Speaker 1: Heyl.
Speaker 2: I'm Autumn. I'm a longtime listener, and I am really
Speaker 2: excited to share my story. So when I was eighteen,
Speaker 2: I was hanging out with my boyfriend at the time
Speaker 2: at his house and now was on the last day
Speaker 2: of my period. So I was wearing a side light tampon.
Speaker 2: It was about ten PM and I was at that
Speaker 2: eight hour limit of my tampon. But he did not
Speaker 2: have a trashkin in his bathroom, and I was also
Speaker 2: really scared of his mom, and I did not want
Speaker 2: to venture to the kitchen trash and so I figured
Speaker 2: that I would just change it when I got home.
Speaker 2: My midnight curfew came around, I went home, I changed
Speaker 2: my tampon, then I went to sleep. Welcoup at eight
Speaker 2: am to change my tampon again. But now I was
Speaker 2: feeling a little bit woozy and I had this like
Speaker 2: itchy red palm. Wresh for a bit of contexts on
Speaker 2: this next part. I also have a condition called hereditaria
Speaker 2: and duodema, which can often look and feel like an
Speaker 2: allergic reaction even though it's not. So I figured that
Speaker 2: I might have been having an ha a tack in
Speaker 2: my hands, and so I used a dose of my
Speaker 2: HAE medication. Then I went back to sleep. You could
Speaker 2: equate it to maybe in a non HAE patient, if
Speaker 2: you wake up you feel some allergic discomfort, and then
Speaker 2: you take advantage ellly something. I woke up again at noon,
Speaker 2: as teenagers do on the weekend, and I just felt
Speaker 2: so nauseous, and I was light headed and feverish and
Speaker 2: just overall real critty. I crawled down the stairs with
Speaker 2: a blanket and I laid on the couch to watch TV,
Speaker 2: and I kind of tracked up my symptoms to just
Speaker 2: random illness, and I figured that I'd be better tomorrow.
Speaker 2: I've had this bad track record ever since I was
Speaker 2: little of having these wild and just incredibly harsh bouts
Speaker 2: of strip throat, often bad enough to go to the
Speaker 2: emergency room, and they would happen so suddenly and make
Speaker 2: me so sick that I could just be on Depth's
Speaker 2: doorstep today and then just be fine tomorrow if I
Speaker 2: had AU of course, and I'd also struggled with these
Speaker 2: just seemingly endless infections of staff and strip bacteria on
Speaker 2: my skin, in my ears and in my eyes for
Speaker 2: just about my whole life, and me and my parents
Speaker 2: thought that this illness was just one of those situations,
Speaker 2: or at least the blue because it was January, and
Speaker 2: we really didn't think much of it until my hand
Speaker 2: rash was so bad that I could no longer hold
Speaker 2: my gayor aide, and it really wouldn't matter anyway, because
Speaker 2: I could not keep my gatheror aid down. And it
Speaker 2: got to the point where I vomited and I threw
Speaker 2: up down my front and on the couch and I
Speaker 2: could not even like move to not throw up on myself.
Speaker 2: And that was when we went to the er. It
Speaker 2: was about four PM when we got to the r
Speaker 2: and then about seven PM, which was just eighteen hours
Speaker 2: after removing tampon zero, I was in the ICU with
Speaker 2: a blood pressure at fifty to over twenty eight, a
Speaker 2: scorch and fever and then either racing heart heart rate
Speaker 2: or a slowing heart rate I really cannot remember, and
Speaker 2: then the gradual shutdown of my bone, marrow, kidneys, and lungs,
Speaker 2: and it was obvious I was in septic shock, but
Speaker 2: no one could figure out why. And then in my
Speaker 2: feverish hase, I remembered all of the warnings about toxic
Speaker 2: shock syndrome on tampon boxes, and I told my doctors
Speaker 2: about what had happened with the tampa and the trash can.
Speaker 2: Toxic shock syndrome really wasn't on anyone's radar, and nobody
Speaker 2: working in that hospital had ever actually seen toxic shock
Speaker 2: syndrome in person before. That's what I ended up happening
Speaker 2: five days of hospitalization, my first ever perfect examined CAP.
Speaker 2: There's awful and enough lines and anbiotics take down a horse.
Speaker 2: I was discharged thanks to early intervention, quick thinking, and
Speaker 2: then a hospital staff intent on sliver the mystery. I'm
Speaker 2: still alive today and I'm lucky to have not lost
Speaker 2: any limbs or organs do the tissue death. The worst
Speaker 2: that I personally have in recovery was about a year
Speaker 2: of being immune compromised and having to selute off all
Speaker 2: of the skin for my palms and souls and mucus
Speaker 2: membranes to the cell depth, which is just about the
Speaker 2: grossest mental imas you can muster. But I guess it's
Speaker 2: the price of being alive. And now that that's ten
Speaker 2: years later, I'm really open about menstruation and what we
Speaker 2: can do to prevent TSS and who might be more
Speaker 2: susceptible to contract in TSS, and I love to talk
Speaker 2: about the need for free access to menster products and
Speaker 2: access disposal methods in all bathrooms, public and private. And
Speaker 2: as a person who now works with teens, I love
Speaker 2: putting my experience and advice to use in the hope
Speaker 2: that young people, even if they never have a run
Speaker 2: in with TSS, will not treat menstruation as a taboo topic,
Speaker 2: because I'm living proof on how treating things as taboo
Speaker 2: can just be a little bit hoppy, sometimes.
Speaker 3: Absolutely terrifying.
Speaker 1: Yeah. Yeah, And to be the one who has to
Speaker 1: tell your doctors, by the way, could it be this yet?
Speaker 3: This be toxic shocks? Oh my gosh, I mean it
Speaker 3: just is like yeah. And then especially because I feel
Speaker 3: like there's that sense of I don't want to tell
Speaker 3: someone their like their job or be like, you know,
Speaker 3: I don't want to be like, oh, yeah, I was
Speaker 3: on I was on web md and this is what
Speaker 3: I think. But like it's it's real, right, I have
Speaker 3: to speak up and advocate.
Speaker 1: And yeah, I'm a huge fan of people telling me
Speaker 1: what they found on WebMD. It's very helpful.
Speaker 3: I love that.
Speaker 2: I love that.
Speaker 3: Well, Autumn, thank you so much for sharing your story
Speaker 3: with us.
Speaker 1: Thank you, and we're so glad that you're okay.
Speaker 3: Yes, yes, hi.
Speaker 1: I'm Aaron Welsh and I'm Erin Allman Updike.
Speaker 3: And this is this podcast will kill you.
Speaker 1: Welcome to Toxic Shock.
Speaker 3: Toxic Shock. Yeah, I'm this is I feel like one
Speaker 3: of those I know we'll get so much more into
Speaker 3: the weeds, but I feel like this is one of
Speaker 3: those diseases where awareness around it is so much higher
Speaker 3: than the incidence of it. But it also that means
Speaker 3: there's like it's a double edged sword, right, Like there's
Speaker 3: mean that there's more fear around it, but also we
Speaker 3: can recognize it when we well yeah, okay, that's fair.
Speaker 3: We're more likely to recognize it and it happens.
Speaker 1: Yeah, I have I have so many questions for you,
Speaker 1: Aarin about like how we first saw this and like
Speaker 1: all of the I saw little bits and pieces of
Speaker 1: what happened in the late seventies early eighties, and like
Speaker 1: I I just have so many questions still and I'm
Speaker 1: I'm really excited.
Speaker 3: Do you want me to go first?
Speaker 1: But kind of, but.
Speaker 3: We could give it a go.
Speaker 1: It would be fun on the fly.
Speaker 3: Oh, on the fly. Well, I guess before we get
Speaker 3: into literally any part of this, it's quarantine time. What
Speaker 3: are we drinking this week?
Speaker 1: We're drinking shock tactics. I could hear the pause, like
Speaker 1: is it shocked? What was he just went over there.
Speaker 3: We literally just talked about it. A shock tactic. Shock tactic, Yeah,
Speaker 3: and it's it's we're doing. Honestly, we're doing like a
Speaker 3: make your own quarantini if you want. But the standard
Speaker 3: recipe is a plus syberrita version. So good, so good.
Speaker 3: It's sour cherry syrup, like sour cherries. They're the best.
Speaker 1: Yeah. Aaron before this was like where am I going
Speaker 1: to get sour cherries? Gosh, They're not in season on
Speaker 1: my tree yet, and I'm like, they're frozen.
Speaker 3: Go to this frozen section. I do love, I mean yeah,
Speaker 3: and I feel like my my trees produce enough to
Speaker 3: make one cobbler type.
Speaker 1: Keep getting better. Before we moved from when we moved
Speaker 1: like from Illinois back out to California, the tree that
Speaker 1: year had the best year ever and we had so
Speaker 1: many still in the freezer by the time we moved
Speaker 1: that I made a huge slab pie the dry that
Speaker 1: all that we ate I think we gave something to you.
Speaker 3: Thank you. Yeah, so sour cherries, sour cherry, and then
Speaker 3: you can take the sour cherry syrup, add some club
Speaker 3: soda and a little bit of lime and it's like refreshing, delight.
Speaker 1: So delicious, so delish.
Speaker 3: And we'll post the full recipe for that placed Brita.
Speaker 3: And then you can make your own quarantine on our
Speaker 3: website This Podcast will Kill You dot Com and on
Speaker 3: all of our social media channels. If you're not following us,
Speaker 3: you should. You should also follow exactly right on YouTube
Speaker 3: so you can see the full video of this and
Speaker 3: a lot of our other newer episodes.
Speaker 1: Yeah, quite exciting stuff, it is.
Speaker 2: It is.
Speaker 1: Also you can check out our website if you haven't
Speaker 1: done that already. It's called this Podcast will Kill You
Speaker 1: dot Com and on it you can find such incredible things,
Speaker 1: including merch including all of the sources from all of
Speaker 1: our episodes, links to Bloodmobile who does the music, our
Speaker 1: Goodreads list, a bookshop dot org affiliate account, Patreon page.
Speaker 3: The list goes on, This goes on.
Speaker 1: Check it out. If you haven't already rated, reviewed, and subscribed,
Speaker 1: you can do that. We'd love it.
Speaker 3: Tiered Toxic shock shock syndrome syndrome. Okay, Okay, I'm gonna
Speaker 3: have you go first because I feel like it'll help
Speaker 3: me tell my story better. It's like the way we
Speaker 3: do the way we.
Speaker 1: Do it, yeah, right after a quick break. Toxic shock
Speaker 1: syndrome or TSS is a disease. It's called a syndrome
Speaker 1: because it was like just a collection of signs and
Speaker 1: symptoms before we knew what caused it. But now we
Speaker 1: know exactly what causes it, and it's caused by a
Speaker 1: toxin or rather a group of toxins that are produced
Speaker 1: by two old time friends of the podcast, that is
Speaker 1: Staphylococcus aureus or Streptococcus pyogenies or group bastro. Okay, so Eric, I.
Speaker 4: Was like, I have a question already off the bat
Speaker 4: I thought about as I was putting the stick other
Speaker 4: I was like, I should probably check in with Aaron
Speaker 4: and see if she's doing the history of like staff
Speaker 4: TSS or strap TSS.
Speaker 1: But then I was like, I don't care. I'm going
Speaker 1: to do both.
Speaker 3: Great, Okay, great, I think I'm doing staff TSS.
Speaker 1: That's what I assumed because that is more related to
Speaker 1: like menstrual TSS, which we'll talk in a lot of
Speaker 1: detail about, but we're going to talk about both. So
Speaker 1: there's staff associated toxic shock and then there's strep associated
Speaker 1: toxic shock.
Speaker 3: Okay, real quick, this is just a minor question that
Speaker 3: should we give it to me? It should? Yeah, toxic
Speaker 3: shock it's no longer called toxic shock syndrome because it's
Speaker 3: not a syndrome or.
Speaker 1: Is it totally is still called toxic syndrome. Yeah, yeah, okay, yeah,
Speaker 1: it's just that's how it got its name. And yeah,
Speaker 1: but it's still called that.
Speaker 3: Okay, yeah, Well I thought because you said that, because
Speaker 3: it's it's we know what causes it, we know all
Speaker 3: of this, that it was initially called a syndrome, and
Speaker 3: now now.
Speaker 1: It's just that, like some people who are into semantics
Speaker 1: are like, it's not that accurate anymore.
Speaker 3: But like it's still right, okay, okay, yeah, there are
Speaker 3: more important things to worry about them, right, aren't there? Yeah?
Speaker 1: I think so, like toxic shock, toxic shock syndrome, disease, whatever.
Speaker 1: So toxic shock it's caused by toxins released by staff
Speaker 1: or strap and these are both gram positive really cute
Speaker 1: little ball shaped bacteria and the most famous of the
Speaker 1: two is staff TSS, and that's because that is the
Speaker 1: one that is more strongly associated with menstrel and tampons
Speaker 1: with menstruation and tampons.
Speaker 3: Yeah, you just mean like infamy or do you mean
Speaker 3: like sheer number of cases.
Speaker 1: I mean infamy, not sheer number of cases, as we'll
Speaker 1: get into later. Okay, but we're going to kind of
Speaker 1: talk about all of these because the mechanism is really
Speaker 1: quite similar in all of these instances, whether it's menstrual
Speaker 1: associated toxic shock or non menstrual toxic shock, whether it's
Speaker 1: STAFF or strep that produce that toxin. There are some
Speaker 1: differences in like the kinds of symptoms that we see
Speaker 1: whether it's STAFF or strep. But I'm going to kind
Speaker 1: of just focus on the similarities. Okay, Yeah, So in
Speaker 1: any case, like I said, it really is a kind
Speaker 1: of clinical definition how we find toxic shock, and so
Speaker 1: it's a set of signs and symptoms that we're looking for.
Speaker 1: There's not one diagnostic test that says you have toxic shock.
Speaker 1: So let's go over what those symptoms kind of look like,
Speaker 1: how it manifests, because that's how we get to how
Speaker 1: we diagnose it right. So in toxic shock, people generally
Speaker 1: start with a fever, and this might not be the
Speaker 1: first symptom, but it is a very very common and
Speaker 1: important symptom. And that fever tends to be quite high.
Speaker 1: So we're looking at like one hundred and two fahrenheit
Speaker 1: or higher. That's thirty eight point nine celsius or higher.
Speaker 3: Okay.
Speaker 1: The shock part of it means that there's also hypotension
Speaker 1: or low blood pressure, because that's part of shock. Why
Speaker 1: why does that happen?
Speaker 3: Oh, we'll get there, Okay, Okay, we're just going through
Speaker 3: the symptoms.
Speaker 1: We're going through the symptory. This is how we know
Speaker 1: signs and symptoms. You also, especially in the case of
Speaker 1: staphylococcle toxic shock, we'll see a rash and this tends
Speaker 1: to be like a diffuse kind of splotchy red rash.
Speaker 1: Sometimes it's described as like sunburn like. And then we'll
Speaker 1: also see evidence either laboratory evidence like when we're looking
Speaker 1: at your lab results or symptom evidence of multi organ
Speaker 1: involvement on the way towards organ failure. And so this
Speaker 1: could be involvement of your kidneys, it could be your liver,
Speaker 1: it could be your muscular skeletal system, which we might
Speaker 1: see with like PA or with laboratory findings. It can
Speaker 1: be neurologic manifestations. It can be literally any organ system
Speaker 1: that's affected. And usually to meet the criteria you have
Speaker 1: to have at least two organ systems, like evidence of
Speaker 1: damage and at least two organ systems. Okay, When it's
Speaker 1: streptococcal toxic shock, almost always you will find some kind
Speaker 1: of initial infection, some kind of initial invasive infection like
Speaker 1: a necrotizing fasciitis or a cellulitis, okay, or evidence of
Speaker 1: a bloodstream infection, so growing this streptococcal bacteria in your bloodstream. Yeah,
Speaker 1: with staff you might not. Very often you do not
Speaker 1: see an initial infection like a cellulitis or something that
Speaker 1: kind of precipitates this. And with staff, only about five
Speaker 1: percent of blood cultures are positive for staff aureus in
Speaker 1: toxic shock, compared to like sixty to eighty percent of
Speaker 1: blood cultures being positive and strepto cockle toxic shock. Okay, okay,
Speaker 1: does that make cop Yes? Yeah.
Speaker 3: A couple questions okay, sorry. Number one timeline of these
Speaker 3: of these signs and symptoms, like does it start with
Speaker 3: a fever, Like, at what point does it go from
Speaker 3: you know, not so great feeling bad rash to shock,
Speaker 3: multi organ involvement.
Speaker 1: It's such a good question. I don't there's not a
Speaker 1: good I don't have a good number for you, okay,
Speaker 1: in part because it's going to differ, you know, if
Speaker 1: we're talking strept to coco versus stapholcockle. Right, Like, if
Speaker 1: it's an infection, how quickly does it go downhill? It
Speaker 1: really depends on the infection with strepto cockle toxic shock,
Speaker 1: which very often might not have you know, evidence of
Speaker 1: an infection necessarily because there's not necessarily evidence of infection,
Speaker 1: we don't have this like traditional incubation period where you like, oh,
Speaker 1: might have this amount of time or how long does
Speaker 1: it take? But what I will say is that once
Speaker 1: this has started to develop, so once you see this
Speaker 1: evidence of like fever and the blood pressure starting to
Speaker 1: go down, this process can happen very rapidly, so you
Speaker 1: can see signs of organ damage and rapidly worsening clinical
Speaker 1: status within like twenty four to forty eight hours.
Speaker 3: Okay, that's very fast. Interrating. Another question then, so related
Speaker 3: to the blood cultures, Yeah, Ken, you also screen for
Speaker 3: the toxins themselves, Like, is that the way that question
Speaker 3: look for this?
Speaker 1: You? So you could if you if you had the
Speaker 1: capability to do that. So if you had like the
Speaker 1: right PCR based testing or whatever it is, you might
Speaker 1: you might a not have that capacity, or you might
Speaker 1: not think too because if you can't, like, if you
Speaker 1: haven't detected any bacteria, then how do you know what
Speaker 1: toxins to look for and that kind of thing. So, yeah,
Speaker 1: so I don't have a great answer for that. But
Speaker 1: what is really important, because we don't have a great
Speaker 1: test for it, is that we do have to show
Speaker 1: that there's no other infection, right, So part of the definition,
Speaker 1: especially for staphylococcle toxic shock, is that you have to
Speaker 1: show that there's no rocky Mountain spotted fever, there's no liptosperosis,
Speaker 1: it's not actually measles, it's not meningitis. Like you have
Speaker 1: to rule out all others before you can say that
Speaker 1: this is toxic shock. But here's where it gets even
Speaker 1: more interesting, especially when we talk later about the epidemiology
Speaker 1: part of the case definitions in the literature and per
Speaker 1: the CDC for stapholoccle toxic shock, is that one to
Speaker 1: two weeks after this initial presentation, people develop a new
Speaker 1: kind of rash where the palms and soles of your
Speaker 1: hands and feet just kind of the skin rubs off.
Speaker 1: It's called the desquamating rash. But that means that that
Speaker 1: definition can only be met retrospectively, right, right, And so
Speaker 1: it's a complicating factor and probably leads to part of
Speaker 1: why we likely see an underreporting of toxic shock because
Speaker 1: these are like kind of messy criteria, right, and a
Speaker 1: lot of other things could potentially fit into this, and
Speaker 1: so we don't have great numbers. That's a spoiler alert
Speaker 1: for the future.
Speaker 3: Say, yeah, hey, shocking, Wow, I really didn't mean to
Speaker 3: do that. Okay. So staph oreus is often a like
Speaker 3: a part of our biome, like it's part of our
Speaker 3: our microbiome is strip piogenies.
Speaker 1: Oh, it can be definitely, it can be Okay, I
Speaker 1: can't get yeah, in like your throat or your nose
Speaker 1: or something like that.
Speaker 3: It can be interesting.
Speaker 1: Staff is definitely like it is our friends. Staff lives
Speaker 1: on probably almost all of us. Yeah, so how does
Speaker 1: this actually happen? How do you get from like, I
Speaker 1: don't know, staff just living on you to toxic shock, Well,
Speaker 1: let me tell you. Uh, it can happen either from
Speaker 1: an infection.
Speaker 2: Right.
Speaker 1: Often we see toxic shock, like I said, with streptococcus,
Speaker 1: it's you know, a necrotizing fasciitis or some kind of
Speaker 1: infection that leads to an invasive infection with staff. It's
Speaker 1: often seen in the post operative setting. So it could
Speaker 1: be like a wound or an incision after an operation
Speaker 1: because staff is just everywhere. If it happens to get
Speaker 1: in there and multiply, or if you happen to be colonized,
Speaker 1: let's say in the vagina, and then you have an
Speaker 1: overgrowth of this particular strain of these bacteria that produced
Speaker 1: a particular kind of toxin. And there's multiple different versions
Speaker 1: of this toxin. The one that is again most infamous,
Speaker 1: and you'll talk about later, Aaron, Well, I don't know
Speaker 1: if you'll talk about the toxin, but the most infamous
Speaker 1: cause of toxic shock is caused by a toxin called
Speaker 1: t SST one, a toxic shock syndrome toxin really clever, straightforward.
Speaker 1: But all of these toxins that cause toxic shock are
Speaker 1: called super antigens. And we talked about this idea of
Speaker 1: a superanergen. Actually, in our scarlet fever episode, which you
Speaker 1: may remember, scarlet fever is caused by strut piogeny, right,
Speaker 1: a specific strain of strup piogenies. So superanigens are proteins.
Speaker 1: These toxins are proteins that bacteria can make and excrete
Speaker 1: that when they get into our body trigger an overwhelming
Speaker 1: immune response, this idea of like a cytokine storm that
Speaker 1: we've talked about here and there on the podcast. And
Speaker 1: this overwhelming immune response itself, in combination with direct damage
Speaker 1: that these toxins are causing, just like ripping through our cells,
Speaker 1: is what ends up causing all of the symptoms that
Speaker 1: we see in association with toxic shock. The fevers, leaky
Speaker 1: blood vessels that lead to hypotension, dropping blood pressure, all
Speaker 1: of the damage that we see to our organs rather
Speaker 1: whether that's damaged directly to the tissues of the organs
Speaker 1: themselves or damage to the blood vessels that are feeding
Speaker 1: those organs, right, and all of this is what results
Speaker 1: in the damage that we see and the shock part
Speaker 1: of toxic shock syndrome.
Speaker 3: Okay, And so it's not really about okay, like the
Speaker 3: toxin itself is not acting in this way. It's our
Speaker 3: immune system responding to this toxin, and so it doesn't
Speaker 3: have to be like like I'm just trying to figure
Speaker 3: out why this toxin exists, and I'm assuming it's like
Speaker 3: is it competition with other microbes? Like what's going on?
Speaker 3: Do you know the answer?
Speaker 1: I don't, but it's such an interesting questionnaire in Yeah,
Speaker 1: I didn't look into that, like the evolutionary history or
Speaker 1: anything of these types of toxin, right, but it's really
Speaker 1: really really weird.
Speaker 3: I can.
Speaker 1: Do you want a little more detail, Yeah, I do.
Speaker 3: I would love a little more detail. Thank you.
Speaker 1: It's really really interesting and weird how these toxins work
Speaker 1: and the question of like why do they exist? It's
Speaker 1: so so interesting because here's what they basically do. We're
Speaker 1: going to step back a minute to talk about like
Speaker 1: what is a typical immune response.
Speaker 4: Right.
Speaker 1: We get exposed to various toxins or antigens like all
Speaker 1: the time, right, And in our typical immune response, we
Speaker 1: have these cells that these cells that go around and
Speaker 1: find these antigens, right, antigen presenting cells. They usually process
Speaker 1: them in some way. And we've talked a lot about
Speaker 1: our immune response and this podcast before and we've kind
Speaker 1: of glossed over this part because it's just what they do, right.
Speaker 1: They kind of take them in and they like break
Speaker 1: them up and they're like beep it abop, let's find
Speaker 1: the part. And then they present those antigens to our
Speaker 1: T cells, who then decide what kind of response to
Speaker 1: engage in. Do we do inflammatory stuff, do we do
Speaker 1: antibody stuff? Whatever? Okay, So these anigen presenting cells are
Speaker 1: like a mediator. They're the ones who take all the
Speaker 1: anigens and they decide, like which parts do we show
Speaker 1: to T cells? Like how are we gonna start this process?
Speaker 3: Right, they're making these decisions exactly.
Speaker 1: They're organizing, sorting through things. What super anigens are doing
Speaker 1: is bypassing this process super anigens, they themselves go directly
Speaker 1: to the T cells, grab a hold of these T
Speaker 1: cells and then grab a hold of these anigen presenting
Speaker 1: cells and bind them together, like bridge them, and they're like,
Speaker 1: let's get this party started. And that causes this massive
Speaker 1: immune response. And I was trying, Aaron, because you're so
Speaker 1: good at analogies.
Speaker 3: Noy, the number of times that we've been like this
Speaker 3: analogy doesn't need to exist. This analogy has been taken
Speaker 3: too far.
Speaker 1: You know, but I love that. Okay, So I try
Speaker 1: so hard to come up with analogies for this. Here's
Speaker 1: the best one that I could come up with. It's
Speaker 1: so bad, Okay. Super indigens are like the loudest guy
Speaker 1: at the party, like the one that you didn't really
Speaker 1: mean to invite or like didn't actually want to come in,
Speaker 1: made it straight to the DJ booth somehow, and then
Speaker 1: like opened all the doors and everyone's just rushing in.
Speaker 1: The bouncers didn't catch him something like that's my analogy.
Speaker 3: Oh my god.
Speaker 2: Okay.
Speaker 3: So it's like it's like those high school parties, you know,
Speaker 3: or it's like just a few of us, and then,
Speaker 3: unbeknownst to the host, her friends have invited all of
Speaker 3: their whole school brothers other friends and yeah, and they
Speaker 3: just run through the doors.
Speaker 1: Okay, just run through the doors.
Speaker 3: Wow.
Speaker 1: So it's this overwhelming, way too expansive immune response.
Speaker 3: Do you I'm stressed about it because those those scenes
Speaker 3: and movies always stressed me out because I'm like, you're
Speaker 3: gonna hurt the house, Like what about this? What's killing
Speaker 3: on the carpet?
Speaker 1: Like every teen movie you've ever seen, but.
Speaker 3: I was not jol in high school. If you can't imagine.
Speaker 1: I think I went to my first high school party
Speaker 1: when I was definitely in college.
Speaker 3: So I was being like, are you using coasters? Do
Speaker 3: you need a coaster? I've got I've got a little
Speaker 3: basket of them. Wasn't even my house, but I was
Speaker 3: right the wood.
Speaker 1: Yeah.
Speaker 3: Anyway, so I can see why super antigens would be
Speaker 3: a real pain, a.
Speaker 1: Real pain, right, And to give you more of like
Speaker 1: a numeric sense of this, to see how much these
Speaker 1: superanigens are overdoing it. Regular antigens like just your typical
Speaker 1: ones activate about point zero one percent of our T
Speaker 1: cells on average.
Speaker 3: Okay, point zero one percent, A very.
Speaker 1: Small proportion of our T cells are being activated by
Speaker 1: any given antigen or exposed to super anigens are activating
Speaker 1: five to thirty percent of our T cells.
Speaker 3: But now, okay, what what scarlet fever another super antigen?
Speaker 3: What about what makes a super antigen a super anti
Speaker 3: Like obviously we know the characteristics of it, right, but like,
Speaker 3: what is there a range? Is there a spectrum of
Speaker 3: antigenicity from not very I mean obviously, but to super antigen? Why? Why?
Speaker 3: I guess it's just the.
Speaker 1: Question that's the QUESTIONNAIREIC. It's a great question, well formulated,
Speaker 1: Thank you so much.
Speaker 3: Yeah.
Speaker 1: I don't know though.
Speaker 3: Fascinating, Okay, isn't it? Yeah?
Speaker 1: So yeah, So I mean that that is toxic shock,
Speaker 1: and that is you know, how it happens and what
Speaker 1: like what is going on in our bodies in terms
Speaker 1: of the path of physiology.
Speaker 3: Okay, So question about the two different strip and staff
Speaker 3: give it toxic shock. Is there a difference in case
Speaker 3: fatality rate? Is there a difference in treatment and management?
Speaker 3: And is there a difference in susceptibility again in the.
Speaker 1: Future to it such fun question, barren case fatality definitely
Speaker 1: let me scroll in minotes. Case fatality rates for streptococcle
Speaker 1: toxic shock are very depressing, anywhere from like thirty to
Speaker 1: sixty percent. Okay, so very very very deadly. And remember
Speaker 1: that streptococcle toxic shock is very almost always associated with
Speaker 1: some kind of invasive infection. So the treatment requires that
Speaker 1: you identify what that infection is. You try and get
Speaker 1: like source control if you can. So that means if
Speaker 1: there's like a necrotizing fasci i itis, you have to
Speaker 1: debreed all of that dead tissue that is completely overrun
Speaker 1: with bacteria, and then you need to also treat the
Speaker 1: toxic shock, which I'll talk about in just a second.
Speaker 1: With staffholococcle toxic shock, the case fatality rates really can vary,
Speaker 1: and most of what I saw estimated that the majority
Speaker 1: of staphloccle toxic shock cases are actually not menstrual, and
Speaker 1: we'll talk a little bit more about what that means,
Speaker 1: but they're actually more likely to be something like a
Speaker 1: wound related or a post operative infection. Something like sixty
Speaker 1: percent of staffaccle toxic shock is from that rather than
Speaker 1: from menstrual sources. The fatality rates, I've seen a real
Speaker 1: range anywhere between like eight and twenty percent. But most
Speaker 1: places also say that menstrual toxic shock is very rare
Speaker 1: to cause fatalities. And I don't know if that's just
Speaker 1: based on like current data or if that has been
Speaker 1: true historically as well, but that is what all of
Speaker 1: the literature that I read suggested.
Speaker 3: Interesting.
Speaker 1: Yes, okay, it's very interesting. And is that because of
Speaker 1: you know, like demographics, because people who are getting made
Speaker 1: wound infections or operative infections are maybe like older, or
Speaker 1: have more comorbidities or.
Speaker 3: Something comprise in some way.
Speaker 1: Or is it because that they also have this infection
Speaker 1: that you're dealing with, where most of the time with
Speaker 1: menstrual associated toxic shock, there's no infection. So like ten
Speaker 1: to forty percent of menstruating people just have staff areas
Speaker 1: in their vagina at any given time, And the amount
Speaker 1: and quantity of different bacteria really changes during your menstrual
Speaker 1: cycle because of changes in the pH and things like
Speaker 1: that with menstrual blood and all that kind of stuff.
Speaker 1: And I said that it's only certain strains of these
Speaker 1: bacteria that produce this toxin. It's estimated that like eighteen
Speaker 1: to twenty five percent of strains of staff orius across
Speaker 1: the board have the gene that encodes for this toxin.
Speaker 1: But even then, not all of those bacteria, even if
Speaker 1: they have that gene, are going to make the toxin
Speaker 1: because the environment also has to be right to induce
Speaker 1: them to actually make that toxin.
Speaker 3: Right, Interesting, Okay, so they have It's not like these
Speaker 3: are just going around producing this toxin all of the time. No,
Speaker 3: it's not dependent upon and do we know what those
Speaker 3: environmental conditions are?
Speaker 1: We do erin so glad you asked, so one of
Speaker 1: the things that we know is that it has to
Speaker 1: be an environment that is aerobic. They need oxygen. Staff
Speaker 1: Ores can grow with or without oxygen, but in order
Speaker 1: to produce this toxin in strains that can produce this toxin,
Speaker 1: they need the presence of oxygen.
Speaker 3: Okay.
Speaker 1: They also need like a warm but not too warm
Speaker 1: of temperature. They need like a certain pH range, not
Speaker 1: too high, not too low, things like that. And so
Speaker 1: conditions have to be right for this bacteria to grow
Speaker 1: to a degree and then to have the toxin, like
Speaker 1: the gene to make this toxin in, and then to
Speaker 1: actually be induced to produce this toxin before somebody can
Speaker 1: even be exposed to potentially get toxic shock. And then
Speaker 1: you asked, Aaron, what about recurrent infections? This is such
Speaker 1: a good question because we're talking about an anigen and
Speaker 1: we usually make antibodies against antigens, right, uh huh. Something
Speaker 1: like eighty percent of people have antibodies against these types
Speaker 1: of superanigens, especially when we're looking at the common one
Speaker 1: TSST one. Most people, like if you just surveyed, a
Speaker 1: random group of people have antibodies against this, meaning that
Speaker 1: we're probably exposed to it at low levels and we're
Speaker 1: making antibodies against it.
Speaker 3: Okay.
Speaker 1: When we're thinking about who is it that ends up
Speaker 1: getting toxic shock, it is not a simple question.
Speaker 2: No.
Speaker 1: It is not like, oh, if you have a tampon
Speaker 1: in for too long. No, it is not anything near straightforward,
Speaker 1: because there has to be the correct environment. One to
Speaker 1: five percent of people are thought to be colonized in
Speaker 1: the vagina with strains that can potentially produce this toxin.
Speaker 3: Hmm.
Speaker 1: Okay, so one to five percent of people we're talking
Speaker 1: about menstrul Focus on that for a second. Then you
Speaker 1: have to have an environment that is conducive, so you
Speaker 1: need to have enough oxygen. Now, menstrual blood blood contains oxygen,
Speaker 1: so that can increase the oxygenation level of the environment
Speaker 1: and potentially help to shift those bacteria into producing the toxin.
Speaker 3: Yep.
Speaker 1: Tampons, as you'll talk about aaron, are strongly associated with
Speaker 1: especially the emergence of toxic shock as a syndrome. And
Speaker 1: the thought on part of the reason why is that
Speaker 1: because these are absorbent materials, they contain oxygen.
Speaker 3: I mean, there's talk a little bit about it, but
Speaker 3: like it's just like this is the part where I
Speaker 3: I still have found so much disagreement, not not even disagreement,
Speaker 3: but lack of clarity on and these are the characteristics.
Speaker 3: This is how step you know, step one, step two,
Speaker 3: step three? Is it that? Is it the tampons? Is
Speaker 3: it the blood? Is it like? Is it a micro abrasions?
Speaker 3: Is it leaving tampons in too long? Is it taking
Speaker 3: them out? It's like all these different questions.
Speaker 1: And Aaron, it's all of these different things. And that's
Speaker 1: the point. It's not one thing. Is it is not
Speaker 1: one thing? It is an individual risk factor. Are you
Speaker 1: colonized with this? It's an individual risk factor. Do you
Speaker 1: already have enough neutralizing antibodies or not? Do you have
Speaker 1: some kind of immuno compromise where you're not producing as
Speaker 1: many antibodies for some reason or another. Have you been
Speaker 1: exposed to this at lower levels and developed antibodies or not?
Speaker 1: What is the oxygenation level in your vagina and in
Speaker 1: your menstrual blood? What kinds of like how heavy is
Speaker 1: your flow? Are there microabrasions that make it easier for
Speaker 1: either bacteria or the toxin to get into like pass
Speaker 1: through that mecause membrane get into your bloodstream? How much
Speaker 1: oxygen is being contained in the tampon versus in the
Speaker 1: menstrual cup, because, by the way, there have been at
Speaker 1: least two cases reported from menstrual cup use. So I
Speaker 1: feel like, especially when we're thinking about menstrual toxic shock,
Speaker 1: what I took away from all of this, and we'll
Speaker 1: talk more about it in the like looking at the
Speaker 1: numbers of all of this and how rare this disease is,
Speaker 1: is that we need a lot more research when it
Speaker 1: comes to reproductive health and like the best menstrual products
Speaker 1: and all of this stuff, but we cannot weaponize tampon
Speaker 1: saying that like tampons are the problem here. Well, yeah,
Speaker 1: it's complicated. It's complicated. It's complicated, but it is not
Speaker 1: like the tampons are not introducing any bacteria that we
Speaker 1: know of. These are bacteria that are already present in
Speaker 1: the environment, and we have a lot of data that
Speaker 1: we do not have nearly as much data as I
Speaker 1: feel like we should. But I think it is in
Speaker 1: part because of how rare this disease is and how
Speaker 1: many complicated factors there are that go into this right
Speaker 1: like it is, it is just not as straightforward, and
Speaker 1: so I feel like the takeaway that I got is
Speaker 1: not like this is evil, this is good, but like, no,
Speaker 1: we need more information on this. And we also can't
Speaker 1: because one of the papers I read suggested as a
Speaker 1: way to prevent it to not use feminine hygiene products erin,
Speaker 1: and I was.
Speaker 3: Like, horry, what I mean? That is not a very
Speaker 3: well thought out solution. No, to put it mildly.
Speaker 1: To put it mildly, okay, But yes, I feel like
Speaker 1: I got a little bit off track and probably out
Speaker 1: of order there.
Speaker 3: No, no, okay. So but to maybe get us back
Speaker 3: on track, treatment, treatment, what do we do?
Speaker 1: Yeah, so I'm source control. That's going to be important.
Speaker 1: So that means taking care of any infection that we
Speaker 1: know of, if it is a mentual toxic shock and
Speaker 1: there is a mental device in place, like a cup
Speaker 1: or a tampon or whatever, removing that. And then the
Speaker 1: most important thing is using antibiotics that are going to
Speaker 1: have ability to prevent more toxin production. And so that
Speaker 1: usually means clindamycin because that helps block protein synthesis and
Speaker 1: so it helps block production of the toxin. But then
Speaker 1: it's also a lot of like supportive care. Right, it's
Speaker 1: fluid resuscitation, it's blood pressure support. It's broad spectrum antibiotics
Speaker 1: because a lot of times you can't you don't know
Speaker 1: what it is yet. All of this takes a long
Speaker 1: time to figure.
Speaker 3: Out act fast. Yeah.
Speaker 1: Interestingly, there's some evidence for the use of ivig okay,
Speaker 1: which is like IV combined immunoglobulin from like a bunch
Speaker 1: of different sources. It's basically pooled antibodies and giving people
Speaker 1: really high doses of a ton of random antibodies. The
Speaker 1: thought is that that will help like bind to this
Speaker 1: toxin and inactivate it. There's not super strong data for it,
Speaker 1: but it's in part because of the difficulties of doing
Speaker 1: these kinds of clinical trials on very small sample sizes.
Speaker 1: But there's some data that it might be helpful, especially
Speaker 1: for streptococcle more than staff of a cockle, just because
Speaker 1: that's the data that we have, Okay, Yeah, and that's
Speaker 1: mostly it aarin okay.
Speaker 3: Yeah.
Speaker 1: And you asked if you can get it again, you can,
Speaker 1: which makes it even that much more interesting because you
Speaker 1: can you can get it again even under different conditions.
Speaker 1: People who have had menstrual toxic shock, especially in the
Speaker 1: context of tampon use, there has been reports that people
Speaker 1: have had recurrences without tampon use, which again points to
Speaker 1: the fact that it's not just the tampons, not that
Speaker 1: it's much more complicated thing than that, right, But yes.
Speaker 3: Yeah, I think I have more questions, but I'm gonna
Speaker 3: they're just gonna have to come to me, Like I
Speaker 3: just there's so much that I know.
Speaker 1: Yeah, well, I have questions too, Erin because like obviously
Speaker 1: a lot of the papers that I write, I couldn't
Speaker 1: not say, like, well, we first found out about this.
Speaker 3: I mean, I'm so literally just going to be talking
Speaker 3: about tampons.
Speaker 1: So I cannot wait to talk about tampons.
Speaker 3: I can't wait to tell you. Let's take a quick break, Aaron,
Speaker 3: do you remember when you first learned about toxic shock syndrome?
Speaker 1: Ooh, good question. No. No, I just feel like in
Speaker 1: my memory and this is not I'm sure not correct,
Speaker 1: but I just feel like I have always known about.
Speaker 3: You were born with the knowledge.
Speaker 1: No, no, no, it was like tampon's toxic shock, Like
Speaker 1: that was a connection that existed in my memory from
Speaker 1: the first time that I can remember using a tampon.
Speaker 1: And I don't know if I actually learned it that
Speaker 1: first time or if it was like later knowledge.
Speaker 3: I mean that's similar to me. Like I don't know
Speaker 3: if it was in like health class or something like that,
Speaker 3: but I'm.
Speaker 1: Sure it wasn't in health class for me probably, Yeah,
Speaker 1: just speaking personally, Yeah.
Speaker 3: I mean I get Yeah, I don't know, but I do.
Speaker 3: I do have this this memory of being in my
Speaker 3: house in northern Kentucky, like getting my first period and
Speaker 3: reading that little instruction pamphlet that came in the box
Speaker 3: and tampons, and like in one little corner was this
Speaker 3: dire warning about this deadly disease called toxic shock syndrome
Speaker 3: that you could get from using tampons. Yeah, And I
Speaker 3: feel like that made such an indelible mark on me.
Speaker 3: For years after, I was like worried but also a
Speaker 3: little confused, like what was it using it again? Like
Speaker 3: all these questions, Am I going to get it because
Speaker 3: I used a tampon for too long or because I
Speaker 3: took it out too soon? Like what is going wrong
Speaker 3: giving me toxic shock?
Speaker 1: Yes?
Speaker 3: Should I be using tampons at all? Is that gonna
Speaker 3: help me?
Speaker 1: Like?
Speaker 3: Right, clearly, I think that the takeaway that I had
Speaker 3: was if I got toxic shock, it was my fault
Speaker 3: because I didn't know the answers, and I wasn't sure
Speaker 3: where to get them or who to ask.
Speaker 1: Oh my gosh, Erin, that's so heartbreaking to imagine little
Speaker 1: like baby Erin being like, well, if I die, it's
Speaker 1: on me.
Speaker 3: I mean, it was just like you're if you use
Speaker 3: because it's like use the right amount, use the right absorbency.
Speaker 1: How the heck are you supposed to know, especially when
Speaker 1: you're actually eighteen years old, when you're sixteen years old,
Speaker 1: if you have irregular periods, like, there are so many
Speaker 1: different things where it's like but I felt like, okay, well,
Speaker 1: this is just like part of.
Speaker 3: What it means to be a woman, right, Like I
Speaker 3: have my period, now I have to deal with toxic shock. Oh.
Speaker 3: I mean, it wasn't like something in life. This is right,
Speaker 3: But I just sort of felt like, okay, like this
Speaker 3: is this is the knowledge, this is part of it, Okay.
Speaker 3: And I feel like after reading for this episode, it
Speaker 3: seems to me that the history of toxic shock syndrome
Speaker 3: reveals how the silence and the shame surrounding menstruation and
Speaker 3: menstrual products. It presented a challenge both in identifying the
Speaker 3: source of this deadly infection, as well as raising awareness
Speaker 3: at a time when words like tampon, menstruation, and period
Speaker 3: were still taboo words.
Speaker 1: I cannot.
Speaker 3: And I think it also demonstrates how the blame has
Speaker 3: been shifted away from tampon manufacturers who did not properly evaluate.
Speaker 3: This is very true to menstruating people.
Speaker 1: Yeah, I can't wait. I can't wait to hear about
Speaker 1: this because I learned so much inefertently about how little
Speaker 1: testing or standardization existed. But prior to this.
Speaker 3: Oh yeah, oh my god, I mean did any Yeah? Yeah,
Speaker 3: and so I really only knew the bare bones of
Speaker 3: this history before researching for this episode, and there is
Speaker 3: so much more to it. Like, like you said, I'm
Speaker 3: I'm I'm excited. Let's start at the beginning. Okay, okay, okay, okay.
Speaker 3: September twenty fifth, nineteen seventy seven. Okay, Denver, Colorado, Oh
Speaker 3: I know. A girl fifteen years old was rushed to
Speaker 3: the children's hospital quote delirious and in shock after a
Speaker 3: two day history of worsening pharyngitis and vaginitis associated with
Speaker 3: vomiting and watery diarrhea. On admission, her temperature was forty
Speaker 3: point nine degrees celsius, which is one of five point
Speaker 3: six degrees fahrenheit, and her blood pressure was sixty six
Speaker 3: over zero And what yeah that's what it said. I
Speaker 3: read it like eight times.
Speaker 1: Oh my god. Yeah.
Speaker 3: She was described as having red, bloodshot eyes, a hugely
Speaker 3: swollen face and limbs, a red scaly rash covering her
Speaker 3: entire body, tender abdomen, pure you lin, I can't, I
Speaker 3: cannot say that word erin.
Speaker 1: It's a tough word.
Speaker 3: Okay, we know what I'm saying. Vaginal discharge and severe
Speaker 3: prolonged shock. She was described as quote unquote confused and aggressive. Like, no,
Speaker 3: wonder right.
Speaker 1: I'm sorry that you're going to put the word aggressive
Speaker 1: in there.
Speaker 3: I know, I know, confused and aggressive, right, but like
Speaker 3: just putting yourself on her shoes. Imagine how terrifying can.
Speaker 1: You not just describe her as dying?
Speaker 2: Right?
Speaker 3: She's acting a little aggressive? Oh, that is all aggressive.
Speaker 3: Her doctor's pumped her full of ivy fluids, antibiotics, steroids,
Speaker 3: heprin digitalis, and put her on a ventilator. Unfortunately, after
Speaker 3: eight days of intensive care, she made a complete recovery,
Speaker 3: except for some necrosis in a few of her toes,
Speaker 3: which ultimately had to be amputated, and the fact that
Speaker 3: her entire skin had started to slush off, but she
Speaker 3: was stable and after seventeen days in the hospital she
Speaker 3: was discharged.
Speaker 1: My goodness. Yeah.
Speaker 3: Her doctors were stumped. They had run tests for Rocky
Speaker 3: Mountain spotted fever, leptosporosis, scarlet fever, and other viral rash
Speaker 3: causing diseases, but nothing had lit up. There was something
Speaker 3: familiar about this case, though, because over the previous couple
Speaker 3: of years there had been a few more just like
Speaker 3: it in children aged eight to seventeen seven total from
Speaker 3: nineteen seventy five to nineteen seventy seven, including one death
Speaker 3: in Colorado or in Colorado in the hot Yeah, that
Speaker 3: had been like I think, I don't know if it
Speaker 3: was like the hospital system or that hospital or like
Speaker 3: within the state. Yeah, yeah, Okay. The doctors that had
Speaker 3: been working on these cases couldn't find anything that linked them.
Speaker 3: There was no food, no drug overdose, no exposure to
Speaker 3: an animal or a chemical. But the clinical picture was
Speaker 3: similar and resembled some of the syndromes caused by staff
Speaker 3: oreas infections like scalded skin syndrome and some staff food
Speaker 3: poisoning cases. Swab cultures confirmed that a toxin producing staff
Speaker 3: orius may be the culprit, and so, in combination with
Speaker 3: shock being a unifying future of the syndrome, the Denver
Speaker 3: doctors named the new condition toxic shock syndrome in a
Speaker 3: nineteen seventy eight paper. Okay, yeah, was it actually new?
Speaker 3: Was this brand new? I mean probably not. There were
Speaker 3: a few other cases that people found in the medical
Speaker 3: literature from as far back as the early nineteen hundreds,
Speaker 3: and there was some other like ancient plague that someone proposed.
Speaker 3: It doesn't really seem to track in my eyes, but
Speaker 3: one research one researcher suggested that it might be like
Speaker 3: a new toxin producing strain, sort of like how we
Speaker 3: talked about with scarlet fever against piogenies went from being
Speaker 3: like super super deadly to them not like just massive.
Speaker 1: Shifts in shifts in what strains strains? Yeah, yeah, yeah.
Speaker 3: And so regardless of whether this was do or not,
Speaker 3: the nineteen seventy eight paper, which is by Todd at
Speaker 3: all if you want to read it, was a critical
Speaker 3: milestone for toxic shock syndrome. Besides giving it a name,
Speaker 3: they also set out this clear clinical picture and described
Speaker 3: a general patient population, and so other physicians who happened
Speaker 3: to read this article began to connect the dots in
Speaker 3: their own patients, starting with physicians in Wisconsin and then Minnesota,
Speaker 3: and then gaining enough momentum that the CDC got involved
Speaker 3: with what was rapidly becoming a public health crisis. The
Speaker 3: first Morbidity Immortality Weekly report on that featured toxic shock
Speaker 3: syndrome was published in May nineteen eighty. With these additional
Speaker 3: reported cases from these other states, researchers zeroed in on
Speaker 3: a toxin producing strain of staphoius. Right, like, that seemed
Speaker 3: to be behind it all, behind these cases, right, but
Speaker 3: the root of transmission was still unclear. The CDC initiated
Speaker 3: a study to find out how people were getting sick
Speaker 3: with this condition, and they identified about fifty women who
Speaker 3: had toxic shock syndrome and fifty women who did not
Speaker 3: matched by sex, geographic area, age, and were often friends
Speaker 3: of the cases. So they were like, okay, what is
Speaker 3: different about that these two individuals. Let's match them these
Speaker 3: pairs love it?
Speaker 1: Case control.
Speaker 3: There we go, and then using phone surveys importantly conducted
Speaker 3: by a woman EIS Officer Catherine Shans, because I think
Speaker 3: that was a really crucial part of getting people to
Speaker 3: actually these women to feel like they could open up,
Speaker 3: which actually taught their experience. Yeah, they asked a million,
Speaker 3: carefully awarded questions about their lives, including menstruation and use
Speaker 3: of menstrual products, and a tentative pattern began to emerge.
Speaker 3: The people developing toxic shock syndrome were young, otherwise healthy
Speaker 3: women who were menstruating at the time that symptoms developed,
Speaker 3: and who used tampons. And I say tentative to describe
Speaker 3: the pattern because it wasn't really a smoking gun. There
Speaker 3: were plenty of tampon users who did not have toxic shock.
Speaker 3: But the devil, of course, would be in the details,
Speaker 3: because tampons are not all created equal. Go to your
Speaker 3: local grocery store and check out the menstrual products aisle.
Speaker 3: You haven't lately, she got shelves. I mean I haven't
Speaker 3: looked lately because I haven't had a period in years
Speaker 3: now because the miracle of birth control pill for me.
Speaker 3: But it's shelves upon shelves of different brands, different absorbencies,
Speaker 3: different materials. I mean, the branding, the variety really is
Speaker 3: something else. The sense I cannot, I mean I cannot. Yeah,
Speaker 3: And the landscape in the late nineteen seventies when toxic
Speaker 3: shock began popping up was roughly similar to this. So
Speaker 3: why then, like what was happening in the late nineteen
Speaker 3: seventies that led to suddenly the syndrome being recognized on
Speaker 3: a nation on a national scale. Tell me, okay, here's
Speaker 3: where we have to get into some tampon nuance. Yes,
Speaker 3: in the decades since the first commercially available tampon in
Speaker 3: nineteen thirty six, just tampacs tampon technol had undergone some
Speaker 3: pretty big changes, very gradually at first, since the demand
Speaker 3: for tampons remained pretty low until the nineteen sixties. Interesting,
Speaker 3: I mean, well, you couldn't advertise easily, so word of
Speaker 3: mouth was the main way that people learned about them.
Speaker 3: And then there was a great deal of handwringing over
Speaker 3: how tampons were a threat to young women's purity and
Speaker 3: like it's going to ruin them right. But eventually though,
Speaker 3: the benefits that tampons provided, like being able to swim
Speaker 3: or dance or go on, you know, being work long shifts,
Speaker 3: all of these things won out over these anxieties and
Speaker 3: by the nineteen sixties, tampons were seen as a symbol
Speaker 3: of bodily freedom of women's liberation, and as the consumer
Speaker 3: base for tampons grew, so did the companies making them,
Speaker 3: and slightly different versions of tampons appeared on the shelves,
Speaker 3: like each of them trying to edge out the competition, right,
Speaker 3: like they each have. Oh, this one's slightly different. This
Speaker 3: one has a better name, this one is better catchphrase,
Speaker 3: this one is more observant, this one is whatever. All
Speaker 3: these different things the applicator. The first tampons made were
Speaker 3: one hundred percent cotton, but these newer tampons began to
Speaker 3: incorporate other fibers to increase absorbency, including synthetic fibers and
Speaker 3: materials developed in the mid twentieth century, things like polyester
Speaker 3: viscos rayon, which is derived from wood cellulose and processed
Speaker 3: with other chemicals, polyacrylate, which you can also find as
Speaker 3: an absorbent and disposable baby diapers.
Speaker 1: Okay, that makes sense.
Speaker 3: Carboxy methyl cellulose, which comes from plant cellulose and shifts
Speaker 3: from powder to gel when introduced to liquids, and even
Speaker 3: today it's next to impossible to find tampons made of
Speaker 3: one hundred percent cotton alone, like, very very very few
Speaker 3: do use those or usee just cotton Procter and gambles.
Speaker 3: Rely tampon which took I know you right, no cane.
Speaker 1: I hated to hear all about Rely.
Speaker 3: This is the tampon that took center stage in the
Speaker 3: toxic shock syndrome crisis of the nineteen eighties. Rely was
Speaker 3: composed of quote, a polyester sheath, compressed polyurethane foam cubes,
Speaker 3: and carboxy methyl cellulose end quote. And I just want
Speaker 3: to like make a point here to say that just
Speaker 3: because chemical names of things are long and like sound complicated,
Speaker 3: does not mean that they are inherently bad. Right. But
Speaker 3: the issue, and then I'll get into this a little
Speaker 3: bit more, is just like the testing of this, right, right,
Speaker 3: because I feel very much like, oh, well, those don't
Speaker 3: sound like natural words, and it's like that doesn't it.
Speaker 1: Yeah? And it's also like, just because something is so
Speaker 1: called natural or is cotton rather than rayon does also
Speaker 1: does not mean that it is safer for you, right,
Speaker 1: So something being a synthetic fiber does not make it
Speaker 1: inherently less or inherently more dangerous.
Speaker 3: Across the board. I mean, maybe research will show that
Speaker 3: it does. Maybe research will show that it does not.
Speaker 3: But yeah, yeah, we just the sweeping generalizations I think,
Speaker 3: and just like the idea that like, oh that has
Speaker 3: a lot of big words. Yeah, yes, yeah that being said,
Speaker 3: yeah really was going.
Speaker 1: Yeah.
Speaker 3: A big part of this so rely was considered and
Speaker 3: advertised as a super absorbent tampon with lightweight materials able
Speaker 3: to hold fifty to fifteen hundred times their weight in water.
Speaker 1: Wow. Yeah sounds like it'll dry you out real good.
Speaker 3: Well yeah it did, I know.
Speaker 1: Yeah, that's a problem. That's probably is supposed to be
Speaker 1: moist anyways, keep going.
Speaker 3: Anyways, So with all of these new tampons coming onto
Speaker 3: the market, coming onto the grocery store shelves in the
Speaker 3: late nineteen seventies, what was that approval process like, tell
Speaker 3: me to be honest, close to non existence, Yes I knew,
Speaker 3: I mean yeah, until nineteen seventy six, tampons and sanitary
Speaker 3: pads were cloudsified as cosmetics. Wow, which and so they
Speaker 3: were technically under the jurisdiction of the FDA, But there
Speaker 3: really wasn't any formalized review process for devices like those
Speaker 3: that were worn or implanted in the body or used
Speaker 3: to diagnose diseases. Wow, no official approval for these was necessary? Yeah,
Speaker 3: I mean in this this is a case I think
Speaker 3: of like technology moving faster than our ability to understand
Speaker 3: the implications of it. Yeah.
Speaker 1: Yeah.
Speaker 3: And over the nineteen seventies it became apparent that, like,
Speaker 3: we need to do a better job. This was a
Speaker 3: mistake to not have any sort official approval.
Speaker 1: Uh huh.
Speaker 3: Serious issues with pacemakers, IUDs like the Dalcon shield, lens implants,
Speaker 3: and other medical devices had left people with severe injuries
Speaker 3: and pursuing lawsuits. So in nineteen seventy six, the Medical
Speaker 3: Device Amendments was added to the Federal Drug the Federal Food,
Speaker 3: Drug and Cosmetic Act. And it's worth getting a bit
Speaker 3: into the nitty gritty here because of the bearing that
Speaker 3: this would have on the emerging issue of toxic shock syndrome.
Speaker 3: So under this amendment, devices were put into one of
Speaker 3: three categories based on their perceived risk. Class one was
Speaker 3: almost no risk, like bedpans, nitrial examination gloves, that sort
Speaker 3: of thing. Class two devices carried a bit more potential
Speaker 3: for risk, so like tampons and hearing aids, and required
Speaker 3: more testing, labeling, and monitoring. And then there was Class three.
Speaker 3: This was the riskiest bunch, like artificial hearts or other
Speaker 3: experimental devices. But when this amendment was introduced, what do
Speaker 3: you do about the existing devices like tampons? Right, most
Speaker 3: of these pre amendment devices were just grandfathered into the
Speaker 3: system and no disruption to sales or production happened. Any
Speaker 3: new tampons I'm talking about tampons specifically here could be
Speaker 3: ushered through this approval process pretty quickly. If the company
Speaker 3: could demonstrate that they were quote unquote substantially equivalent to
Speaker 3: free Amendment devices, that's a problem. It is a problem.
Speaker 3: And one of these substantially equivalent tampons was Procter and
Speaker 3: Gamble's Rely tampon. Okay, Rely it even absorbs the worry. Yeah, yeah,
Speaker 3: ya ya. This was the tagline on the sample box
Speaker 3: containing four Rely tampons that was shipped out in mass
Speaker 3: across the US to millions of homes from the mid
Speaker 3: nineteen seventies to nineteen eighty. It's just as like you
Speaker 3: get free tampons in the Mad tampon.
Speaker 1: Try it out.
Speaker 3: Maybe you like this super absorbent. The materials that were
Speaker 3: used in Reli tampons had been used in other tampons
Speaker 3: on the market, just not the precise configuration, right, But
Speaker 3: how could anyone know that?
Speaker 1: It cannot?
Speaker 3: Manufacturers are not required to disclose the exact composition of
Speaker 3: tampons like materials, fragrances, et cetera, because it qualifies as
Speaker 3: a trade secret.
Speaker 1: Yeah, yeah, the trade secret, trade secrets.
Speaker 3: I mean, I have a lot of thoughts on that.
Speaker 3: In some recent news about certain quote unquote unextinct animals anyway.
Speaker 1: Oh my gosh, we should do an episode dire Wolves.
Speaker 3: I mean, I can't say it without using quotes. But
Speaker 3: because anyway, overall back to toxic shock. As far as I
Speaker 3: could tell, until the late nineteen seventies, though tampons had
Speaker 3: not been associated with any significant health issues or outbreaks
Speaker 3: since they had hit the shelves decades before. Like there,
Speaker 3: it really doesn't seem to be like something. It was
Speaker 3: like more maybe very sporadic types of you know, individual issues,
Speaker 3: not outbreaks. So the spate of toxic shock syndrome cases
Speaker 3: with the beginning in the late nineteen seventies would reconfigure
Speaker 3: the perception of these devices as inert and completely benign.
Speaker 3: What had changed. That was the question that the CDC
Speaker 3: sought to answer. The June twenty seventh, nineteen eighty MMWR
Speaker 3: described the link between toxic shock and tampons. Of the
Speaker 3: one hundred and five cases since September nineteen seventy eight,
Speaker 3: ninety six percent occurred in women aged twelve to fifty
Speaker 3: two during their mental periods, Okay, ninety six percent, and
Speaker 3: the case fatality rate was fifteen percent.
Speaker 1: Wow. See that's so high, so high, That's.
Speaker 3: What I was asking, And you were like, oh, that's
Speaker 3: pretty low, Like fifteen percent is very high.
Speaker 1: Yeah, And that's why I said, I don't know all
Speaker 1: the numbers I saw, I think were from current data,
Speaker 1: right right, So yeah, brands of salt exactly.
Speaker 3: Yeah. In one case control study where they matched someone
Speaker 3: who had toxic shock with another person who didn't like
Speaker 3: similar age, so it's your economic statist, geographicalcation, et cetera,
Speaker 3: they found that one hundred percent of the cases used tampons,
Speaker 3: compared to eighty six percent of the controls. Vaginal cultures
Speaker 3: of those with toxic shock before starting antibiotics showed ninety
Speaker 3: four percent positivity rate for staff aureus okay, and no
Speaker 3: similar cultures had been done for controls because yeah, yeah, retrospective,
Speaker 3: yeah right, But in general, the prevalence of the bacterium
Speaker 3: in the vagina and cervix ranges from two to fifteen percent,
Speaker 3: is what I saw in this book.
Speaker 1: Yeah, well, because it depends too on It can be
Speaker 1: up to forty percent when it's just staff orious. But
Speaker 1: not all of them are going to produce it. Hoxsent's right,
Speaker 1: ver very yis.
Speaker 3: Follow up studies sought to get a handle on which
Speaker 3: tampons and why, and what they found is that across
Speaker 3: the board, tampons with higher absorbancies were associated with toxic
Speaker 3: shock syndrome. Several brands were implicated, but the clear winner,
Speaker 3: if you could call it that, I guess, was rely,
Speaker 3: with seventy one percent of those who had contracted toxic
Speaker 3: shock using the brand.
Speaker 1: Wow, I didn't realize it was that high.
Speaker 3: Seventy one Well, yeah, and it's hard to say how
Speaker 3: much of it was realized popularity, because it had become
Speaker 3: very popular over a very short time, especially with all
Speaker 3: those mail out you know, sample looxes.
Speaker 1: Like what percentage of those eighty six percent of people
Speaker 1: who didn't get toxic shock also were using relyed tampons.
Speaker 3: Twenty six percent of those control group the brands. Yeah, yeah,
Speaker 3: but it wasn't just down to relized popularity. The risks
Speaker 3: seemed to be higher for that specific tampon compared to
Speaker 3: other tampon brands, and researchers suspected that it had something
Speaker 3: to do with the composition of the tampon itself. So,
Speaker 3: like I mentioned, all of the individual components of the
Speaker 3: relied tampon had been used in other tampons previously, but
Speaker 3: not in combination, right, And there seemed to be something
Speaker 3: specific about the blend of polyester and carboxy methyl cellulose
Speaker 3: that encouraged bacterial growth. As you can imagine, this was
Speaker 3: not welcome news to Practor and Gamble, who were busy
Speaker 3: conducting their own studies that naturally were intended to cast
Speaker 3: doubt on what the CDC had found. They even tried
Speaker 3: to strong arm the CDC into giving them the names
Speaker 3: and contact information of the women who had been included
Speaker 3: in the first study. Excuse me, yeah, because they were like,
Speaker 3: the CDC is inflating cases of toxic shock, Like, we
Speaker 3: don't think that these women actually had toxic shocks, So
Speaker 3: we're going to have to go to their doctors and
Speaker 3: look in their medical records.
Speaker 1: Absolutely not Yeah.
Speaker 3: The CDC was like, I'm sorry, no, no, no, So
Speaker 3: instead the Proctor and Gamble tracked down women who had
Speaker 3: called the company and complained that the tampons had made
Speaker 3: them sick, which, like there were a lot of compliants
Speaker 3: about Rely specifically, their intention with tracking these women down
Speaker 3: was to try to undermine the CDC study, saying that
Speaker 3: the cases of toxic shock they included weren't really toxic shock,
Speaker 3: and so Rely has you know, nothing going on. This
Speaker 3: didn't work, and in response then they were like, well,
Speaker 3: we'll try something out else. They were like, let's do
Speaker 3: this this contradictory pr approach where they touted Rely as
Speaker 3: you know, these outstanding tampons, super unique and they give
Speaker 3: you what no other tampon does. Also at the same
Speaker 3: time by being like, but like, Rely is just another tampon,
Speaker 3: it's not any different than these other tampons, are not
Speaker 3: any more dangerous than the other tampons out there. So
Speaker 3: it's like they're saying, really.
Speaker 1: The best were so different. We're just like everyone.
Speaker 3: We're just like everyone else, exactly exactly. But at a
Speaker 3: certain point they realized that there was nothing that could
Speaker 3: be done, and the CDC data was pretty damning, and
Speaker 3: so in September nineteen eighty they realized the inevitable and
Speaker 3: they tried to get ahead of like the bad PR storm,
Speaker 3: and so they voluntarily pulled Rely from the shelves and
Speaker 3: issued a recall.
Speaker 1: I don't think I realized that it was a voluntary
Speaker 1: so they didn't actually get banned.
Speaker 3: No, it was a voluntary recall. And this included like
Speaker 3: print and television campaigns, and there's I think that, like
Speaker 3: there's more to that story in terms of like I
Speaker 3: think that they saw the writing on the wall.
Speaker 1: Well totally, but I just like thought that they also
Speaker 1: actually got banned.
Speaker 3: No, okay, cool? Well, and then yeah, because this there
Speaker 3: were implications to this, right, because on the one hand,
Speaker 3: this is great, this is what needed to happen. There
Speaker 3: was a clear association with RELY specifically and toxic shock syndrome,
Speaker 3: so this meant that this potentially dangerous product was no
Speaker 3: longer going to be available for purchase. But on the
Speaker 3: other hand, this focus on RELY tampons only provided a
Speaker 3: false sense of security once they were removed from the shelves,
Speaker 3: and it obscured the nuance in the relationship between tampons
Speaker 3: and toxic shock syndrome. Yes, it's hard to overstate the
Speaker 3: media frenzy surrounding toxic shock syndrome. In nineteen eighty it
Speaker 3: was the third leading news story in the nation, behind
Speaker 3: only the Iranian hostage situation and the presidential election.
Speaker 1: Wow, toxic shock, toxic shock.
Speaker 3: It was everywhere. Yeah, and this was overall, like we
Speaker 3: talked about a good a good thing in terms of
Speaker 3: raising awareness. The CDC estimated that tampon use dropped from
Speaker 3: seventy percent to fifty five percent by the end of
Speaker 3: nineteen eighty because of toxic shock syndrome.
Speaker 1: Wow.
Speaker 3: But because the research was so new, misinformation was everywhere,
Speaker 3: with journalists and news anchors reporting all kinds of unsubstantiated
Speaker 3: hypotheses about the nature of this infection, things like, rely,
Speaker 3: tampons cause toxic shock syndrome. Period, that's it.
Speaker 1: Ye.
Speaker 3: Toxic shock syndrome is a variant of scarlet fever. Tampons
Speaker 3: cause abrasions or ulcerations that serve as a root of
Speaker 3: entry for the bacterium. Tampons act as a plug that
Speaker 3: allows for bacterial growth, leaving tampons in too long causes
Speaker 3: toxic shock, Removing tampons too soon causes toxic shock. I mean,
Speaker 3: like just so many there was no clear, coherent message, right,
Speaker 3: And part of it is like we discussed that because
Speaker 3: it is a very nuanced thing. But I think another
Speaker 3: part is because there was such fear and anxiety about
Speaker 3: like we need to solve this, and so we need
Speaker 3: to report this as like we need to have a
Speaker 3: clear message to get out to the public. Rely, tampons
Speaker 3: cause toxic shock.
Speaker 1: So that's that's the message. Thing, that's the.
Speaker 3: Message, or tampon's cause toxic shock or taking them out
Speaker 3: too soon, you know, like all of these different things.
Speaker 3: And then you have some older male news acres that
Speaker 3: refuse to say the words tampon or menstrual cycle on
Speaker 3: the air. So what did they say? They just didn't
Speaker 3: report on it, or they made somebody else do it, right, Yeah,
Speaker 3: but the rest of them ran with the story. The
Speaker 3: mixed messaging and extensive airtime given to guesswork both contributed
Speaker 3: to the fears that surrounding toxic shock syndrome. I'm surprised
Speaker 3: I haven't stumbled more over toxic shock syndrome to stay
Speaker 3: over and over again, TSS I might maybe I'll switch
Speaker 3: to that. Yeah, But by also so, you're contributing to
Speaker 3: the fears and then also shifting blame to the consumer. Right,
Speaker 3: That's the thing.
Speaker 1: That's the thing I think erin and I think that
Speaker 1: that still happens today, even in the talk of like, well,
Speaker 1: did are you using the right absorbances? Are you using
Speaker 1: it into long?
Speaker 2: Yes?
Speaker 1: Blah blah blah, And I'm like, did you not buy
Speaker 1: the organic ones?
Speaker 2: Right?
Speaker 1: I'm sorry what?
Speaker 2: Yeah?
Speaker 3: Yeah, Because that's the thing is that the removal of
Speaker 3: RELY tampons didn't mean the removal of the threat of
Speaker 3: toxic shock syndrome.
Speaker 1: Yeah.
Speaker 3: And in fact, one report found that between January and
Speaker 3: September of nineteen eighty, which is when Rely was still
Speaker 3: on the market, fifty cases of TSS were reported in Minnesota,
Speaker 3: forty five percent associated with Rely. So it's fifty cases
Speaker 3: between that those months, and in a similar period of
Speaker 3: time after Rely had been pulled, there were fifty nine cases. Yeah,
Speaker 3: mostly associated with other super absorbent tampon brands. But now
Speaker 3: that there was no single brand to blame, right, no scapegoat,
Speaker 3: no scapegoat, the responsibility to prevent the condition fell entirely
Speaker 3: to the consumer, with the logic following that if someone
Speaker 3: developed TSS, it was because they weren't using tampons properly.
Speaker 1: You didn't read the instruction, you.
Speaker 3: Didn't read the instructions. And on top of finally standardizing
Speaker 3: what Junior, Regular, super and super plus actually meant, which
Speaker 3: happened in nineteen eighty nine, Aaron, I.
Speaker 1: Want to do a whole episode on the Tampon Task Force. Oh, yes,
Speaker 1: the Tampon Task Force, Yes, and the Syngina. I learned
Speaker 1: so much.
Speaker 3: I know, I know there is I just it seems
Speaker 3: like there was it took so long to get anything
Speaker 3: so long.
Speaker 1: Yeah, it took so long. It's unfathomable how it died
Speaker 1: so long. And how then even after all that work,
Speaker 1: people are still like, yeah, I'm just going to use
Speaker 1: saline still.
Speaker 3: Yes, I know, I know, I know all of that. Yeah,
Speaker 3: there's there's so much there. I recommend the book at
Speaker 3: the end of this, but yeah, but so Yeah, they
Speaker 3: standardized absorbencies and then the FDA had also issued guidelines
Speaker 3: for warnings to be included on the tampon box or
Speaker 3: in an insert inside the box, but the initial warnings
Speaker 3: were very vague. Attention. Tampons are associated with toxic shock syndrome.
Speaker 3: TSS is a rare but serious disease that may cause death.
Speaker 3: Read and save the enclosed information. Wow, no detail on symptoms. No, So,
Speaker 3: like you're just like, there's this deadly disease, right, we don't.
Speaker 1: Know what it looks like. Is it from the tampon
Speaker 1: or is what are I looking for? How do you
Speaker 1: know if I have it?
Speaker 3: Yeah, no information on how tampons were associated, even though
Speaker 3: at that point it had been uncovered through research that
Speaker 3: it was likely that super absorbent tampons created, like you said,
Speaker 3: this more aerobic environment for staph rias to multiply, and
Speaker 3: frequent changing created even more more aerobic conditions. Oh. Interesting,
Speaker 3: that's what some of the research said. But like you said,
Speaker 3: its nuance, there's more, yeah, more factors at play.
Speaker 2: Yeah.
Speaker 3: But even that messaging wasn't simple enough to be reported
Speaker 3: by major media outlets, and so the issue continued to
Speaker 3: be one of individual responsibility rather than consumer protection. Women
Speaker 3: were told to monitor their own bodies for signs of
Speaker 3: this deadly disease, rather than manufacturers being forced to reevaluate
Speaker 3: their product and improve it to protect the health of
Speaker 3: their consumers if there was an association between whatever component,
Speaker 3: whatever material, and an increase in aerobic environment or whatever
Speaker 3: it was. And yet, as Sera Vostrel, who's the author
Speaker 3: of Toxic Shock of Social History points out just the
Speaker 3: book that I read for this, things could have been
Speaker 3: much worse. If the Toxic shock public health crisis had
Speaker 3: happened a year later, which would have been the first
Speaker 3: of the Reagan presidency, there wouldn't have been nearly as
Speaker 3: many women in the administration to advocate for women's health,
Speaker 3: women like doctor Catherine Shans, the eis officer at the
Speaker 3: CDC during the time who led the TSS task force. Wow,
Speaker 3: that could have led to decreased awareness, a slower change
Speaker 3: to manufacturing guidelines, and even less attention to the lack
Speaker 3: of transparency about tampon production. Since the height of the
Speaker 3: toxic shock syndrome crisis in the late nineteen seventies and
Speaker 3: early nineteen eighties, incidence has declined, thanks in large part
Speaker 3: two from what I can tell, rely being pulled materials
Speaker 3: like polycrylate, polyestrophoam, and carboxy methyl cellulose being discontinued in
Speaker 3: tampon's absorbency being standardized and amazing advocacy and awareness work.
Speaker 3: Updated labeling requirements as of twenty seventeen have boxes prominently
Speaker 3: display quote attention. Tampons are associated with toxic shock syndromes.
Speaker 3: TSS is a rare but serious disease that may cause death.
Speaker 3: Read and save the enclosed information. That enclosed information must
Speaker 3: include symptoms and estimates of incidents, advises to use minimum absorbencies,
Speaker 3: and declares that risk can be avoided altogether by not
Speaker 3: using tampons and alternating tampons with pads, which is not true.
Speaker 1: Risk can be avoided altogether.
Speaker 3: Apparently that is what That is what I've read. Yeah, great, Yeah,
Speaker 3: that's why I read that the enclosed information has to say. Okay,
Speaker 3: despite the fact that it's been over forty five years
Speaker 3: since this story broke, there is still confusion I feel
Speaker 3: about tampons and toxic shock, about toxic shock overall, at
Speaker 3: both the scientific and consumer levels. You know, how the
Speaker 3: two related, How to reduce risk and what safer alternatives exist?
Speaker 3: Can we make them? Do they exist? Given that more
Speaker 3: than ten percent of women in the US are menstruating
Speaker 3: at any given time, Oh, I love that statistic. Yeah,
Speaker 3: this is not Okay, yeah, that we don't know the
Speaker 3: answers to these Yeah. Research into women's reproductive health is
Speaker 3: continually underfunded and deprioritized, and the shame that surrounded that
Speaker 3: surrounds menstruation keeps many women from talking about these issues
Speaker 3: or feeling like they are justified in demanding that things change.
Speaker 3: So erin tell me are things changing? Do we know
Speaker 3: more stuff?
Speaker 2: Now?
Speaker 1: I'm not going to be able to answer that question, really,
Speaker 1: but I can tell you about what we do know.
Speaker 3: I love it.
Speaker 1: Okay, right after this break, So let's just talk numbers
Speaker 1: for a quick second. Okay, this is so. Toxic shock syndrome,
Speaker 1: staphloccle and non staphlococcle is a reportable disease in the US,
Speaker 1: and that's how they're classified staphococal non staphloccleaxick shock. Since
Speaker 1: nineteen eighty three, staphylococcle toxic shock has been notifiable, and
Speaker 1: since nineteen ninety five, streptoccle toxic shock or non stapho
Speaker 1: cockle has been notifiable. Global numbers pretty much impossible for
Speaker 1: me to find. I don't have them, but this is
Speaker 1: Both of these diseases are quite rare, and the numbers
Speaker 1: in terms of the prevalence or the incidents each year
Speaker 1: really really really varied depending on what paper that I read.
Speaker 1: Most of them seem to come to the conclusion of
Speaker 1: around one ish case per one hundred thousand people per year. Okay,
Speaker 1: but when I say they vary, I mean like, there
Speaker 1: was a paper from twenty eighteen that used UK biobank data,
Speaker 1: and in Europe and the UK, these are not notifiable diseases,
Speaker 1: so the data is even more sparse. But looking at
Speaker 1: like biobank data, they estimated an incidence of point zero
Speaker 1: seven cases of toxic shock per one hundred thousand, which
Speaker 1: is really really really low.
Speaker 3: Huh.
Speaker 1: Most of the US data estimates between point five and
Speaker 1: one per one hundred thousand, though I've seen some that
Speaker 1: say up to two per one hundred thousand cases per year.
Speaker 1: When it comes to strip tocccle, because most of that
Speaker 1: is for staffococcle toxic shock, it's even more all over
Speaker 1: the place in terms of like what the numbers are
Speaker 1: the estimates are. But it is estimated that some somewhere
Speaker 1: in the range of like ten to twenty percent of
Speaker 1: people who have have an invasive group a strep infection
Speaker 1: will go on to develop toxic shock, and so estimates
Speaker 1: also range between like one and five per one hundred thousand. Okay,
Speaker 1: but you'll be happy to know that because I was
Speaker 1: unsatisfied with all of the numbers that I was finding,
Speaker 1: and because we're not not quite erin yes, we're Aaron mathing, okay,
Speaker 1: aerin ish math. I went, this is a notifiable disease
Speaker 1: in the US. So if you didn't know this, you
Speaker 1: can go directly to the CDC where they have a
Speaker 1: National Notifiable Disease Survey, and they have an interactive tool
Speaker 1: that can tell you that from I know me too.
Speaker 1: From twenty sixteen to twenty twenty two, that's the most
Speaker 1: recent timeframe that they had, there were two thousand, one
Speaker 1: hundred and forty four cases of streptococcle toxic shock and
Speaker 1: two hundred and seventeen cases of non streptococle or staffocockle
Speaker 1: toxic shock that we're reported.
Speaker 3: Interesting the difference between magnitude between the two, right, I.
Speaker 1: Mean, streptoccal infections are like quite still rampant, and so
Speaker 1: ten to twenty percent of them are developing toxic shock.
Speaker 1: So if we look then if we air in math
Speaker 1: that a little bit, there's a range in years, but
Speaker 1: one hundred and forty five to four hundred and sixteen
Speaker 1: cases per year was the range for streptococle toxic shock
Speaker 1: in those different years, and then between fifteen and forty
Speaker 1: four cases per year of staphflccle toxic shock in the
Speaker 1: whole entire us. That's what gets reported. And this is
Speaker 1: a reportable disease. So these numbers should be accurate in
Speaker 1: terms of what is identified. And so this is where
Speaker 1: we then have to remember that the like the case
Speaker 1: definitions that we use to identify these cases are imperfect, right,
Speaker 1: and so these are probably underestimates even though they are
Speaker 1: accurate reported numbers, right, because these CDC criteria, and they
Speaker 1: do say this on this CDC website, they're like, you
Speaker 1: shouldn't use this as a clinical diagnosis, Like this isn't
Speaker 1: what you should be using at the bedside to decide
Speaker 1: am I calling this TSS or not? Because this is
Speaker 1: what we're using from a research perspective, and that's a
Speaker 1: little different.
Speaker 3: Right, Interesting should they be different?
Speaker 1: I mean they have to be in part because of
Speaker 1: this the fact that like the probable case definition, like
Speaker 1: you can't you can't do a full case definition without
Speaker 1: the one to two weeks later having this sluffing rash.
Speaker 1: You're not going to have that in the setting, right, right, right?
Speaker 1: So yeah, so there is a little bit of variability there,
Speaker 1: and so these criteria will will likely inevitably result in
Speaker 1: some degree of underreporting. Because of that, a lot of
Speaker 1: people are likely lost to follow up, and so you
Speaker 1: might not get the records on did they end up
Speaker 1: developing a rash? Can we confirm that that's what that was?
Speaker 2: Or not?
Speaker 1: Right, Like, don't get me started on our lack of
Speaker 1: centralized medical records. So how can you go back and
Speaker 1: find that information? It's hard, Yes, So the good news
Speaker 1: is overall it is very very rare. Both stapflococcle, especially
Speaker 1: staphfloccle toxic shock, as well as strupture cockle toxic shock
Speaker 1: are both rare diseases, likely underreported, but still very rare.
Speaker 1: And we talked already about the kind of mortality rates
Speaker 1: and things like that. Those haven't changed from the data
Speaker 1: that I found in recent years, at least when it
Speaker 1: comes to the questions that you asked Aaron about, like
Speaker 1: where are we going from here?
Speaker 3: What else have we learned, what's what's good? What change?
Speaker 3: What change has happened.
Speaker 1: I don't know, Aaron, if we've come up with any
Speaker 1: changes since the Tampon task Force of the nineteen eighties.
Speaker 1: Isn't that depressing?
Speaker 3: It is? It is?
Speaker 1: It's so depressing, and I I, yeah, So I don't
Speaker 1: have any I don't have any new news in terms
Speaker 1: of what do we know about tampons and these relationships
Speaker 1: besides what we've talked about already. H all of the
Speaker 1: like across the board, the recommendations from CDC, from FDA,
Speaker 1: like based on all the epidemiological evidence that we have,
Speaker 1: and it's all epidemiological. And then there's some you know,
Speaker 1: studies that have looked at like the composition of this
Speaker 1: tampon versus that tampon. Is there a difference in lab
Speaker 1: settings of how much bacteria that you can grow and
Speaker 1: that kind of a thing. Yeah, and that's you're really perfect, right?
Speaker 3: Does that translate to human exactly?
Speaker 1: H And like who's funding those studies? I don't know.
Speaker 1: Most of what I saw did not suggest huge differences
Speaker 1: between the tampons that exist today, the tampons that are
Speaker 1: on the market today, regardless of their composition in just
Speaker 1: in a laboratory setting, how much bacteria are they growing, right,
Speaker 1: which again points to that it's not it's not just
Speaker 1: the tampons themselves, it's this interaction between the tampons and
Speaker 1: the environment. The recommendations across the board are to use,
Speaker 1: like you said, the lowest absorbency that you can, which
Speaker 1: at least now they're standardized.
Speaker 3: I mean, I guess yeah to some degree. Still, how
Speaker 3: the heck do you like?
Speaker 1: Yeah? Yeah, yeah, Well, also because I always think I
Speaker 1: used to think about this a lot when I used
Speaker 1: to use tampons, Like, what is six grams of menstrual blood?
Speaker 3: I don't know, no idea, no glue, It's just a
Speaker 3: little blue liquid.
Speaker 1: Like, oh, yes, that's what it is, what it looks like.
Speaker 1: So yeah, but that that is the recommendation to change
Speaker 1: them at least every six to eight hours and not
Speaker 1: go longer than that. I didn't know that you weren't
Speaker 1: supposed to use them overnight growing up all the time
Speaker 1: all the time.
Speaker 3: Did Yeah?
Speaker 1: But I mean again, because this is so rare, Like
Speaker 1: I I really like Aaron, the way that you went
Speaker 1: through all of the history of this and kind of
Speaker 1: emphasize the fact that, like we need to hold accountable
Speaker 1: the correct groups, right and it is not an individual's
Speaker 1: job to make sure that they don't get it.
Speaker 3: It's like, at the very least, I think that what
Speaker 3: it shows is just and I know that there are
Speaker 3: people working on this. And I'm not saying that there's
Speaker 3: no one working on this, that there's no effort being,
Speaker 3: you know, no interest, no effort, no awareness, but like
Speaker 3: the fact that we don't have some of tools maybe
Speaker 3: to be like who is likely who has antibodies at
Speaker 3: high enough levels? What are the screening protocols? Like how
Speaker 3: can we better get them to do better? Yes? How
Speaker 3: can we do better? Yes?
Speaker 1: Yeah, I And I do think that that's an interesting arena,
Speaker 1: is like, and it's hard because of how rare it is, right,
Speaker 1: So like, where's the funding for it? Because people don't
Speaker 1: care as much? Where is the like high kind of
Speaker 1: clinical suspicion to think, is there a test that do
Speaker 1: I have a test that I can run? How do
Speaker 1: I run that test on? What population? Should I be
Speaker 1: running that test? When should I be thinking about it?
Speaker 1: When should I not? And those kinds of things. So
Speaker 1: it's all like they're it needs to be a lot
Speaker 1: more done. I didn't find any updates on it, and
Speaker 1: maybe I missed it. So if you know of things,
Speaker 1: let us know.
Speaker 3: Reach out.
Speaker 1: Yeah, but if you want to know more, who sources
Speaker 1: papers and sources for you, Yeah, we do.
Speaker 3: I have some papers, but I would say again, I'm
Speaker 3: just going to shout out that book Toxic Shocks Toxic Shock,
Speaker 3: a Social History by Shara Vostrel.
Speaker 1: Love it great. I had so many papers for this, Aaron.
Speaker 1: Let me tell you some of my favorite ones. Okay,
Speaker 1: from the Lancet twenty nineteen or sorry, the Lancet Infectious
Speaker 1: Disease Is twenty nineteen by Burger at All. There was
Speaker 1: Menstrual Toxic Shock Syndrome Case Report and Systematic Review of
Speaker 1: the literature. Such an interesting case report in there, too,
Speaker 1: really highlights how much we don't know and how we
Speaker 1: likely underdiagnose it. There was a really very sick book
Speaker 1: that I read just one chapter of called the Palgrave
Speaker 1: Handbook of Critical Menstruation Studies, and the chapter was called
Speaker 1: Toxic Shock Syndrome and Tampons. The Birth of a Movement
Speaker 1: and a Research Agenda. So that was an interesting I
Speaker 1: really liked it. But I also want to shout I
Speaker 1: had a bunch more, like you know, research papers and things,
Speaker 1: but I also wanted to give a shout out to
Speaker 1: a Washington Post article from twenty sixteen by someone's last
Speaker 1: name was Cowart because I didn't write their first name.
Speaker 1: That was called women are still getting toxic shock syndrome
Speaker 1: and no one quite knows why. It just as a
Speaker 1: really it's kind of like this podcast, but in written form,
Speaker 1: it was a really great overview. They went into the history,
Speaker 1: They went into like way more detail on the biology
Speaker 1: than I see in a lot of you know, non
Speaker 1: your media. Yeah, so it was a really great, like
Speaker 1: very overview of it. So I wanted to give that
Speaker 1: one a shout out. But we have so many more
Speaker 1: sources on our website. This podcast would kill you dot Com,
Speaker 1: all of them from this episode in every one of
Speaker 1: our episodes.
Speaker 3: Thank you so much again to Autumn for sharing your
Speaker 3: story with us. We we appreciate it just we mean
Speaker 3: more than we can say.
Speaker 1: It really does mean so much to us, So thank you.
Speaker 3: Yeah.
Speaker 1: Thank you also to Bloodmobile, who provides the music for
Speaker 1: this episode and every single one of our episodes.
Speaker 3: Thank you to Tom and Leanna and Pete and Brent
Speaker 3: and everyone else who at exactly right, who does so
Speaker 3: much to help us with this podcast.
Speaker 1: We really love it. It's fun. Thank you to you for
Speaker 1: listening and watching. Yeah, I'm embarrassed by that face. We
Speaker 1: really like it.
Speaker 3: I liked it. I like it.
Speaker 1: Thank you so much for being with us through this.
Speaker 1: I hope you liked this episode.
Speaker 3: Yeah yeah, let us know, let us know what else
Speaker 3: you want to hear, And as always, a special thank
Speaker 3: you to our patrons. We appreciate your support so very much.
Speaker 1: Yes, thank you well.
Speaker 3: Until next time, wash your hands.
Speaker 1: You feel the animals.
Speaker 2: Bum bum bum bum