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

Episode Date: March 19, 2025

Long Covid Part 2: Treatments. Studies. Histamines. Hormones. POTS. Clots. Hearts. Hope. Highly-respected Long Covid expert, Dr. Wes Ely, is back for all of your listener questions. We also check in with Physics Girl Diana Cowern on her years-long struggle with the disease. So start with Part 1, and then finish up with this episode addressing all your straggling questions, and great advice for patients and caregivers. Follow Dr. Ely on GoogleScholarBuy Dr. Ely’s book, Every Deep-Drawn Breath, on Bookshop.org or AmazonDonations went to: Critical Illness, Brain Dysfunction, And Survivorship (CIBS) Center, Cohen Center for Recovery from Complex Chronic Illness, and Open Medicine Foundation – Diana Cowern’s favorite cause to support clinical trialsMore episode sources and linksSmologies (short, classroom-safe) episodesOther episodes you may enjoy: Surgical Angiology (VEINS & ARTERIES), Cardiology (THE HEART), Disability Sociology (DISABILITY PRIDE), Molecular Biology (PROTEINS + SCIENCE COMMUNICATION), Nephrology (KIDNEYS), Diabetology (BLOOD SUGAR)Sponsors of OlogiesTranscripts and bleeped episodesBecome a patron of Ologies for as little as a buck a monthOlogiesMerch.com has hats, shirts, hoodies, totes!Follow Ologies on Instagram and BlueskyFollow Alie Ward on Instagram and TikTokEditing by Mercedes Maitland of Maitland Audio Productions and Jake ChaffeeManaging Director: Susan HaleScheduling Producer: Noel DilworthTranscripts by Aveline Malek Website by Kelly R. DwyerTheme song by Nick Thorburn

Oh, hey, it's still your aunt who always has Kleenex in her purse. This is Allie Ward. This is Allie Gies. We're back with part two of a Long COVID episode to 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 slash ologies

for as little as a dollar a month. We also have tiers. 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 allogymerch.com. Thanks to everyone also spreading the word about our new kid-friendly spin-off show. It's called Smology's, 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 and 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, flim-flam, POTS, pulmonary health, clots, prevention. If 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 husband, Kyle, and more, with professor, author, researcher,

intensivist, and post-viral epidemiology expert and pulmonologist Dr. Wes Ely. Okay, since this is part two, we're diving straight into your questions and many listeners asked via patreon.com slash ologies about this, including Vanessa Adams, Will Constantini, I Like Plants More Than People, Creel Rama Asari, Raya the Tiger, Jeremy Snyder, Shantae, Heckrazer, Valby Listening, Livlin, Shayla Payne, Silent H, Jennifer Grogan, 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 a bout of COVID for the second time. And how does the experience of COVID differ in 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, mm-hmm. 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, I think of it like a fog. 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 stays for a week. Think of a London fog where it just sits there over the city hovering. I think that patients who get long COVID after one infection, it can kind of come and go. 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 it's 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. 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 us take a bus. The second I saw the bus, I was like, oh my gosh, I do not want to get on that bus. But my wife said, let's get 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, whose 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. Surprising only twice considering, you know. Yeah, I feel very fortunate. Yeah, I feel like 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 in my life 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 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 still a novid, Ali. You're one of the few novids around. Knock on wood. I keep a bunch of new N95s 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, 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 Smolchik, Jeremy Snyder, Kyla C, 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 propensity 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 like 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 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 no 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 have 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 Ronson, Britt Klein, first time question askers Naya Holt and Jessa H. One of the ways is to not get COVID in the first place. And patrons had questions about the shot, including James Hales, Chrysalis Ashton, Gwilymxdor, Kit the Creator, Haley Pingle, William Andrews, Azam, 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 incidence 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 five percent 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 minds of patrons Erin Hatten, Patrick Badein Ellison, Marissa Jacobson, Rebecca Jackson, Quinn, Amber Panetta, Julia Briesenbrook, Anastasia Zagarowicz, Katrina Fisher, benevolentish 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 Erin'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, there's 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, 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. And in fact, our NIH sponsored study, Reverse Long COVID, the funding is there with the first aim of the study is to see can we improve brain function with an immunomodulator. So it's a serious

enough 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 baricitinib, 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, you know, 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. Mm. Someone named Brain Shenanigans, right person to ask this question, wants 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 both atrophy of different areas of the brain and functional deficits in the way that the brain is working. 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 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. And it's 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 thinky 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 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, a 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 that maybe we can do something about it in the long run. Anthrocurator wanted to know, since getting COVID, why does my nervous system freak out whenever I have any virus now?

So people can get both central and peripheral neurological diseases in long COVID. 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. Ah, 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 the allergist's choosing. And this week, it's going to icudelerium.org, which we talked about in part one, as 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 Cowan'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 hungering for more on the diet and long COVID one, here you go. Kay Pellis 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 have 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. 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 bodies 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 as she's starting to introduce them back. Do you see food intolerances common in terms of just wiping people out? Absolutely, just 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's 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, yams, like super restricted. And I really wanted to highlight more of Diana Cowern's story. Her YouTube channel goes by

the name Physics Girl, and she's a pillar of the SciComm 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 and 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,

massed 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 massed 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 that are 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 could imagine, you all included. So that was what Diana had Kyle relay 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 because I think it's super important. And then we're gonna jump back into our interview with Dr. Wes Ely.

But first let's hear from the bedside of Diana Cowern and her caregiver and spouse, Kyle. All right, here goes. I'm Kyle Kitzmiller. 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, you know, 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, so isolating. So imagine somebody has cancer, you get diagnosed with cancer, it's 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 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 mast cell activation stuff, these symptoms that just completely derail your life, make you unable to work housebound, bedbound, things like that.

Just a quick primer on mast cell activation syndrome. So mast cells are a part of your immune system army and as white white blood cells, they protect against foreign invaders and they release histamine to chase out the viruses and other pathogens. And MCAS, massed 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. Wes Ely is renowned in the field. It's getting better, but it's still a huge problem. And it 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 test after test after test after test. 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 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 could 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 and 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 been that simple. But again, the doctors don't know the disease. They don't listen to patients' 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 low or 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 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. Ely's 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 8 and 1 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 and 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 stares from her doctor. This was her primary care doctor who went in there and I was like, there's these different tests, these different biomarkers that people are measuring, talking about blood clotting and things like that.

Can we start investigating what's going on with her? There's something seriously wrong with her. You know, I was sitting with her in that visit as a patient advocate, and I literally just got eye rolls and blank stares 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, listen to whoever it is you're taking care of. The person who is 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 and so 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 you know The patient wants to get better and it's frustrating and it's hard and it's demoralizing, but you just have to listen and support and be there for that person. And 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 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 you want to add? Not really. 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. ME-CFS, POTS, SIBO, MCAS, that mast cell issue and elevated histamine levels. And that last one was on the minds of patrons. Bookish Shelley and Special K and Kate Timms both wanted to know, in Special K's 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 MCAS, mass cell activation syndrome. So some people get a lot of benefit from antihistamine 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 an 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 antihistamines 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, antihistamine 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 board certified internist. I've got board certifications in you know pulmonary critical care medicine as well so I come from a very traditional medical background. And yet a lot of people in this realm are having to go kind of off conventional 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. Ross Stout that 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 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 needs 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. 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 line 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. 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 controlled trials. I Still believe in the beauty of the double-blind placebo controlled 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 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 Deep 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, saunas, acupuncture, reiki healing, bee venom, 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. You mentioned someone who had long Lyme.

Long Lyme I know is very controversial, chronic Lyme. 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 Lyme or Epstein-Barr 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, Amanda, the farming linguist, Kayla White, Emily Jean, Nikki Gee, Curtis Takahashi, Catherine Bee, garden specialist, Daniel Opdahl, Earl of Gramelkin, Bjorn Fredberg, elongated muskrat, Megan Walker, Katrina Kaleif, Janetta

Sore, Melissa Berger, Valerie Kirby, Andrea, all of whom asked about EBV, Epstein-Barr virus, or mono, you might notice, 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 natures of the noses, right? The air inhalation, the way it controls filtering, risk of infections, the way it provides good gases for your exchange in 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 IACCs 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 theICC 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 Lyme, 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. Ili is an intensivist, also a lung 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 incidents 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 wheezing is a long COVID symptom. Stacey Bendixson also has a wheeze 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.

Mm-hmm, yeah. 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 up my alley. Great. 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. That's why we say as 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 airways disease, which is what your patient just described. She says now she has asthma again. She has a reactivation of reactive airways 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 focally 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 there are people who, after COVID, said they had long COVID, got a lot of shortness of breath, were losing weight, thought it was their dietary problem, and they had lung cancer. 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, Allie. Okay. And, you know, talking about the heart a little bit, Julie Scott says, I have a friend who was diagnosed with AFib due to long COVID. Would really like to know how COVID impacts the heart. Looking at you, Shannon Damode, Samwise, Tiger Ute, and Pink Puppy. Other people have, they have friends or themselves have had heart issues for relatively young people, stroke risk. What is 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 myositis. They can actually get valvular 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. 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 endothelial 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. So we talked a little bit earlier about the vascular nature of this disease process. No doubt during the acute event of COVID is when the biggest vascular risk occurs. 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 it 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 Julia Scott said, I have a friend who is diagnosed with AFib due to long COVID. I would really like to know why and how COVID impacts the heart. Anything anyone should know about AFib 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 all the 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 myositis have gotten better over time. Sometimes they require anti-inflammatory medications to help that resolve or it 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 Julian, first-time question asker, 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-time question asker and recent POTS diagnoses. And their GP said all long COVID is POTS. So POTS on your minds and brains and hearts. Patrons, Lizzie Martinez, Danny Gray, Ed Agum, Jennifer Frow, Sophia A., Sarah Summer, Two Stones with one check, Carrie Lee, Jojo Emerson, M. Sarah Jenks, and Kevin Wilson. Again, all asked about pots. I didn't hear about it ever before COVID. What is going on in The Rise?

ever before COVID, what is going on in the rise? Right, so postural orthostatic tachycardia syndrome 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 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 out of 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, you're strapped to it, if we're being honest, and you lie flat on this bed, horizontal, for about five minutes, they monitor your heart

rate and your blood pressure, and then they pivot you to an upright position, 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 in 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, electrolyte solutions, will hold that water in better. Instead, the water might just go

right out of the vessels into your third spaces and create edema. 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 soar. Is that just salt 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. Tell me about it. I can't. I just can't. Well, you know, some people, just a few. Do you have time for a couple more listener questions? Sure. Okay, you know, some people, just a few, do you have time for a couple more listener questions? Like two more? Sure.

Okay, you're amazing. Okay, so Amber Dickerson, Erica Benarski, Maria Ford, Ari Fox, Sarah Huss, Georgia Claire, Cheva Lehrman asked about hormones. A few people asked about long COVID and hormonal fluctuations, people assigned female at birth, people who are going through menopause. Are people who menstruate, 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 are 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. We said that in our NASEM 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 Dr. NASEM, but he was referring to NASEM, 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 Alyssa Burke wanted to know, in Alyssa'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 controlled trial recently done by, 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 antivirals specific to COVID virus reduced long COVID risk. The drug Metformin, studied by Carolyn Bramante, 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 listener question, Julie asks, how close are we to an actual treatment protocol for physicians to treat long COVID? Okay, protocol that health professionals should know about. Asked by Mary Strombum Johnson, Maurice Valerie Bertha, Kendall, Lenore Potter, Taylor Clinton, Kathleen Regovitch, Mufumama, William Andrews,

Sky, Rebecca Jackson, Rob H, Carla D, Ezevedo, Eleanor Chandler, Julie S, Marine Flood, and Cynthia Mwinja. 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 in the 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 ABC 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 like how to approach healing with the doctor's help and what questions to ask and what care to expect. Yeah, 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 patients' 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. 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 use 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 in 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 find 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 for 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, that 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 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 is done. I'm still nervous because you're such a badass. Not at all. No, you're amazing. And what you bring to the table here is so great because you help translate for other people all these complicated topics. I hope the answers were somewhat useful to other 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 I stay in, stay in over. I'm glad you're protected. Still, still walking around with those masks in my pocket, baby. Me too. On airplanes, you won't catch me on an airplane without a mask. I'm like, I'm in a tube. I wear, 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-potty without hand sanitizer. I'm just like, ick, no?

No, gross. I just went to Kuwait in Africa last week and I mean, I wore that sucker 14 hours on that plane. Yep, I'm like, no thanks. Yeah. So once again, ask wonderful people what you were wondering. And thank you so much, Dr. Wes 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 Drown 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 Ologies on Blue Sky and Instagram. I'm at Allie Ward on both. Again, we have

kid-friendly episodes called Smology's, where we get podcasts. You can submit questions for Ologists before we even record at patreon.com slash Ologies. It costs a dollar a month to join. Ologies merch is available at ologiesmerch.com. Thank you so much, Aaron Talbur for adminning the Ologies podcast Facebook group. Aveline Malik makes our professional transcripts. Kelly R. Dwyer works on the website. Noelle Dilworth is our scheduling producer. Our managing director is Susan Hale, Jake Chafee edits and lead editor is of course Mercedes Maitland 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, 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 iHeart 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 of 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 recording 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. Hacodermatology. Homology.

Cryptozoology. Litology. Nanotechnology. Meteorology. Fepidology. Nephology. Seriology. Stylology.

Well you guys, you take care of yourselves.