dilworth is our scheduling producer. Our managing director is Susan Hale, Jake Chafee Eddits and lead editor is of course Mercedes-Mateland of Maitland Audio. Nick Thorburn made the theme music and if you stick around until the end, you know, I tell you a secret. And if you listen to the very end of last week, you'll know that I recorded it right before I got in the shower to go to the I Heart podcasting Awards. We were nominated for Best Science Podcast, but we were up against like some big giants, like science versus and star talk. And the result of that is that we won. We won. We won it. We won I Heart Radio's Best Science Podcast of the Year. So that was such a wonderful night and I have much more to say about it, but I'm out the door right now. I'm leaving on a trip for Ireland. I'm going to record a couple episodes over the next week. I have a pack of masks in my bag, otherwise I'm not packed and we were supposed to leave 36 minutes ago. So we'll have a fresh new episode for you next week and I'll be recordings for stuff for you in Ireland. Okay, please stay safe, please be nice to each other and please rest if you need to. Okay, bye bye. (upbeat music) (upbeat music) - Well, you guys, you take care of yourself.