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Speaker 3: E Bianantalma got bogger onnlu the hachtenir, the holla, the
Speaker 3: heemen heckl ah ersuen were auraslonce ladeni the tain knudovshud
Speaker 3: will kill nakatarhu la hula shomperodes on uderos ors lanse
Speaker 3: is phaser Natgan's throw, Tasha Tapa siranashka agustnyavri anderfad is
Speaker 3: FuGO more hey rig hi. A punk ie is called
Speaker 3: chulala a on tudoros urraslence. If we reel to this naheren.
Speaker 4: Oh, hey, it's still your aunt who always has kleanax
Speaker 4: in our purse. This is Ali Ward. This is Ologies.
Speaker 4: We're back with part two of a long COVID episode.
Speaker 4: Answer as many questions from patrons as we possibly can.
Speaker 4: If you have not yet started with part one, I
Speaker 4: don't know why you're here, go there. It's an essential
Speaker 4: step to learning why we love this expert so much.
Speaker 4: We cover so many basics like what long covid is,
Speaker 4: why some doctors don't believe their patients, the similarities to
Speaker 4: other viruses, whether it's autoimmune, so much more so we're
Speaker 4: going to get to this episode in a sect. But first,
Speaker 4: thank you to all the patrons who're sent in great questions,
Speaker 4: and you can become one of them by joining patreon
Speaker 4: dot com slash Ologies for as little as a dollar
Speaker 4: a month. We also have tears you can send in
Speaker 4: your audio questions so we can hear your voice on
Speaker 4: the show. Thank you to all the folks spreading the
Speaker 4: word via merch on your bodies, which we keep affordable
Speaker 4: at ologiesmerch dot com. Thanks to everyone also spreading the
Speaker 4: word about our new kid friendly spinoff show it's called Asmologies,
Speaker 4: which is in its own feed wherever you get podcasts,
Speaker 4: where it's also linked in the show notes. And thanks
Speaker 4: to everyone leaving reviews for the show. I read them all.
Speaker 4: I read them all, including this one from e fing
Speaker 4: Scientist who wrote that the show is like my favorite
Speaker 4: science books are hugging me Efing scientist, I send you
Speaker 4: a bookish hug in a high five. Thanks for that. Now,
Speaker 4: let's move on to Part two of long COVID, in
Speaker 4: which we address asthma, autoimmunity, longline new research, flim flam pots,
Speaker 4: pulmonary health clots, prevention, if vaccines help prevent long COVID,
Speaker 4: the mental load that comes along with the illness, how
Speaker 4: to advocate for yourself and the people you love, and
Speaker 4: advice and info from our friend Diana Cowarn aka the
Speaker 4: Physics Girl, and Harrassment Kyle and more with professor, author, researcher,
Speaker 4: intensivist and post viral epidemiology expert and pulmonologist doctor Wes Eally. Okay,
Speaker 4: since this is part two, we're diving straight into your
Speaker 4: questions and many listeners asked via Patreon dot com soshologies
Speaker 4: about this, including Vanessa Adams, Will Constantini, I like plants
Speaker 4: more than people, Creole Rama Asseri, Ria the Tiger, Jeremy Snyder,
Speaker 4: Chante Heck raiser that'll be listening livel on shay La Payne,
Speaker 4: Silent h, Jennifer Grogan and Alex Minor. And again there's
Speaker 4: an audio question submitted my patron Marcella.
Speaker 5: Hi, this is Marcella and the question that I had
Speaker 5: I had just got over about of COVID for the
Speaker 5: second time, and how does the experience of COVID different
Speaker 5: individuals who've had multiple infections compared to those who've had
Speaker 5: it only once.
Speaker 4: If you have it more than once, is that a
Speaker 4: higher risk?
Speaker 6: Yes, it's Marcella, you said right, Marcella. Marcela, thank you
Speaker 6: for your question, and it's a very good one. Yes,
Speaker 6: there are data to a show that multiple infections is
Speaker 6: a greater risk for developing long COVID. And if you think,
Speaker 6: I think of it like a fog. Like think of
Speaker 6: you're in a city and a fog comes in for
Speaker 6: one day and it leaves quickly. But sometimes a fog
Speaker 6: comes in and sits down. It's a dense fog and
Speaker 6: it stays for a week. Think of a London fog
Speaker 6: where it just sits there over the city, hovering. And
Speaker 6: I think that patients who get long COVID after one
Speaker 6: infection it can kind of come and go, and that's
Speaker 6: why sometimes the long COVID is actually gone after two
Speaker 6: to three months, which is why we designed our study
Speaker 6: by the way to enroll patients who had had it
Speaker 6: for six months rather than three, because we really wanted
Speaker 6: people who work going to spontaneously resolve. And it's some
Speaker 6: of the patients who have had COVID infections three and
Speaker 6: even four times that that fog just sits in there
Speaker 6: and it doesn't go away at all. Now, that can
Speaker 6: happen after one infection, but I think the risk of
Speaker 6: it sitting down and not going anywhere that really debated
Speaker 6: immune system is greater. If you've had multiple infections.
Speaker 4: Have you had COVID, I'm guessing you have.
Speaker 6: I've had COVID two times. The first time was in
Speaker 6: late twenty twenty one. I went to an event they
Speaker 6: had us take a bus. The second I saw the bus,
Speaker 6: Oh my gosh, I do not want to get on
Speaker 6: that bus. But my wife said let's get on the bus.
Speaker 6: And three days later I had COVID. I regretted it
Speaker 6: so much. And the only other time I've had COVID
Speaker 6: was about four months ago. My wife and I care
Speaker 6: for her brother who's Greg. His name is Greg. He's
Speaker 6: got down syndrome and so he's sixty years old and
Speaker 6: he gets exposed a lot, and he came home with
Speaker 6: COVID and I got it from him. Thankfully, I do
Speaker 6: not have long COVID symptoms. But yes, I've had it
Speaker 6: those two.
Speaker 4: Times, surprising only twice considering you know.
Speaker 6: Yeah, I feel very fortunate.
Speaker 4: Yeah, I feel like I'm still I'm still masking in places.
Speaker 4: I still have not gotten it. My husband's only got
Speaker 4: it once. But I feel like I'm one of the
Speaker 4: more cautious people. And I've just because I've known so
Speaker 4: many people with long COVID that that's why what freaks
Speaker 4: me out.
Speaker 6: You know, I tell people I don't care about getting COVID.
Speaker 6: I just don't want long COVID. Yeah, but they go together.
Speaker 6: So I'm thankful that you are still a novid. Ali.
Speaker 6: You want a few novids around.
Speaker 4: Knock on what. I keep a bunch of new and
Speaker 4: ninety five's in my backpack, And if me or your
Speaker 4: pod mother feels sick, we test for COVID. You know,
Speaker 4: like riding in a car, there's always going to be
Speaker 4: risk and no one's perfect. But I take it really
Speaker 4: seriously and I'm super lucky so far, especially since the
Speaker 4: strains have evolved. And on that topic, many of you
Speaker 4: asked about variance and lingering COVID, such as Sierra Don,
Speaker 4: Small Chick, Jeremy Snyder, Kylo See, and Spicy Native who asked,
Speaker 4: what are the odds of getting long COVID nowadays with
Speaker 4: the strains of COVID that are currently floating around? Is
Speaker 4: it less of a risk now that we're five years
Speaker 4: down the line with COVID being the new normal. I'm
Speaker 4: wondering if the strains being less severe in terms of
Speaker 4: symptoms as we've gone on, does that change propensity to
Speaker 4: get long COVID? Or is like the worse your infection,
Speaker 4: the worse your response to your initial infection, the higher
Speaker 4: the likelihood of long COVID or is that just not related.
Speaker 6: There's no doubt that the earlier strains had more of
Speaker 6: a rip roaring infection generally, and there was a very
Speaker 6: high instance of long COVID earlier. On the problem with
Speaker 6: speaking to the incidences rates of long COVID now is
Speaker 6: that the testing has completely changed. People don't test. If
Speaker 6: they do test, it's only home tests, So we don't
Speaker 6: have a good way epidemiologically at tracking the percentage of
Speaker 6: people who have long COVID from current strains versus the
Speaker 6: previous ones. But I will just tell you that what
Speaker 6: literature is out there, the data that are out there,
Speaker 6: and my own impression, which may not be right, but
Speaker 6: nevertheless I can share it with you, is that I
Speaker 6: think that we generally have lower symptoms complexes now from
Speaker 6: COVID than we use to generally. The recent one I got,
Speaker 6: I almost no symptoms at all, And I think that
Speaker 6: there probably is a lower rate of getting long COVID,
Speaker 6: but there is still absolutely a risk of getting this
Speaker 6: disease state. And I have dozens of people in the
Speaker 6: past few weeks who told me they've just now developed
Speaker 6: long COVID. So it should not be accepted that long
Speaker 6: COVID is done and it's over and you don't If
Speaker 6: you didn't get it, you're not going to get it.
Speaker 6: I do not think that's accurate.
Speaker 4: Yeah, So, patrons who asked how to avoid long COVID
Speaker 4: Carol Young, R. J Renson, Brick Klein, first time question askers,
Speaker 4: Nyaholt and Jessa H. One of the ways is to
Speaker 4: not get COVID in the first place, and patrons had
Speaker 4: questions about the shot, including James Hale's Chris Loss, Ashton Gill,
Speaker 4: next Door, Hit the Creator, Haley Pingle, William Andrews Ozam,
Speaker 4: and Gurly Hippie, who asked does the vaccine actually make
Speaker 4: a difference? Does it help prevent or minimize long term COVID?
Speaker 4: And studies show yes. To a September twenty twenty four
Speaker 4: study published in the Journal of the American Medical Association,
Speaker 4: vaccinated persons had a lower cumulative instance of long COVID
Speaker 4: at one year than unvaccinated persons, at about a fifty
Speaker 4: percent reduction if you're vaccinated. So in general, unvaccinated folks
Speaker 4: had about a ten percent chance of developing long COVID,
Speaker 4: but vaccinated people had about a five percent chance. As
Speaker 4: the vaccine can reduce the severity of the infection. And
Speaker 4: in part one, doctor Eely did address vaccine injury, but
Speaker 4: noted that the chance of that is much lower than
Speaker 4: getting long COVID from skipping the vaccines and the boosters. Now,
Speaker 4: what if you can't remember if you got the booster
Speaker 4: because you have brain fog, Well, you're not alone with
Speaker 4: that mental cloud cover. This was on the beautiful but
Speaker 4: possibly beleaguered minds of patrons Aaron Hatton, Patrick Bedine, Ellison
Speaker 4: Mersa Jacobson, Rebecca Jackson, Quinn Amber Panita, Julia breesenbrook A,
Speaker 4: Nastagia Zagarowitz, Katrina Fisher, Benevolent Ish, and Laurel who asked,
Speaker 4: in their words, when I had COVID summer of twenty
Speaker 4: twenty one, I felt like I was missing puzzle pieces
Speaker 4: with my thoughts and memories, and it slowly came back,
Speaker 4: but I still feel like my brain doesn't work as
Speaker 4: well as it did pre COVID. Laurel says, what's that about?
Speaker 4: And a lot of people had questions, like, in Aaron's words,
Speaker 4: how common is it to have brain fog following COVID
Speaker 4: and can this last for an extended time? Benevolent Ish
Speaker 4: also says, after avoiding COVID through the official pandemic, I
Speaker 4: caught it last October, and I know that the difference
Speaker 4: between the quarantine and pandemic. I feel like it's very
Speaker 4: important to note. I think a lot of people say
Speaker 4: the pandemic and they mean quarantine. Do you know what
Speaker 4: I mean? Yes, just my side note, But they say
Speaker 4: I caught it last October. Now four months later, there's
Speaker 4: still mental fog going on. What the hell is that?
Speaker 4: How much longer will it last? So a lot of
Speaker 4: folks want to know, struggling to remember words things like that,
Speaker 4: Any idea how long on average it tends to last?
Speaker 6: Yeah, you're ali. All those people's names you mentioned, I'm
Speaker 6: so sorry that they're suffering from this, the brain fog,
Speaker 6: and that term really is an underdescription of what they're experiencing.
Speaker 6: Most times, it's really neuropsychological impairment. And be clear that
Speaker 6: we test these patients and they have sometimes meet absolutely
Speaker 6: meet criteria for mild to moderate dementia. So don't think
Speaker 6: that this is just oh I'm a little you know,
Speaker 6: foggy in my memory. No, this fits with the criteria
Speaker 6: for dementia in some cases. And in fact, our NIH
Speaker 6: sponsored study Reverse long COVID, the funding is there with
Speaker 6: the first aim of the study is to see can
Speaker 6: we improve brain function with an imminomodulator. So it's it's
Speaker 6: a serious enough problem that lasts for weeks and months,
Speaker 6: if not years, that we believe that it should be
Speaker 6: subjected to clinical trials of immunomodulation. And we are doing that.
Speaker 4: And You can find out more about the study at
Speaker 4: Reversing long covid dot org, which is a study to
Speaker 4: see if an FDA approved immunomodulary medication. It's a drug
Speaker 4: called bearsittinib, which is already used to treat COVID, can
Speaker 4: help improve thinking and memory problems and reduce fatigue for
Speaker 4: people who have long COVID. And this study is federally
Speaker 4: funded by the National Institutes of Health for now. But
Speaker 4: in general, how long does that cloudiness of brain fog
Speaker 4: hang around?
Speaker 6: In short versions of how long can it last? It
Speaker 6: can absolutely last an entire season of your life, you know, spring, summer, fall,
Speaker 6: or it could end up lasting a couple of years.
Speaker 6: And we absolutely have patients who say that they're on
Speaker 6: their third year of long COVID and they've never been
Speaker 6: able to cognitively get back to where they were before.
Speaker 6: I know that sounds harsh and scary. I do not
Speaker 6: want people to give up. Hope absolutely believe that we
Speaker 6: can get the brain back, just like we've done with
Speaker 6: the ICU survivors. I think that this can happen for
Speaker 6: long COVID paces too, and so I hope that people
Speaker 6: don't lose hope.
Speaker 4: Someone named brain Shenanigan's right person to ask this question
Speaker 4: wants to know if there are any sort of similarities
Speaker 4: in brain scans between long COVID brain fog and Alzheimer's
Speaker 4: dementia amnesia. Is there anything we're seeing neurologically that would
Speaker 4: qualify as a different neurological disease.
Speaker 6: The data are rapidly emerging. But if you look at
Speaker 6: the data, especially out of the UK, but now out
Speaker 6: of the US as well, there are data from MRIs
Speaker 6: and fMRIs to show the both atrophy of different areas
Speaker 6: of the brain and functional deficits in the way that
Speaker 6: the brain is working. And I did a couple of
Speaker 6: pretty long tweetorials about this back when I was on Twitter.
Speaker 6: I'm pretty much off Twitter x now. But the data
Speaker 6: are very clear that people do experience functional and neuropsychological
Speaker 6: deficits as well as anatomic deficits. So what we think
Speaker 6: is happening there is that tells you earlier the glial
Speaker 6: cells are injured, and then when the glial cells are injured,
Speaker 6: the neurons get injured, and so you're actually losing I
Speaker 6: did that analogy of the plants with the soil and
Speaker 6: the water, and.
Speaker 4: It's covered in Part one. The non neuronal glial cells
Speaker 4: help support and clean up the neurons of the brain,
Speaker 4: so they're like the soil and the plants are doing
Speaker 4: the thinky part.
Speaker 6: The planet itself can wilt and the neurons themselves can die,
Speaker 6: and when you have that occur you can lose actual
Speaker 6: brain tissue. The good thing about this is though, that
Speaker 6: the brain can come back and we can rehabilitate the brain,
Speaker 6: and the brain can cells and neurons can regrow, and
Speaker 6: we know that that can happen. So there's a beautiful
Speaker 6: story evolving in the area of neuroscience. And I'm not
Speaker 6: a neuroscientist, so don't think that I'm trying to pretend
Speaker 6: to be a neuroscientist. I'm an intensivist. But these data
Speaker 6: are very encouraging.
Speaker 4: And for more on that, you can see the paper
Speaker 4: Brain Abnormalities and Survivors of COVID nineteen after two year Recovery,
Speaker 4: a function MRI study which found that survivors of mild
Speaker 4: and severe critical long COVID had a significantly higher score
Speaker 4: of cognitive complaints involving cognitive failure and mental fatigue than
Speaker 4: the healthy control group. And even if you have brain
Speaker 4: fog and you can't find your keys or do the
Speaker 4: Sunday crossword, you're like, Oh, people who have long COVID
Speaker 4: have complaints about cognitive failure. No shit, Sherlock. However, this
Speaker 4: study is noteworthy because researchers are getting data from these
Speaker 4: functional MRI studies to locate exactly what parts of the
Speaker 4: brain are affected.
Speaker 6: Scary and encouraging that maybe we can do something about
Speaker 6: it in the long run.
Speaker 4: Anthro curator wanted to know, since getting COVID, why does
Speaker 4: my nervous system freak out whenever I have any virus now?
Speaker 6: So people can get both central and peripheral neurological diseases
Speaker 6: in long COVID. We talked about the central ones quite
Speaker 6: a bit just now, but for neuropathies that people develop
Speaker 6: are very discouraging to people. They get burning and tingling
Speaker 6: in their hands and feet, and motor difficulties as well.
Speaker 6: You asked, why does it get worse now when you
Speaker 6: have other viral injuries? Once these things are set in motion,
Speaker 6: any kind of infection or exacerbation of inflammation will make
Speaker 6: them worse. And whenever you get a viral injury, you
Speaker 6: get inflammation which then can exacerbate what is the now
Speaker 6: newly acquired nerve disease in your body.
Speaker 4: You know, someone asked about only one person asked about diet,
Speaker 4: which I was surprised about. And we're going to get
Speaker 4: right back to that diet question in a minute. But first,
Speaker 4: of course, we donate to a cause of the eologist choosing,
Speaker 4: and this week it's going to Icudelirium dot Org, which
Speaker 4: we talked about in part one, is offering support to
Speaker 4: long COVID patients. And we're also sending additional donations this
Speaker 4: week to the Cohen Center for Recovery from Complex Chronic Illness,
Speaker 4: which is the world's first medical center dedicated to researching
Speaker 4: and treating infection associated chronic conditions, and will donate to
Speaker 4: Diana Cowar's favorite cause, the Open Medicine Foundation, to support
Speaker 4: research and clinical trials FORMECFS and long COVID. So thank
Speaker 4: you to sponsor this show for making all these donations possible.
Speaker 1: When it comes to a great deal, Virgin Mobile doesn't
Speaker 1: play around, introducing a new simplan price locked at fifteen
Speaker 1: euro month for life with unlimited data, calls and text
Speaker 1: and ninety nine percent coverage switch today at Virgin Media
Speaker 1: dot Ie Virgin Media it's playtime.
Speaker 2: TCNC supply fifteen europer month locked in, while a Virgin
Speaker 2: Mobile customer twelve month contract include unlimited data, standard calls
Speaker 2: and texts. All Irish networks offer ends Februar eighteenth, twenty
Speaker 2: twenty six. See Virgin Media dot E.
Speaker 3: Bian montmagt burger onnlu the heartnir, the holla, the hayman
Speaker 3: a heckl ah ersuen urs lance LADENI detain nudovsho that
Speaker 3: will kill nagadarhu la hula's homperodes on uderas ors lance
Speaker 3: is phaserlatguns through tasha tapa sera, nashka august nav is
Speaker 3: FuGO more hey rig hi a punk ie is called
Speaker 3: la a atudoros or reslanza. If we real this in
Speaker 3: the heron.
Speaker 4: Okay, back to your questions and if you're hungering for
Speaker 4: more on the diet and long covid one, here you go.
Speaker 4: K Pel has asked, is there any correlation to long
Speaker 4: covid and night shade sensitivities? Is going on an autoimmune
Speaker 4: friendly diet like a low inflammatory diet? Does that help
Speaker 4: any of your patients? That you've seen.
Speaker 6: I love that you asked that. So whoever asked that,
Speaker 6: thank you.
Speaker 4: You're welcome.
Speaker 6: This is anecdotal, but I have gotten in the twenty
Speaker 6: to thirty emails from physicians, scientists, people who really do
Speaker 6: know science well who said that going on a keto
Speaker 6: diet has really helped them, which is supposed to be
Speaker 6: lack of inflammation. I'm not saying to everybody here to
Speaker 6: go on that diet, but my point is this, there's
Speaker 6: absolutely a relationship between what you eat and how this
Speaker 6: disease might go forward. And I do think that a healthy, appropriate,
Speaker 6: balanced diet is the first way to start. Whether or
Speaker 6: not you go fully on a low inflammation diet to
Speaker 6: generate ketones and avoid the inflammation that can occur with
Speaker 6: otherwise eating is something to try and do it under
Speaker 6: the advice of a nutritionists. I think, don't wing this
Speaker 6: and have somebody professional in your life helping you figure
Speaker 6: out if this is making a difference or not.
Speaker 4: Yeah. I know with Diana there were very few foods
Speaker 4: that she could eat for a while. She's starting to
Speaker 4: introduce them back. Do you see food intolerances common in
Speaker 4: terms of just wiping people out?
Speaker 6: Absolutely, wiping people out. Again. I'm not a nutritionist, but
Speaker 6: there's no question in my mind that some people have
Speaker 6: been made way better by eating very very strict diets,
Speaker 6: rooming multiple things, and adding one thing at a time
Speaker 6: back in. I'm encouraged to hear that Diana is adding
Speaker 6: them back in slowly, and I think that that sort
Speaker 6: of a controlled approach is the way to go, And
Speaker 6: no doubt she and her husband are scientists, so they'll
Speaker 6: take a very careful approach as she gets better.
Speaker 4: Yeah, it's been really heartening to see that she's able
Speaker 4: to introduce more things. For a while, she was like pistachios,
Speaker 4: yams like a super restricted and I really wanted to
Speaker 4: highlight more of Diana Kaaren's story. Her YouTube channel goes
Speaker 4: by the name Physics Girl, and she's a pillar of
Speaker 4: the sycom community. You've probably heard of her, and she
Speaker 4: has had long COVID since twenty twenty two and a
Speaker 4: year into it, her husband Kyle posted an update for
Speaker 4: her saying thank you everyone so much for the kind
Speaker 4: messages and checking in. The support and love is overwhelming,
Speaker 4: and Diana went on to say, through Kyle, I just
Speaker 4: don't know how to respond. I am very sick, She writes,
Speaker 4: MY brain works at twenty percent capacity for a few
Speaker 4: minutes a day. I can barely move or talk. The
Speaker 4: rest of the time, I lie here with my eyes
Speaker 4: closed in a quiet dark room, no music, no reading,
Speaker 4: no phone. I count breaths, meditate, repeat mantras to soothe
Speaker 4: my fears. Sometimes I succeed. She continues, I have severe
Speaker 4: MCAS mast cell activation syndrome and severe mecfs pots small
Speaker 4: intestinal bacterial overgrowth or CEBO, and a lower gut infection
Speaker 4: that have been diagnosed so far. The mass to cell
Speaker 4: activation syndrome is brutal. I get dizziness, nausea, and chest
Speaker 4: pain from everything. Every food I eat fragrance. I smell
Speaker 4: organic cotton sheets that have been boiled with no detergent.
Speaker 4: All my meds they're supposed to help mcas, She writes,
Speaker 4: I can't wear clothes, I can't use toothpaste. Kyle has
Speaker 4: to boil hypoallergenic baby wipes so I can bathe without
Speaker 4: getting rashes. This disease is truly horrible, but we're still
Speaker 4: trying treatments, and I promise I'm hanging in there. I
Speaker 4: have the best support system I could imagine you all included.
Speaker 4: So that was what Diana had Kyle in twenty twenty three,
Speaker 4: twenty twenty five. She's still suffering greatly and her primary
Speaker 4: caregiver is her husband, Kyle, and they were married in
Speaker 4: spring of twenty twenty two. She got COVID in the
Speaker 4: summer and by that August began to realize something was
Speaker 4: very wrong. And Kyle and Diana have been very vocal
Speaker 4: advocates for the treatment and the research around long COVID,
Speaker 4: and they were so kind to send me about a
Speaker 4: ten minute voice note detailing their experience, and I was
Speaker 4: going to cut out just a few minutes to share
Speaker 4: with you, but I listened to it and all of
Speaker 4: the information and the insight and their lived experience was
Speaker 4: so compelling. I'm just going to share the whole thing
Speaker 4: with you because I think it's super important. And then
Speaker 4: we're going to jump back into our interview with doctor
Speaker 4: Wes Ealy, but first let's hear from the bedside of
Speaker 4: Diana Coweren and her caregiver and spouse, Kyle.
Speaker 7: All Right, here it goes.
Speaker 8: I'm Kyle kitz Miller. My wife is Diana Cowen, aka
Speaker 8: the Physics Girl. She's had severe long COVID for coming
Speaker 8: on three years now, and yeah, I just want to
Speaker 8: talk a little bit about our experiences and my experience
Speaker 8: as a caregiver for that.
Speaker 7: Let's see where to start.
Speaker 8: Long COVID is probably the hardest disease to be a
Speaker 8: caregiver for that I could imagine, and I'm talking about
Speaker 8: both long COVID and MACFS here sort of. You know,
Speaker 8: these these overlapping diseases, And one of the reasons it's
Speaker 8: so hard is because people just don't know about it.
Speaker 8: And when I say people, I mean friends, family, doctors.
Speaker 8: Basically nobody knows about this disease. And that makes it
Speaker 8: so so isolating. So imagine somebody has cancer, You get
Speaker 8: diagnosed with cancer, it's this absolutely terrible thing, and friends, family,
Speaker 8: they're there for you, they say, oh my god, this
Speaker 8: is so terrible. Anything I can do to support you,
Speaker 8: let me know. And long COVID you get this diagnosis
Speaker 8: for it, and people ask you questions like, oh, have
Speaker 8: you tried fish oil? Have you tried meditation? Have you
Speaker 8: tried acupuncture? And it's not to say that those things
Speaker 8: are bad, but it speaks to the fact that people
Speaker 8: just don't understand that this is a disease just as
Speaker 8: serious as cancer, and that requires the same type of
Speaker 8: medical attention to it. But nobody understands that it disrupts
Speaker 8: your life, especially when people have you know, brain fog
Speaker 8: and fatigue and mass sell activation stuff, these these these
Speaker 8: symptoms that just completely derail your life, make you unable
Speaker 8: to work, house bound, bed bound, things like that.
Speaker 4: Just a quick primer on masked cell activation syndrome. So,
Speaker 4: mass cells are a part of your immune system army,
Speaker 4: and as white blood cells, they protect against foreign invaders.
Speaker 4: Then they release histamine to chase out the viruses and
Speaker 4: other pathogens, and mcas massed cell activation syndrome occurs when
Speaker 4: they're overactive in that histamine response, causing things to go haywire,
Speaker 4: among other long COVID symptoms, and you just lose your life.
Speaker 7: And people don't understand that it's serious.
Speaker 8: They don't understand how to comfort you, they don't know
Speaker 8: how to support you, and because of that, it's so isolating.
Speaker 8: At the same time, doctors don't know how to treat it.
Speaker 8: There's many doctors who still, you know, four or five
Speaker 8: years into this, don't understand how to treat or address
Speaker 8: even the basics of long COVID and can give you
Speaker 8: information that hurts you.
Speaker 4: This is why doctor Wes Ely is renowned in the field.
Speaker 8: It's getting better, but it's still huge problem and he
Speaker 8: can take years sometimes to get the proper diagnosis. One
Speaker 8: experience we had was going into an emergency room, and
Speaker 8: that was the worst experience, the worst medical experience we've
Speaker 8: had so far, because essentially, in that situation, the doctor
Speaker 8: treating Diana did not understand anything about long COVID or MACFS,
Speaker 8: was not familiar with these diseases at all, and so
Speaker 8: didn't respect the fact that Diana has a limited amount
Speaker 8: of energy she can spend each day. She has this
Speaker 8: energy envelope, and going beyond that is really detrimental to
Speaker 8: her health.
Speaker 4: This is the spoon theory that we talked about in
Speaker 4: Part one, and spoonies as they sometimes call themselves, deal
Speaker 4: with chronic illnesses and they have a finite amount of
Speaker 4: energy that they can expend without a debilitating crash afterward.
Speaker 8: And so the doctors just wanted to run test after
Speaker 8: test after test after test, regardless of the way Diana felt.
Speaker 8: If she was too tired, it didn't matter. They were
Speaker 8: searching to find something that they could diagnose her with
Speaker 8: when she had long COVID.
Speaker 7: That was the disease she had, but there's no test
Speaker 7: for it.
Speaker 8: There's no biomarkers, so they're trying to test for everything
Speaker 8: else that they can find. But the problem for us
Speaker 8: is we went in there for a very specific thing.
Speaker 8: Diana had been exhibiting signs of having a pulmonary embolism.
Speaker 7: We went, you know, we went to the emergency room
Speaker 7: for that.
Speaker 8: We told the doctors that her nurse that had been
Speaker 8: treating her said, she seems like she has a pulmonary embolism.
Speaker 8: Go to the emergency room, and the doctors didn't listen
Speaker 8: to us. They didn't run any tests for a pulmonary embolism.
Speaker 8: They ran every other test that they could imagine, probably
Speaker 8: fifty sixty tests. Everything came back normal. We ended up
Speaker 8: having to leave because Diana was just too tired. We
Speaker 8: left against me advice, and then you do that and
Speaker 8: the next time you go to the emergency room, the
Speaker 8: doctors treat you like crap because you're somebody who doesn't
Speaker 8: listen to them. Long story short, she had a pulmonary
Speaker 8: embolism and we went back to the emergency room a
Speaker 8: week later, they did the test right off that the
Speaker 8: nurse that advised me to ask for, They found the pe,
Speaker 8: they gave her medication for it, and we were out
Speaker 8: the door. And it could have been that simple. But again,
Speaker 8: the doctors don't know the disease, they don't listen to
Speaker 8: patients experiences, they don't listen to other doctors and medical
Speaker 8: professionals who are outside of it. So it's a really
Speaker 8: really difficult system to be in.
Speaker 4: Medical insurance systems is different in different countries, but here
Speaker 4: in the US.
Speaker 8: You know, another aspect here that's just kind of icing
Speaker 8: on the cake is that insurance isn't covering long COVID
Speaker 8: treatments in and of itself. Again, we have this problem
Speaker 8: of lack of biomarkers, lack of knowledge around on the disease,
Speaker 8: and so most of the time the only thing that
Speaker 8: insurance will cover our comorbidities. So let's say you have POTS,
Speaker 8: or you have high heart rate, or your blood pressure
Speaker 8: is low or.
Speaker 7: High or something like that.
Speaker 8: You might be given specific medications for that and that'll
Speaker 8: be covered by insurance. But what if the tests are
Speaker 8: quote normal, and there's something your doctor wants to try
Speaker 8: because they read that it'll help you. You know, there's
Speaker 8: keeping up with the research. They read, Okay, this will
Speaker 8: help you. Insurance isn't going to cover that unless there's
Speaker 8: a specific test for it, and that can be really
Speaker 8: prohibitive for a lot of patients. So the whole insurance
Speaker 8: system and how that works and doctors not being able
Speaker 8: to get things covered that may help their patients is
Speaker 8: just a huge roadblock for a lot of people who
Speaker 8: are seriously sick. More often than not, doctors just don't
Speaker 8: know about it right. There's no just general knowledge about
Speaker 8: long COVID and how to treat it out there, So
Speaker 8: you have to search and keep searching for a doctor
Speaker 8: that actually knows what they're doing or someone who's going
Speaker 8: to listen to you as a patient, which both of
Speaker 8: those things are just, for whatever reason, exceedingly rare.
Speaker 4: Again, doctor Eli's approach is so appreciated in the community
Speaker 4: of patients with long COVID and their caretakers. And according
Speaker 4: to the December twenty twenty four paper prevalence of post
Speaker 4: COVID nineteen condition and activity limiting post COVID nineteen condition
Speaker 4: among adults in the US, it's around eight and a
Speaker 4: half percent of people and about two percent currently suffer
Speaker 4: from it, and globally around thirty five percent of people
Speaker 4: who have confirmed COVID cases have some form of lingering
Speaker 4: long COVID symptoms. Now, what if you're just exhibiting the
Speaker 4: first signs of long COVID. Diana had planned to hike
Speaker 4: miles and miles of trails in this long trip in
Speaker 4: the Scottish Highlands, but she had to stop every ten minutes.
Speaker 4: She only lasted two days on the trip. Kyle recounts
Speaker 4: trying to get a diagnosis shortly after Diana first started
Speaker 4: having brain fog in extreme fatigue. Now, prior to getting COVID,
Speaker 4: Diana had been really healthy, super active again, planning along,
Speaker 4: hiking trek, keeping up with her YouTube channel, and then
Speaker 4: she got COVID and she knew something was wrong but
Speaker 4: didn't know what.
Speaker 8: When Diana first got sick, I went to the doctor's
Speaker 8: office with her, and I had all of this paperwork
Speaker 8: and all of these different tests that people were doing
Speaker 8: to try and figure out what's going on with long COVID.
Speaker 8: This was back in like twenty twenty two and basically
Speaker 8: was just met with blank stares from her doctor. This
Speaker 8: was her primary care doctor who went in there and
Speaker 8: I was like, there's these different tests, these different biomarkers
Speaker 8: that people are measuring, talk about blood clotting and things
Speaker 8: like that. Can we start investigating what's going on with her?
Speaker 8: There's something seriously wrong with her.
Speaker 5: You know.
Speaker 7: I was sitting with her in that visit as a
Speaker 7: patient advocate.
Speaker 8: And I literally just got eye rolls and blank stares
Speaker 8: for thirty minutes. Every single test I asked for, every
Speaker 8: single thing I brought up was just like, we don't
Speaker 8: do that, there's no reason to do that test whatever
Speaker 8: it is, or just like I don't know, kind of
Speaker 8: like just go home and rest was the only response
Speaker 8: we got in this primary care meeting.
Speaker 7: So that's what a lot of patients are faced with.
Speaker 4: So advocate for yourself and if you're very lucky, you
Speaker 4: have a trusted caregiver.
Speaker 8: The last thing I wanted to chat about was advice
Speaker 8: for patients and caregivers. Yeah.
Speaker 7: I have a lot of advice.
Speaker 8: The first piece of advice that I would give to
Speaker 8: caregivers is to listen. Listen Listen to whoever it is
Speaker 8: you're taking care of the person who's sick with long COVID.
Speaker 8: They know their body, the best they understand what they're
Speaker 8: going through. Everyone with this disease wants to get better,
Speaker 8: wants to get their life back, and they just don't
Speaker 8: know how. The only reliable intervention we have right now
Speaker 8: that works across the board is rest, and it's so
Speaker 8: freak and frustrating because you want to do something to
Speaker 8: get better. As a caregiver, you want to encourage the
Speaker 8: person you're taking care of to get better. They want
Speaker 8: to do something to get better, and we just don't
Speaker 8: have the medical interventions, the science, whatever you want to say,
Speaker 8: we don't have enough knowledge to say this is what
Speaker 8: you need to do to get better. And so sometimes
Speaker 8: your only choice is just to rest. And as a caregiver,
Speaker 8: you have to honor that, and you have to know
Speaker 8: and believe and have faith that you know the patient
Speaker 8: wants to get better. And it's frustrating and it's hard
Speaker 8: and it's demoralizing, but you just have to listen and
Speaker 8: support and be there for that person. And then the
Speaker 8: next piece of advice is to not give up, to
Speaker 8: keep going, to keep experimenting. You have to honor the
Speaker 8: energy limits of the person you're taking care of, of
Speaker 8: course first and foremost, but you have to keep experimenting,
Speaker 8: keep trying, finding doctors that will listen, getting on the forums,
Speaker 8: just making lists, staying organized, trying to figure out what's
Speaker 8: the next symptom or thing that you're going to try
Speaker 8: and tackle. Don't race through it, don't try and do
Speaker 8: everything at once. It's you know, a marathon. People are
Speaker 8: staying sick for years and they're seeing gradual improvements, and
Speaker 8: you just have to keep going over time, trying things
Speaker 8: and finding what works for you.
Speaker 7: Dinah, do you have anything you want to add?
Speaker 6: Really?
Speaker 7: Okay?
Speaker 4: Kyle and Diana sharing her story is why I still mask,
Speaker 4: why I get every boosters, why I know COVID is
Speaker 4: not just a cold, because COVID and long COVID get
Speaker 4: buried in the news cycle and a lot of people
Speaker 4: want you to say it's not that big a deal. Now.
Speaker 4: Long COVID can cause a constellation of symptoms with so
Speaker 4: many letters, mecfs, pots, CBO, mcas, that masked cell issue
Speaker 4: and elevated histamine levels, And that last one was on
Speaker 4: the minds of patrons. Book is Shelley and Special k
Speaker 4: and Kate Tim's both wanted to know in special case
Speaker 4: words are elevated histamine levels part of long COVID complications,
Speaker 4: and Kate says, one of my major features is tones
Speaker 4: of sudden food intolerances that can increase histamine. What is
Speaker 4: the role of histamine in long COVID.
Speaker 6: Yeah, I think some people are really affected by this.
Speaker 6: And there's even mcast mass cell activation syndrome. So some
Speaker 6: people get a lot of benefit from antihistamine therapies. And
Speaker 6: in that circumstance. You know, that's an example where I
Speaker 6: said earlier of each of these patients needs to approach
Speaker 6: this on individualized basis, and clinicians need to say what
Speaker 6: works for one person isn't working for another. So just
Speaker 6: because you know three people in a row got way
Speaker 6: better with antihistamines doesn't mean the next three will. And
Speaker 6: yet it doesn't deny the fact that those three had
Speaker 6: a more histamine based disease state than did the others.
Speaker 4: So if you do have overactive mass cells and high histamine,
Speaker 4: antihistamine medication may help or it just might not. Why
Speaker 4: do some things work on some people? And what therapies
Speaker 4: are bullshit?
Speaker 6: So this can sound kind of QUACKI in a way,
Speaker 6: And this is what I was kind of worried about
Speaker 6: at the beginning when I was getting into this area
Speaker 6: is that you know, I'm a board internists. I've got
Speaker 6: board certifications and you know, pulmonary critical care medicine as well.
Speaker 6: So I come from a very traditional medical background, and
Speaker 6: yet a lot of people in this realm are having
Speaker 6: to go kind of off conventional Western medicine and are
Speaker 6: finding a lot of benefits. So I say, go for
Speaker 6: it if it helps, do it with somebody watching over
Speaker 6: your back. You know Ross Stout that wrote a great
Speaker 6: book called The Deep Places where He's a New York
Speaker 6: Times author, and he had long line and his book
Speaker 6: was very useful for me to realize that he even
Speaker 6: he said, I can't believe I'm trying these weird things,
Speaker 6: but they're helping, and so he did. And so I
Speaker 6: think everybody needs to just show each other respect and listen.
Speaker 4: Any advice for people who might be getting sold some
Speaker 4: snake oil. I know that when you are sick, you
Speaker 4: will try everything, and sometimes those things might work. But
Speaker 4: any flags that you want to raise, like if someone
Speaker 4: is trying to sell you this, or if someone is
Speaker 4: trying to promise like this one we know doesn't work.
Speaker 6: You know absolutely, And I think It's important to know
Speaker 6: that people have hurt themselves quite a bit by different
Speaker 6: long COVID treatments. People have gotten bad central line infections,
Speaker 6: they've gotten infusion related complications, they've gotten blood clots. There's
Speaker 6: a lot of damage that has been done by just
Speaker 6: trying anything, and I think we have to be very careful.
Speaker 6: That's why I said multiple times, already do it under
Speaker 6: the supervision of somebody that you trust. And I think
Speaker 6: that we have to acknowledge the need for randomized controlled trials.
Speaker 6: I still believe in the beauty of the double blind
Speaker 6: Placiba control trial. That's what we're conducting right now, and
Speaker 6: it's a high science trial. We're measuring a lot. Patients
Speaker 6: are being very very generous with their time here. When
Speaker 6: people are doing things, recommending and saying definitively that it works.
Speaker 6: But you don't have a control group, you don't really know.
Speaker 6: I think it's worth considering, but you have to take
Speaker 6: it with a grain of salt and realize that you
Speaker 6: might get started on something they could harm you.
Speaker 4: Okay, So in that book The Deep Places about long Lime,
Speaker 4: the author details therapies that other patients attempted to find
Speaker 4: any relief and that included herbs and enzymes, hyperbaric chambers,
Speaker 4: ozone therapy, saunas, acupuncture, reiki healing, b venom, ultraviolet light
Speaker 4: or photon therapy, magnetic therapy, colonics, high vitamin C, and
Speaker 4: more remedies that are not exactly vetted or approved of
Speaker 4: by Western science and are deemed ineffective or at least
Speaker 4: in need of much much more testing. And long lime,
Speaker 4: like long COVID, tends to draw patients desperate for a
Speaker 4: cure and doctors skeptical of their condition in the first place.
Speaker 4: And you mentioned someone who had long lime. Long lime,
Speaker 4: I know is very controversial, chronic lime. I feel like
Speaker 4: there's still maybe patients who say they have it, doctors
Speaker 4: who say they don't. Taylor Clinton wanted to know, is
Speaker 4: there a correlation between people who have had a prior
Speaker 4: diagnosis of lime or epstein bar and those experiencing long COVID.
Speaker 4: What kind of similarities exist between those kind of chronic infections.
Speaker 4: So this was also in the minds of Britney Corrigan,
Speaker 4: Amanda the Farming Linguist, Kayla White, Emily jen Nikki G.
Speaker 4: Curtis Takahashi, Katherine B. Garden specialist Daniel Opdahl, earl if Grammelkin,
Speaker 4: Bjorn Fredberg, elongated muskrat, Megan Walker, Katrina khalaif, Jeneta Sort,
Speaker 4: Melissa Burger, Valerie Kirby, Andrea, all of whom asked about
Speaker 4: ebv epstein, bar virus or mono you might notice and
Speaker 4: other post viral illnesses.
Speaker 6: It's an important question, and the tough immynologist in the
Speaker 6: world would not even be able to definitively give you
Speaker 6: an answer. But let me get let me give you
Speaker 6: an idea. Let's look at human noses. Okay, human noses
Speaker 6: come in all different shapes and sizes and colors, but
Speaker 6: what they have in common is way more important than
Speaker 6: the disparate natures of the noses. Right, the air inhilation,
Speaker 6: the way it controls filtering, risk of infections, the way
Speaker 6: it provides good gases for your exchange and your body
Speaker 6: for cellul and metabolism. That's kind of like the way
Speaker 6: I feel about these post infection associated chronic conditions. If
Speaker 6: you have already gotten long lime or already have a
Speaker 6: post stars infection associated chronic condition, and then you get
Speaker 6: COVID three times, you're way more likely to develop this problem.
Speaker 6: So these these ICCs have more in common than they
Speaker 6: do desparate.
Speaker 4: And just a reminder, as covered in Part one, an
Speaker 4: aic C is an infection associated chronic condition, and.
Speaker 6: If you've already got it activated in your body, then
Speaker 6: the next time you get a viral illness like this,
Speaker 6: you're likely to get it jacked up. I do not
Speaker 6: think that these like going back to the noses things.
Speaker 6: I don't think that a different colored nose is like
Speaker 6: the different like stars, long lime, a chronic fatigue syndrome
Speaker 6: from EBV, that these are all totally different illnesses. I
Speaker 6: think there's a lot of overlapping the mechanism behind these diseases.
Speaker 4: And let's not forget that doctor Eli is an intensivist,
Speaker 4: also a lung guy, and patron Leora Spitzer wrote in HI,
Speaker 4: my spouse hasn't fully recovered from having cold last summer.
Speaker 4: Various tests of lungs and oxygen levels haven't found anything
Speaker 4: physically wrong, but they're still experiencing breathing and heart problems.
Speaker 4: This is something commonly seen with COVID, they ask, and
Speaker 4: patron Nikki G said, I'm really curious about the incidents
Speaker 4: of vascular events like strokes deep vein thrombosis, heart attacks,
Speaker 4: and pulmonary embolisms, and younger patient populations with limited other
Speaker 4: risk factors. And remember from the surgical angiology episode and
Speaker 4: part one of this episode, one complication can be a
Speaker 4: pe or a pulmonary embolism, and that's a blood clot
Speaker 4: that travels to the lungs and that can be fatal.
Speaker 4: And you mentioned pulmonary system. We had some people who
Speaker 4: have had COVID who are still having respiratory symptoms. Lauren
Speaker 4: Miller asked if wheezing is a long COVID symptom stacy.
Speaker 4: Bendixen also has a wheeze that hasn't gone away in
Speaker 4: two or three years. Stephen Shelley says, okay, As someone
Speaker 4: who had asthma but then grew out of it and
Speaker 4: then got COVID and now has it again, what's the
Speaker 4: deal with that? I feel cheat by my lungs? They say, yeah,
Speaker 4: and so yeah, folks who their oxygen levels are fine
Speaker 4: but they're still experiencing some breathing and heart problems, what's
Speaker 4: up with that?
Speaker 6: You know, I'm a pulmonologist, so this is right up
Speaker 6: my alley.
Speaker 5: Great.
Speaker 6: You know the number of ways that the lung can
Speaker 6: respond to injury is somewhat limited and it filters everything.
Speaker 6: So the lung gets involved in tons of systemic diseases.
Speaker 6: In the New England Journal of Medicine, when we read
Speaker 6: our CPCs, our clinical pathological conferences, the lungs are almost
Speaker 6: always involved. You know. That's why we say, as ic
Speaker 6: you doctors, that we have to be involved with all
Speaker 6: different types of disease states and know them well. In COVID,
Speaker 6: patients could have scarring after a very severe about of
Speaker 6: COVID that landed them on a ventilator, or they could
Speaker 6: get reactive airways disease, which is what your patient just described.
Speaker 6: She says, Now she has asthma again. She has a
Speaker 6: reactivation of reactive airways disease and that's asthma, and that's
Speaker 6: an immunological disease, so we're talking about activation of the
Speaker 6: immune system. She already had a disease state like asthma
Speaker 6: that had an active problem vocally in her lungs, and
Speaker 6: although it had dampened down over the years, it's now
Speaker 6: very active again after COVID. I'm not surprised, and she'll
Speaker 6: probably need to be on steroid and Hailer's for a
Speaker 6: long time, but need to work with her doctor about
Speaker 6: that that's the right treatment for her. So my main
Speaker 6: message to anybody who's experiencing breathing problems is you can't
Speaker 6: be told what you have without a formal evaluation. So
Speaker 6: you need to actually see a doctor who knows about
Speaker 6: lung diseases, get a chest ticks ray, get lung function
Speaker 6: studies done, and get this evaluated formally. And you know,
Speaker 6: there are people who after COVID said they had long COVID,
Speaker 6: got a lot of shortness of breath, were losing weight,
Speaker 6: thought it was their dietary problem and they had lung cancer.
Speaker 6: So that was not from the COVID. They just happened
Speaker 6: to have lung cancer. So we need to rule out
Speaker 6: other disease states as well.
Speaker 4: Ali okay, And you know, talking about the heart a
Speaker 4: little bit, Julie Scott says, I have a friend who
Speaker 4: is diagnosed with aphib due to long COVID. Would really
Speaker 4: like to know how COVID impacts the heart. Looking at you,
Speaker 4: Shannon Jimodi Wise, Tiger Beauty and Pink Puppy. Other people
Speaker 4: they have friends or themselves have had heart issues. For
Speaker 4: relatively young people, stroke risk. What is long COVID doing
Speaker 4: to the heart.
Speaker 6: Yeah, So just like we talked about inflammation in the
Speaker 6: brain and or the lungs or the giatract, that can
Speaker 6: happen in the heart and people can get inflammation of
Speaker 6: the heart muscle called myocytis. They can actually get valvular
Speaker 6: disease as well and then getting a FIB. You're talking
Speaker 6: about the conduction system more.
Speaker 4: On heart health of course in the recent cardiology episode
Speaker 4: with doctor Herman Taylor.
Speaker 6: But so the heart has its own electrical system, and
Speaker 6: if there's damage to that electrical system, you can get
Speaker 6: different types of arrhythmias. So that's why cardiologists have to
Speaker 6: be involved in long COVID patients stories at different times,
Speaker 6: because people do get actual organic disease of the heart
Speaker 6: as part of this systemic disease state of long COVID.
Speaker 4: I feel like I know so many young people who
Speaker 4: have had blood cloths after having COVID. Is that something
Speaker 4: that would be related to long COVID if it happens
Speaker 4: six months later or is that just sort of chance,
Speaker 4: or is that the virus working on that clotting and
Speaker 4: in the end of theelial cells, remember from part one,
Speaker 4: those endothelial cells line your blood vessels and they can
Speaker 4: get damaged, leading to plaque build up and blood clots.
Speaker 6: Yeah. Good, So we talked a little bit earlier about
Speaker 6: the vascular nature of this disease process, and no doubt
Speaker 6: during the acute event of COVID is when the biggest
Speaker 6: vascular risk occurs. But think about a person like the
Speaker 6: woman I told you about earlier, who's only getting out
Speaker 6: of her bed once a week. She's immobilized, and she's
Speaker 6: got a lot of different changes going on her body
Speaker 6: regarding her weight and other aspects of things that are
Speaker 6: very difficult for her to manage right now. So immobilization
Speaker 6: is another risk factor for large vessel clotting. And we
Speaker 6: know that if you already have a vascular disease and
Speaker 6: or get COVID acutely and then start having weeks and
Speaker 6: weeks of basic immobility, you're going to be at risk
Speaker 6: for blood clots.
Speaker 4: And cardiologist doctor Herman Taylor mentioned that he and other
Speaker 4: heart experts say to keep it moving, keep that blood pumping. Now,
Speaker 4: what about heart rhythm issues like atriol fibrillation, which we
Speaker 4: just covered in the cardiology episode. That's when the beats
Speaker 4: of the upper receiving chambers of the heart. Get Al
Speaker 4: Wonky and patron Julia Scott said, I have a friend
Speaker 4: who is diagnosed with aphib due to long covid. I
Speaker 4: would really like to know why and how COVID impacts
Speaker 4: the heart anything anyone should know about aphib in general
Speaker 4: or well.
Speaker 6: Atrifibrillation is a risk factor for strokes. When the atria
Speaker 6: quiver rather than contracting, then that blood has a problem
Speaker 6: with stasis in that chamber of the heart and it
Speaker 6: can clot. If the blood's not flowing, it likes to clot.
Speaker 6: So if your atria is fibrillating, that is quivering, then
Speaker 6: it's not contracting, that blood gets static and you can
Speaker 6: get a clot and then if that clot gets shoved
Speaker 6: out into the body, you can have a stroke. So
Speaker 6: MAYFA It was a very serious problem and you must
Speaker 6: get that evaluated by a cardiologist or your doctor so
Speaker 6: you can get all the right treatments. You should definitely
Speaker 6: see a doctor.
Speaker 4: I've also heard of is it myocarditis.
Speaker 6: The yeah, myocarditis, and that's the inflammation of the heart
Speaker 6: muscle itself. That can happen post vaccine, or it can
Speaker 6: happen as part of long covid as well.
Speaker 4: Does that tend to reverse with treatment or is that
Speaker 4: a timing thing.
Speaker 6: Most of the patients that we've had with long covid
Speaker 6: and miocytis have gotten better over time. Sometimes they require
Speaker 6: anti inflammatory medications to help that resolve, or it might
Speaker 6: resolve spontaneously. But again, I just advise people to get
Speaker 6: evaluated by a cardiologist if they're having heart problems.
Speaker 4: Speaking of heartbeats. Rachel Julian, first time question Osker wants
Speaker 4: to know how much of long covid is pots? How
Speaker 4: much is pots adjacent? How much is unrelated? Does pots
Speaker 4: post COVID present slightly different from classical pots? They are
Speaker 4: a first time question asker and recent pots diagnoses and
Speaker 4: their GP said all long covid is pots, So pots
Speaker 4: on your minds and brains and hearts. Patrons, Lazy Martinez,
Speaker 4: Danny Gray at a Goom, Jennifer Frow, Sophia A. Sarah Summer,
Speaker 4: two stones with one check, Carrie Lead, Jojo Emerson, m
Speaker 4: Sarah Jenks, and Kevin Wilson again all asked about pots.
Speaker 4: I didn't hear about it ever before COVID? What is
Speaker 4: going on in the rise right?
Speaker 6: So postural orthosotic Tachacrdia syndrome is a very prominent feature
Speaker 6: of long COVID patients or postvioral illnesses generally, and we've
Speaker 6: seen a rapid, rapid rise in the numbers of people
Speaker 6: seeking help for the POTS. You're talking about massive rises
Speaker 6: in your heart rate, wide swings in your heart rate
Speaker 6: without any prompting. You're talking about standing up and passing out,
Speaker 6: or just sitting still. We have a medical student who
Speaker 6: has long COVID and just sitting there in a classroom
Speaker 6: studying and all of a sudden, out of nowhere, getting
Speaker 6: very sweaty, diaphoretic, lightheaded clammy, having to go to the er.
Speaker 6: These are autonomic instability problems and POTS problems, and so
Speaker 6: what's going on is the disease of the cardiovascar system
Speaker 6: and the autonomic nervous system, whereby formally regulated heart rate
Speaker 6: and blood pressure are now dysregulated. And people get formal
Speaker 6: evaluations that is diagnostic testing with cardiopulmonary exercise testing, sea
Speaker 6: pets and also tilt table tests.
Speaker 4: And according to the Mayo Clinic, for this test, you
Speaker 4: don't eat a drink for two hours and then you're
Speaker 4: tucked into a big bed you're strapped to it, if
Speaker 4: we're being honest, and you lie flat on this bed
Speaker 4: horizontal for about five minutes, they monitor your heart rate
Speaker 4: and your blood pressure, and then they pivot you to
Speaker 4: an upright position, a vertical position, to see how that
Speaker 4: heart rate and blood pressure change. Now, if you have pots,
Speaker 4: you may feel sweaty or light headed or dizzy or
Speaker 4: stick to your stomach, or you might have a pounding,
Speaker 4: racing heartbeat usually because of low blood volume.
Speaker 6: And patients when they go on the tilt test will
Speaker 6: absolutely lose consciousness or get wide swings and blood pressure
Speaker 6: and heart rate because of this. And the treatment is
Speaker 6: sometimes salt loading and fluid loading and other times getting
Speaker 6: medicines to control those heart rate instabilities.
Speaker 4: And low blood volume. Is that that's sort of part
Speaker 4: of all of that, So beefing up that blood volume.
Speaker 6: Yes, so the low blood volume, what some of these
Speaker 6: patients require is getting sometimes sixty to ninety ounces of
Speaker 6: water a day and salt loading as well, because the
Speaker 6: salt in with that fluid electrolyte solutions will hold that
Speaker 6: water in better. Instead, the water might just go right
Speaker 6: out of the vessels into your third spaces and you
Speaker 6: make create a edema. So the salt and water loading case,
Speaker 6: those blood vessels filled, and therefore you're less at risk
Speaker 6: to have the blood pressure drop and the heart rates sore.
Speaker 4: Is that just salt or is it other electrolytes like
Speaker 4: magnesium and potassium, things like.
Speaker 6: That, Yes, magnesium, potassium, sodium. Usually you can get the
Speaker 6: kind of a tasty mixture of those things where it's
Speaker 6: not like drinking water out of the Gulf of Mexico
Speaker 6: or the ocean. I don't want to get into the
Speaker 6: naming of the Gulf of Mexico right now.
Speaker 4: Let's tell you about all I can can Well, you know, uh,
Speaker 4: some people, just a few. Do you have time for
Speaker 4: a couple more listener questions like to me, okay, you're amazing, Okay, so,
Speaker 4: Amber Dickerson, Erica Binnarski, Maria Ford, Ari Fox, Sarah hus
Speaker 4: Georgia Claire Cheva Laherman asked about hormones. A few people
Speaker 4: asked about long COVID and hormonal fluctuations. People assign female
Speaker 4: at birth, people who are going through menopause. Are people
Speaker 4: who uh men straight? Do they have a higher risk
Speaker 4: factor for long COVID? What's going on there?
Speaker 6: Well, this is definitely out of my wheelhouse. I would
Speaker 6: just say though, that if you are listening to this
Speaker 6: and you're having problems like that, you're not dreaming that up.
Speaker 6: And just like the other organs in the body, the
Speaker 6: indocrine system can be absolutely affected. Any organ in the
Speaker 6: body can be affected by long COVID. That we said
Speaker 6: that in our Nasim report in the New England Journal
Speaker 6: and Medicine recently and the report we've published for the
Speaker 6: general public at large.
Speaker 4: I thought he was talking about a doctor Nasim, but
Speaker 4: he was referring to NASIM the National Academies of Science,
Speaker 4: Engineering and Medicine, and that paper he authored is titled
Speaker 4: a long COVID Definition a Chronic systemic disease State with
Speaker 4: Profound Consequences. And one aspect that they found is that.
Speaker 6: Any organ can be affected. And your indecate organs are
Speaker 6: the ones making those hormones, so they require a stable
Speaker 6: blood vessel supply, they require lack of inflammation, and if
Speaker 6: they get microclots and blood vessel problems and or inflammation,
Speaker 6: they absolutely can be dysregulated as well. So I hope
Speaker 6: that you find somebody to help you with these problems.
Speaker 4: Yeah, Patrons, Magpie laughs and Alyssa Burke wanted to know,
Speaker 4: on Alyssa's words, any more research on whether pax Lovid
Speaker 4: helps prevent long COVID.
Speaker 6: I don't have any good data to say that pax
Speaker 6: Slovid reduces the risk of long COVID. In fact, there
Speaker 6: was a randomis control trial recently done by headed out
Speaker 6: by Stanford that was negative in this regard. It was
Speaker 6: a two week therapy I believe of paxlovid. We don't
Speaker 6: have any evidence to say that the anti virals specific
Speaker 6: to COVID virus reduced long COVID risk. The drug met Foreman,
Speaker 6: studied by Carolyn Bramonte, did have some predictive nature of
Speaker 6: reducing long COVID. We need more data in that regard,
Speaker 6: and actually we have a grant that's being reviewed by
Speaker 6: the NIH to see if met Foreman can be tested
Speaker 6: in a double blind, pace of control fashion in patients
Speaker 6: who have long COVID. The data for met Foreman thus
Speaker 6: far were prevention, not treatment of long COVID. So you
Speaker 6: asked about nanokinase and now Trekson. These are other therapies
Speaker 6: that absolutely some people have claimed have made a big
Speaker 6: difference for them. Again, I don't want to disregard that
Speaker 6: these people have had big benefits from these therapies. I
Speaker 6: just know that two we don't have solid random ask
Speaker 6: control trial data. But I'm not discouraging people from trying
Speaker 6: these things. If they're professional, their doctor thinks that they should.
Speaker 4: Okay. And last listener question Julius, how close are we
Speaker 4: to an actual treatment protocol for physicians to treat long
Speaker 4: COVID okay protocol that health professionals should know about? Asked
Speaker 4: by Mary Strombham Johnson, Maurice Valerie, Bertha Kendall, Leonora Poter,
Speaker 4: Taylor Clinton, Kathleen Regovich, Mufu Mama, William Andrews Skuy, Rebecca Jackson,
Speaker 4: Rob h Carla di Azevedo, Eleanor Chandler, Julie s Maureene Flood,
Speaker 4: and Cynthia Wunda wanted to know how do we treat this?
Speaker 4: They all asked, how is the consensus going out there?
Speaker 6: I think that that would be years in the making. Unfortunately,
Speaker 6: I think that this is not months away for a
Speaker 6: treatment protocol to be widespread adopted. I think that for
Speaker 6: the next several years, while the randomizzed controlled trials are
Speaker 6: being done, and they are being done right now and
Speaker 6: that for the next several years. The rule approach here
Speaker 6: is going to be to take individual patients, listen to
Speaker 6: their symptom complex, understand them as well as possible, and
Speaker 6: then individualize those care approaches rather than this is the
Speaker 6: step ABC approach that all patients with LOONKOVI should get.
Speaker 6: I don't see that happening anytime soon.
Speaker 4: And your book too. It feels like it would give
Speaker 4: a lot of hope to patients in terms of like
Speaker 4: how to approach healing with the doctor's help, and what
Speaker 4: questions to ask and what care do expect?
Speaker 6: Yeah, in every deep drawn breath. The beauty of it
Speaker 6: is that these are people's stories, real stories or actual
Speaker 6: quotes that recorded with an audio device, so I didn't
Speaker 6: make them up. And all the patient's pictures are available,
Speaker 6: including Maya Angelou and some other famous people that I've
Speaker 6: had the blessing of caring for over the years, are online.
Speaker 6: You can see the actual people, so you can identify
Speaker 6: with these people who have taught us. And the main
Speaker 6: message there is that we have to create a relationship.
Speaker 6: This is a healing relationship that should extend over the
Speaker 6: course of somebody's survivorship and we need to recognize that
Speaker 6: it is in that relationship that we can find our
Speaker 6: healing path forward. Chronic illness is very difficult, and so
Speaker 6: there's an entire section at the back of every deep
Speaker 6: drawn breath that helps people approach chronic illness, and I
Speaker 6: hope that that's of use to people.
Speaker 4: What's the hardest part about what you do?
Speaker 6: The hardest part about what I do is knowing that
Speaker 6: at the end of the day, my science will never
Speaker 6: be enough. I love my science and I am a scientist,
Speaker 6: but it will never be enough. I have to infuse
Speaker 6: love and mercy and what I'm doing, and that takes
Speaker 6: a lot out of a healer. But at the end
Speaker 6: of the day, I want that love and science to
Speaker 6: go together, and it's that touch and technology, it's that commendation.
Speaker 6: And I find that earlier in my life I really
Speaker 6: relied almost all on the science, and I got in
Speaker 6: I was walking around with chest pain and some moral
Speaker 6: injury because I was not providing the right type of
Speaker 6: healing combination that I needed to do for my patience.
Speaker 6: So I like to now keep coming back and allow
Speaker 6: a lot of my stulf to dive all the way
Speaker 6: into their lives to try and help last question.
Speaker 4: I always ask a favorite part of your job? Best
Speaker 4: thing about what you do?
Speaker 6: Oh gosh, the best thing about what I do is
Speaker 6: that I get to come into contact with people like you,
Speaker 6: Ali and others who know that we are imperfect, but
Speaker 6: by working together we can find a way forward. And
Speaker 6: it's this community of knowing that I don't know the answer,
Speaker 6: but knowing that if I walk with you, we can
Speaker 6: find it together. That's the best part, is the community
Speaker 6: and the relationship.
Speaker 4: Thank you so much for being on. I was so
Speaker 4: excited to talk. I'm still nervous, even though the interview's done.
Speaker 4: I'm still nervous because you're such a bad at all.
Speaker 6: No, you're amazing, and what you bring to the table
Speaker 6: here is so great because you have trends for other people,
Speaker 6: all these complicated topics. I hope this I hope the
Speaker 6: answers were somewhat useful of people. No.
Speaker 4: Absolutely, this has been really such a privilege to talk
Speaker 4: to you, and I'm gonna keep just trying not to
Speaker 4: get COVID the best I can.
Speaker 6: I'm proud of you and that's a gutsy move. And
Speaker 6: stay in Novid. I'm glad you're protected.
Speaker 4: Still still walking around with those masks in my pocket.
Speaker 8: Baby me too.
Speaker 6: Thanks you on airplanes, you won't catch you on an
Speaker 6: airplane without a mask. I'm like, no, I'm in a tube.
Speaker 6: I'm wearing this thing.
Speaker 4: Yeah. That's like asking me to use a porta potti
Speaker 4: without hand sanitizer. I'm just like, ick, no, no, gross, I.
Speaker 6: Just went to Kuwait in Africa last week, and I
Speaker 6: mean I wore that stucker for fourteen hours ye on
Speaker 6: that plane.
Speaker 4: Yeah, I'm like no. Thanks.
Speaker 6: Yeah.
Speaker 4: So once again, ask wonderful people what you were wondering.
Speaker 4: And thank you so much doctor wes Ee for all
Speaker 4: of the really kind and helpful factual information about this illness.
Speaker 4: Thank you Kyle and Diana for sharing your story. And
Speaker 4: links to all of the places we donated are in
Speaker 4: the show notes a lot with a link to our
Speaker 4: website with more info and links to studies and to
Speaker 4: doctor Eli's book, Every Deep d On Breath. I hope
Speaker 4: these episodes have helped you feel seen and informed. Please
Speaker 4: pass them along to anyone and everyone you know. I
Speaker 4: feel like everyone can benefit from this. We are at
Speaker 4: ologies on Blue Sky and Instagram. I'm at Ali Ward
Speaker 4: on both Again. We have kid friendly episodes called Smologies
Speaker 4: where we get podcasts. You can submit questions for Ologists
Speaker 4: before we even record at Patreon dot com Sashologies. It
Speaker 4: costs a dollar a month to join Ologies. Merch is
Speaker 4: available at ologiesmarch dot com. Thank you so much Aaron
Speaker 4: Talbert for admitting the Ologies podcast Facebook group. Aveline Malik
Speaker 4: makes our professional transcripts. Kelly R. Dwyer works on the website.
Speaker 4: Noel Dilworth is our scheduling producer. Our managing director is
Speaker 4: Susan Hale. Jake Chafy edits and lead editor is of
Speaker 4: course Mercedes Maitland and Maitland Audio Nick Thorburn made the
Speaker 4: theme music. And if you stick around and tell the end,
Speaker 4: you know I tell you a secret. And if you
Speaker 4: listen to the very very end of last week, you'll
Speaker 4: know that I recorded it right before I got in
Speaker 4: the shower to go to the iHeart Podcasting Awards. We
Speaker 4: were nominated for Best Science Podcast, but we were up
Speaker 4: against like some big giants like Science Versus and Star Talk.
Speaker 4: And the result of that is that we won.
Speaker 5: We won.
Speaker 4: We won it. We won iHeartRadio's Best Science Podcast of
Speaker 4: the Year. So that was such a wonderful night and
Speaker 4: I have much more to say about it, but I'm
Speaker 4: out the door right now. I'm leaving on a trip
Speaker 4: for Ireland. I'm going to record a couple episodes over
Speaker 4: the next week. I have a pack of masks in
Speaker 4: my bag. Otherwise I'm not packed. And we were supposed
Speaker 4: to leave thirty six minutes ago. So we'll have a
Speaker 4: fresh new episode for you next week and I'll be
Speaker 4: recording some stuff for you in Ireland. Okay, please stay safe,
Speaker 4: Please be nice to each other, and please rest if
Speaker 4: you need to. Okay, say bye. Pack of dermatology, meology
Speaker 4: or doo zoology, lithology and zechinology, meteorology, old paratology, methology, seriology.
Speaker 6: Will you guys? You you take care of yourself.
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