Ep 177 Toxic Shock Syndrome: A shock to the system

Transcript

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Speaker 30 Hey y'all, I'm Autumn. I'm a longtime listener and I am really excited to share my story.
So when I was 18, I was hanging out with my boyfriend at the time at his house.

Speaker 30 And that was on the last day of my period. So I was wearing a size light tampon.

Speaker 30 It was about 10 p.m.

Speaker 30 and I was at that eight hour limit of my tampon but he did not have a trash can in his bathroom and I was also really scared of his mom and I did not want to venture to the kitchen trash and so I figured that I would just change it when I got home.

Speaker 30 My midnight curfew came around. I went home, I changed my tampon, then I went to sleep.
Woke up at 8 a.m.

Speaker 30 to change my tampon again, but now I was feeling a little bit woozy and I had this like itchy red palm wrench.

Speaker 30 For a bit of context on this next part, I also have a condition called hereditary angioedema, which can often look and feel like an allergic reaction, even though it's not.

Speaker 30 So I figured I might have been having an HAE attack in my hands. And so I used a dose of my HAE medication and then I went back to sleep.

Speaker 30 You could equate it to maybe in a non-HAE patient, if you wake up, you feel some allergic discomfort, and then you take a Benadryl or something.

Speaker 30 I woke up again at noon, as teenagers do on the weekend and I just felt so nauseous and I was lightheaded and feverish and just overall real cruddy.

Speaker 30 I crawled down the stairs with a blanket and I laid on the couch to watch TV and I kind of tracked up my symptoms to just random illness and I figured that I'd be better tomorrow.

Speaker 30 I've had this bad track record ever since I was little of having these wild and just incredibly harsh bouts of strep throat, often bad enough to go to the emergency room.

Speaker 30 And they would happen so suddenly and make me so sick that I could just be on death's doorstep today and then just be fine tomorrow. If I had antibiotics, of course.

Speaker 30 And I've also struggled with these just seemingly endless infections of staph and strep bacteria on my skin, in my ears, and in my eyes for just about my whole life.

Speaker 30 And me and my parents thought that this illness was just one of those situations, or at least the flu, because it was January.

Speaker 30 And we really didn't think much of it until my hand rash was so bad that I could no longer hold my Gatorade.

Speaker 30 And it really wouldn't matter anyway, because I could not keep my Gatorade down. And it got to the point where I vomited and I threw up down my front and on the couch.

Speaker 30 And I could not even like move to not throw up on myself. And that was when we went to the ER.
It was about 4 p.m.

Speaker 30 when we got to the ER and then by 7 p.m., which was just 18 hours after removing Tampon Zero, I was in the ICU with a blood pressure of 52 over 28, a scorching fever, and then either a raising heart rate or a slowing heart rate.

Speaker 30 I really cannot remember. And then the gradual shutdown of my bone marrow, kidneys, and lungs.
And it was obvious I was in septic shock, but no one could figure out why.

Speaker 30 And then in my feverish haze, I remembered all of the warnings about toxic shock syndrome on tampon boxes and I told my doctors about what had happened with the tampon and the trash can.

Speaker 30 Toxic shock syndrome really wasn't on anyone's radar and nobody working in that hospital had ever actually seen toxic shock syndrome in person before.

Speaker 30 But that's what I ended up having. Five days of hospitalization, my first ever pelvic examined catheters, awful, and enough lines and antibiotics to take down a horse, I was discharged.

Speaker 30 Thanks to early intervention, quick thinking, and then a hospital staff intent on solving the mystery, I'm still alive today, and I'm lucky to have not lost any limbs or organs due to tissue death.

Speaker 30 The worst that I personally have in recovery was about a year of being immunocompromised and having to slut off all of the skin from my palms and soles and mucus membranes due to cell depth, which is just about the grossest mental image you can muster, but I I guess it's the price of being alive.

Speaker 30 And now that it's 10 years later, I'm really open about menstruation, what we can do to prevent TSS, and who might be more susceptible to contracting TSS.

Speaker 30 And I love to talk about the need for free access to menstrual products and access disposal methods in all bathrooms, public and private. And as a person who now works with teens,

Speaker 30 I love putting my experience and advice to use in the hope that young people, even if they never have a run-in with TSS, will will not treat menstruation as a taboo topic.

Speaker 30 Because I'm living proof on how treating things as taboo can just be a little bit deadly sometimes.

Speaker 31 Absolutely terrifying.

Speaker 26 Yeah.

Speaker 26 And to be the one who has to tell your doctors, by the way, I think

Speaker 31 this.

Speaker 26 Could this be toxic shock?

Speaker 31 Oh my gosh. I mean, it just is like,

Speaker 26 yeah.

Speaker 31 And then, especially, cause I feel like there's that sense of, I don't want to tell someone their, like, their job or be like, you know, I don't want to be like, oh, yeah, I was on, um, I was on WebMD and this is what I think.

Speaker 31 But like, it's, it's real, right? You have to speak up and advocate. And oh.

Speaker 26 100%. Yeah.
I'm a huge fan of people telling me what they found on WebMD. It's very helpful.

Speaker 31 I love that.

Speaker 26 I love that.

Speaker 31 Well, Autumn, thank you so much for sharing your story with us.

Speaker 26 Thank you. And we're so glad that you're okay.
Yes, yes.

Speaker 31 Hi, I'm Erin Welsh.

Speaker 26 And I'm Erin Almond Updike.

Speaker 31 And this is this podcast will kill you.

Speaker 26 Welcome to Toxic Shock. Toxic Shock.

Speaker 26 Yeah.

Speaker 31 I'm, I, this is, I feel like one of those, I know we'll get so much more into the weeds, but I feel like this is one of those diseases where awareness around it is so much higher than the incidence of it.

Speaker 31 But it also that means

Speaker 31 there's like, it's a double-edged sword, right? Like there's mean that there's more fear around it, but also we can recognize it when

Speaker 31 we yeah, okay, that's fair. We're more likely to recognize it if it happens.
Yeah.

Speaker 26 I have, I have so many questions for you, Erin, about like

Speaker 26 how we first saw this and like all of the, I saw little bits and pieces of what happened in the late 70s, early 80s. And like

Speaker 26 I

Speaker 26 just have so many questions still and I'm I'm really excited.

Speaker 31 Do you want me to go first?

Speaker 26 Kind of, but

Speaker 31 we could give it a go.

Speaker 26 That would be fun.

Speaker 26 On the fly.

Speaker 31 Oh, on the fly. Well, I guess before we get into literally any part of this,

Speaker 26 it's quarantining

Speaker 26 time what are we drinking this week we're drinking shock tactics

Speaker 31 i could hear the pause like is it shock tactic

Speaker 31 he literally just talked about it uh shock tactics shock tactics yeah um and it's it's we're doing honestly we're doing like a make your own quarantini if you want yeah but the standard recipe is a placebo rita version so good so good it's sour cherry syrup, like sour cherries.

Speaker 31 They're the best. Yeah.

Speaker 26 Aaron, before this was like, where am I going to get sour cherries? Gosh, they're not in season on my tree yet. And I'm like, dude, they're frozen.
Go to the

Speaker 26 frozen section.

Speaker 31 I do love, I mean, yeah. And I feel like my, I, my trees produce enough to make one.

Speaker 26 cobbler type tree. They'll keep getting better.
Before we moved, from when we moved like from Illinois back out to California, the tree that year had the best year ever.

Speaker 26 And we had so many still in the freezer by the time we moved that I made a huge slab pie to take with us on the drive. I really like that.
All that we ate.

Speaker 26 I think we gave some to you. And we

Speaker 26 did it. Yeah.

Speaker 31 So sour cherries.

Speaker 26 Sour cherries.

Speaker 31 And then you can take the sour cherry syrup, add some club soda and a little bit of lime and it's like refreshing delight.

Speaker 26 So delicious.

Speaker 31 So delish. And we'll post the full recipe for that placebarita.
And then you can make your own quarantining

Speaker 31 on our website, thispodcastwillkillYou.com and on all of our social media channels. If you're not following us, you should.

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Speaker 26 Yeah, it's quite exciting stuff. It is.
It is.

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Speaker 26 We'd love it.

Speaker 32 Time for toxic shock

Speaker 26 syndrome. Syndrome.
Okay. Okay.

Speaker 31 I'm going to have you go first because I feel like it'll help me tell my story better.

Speaker 26 It's like the way we do that. It's the way we do it.
Yeah.

Speaker 26 Right after a quick break.

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Speaker 26 Toxic shock syndrome, or TSS, is a disease. It's called a syndrome because it was like just a collection of signs and symptoms before we knew what caused it, but now we know exactly what causes it.

Speaker 26 And it's caused by a toxin, or rather, a group of toxins

Speaker 26 that are produced by two old-time friends of the podcast.

Speaker 26 That is Staphylococcus aureus

Speaker 26 or Streptococcus pyogenes, or group A streptococcus.

Speaker 26 Okay. So Aaron,

Speaker 26 I was like, I have a question. Already off the bat,

Speaker 26 I thought about, as I was putting this together, I was like, I should probably check in with Erin and see if she's doing the history of like staph TSS or strep TSS. But then I was like, I don't care.

Speaker 26 I'm going to do both. Great.
Okay, great.

Speaker 31 I think I'm doing staph TSS.

Speaker 26 That's what I assumed because that is more related to like menstrual TSS, which we'll talk in a lot of detail about. But we're going to talk about both.

Speaker 26 So there's staph-associated toxic shock and then there's strep associated toxic shock.

Speaker 31 Okay, real quick, this is just a minor question. It should be.

Speaker 26 Give it to me. It should, yeah.

Speaker 31 Toxic shock, it's no longer called toxic shock syndrome because it's not a syndrome.

Speaker 26 No, it totally is still called toxic shock syndrome. Yeah.
Yeah. Okay.
Yeah.

Speaker 26 It's just, that's how it got its name initially. Yeah.

Speaker 26 But it's still called that. Okay.
Yeah.

Speaker 31 Well, I thought because you said that because it's, it's, we know what causes it, we know all of this, that it was initially called a syndrome and now no, it's just that, like, some people who are into semantics are like, it's not that accurate anymore, but like, it's still right, okay, okay, yeah, there are more important things to worry about than

Speaker 26 aren't there? Yeah, I think so.

Speaker 26 Like, toxic shock, toxic shock, syndrome, disease, whatever.

Speaker 26 So, toxic shock, it's caused by toxins released by staph or strep. And these are both gram-positive, really cute little ball-shaped bacteria.

Speaker 26 And

Speaker 26 the most famous of the two is staph TSS. And that's because that is the one that is more strongly associated with menstrual and tampons, with menstruation and tampons.

Speaker 31 Yeah, you just mean like infamy, or do you mean like sheer number of cases?

Speaker 26 No, I mean infamy, not sheer number of cases, as we'll get into later. Okay.

Speaker 26 But we're going to kind of talk about all of these because the mechanism is really quite similar in all of these instances, whether it's menstrual associated toxic shock or non-menstrual toxic shock, whether it's staph or strep that produce that toxin.

Speaker 26 There are some differences in like the kinds of symptoms that we see, whether it's staph or strep, but I'm going to kind of just focus on the similarities. Okay.
Okay. Yeah.

Speaker 26 So in any case, like I said, it really is a kind of clinical definition, how we find toxic shock. And so it's a set of signs and symptoms that we're looking for.

Speaker 26 There's not one diagnostic test that says you have toxic shock.

Speaker 26 So let's go over what those symptoms kind of look like, how it manifests, because that's how we get to how we diagnose it, right?

Speaker 26 So in toxic shock, people generally start with a fever.

Speaker 26 And this might not be the first symptom, but it is a very, very common and important symptom. And that fever tends to be quite high.
So we're looking at like 102 Fahrenheit or higher.

Speaker 26 That's 38.9 Celsius or higher. Okay.
The shock part of it means that there's also hypotension or low blood pressure

Speaker 26 because that's part of shock. Why?

Speaker 26 Why does that happen? Oh, we'll get there. Okay, okay.

Speaker 31 We'll get there. We're just going through the symptoms.
We're going through the symptoms.

Speaker 26 This is how we know signs and symptoms. Yeah.

Speaker 26 You also, especially in the case of staphylococcal. toxic shock will see a rash and this tends to be like a diffuse kind of splotchy red rash sometimes it's described as like sunburn like

Speaker 26 and then we'll also see evidence, either laboratory evidence, like when we're looking at your lab results, or symptom evidence of multi-organ involvement on the way towards organ failure.

Speaker 26 And so this could be involvement of your kidneys, it could be your liver, it could be your musculoskeletal system, which we might see with like pain or with laboratory findings.

Speaker 26 It can be neurologic manifestations. It can be literally any organ system that's affected.

Speaker 26 And usually to meet the criteria, you have to have at least two organ systems, like evidence of damage, and at least two organ systems. Okay.

Speaker 26 When it's streptococcal toxic shock,

Speaker 26 almost always you will find some kind of initial infection, some kind of initial invasive infection, like a necrotizing fasciitis or a cellulitis,

Speaker 26 or evidence of a bloodstream infection. So, growing this streptococcal bacteria in your bloodstream.
Yeah.

Speaker 26 With staph,

Speaker 26 you might not. Very often, you do not see an initial infection, like a cellulitis or something that kind of precipitates this.

Speaker 26 And with staph, only about 5% of blood cultures are positive for staph aureus in toxic shock, compared to like 60 to 80 percent of blood cultures being positive in streptococcal toxic shock.

Speaker 26 Okay, kind of

Speaker 26 a couple.

Speaker 31 Yes, a couple questions.

Speaker 26 Okay, sorry.

Speaker 31 Number one, timeline of

Speaker 31 these signs and symptoms. Like, does it start with a fever? Like, at what point does it go from, you know, not so great, feeling bad, rash to shock, multi-organ involvement?

Speaker 26 It's such a good question. I don't, there's not a good, I don't have a good number for you.
Okay.

Speaker 26 In part because it's going to differ, you know, if we're talking streptococcal versus staphylococcal, right? Like if it's an infection, how quickly does it go downhill?

Speaker 26 It really depends on the infection. With streptococcal toxic shock, which very often might not have, you know, evidence of an infection necessarily,

Speaker 26 because there's not necessarily evidence of infection, we don't have this like traditional incubation period where you're like, oh, might have this amount of time or how long does it take?

Speaker 26 But what I will say is that once this has started to develop, so once you see this evidence of like fever and the blood pressure starting to go down, this process can happen very rapidly.

Speaker 26 So you can see signs of organ damage and rapidly worsening clinical status within like 24 to 48 hours. Okay.
Yeah.

Speaker 31 That's very fast and terrifying.

Speaker 31 Another question then. So related to the blood cultures,

Speaker 31 can you also screen for the toxins themselves? Like, is that the way that people look for this?

Speaker 26 So you could

Speaker 26 if you

Speaker 26 if you had the capability to do that, so if you had like the right PCR-based testing or whatever it is,

Speaker 26 you might, you might A, not have that capacity or you might not think to, because if you can't, like if you haven't detected any bacteria, then how do you know what toxins to look for and that kind of a thing?

Speaker 26 So, yeah, so I don't have a great answer for that. But what is really important because we don't have a great test for it is that we do have to show that there's no other infection, right?

Speaker 26 So part of the definition, especially for staphylococcal toxic shock, is that you have to show that there's no Rocky Mountain spotted fever. There's no leptospirosis.
It's not actually measles.

Speaker 26 It's not meningitis. Like you have to rule out all the other rash things

Speaker 26 before you can say that this is toxic shock. But here's where it gets even more interesting, especially when we talk later about the epidemiology.

Speaker 26 Part of the case definitions in the literature and per the CDC for staphylococcal toxic shock is that one to two weeks after this initial presentation, people develop a new kind of rash

Speaker 26 where the palms and soles of your hands and feet just kind of the skin rubs off. It's called a desquamating rash.

Speaker 26 But that means that that definition can only be met retrospectively, right?

Speaker 26 Right.

Speaker 26 And so it's a complicating factor and probably leads to part of why we likely see an underreporting of toxic shock, because these are like kind of messy criteria right and a lot of other things could potentially fit into this and so we don't have great numbers that's a spoiler alert for for the future shocking yeah hey shocking wow I really didn't mean to do that

Speaker 26 okay so

Speaker 31 staph aureus is often a like a part of our biome like it's part of our microbiome it absolutely is strep pyogenes oh it can be definitely It can be.

Speaker 26 Okay. It can be.
Yeah. In like your throat or your nose or something like that.

Speaker 31 It can be. Throat in your nose.
Interesting.

Speaker 26 Staph is definitely like, it is our friend. Staph lives on probably almost all of us.
Yeah. So how does this actually happen?

Speaker 26 How do you get from like, I don't know, staph just living on you to toxic shock? Well, let me tell you. Okay.

Speaker 26 It can happen either from an infection, right?

Speaker 26 Often we see toxic shock, like I said, with streptococcus, it's, you know, a necrotizing fasciitis or some kind of infection that leads to an invasive infection.

Speaker 26 With staph, it's often seen in the post-operative setting. So it could be like a wound or an incision after an operation because staph is just everywhere, if it happens to get in there and multiply.

Speaker 26 Or if you happen to be colonized, let's say in the vagina, and then you have an overgrowth of this particular strain

Speaker 26 of these bacteria that produced a particular kind of toxin.

Speaker 26 And there's multiple different versions of this toxin. The one that is again most infamous, and you'll talk about later, Erin.

Speaker 26 Well, I don't know if you'll talk about the toxin, but the most infamous cause of toxic shock is caused by a toxin called TSST1. Okay.
Toxic shock syndrome toxin.

Speaker 26 Really clever. Straightforward.

Speaker 26 But all of these toxins that cause toxic shock are called superantigens.

Speaker 26 And we talked about this idea of a superantigen actually in our scarlet fever episode, which you may remember, scarlet fever is caused by strep pyogenes. Right, right.

Speaker 26 A specific strain of strep pyogenes.

Speaker 26 So superantigens are proteins.

Speaker 26 These toxins are proteins that bacteria can make and excrete that when they get into our body trigger an overwhelming immune response.

Speaker 26 This idea of like a cytokine storm that we've talked about here and there on the podcast.

Speaker 26 And this overwhelming immune response itself, in combination with direct damage that these toxins are causing, just like ripping through our cells, is what ends up causing all of the symptoms that we see in association with toxic shock, the fevers, leaky blood vessels that lead to hypotension, dropping blood pressure, All of the damage that we see to our organs, whether that's damage directly to the tissues of the organs themselves or damage to the blood vessels that are feeding those organs, right?

Speaker 26 And all of this is what results in the damage that we see and the shock part of toxic shock syndrome.

Speaker 31 Okay. And so it's not really about,

Speaker 26 okay,

Speaker 31 like the toxin itself is not acting in this way. It's our immune system responding to this toxin.
And so it doesn't have to be like,

Speaker 31 like, I'm just trying to figure out why this toxin exists. And I'm assuming it's like, is it competition with other microbes? Like, what's going on? Do you know the answer?

Speaker 26 I don't, but it's such an interesting question, Erin. Yeah.
I didn't look into that, like, the evolutionary history or anything of these types of toxins. Right.
But it's really, really, really weird.

Speaker 26 I can't, do you want a little more detail?

Speaker 31 Yeah, I do. I would love a little more detail.
Thank you.

Speaker 26 It's really, really interesting and weird how these toxins work. And the question of like, why do they exist

Speaker 26 is so, so interesting because here's what they basically do.

Speaker 26 We're going to step back a minute to talk about like, what is a typical immune response, right?

Speaker 26 We get exposed to various toxins or antigens like all the time, right?

Speaker 26 And in our typical immune response, we have these cells that these cells that go around and find these antigens, right? Antigen presenting cells. They usually process them in some way.

Speaker 26 And we've talked a lot about our immune response on this podcast before, and we've kind of glossed over this part because it's just what they do, right?

Speaker 26 They kind of take them in and they like break them up and they're like, beep, bit-a-bop, let's find the part. And then they present those antigens to our T cells,

Speaker 26 who then decide what kind of response to engage in. Do we do inflammatory stuff? Do we do antibody stuff? Whatever.
Okay.

Speaker 26 So these antigen-presenting cells are like a mediator. They are the ones who take all the antigens and they decide, like, which parts do we show to T cells?

Speaker 26 Like, how are we going to start this process? Right.

Speaker 31 They're making these decisions. Exactly.

Speaker 26 They're organizing, sorting through things. Yeah.

Speaker 26 What super antigens are doing is bypassing this process.

Speaker 26 Super antigens, they themselves go directly to the T cells, grab a hold of these T cells, and then grab a hold of these antigen presenting cells and bind them together, like bridge them.

Speaker 26 And And they're like, let's get this party started. And that causes this massive immune response.
And I was trying, Aaron, because you're so good at analogies. Oh, no.

Speaker 31 The number of times that we've been like, this analogy doesn't need to exist. This analogy has been taken too far.

Speaker 26 I know, but I love that. Okay.
So I tried so hard to come up with analogies for this. Here's the best one that I could come up with.

Speaker 26 It's so bad. Okay.

Speaker 26 Super antigens are like the loudest guy at the party like the one that you didn't really mean to invite or like didn't actually want to come in yeah made it straight to the dj booth somehow no and then like opened all the doors and everyone's just rushing in the bouncers didn't catch him something like that's my analogy oh my god okay so it's like it's like those high school parties you know where it's like just a few of us and then unbeknownst to the the host the host our friends have invited all of their whole school older brothers and all their friends and yeah and they just run through the doors Okay.

Speaker 26 They just run through the doors. Wow.
So it's this overwhelming, way too expansive immune response.

Speaker 31 Do you like it?

Speaker 31 I'm stressed about it because those

Speaker 31 scenes and movies always stress me out because I'm like, you're going to hurt the house.

Speaker 26 Like, what about this? What are you smelling on the carpet?

Speaker 26 Like every teen movie you've ever seen.

Speaker 31 I was not cool in high school, if you can imagine.

Speaker 26 I think I went to my first high school party when I was definitely in college. So

Speaker 31 I was being like, are you using coasters? Do you need a coaster?

Speaker 31 I've got a little basket of them.

Speaker 31 It wasn't even my house, but I was

Speaker 26 a wood. Yeah.

Speaker 31 Anyway, so I can see why super antigens would be a real pain.

Speaker 26 A real pain, right?

Speaker 26 And to give you more of like a numeric sense of this, to see how much these super antigens are overdoing it,

Speaker 26 regular antigens, like just your typical ones, activate about 0.01% of our T cells on average. Okay.

Speaker 31 0.01%.

Speaker 26 A very small proportion of R T cells are being activated by any given antigen that we're exposed to. Super antigens are activating 5 to 30% of R T cells.

Speaker 26 Bye now.

Speaker 31 Okay.

Speaker 26 So

Speaker 31 scarlet fever, another super antigen.

Speaker 31 Another super antigen. What makes a super antigen a super antigen? Like, obviously, we know the characteristics of it, but like

Speaker 31 what is there a range is there a spectrum of of antigenicity from not very i mean obviously but to super antigen why why i guess is just the question that's the question aaron it's a great question

Speaker 26 well formulated

Speaker 31 thank you so much

Speaker 26 yeah

Speaker 26 i don't know though

Speaker 26 fascinating okay isn't it yeah uh so yeah so i mean that that is toxic shock. And that is, you know, how it happens

Speaker 26 and

Speaker 26 what is going on in our bodies in terms of the pathophysiology.

Speaker 31 Okay. So, question about the two different strep and staph

Speaker 26 toxic shock.

Speaker 31 Is there a difference in case fatality rate? Is there a difference in treatment? Yes. And management.
And is there a difference in like susceptibility again in the future to it?

Speaker 26 Such fun questions, Erin. Case fatality, definitely.
Okay. Let me scroll in my notes.

Speaker 26 Case fatality rates for streptococcal toxic shock

Speaker 26 are very depressing, anywhere from like 30 to 60 percent.

Speaker 26 Okay.

Speaker 26 So very, very, very deadly.

Speaker 31 Yeah.

Speaker 26 And remember that streptococcal toxic shock is very almost always associated with some kind of invasive infection. Right.
So the treatment requires that you identify identify what that infection is.

Speaker 26 You try and get like source control if you can. So that means if there's like a necrotizing fasciitis, you have to debride all of that dead tissue that is completely overrun with bacteria.

Speaker 26 And then you need to also treat the toxic shock, which I'll talk about in just a second. With staphylococcal toxic shock.

Speaker 26 The case fatality rates really can vary. And most of what I saw estimated that the majority of staphylococcal toxic shock cases are actually not menstrual.

Speaker 26 And we'll talk a little bit more about what that means, but they're actually more likely to be something like a wound-related or a post-operative infection. Something like 60%

Speaker 26 of staphylococcal toxic shock is from that rather than from menstrual sources.

Speaker 26 The fatality rates, I've seen a real range anywhere between like 8 and 20%,

Speaker 26 but most places also say that menstrual toxic shock is very rare to cause fatalities. And I don't know if that's just based on like current data or if that has been true historically as well.

Speaker 26 But that is what all of the literature that I read suggested.

Speaker 31 Interesting.

Speaker 26 Yes. Okay.
It's very interesting.

Speaker 26 And is that because of, you know, like demographics? Because people who are getting maybe wound infections or operative infections are maybe like older or have more comorbidities or something.

Speaker 31 They're not compromised in some way.

Speaker 26 Or is it because that they also have this infection that you're dealing with? Right. Where most of the time with menstrual-associated toxic shock, there's no infection.

Speaker 26 So, like 10 to 40% of menstruating people just have staph aureus in their vagina at any given time. Right.

Speaker 26 And the amount and quantity of different bacteria really changes during your menstrual cycle because of changes in the pH and things like that with menstrual blood and all that kind of stuff.

Speaker 26 And I said that it's only certain strains of these bacteria that produce this toxin.

Speaker 26 It's estimated that like 18 to 25% of strains of Staph aureus across the board have the gene that encodes for this toxin.

Speaker 26 But even then, not all of those bacteria, even if they have that gene, are going to make the toxin because the environment also has to be right to induce them to actually make that toxin.

Speaker 31 Right. Interesting.
Okay, so they have, it's not like these are just going around producing this toxin all of the time.

Speaker 26 No, it's not.

Speaker 31 It's not dependent upon, and do we know what those environmental conditions are?

Speaker 26 We do, Erin.

Speaker 26 So glad you asked. So one of the things that we know is that it has to be an environment that is aerobic.
They need oxygen.

Speaker 26 Staph aureas can grow with or without oxygen, but in order to produce this toxin, in strains that can produce this toxin, they need the presence of oxygen. Okay.

Speaker 26 They also need like a warm, but not too warm of temperature. They need like a certain pH range, not too high, not too low, things like that.

Speaker 26 And so conditions have to be right for this bacteria to grow to a degree and then to have the toxin, like the gene to make this toxin, and then to actually be induced to produce this toxin.

Speaker 26 before somebody can even be exposed to potentially get toxic shock. And then you asked Aaron,

Speaker 26 what about recurrent infections? This is such a good question. Because we're talking about an antigen and we usually make antibodies against antigens, right? Uh-huh.
Something like 80%

Speaker 26 of people

Speaker 26 have antibodies against these types of super antigens, especially when we're looking at the common one, TSST1.

Speaker 26 Most people, like if you just surveyed a random group of people have antibodies against this, meaning that we're probably exposed to it at low levels and we're making antibodies against it.

Speaker 26 Okay.

Speaker 26 When we're thinking about who is it that ends up getting toxic shock, it is not a simple question. No.
It is not like, oh, if you have a tampon in for too long. No.

Speaker 26 It is not anything near straightforward.

Speaker 26 Because there has to be the correct environment. One to 5% of people are thought to be colonized in the vagina with strains that can potentially produce this toxin.

Speaker 26 Okay. So one to 5% of people, if we're talking about menstrual, just focus on that for a second.
Then you have to have an environment that is conducive. So you need to have enough oxygen.

Speaker 26 Now, menstrual blood, blood contains oxygen.

Speaker 26 So that can increase the oxygenation level of the environment and potentially help to shift those bacteria into producing the toxin.

Speaker 31 Yep.

Speaker 26 Tampons, as you'll talk about, Erin, are strongly associated with especially the emergence of toxic shock as a syndrome.

Speaker 26 And the thought on part of the reason why is that because these are absorbent materials, they contain oxygen.

Speaker 31 I mean, I'm going to talk a little bit about it, but like, it's just like, this is the part where I still have found so much disagreement, not even disagreement, but lack of clarity on.

Speaker 26 Yes.

Speaker 31 And these are the characteristics. This is how step, you you know, step one, step two, step three.

Speaker 31 Is it that the, is it the tampons?

Speaker 31 Is it the blood? Is it like, is it microabrasions? Is it leaving tampons in too long? Is it taking them out? It's like all of these different questions.

Speaker 26 And Erin, it's all of these different things. And that's the point.
Yeah. It's not one thing.

Speaker 26 It is not one thing. It is an individual risk factor.
Are you colonized with this? It's an individual risk factor. Do you already have enough neutralizing antibodies or not?

Speaker 26 Do you have some kind of immunocompromise where you're not producing as many antibodies for some reason or another?

Speaker 26 Have you been exposed to this at lower levels and developed antibodies or not?

Speaker 26 What is the oxygenation level in your vagina and in your menstrual blood? What kinds of, like, how heavy is your flow?

Speaker 26 Are there microabrasions that make it easier for either bacteria or the toxin to get into, like pass through that mucous membrane, get into your bloodstream? Right.

Speaker 26 How much oxygen is being contained in the tampon versus in the menstrual cup? Because by the way, there have have been at least two cases reported from menstrual cup use.

Speaker 26 So I feel like, especially when we're thinking about menstrual toxic shock, what I took away from all of this, and we'll talk more about it in the like looking at the numbers of all of this and how rare this disease is, is that

Speaker 26 we need a lot more research when it comes to reproductive health and like the best menstrual products and all of this stuff, but we cannot weaponize tampons, saying that like tampons are the problem here.

Speaker 31 uh

Speaker 26 well yeah it's it's complicated it's complicated yeah it's complicated but it is not like the tampons are not introducing any bacteria that we know of these are bacteria that are already present in the environment

Speaker 26 uh and we have a lot of data that like we do not have nearly as much data as i feel like we should but i think it is in part because of how rare this disease is

Speaker 26 and how many complicated factors there are that go into this, right? Like it is, it is just not as straightforward.

Speaker 26 And so, I feel like the takeaway that I got is not like, this is evil, this is good, but like, no, we need more information on this.

Speaker 26 And we also can't, because one of the papers I read suggested as a way to prevent it to not use feminine hygiene products, Erin.

Speaker 26 And I was like, sorry,

Speaker 26 what?

Speaker 31 It, I mean, that is

Speaker 31 not a very well-thought-out solution. No, to put it mildly.

Speaker 26 To put it mildly. Okay.

Speaker 26 But yes.

Speaker 26 I feel like I got a little bit off track and probably out of order there.

Speaker 31 No, no. Okay.
So, but to maybe get us back on track, treatment.

Speaker 31 Treatment. What do we do?

Speaker 26 Yeah. So I mentioned source control.
That's going to be important. So that means taking care of any infection that we know of.

Speaker 26 If it is a menstrual toxic shock and there is a menstrual device in place, like a cup or a tampon or whatever, removing that.

Speaker 26 And then the most important thing is using antibiotics that are going to have ability to prevent more toxin production.

Speaker 26 And so that usually means clindomycin because that helps block protein synthesis. And so it helps block production of the toxin.
But then it's also a lot of like supportive care, right?

Speaker 26 It's fluid resuscitation, it's blood pressure support, it's broad spectrum antibiotics because a lot of times you can't, you don't know what it is yet. All of this takes a long time to figure out.

Speaker 26 You got to act fast.

Speaker 31 Yeah.

Speaker 26 Interestingly, there's some evidence for the use of IVIG,

Speaker 26 which is like IV combined immunoglobulin from like a bunch of different sources. It's basically pooled antibodies and giving people really high doses of a ton of random antibodies.

Speaker 26 The thought is that that will help like bind to this toxin and inactivate it.

Speaker 26 There's not super strong data for it, but it's in part because of the difficulties of doing these kinds of clinical trials on very small sample sizes.

Speaker 26 But there's some data that it might be helpful, especially for streptococcal more than staphylococcal, just because that's the data that we have. Okay.
Yeah.

Speaker 26 And that's mostly it, Erin.

Speaker 26 Okay.

Speaker 26 Yeah.

Speaker 26 And you asked if you can get it again. You can, which makes it even that much more interesting because you can, you can get it again, even under different conditions.

Speaker 26 People who have had menstrual toxic shock, especially in the context of tampon use, there has been reports that people have had recurrences without tampon use,

Speaker 26 which again points to the fact that it's not just the tampons. It's a much more complicated thing than that.
Right.

Speaker 26 But yes. Yeah.

Speaker 31 I think I have more questions, but I'm going to, they're just going to have to come to me. Like, I just, there's so much that.

Speaker 26 I know. Yeah.
Well, I have questions too, Erin, because like, obviously, a lot of the papers that I read couldn't not say like, well, we first found out about this.

Speaker 31 I mean, I'm

Speaker 31 literally just going to be talking about tampons.

Speaker 26 So I cannot wait to talk about tampons.

Speaker 31 I can't wait to tell you. Let's take a quick break.

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Speaker 31 Erin, do you remember when you first learned about toxic shock syndrome?

Speaker 26 Ooh, good question.

Speaker 26 No.

Speaker 31 No.

Speaker 26 I just feel like in my memory, and this is not, I'm sure not correct, but I just feel like I have always known

Speaker 26 about

Speaker 31 you were born with the knowledge. No, no, no.

Speaker 26 Like it was like tampons, toxic shock. Like that was a connection that existed in my memory from the first time that I can remember using a tampon.

Speaker 26 And I don't know if I actually learned it that first time or if it was like later knowledge.

Speaker 31 I mean, that's similar to me. Like, I don't know if it was in like health class or something like that, but I'm sure it wasn't in health class for me.

Speaker 26 Probably. Yeah.
I mean, just speaking personally. Yeah.

Speaker 31 I mean, that's, I, I, again, yeah, I, I don't know, but I do, I do have this, this memory of being in my house in Northern Kentucky, like getting my first period and reading that little instruction pamphlet that came in the box of tampons.

Speaker 31 Yeah. And like in one little corner was this dire warning about this deadly disease called toxic shock syndrome that you could get from using tampons.
Yeah.

Speaker 31 And I feel like that made such an indelible mark on me for years after I was like worried, but also a little confused. Like, what was it using it? Again, like all these questions.

Speaker 31 Am I going to get it because I used a tampon for too long or because I took it out too soon? Like, what is going on to give me toxic shock? Yes. Should I be using tampons at all?

Speaker 31 Is that going to help me?

Speaker 26 Like, right.

Speaker 31 Clearly, I think that the takeaway that I had was if I got toxic shock, it was my fault because I didn't know the answers and I wasn't sure where to get them or who to ask.

Speaker 26 Oh my gosh, Erin, that's so heartbreaking to imagine little like baby Aaron being like, well, if I die, it's on me.

Speaker 31 I mean, it was just like, you're, if you use, because it's like, use the right amount, use the right absorbency.

Speaker 26 How the heck are you supposed to know, especially when you're actually 16 years old?

Speaker 31 When you're 16 years old, if you have irregular periods, like there are so many different things where it's like, but I felt like, okay, well, this is just like part of what it means to be a woman, right?

Speaker 31 Like I have my period now. I have to deal with toxic shock.

Speaker 26 Oh my God. That was,

Speaker 31 I mean, it wasn't like something.

Speaker 26 This is my lot in life. This is not great.

Speaker 31 But I just sort of felt like, okay, like this is, this is the knowledge. This is part of it.

Speaker 26 Okay.

Speaker 31 And I feel like.

Speaker 31 After reading for this episode, it seems to me that the history of toxic shock syndrome reveals how the silence and the shame surrounding menstruation and menstrual products, it presented a challenge both in identifying the source of this deadly infection, as well as raising awareness at a time when words like tampon, menstruation, and period were still taboo words.

Speaker 26 I cannot.

Speaker 31 And I think it also demonstrates how the blame has been shifted away from tampon manufacturers who did not properly evaluate this very demonstrating people.

Speaker 26 Yeah. I can't wait.
I can't wait to hear about this because I learned so much inadvertently about how little testing or standardization existed, but prior to this.

Speaker 31 Oh, yeah. Oh, my God.
I mean, did any?

Speaker 26 Yeah. Yeah.

Speaker 31 And so I really only knew the bare bones of this history before researching for this episode. And there is so much more to it.
Like, like you said,

Speaker 31 I'm excited. Let's start at the beginning.

Speaker 26 Okay, okay. Okay.
Okay.

Speaker 31 September 25th, 1977. Okay.

Speaker 26 Denver, Colorado. Oh, I know.

Speaker 31 A girl, 15 years old, was rushed to the children's hospital, quote, delirious and in shock after a two-day history of worsening pharyngitis and vaginitis associated with vomiting and watery diarrhea.

Speaker 31 On admission, her temperature was 40.9 degrees Celsius, which is 105.6 degrees Fahrenheit. Oh my gosh.
And her blood pressure was 66 over zero.

Speaker 26 And what?

Speaker 26 Yeah, that's what it said.

Speaker 31 I read it like eight times.

Speaker 26 Oh my God. Yeah.

Speaker 31 She was described as having red, bloodshot eyes, a hugely swollen face and limbs, a red scaly rash covering her entire body, tender abdomen,

Speaker 31 purulent. I can't, I cannot say that word, Erin.

Speaker 26 It's a tough word.

Speaker 31 Okay. We know what I'm saying.
Vaginal discharge and severe prolonged shock. She was described as quote unquote confused and aggressive.

Speaker 26 Like, no wonder, right? I'm sorry that you're going to put the word aggressive in there. I know.

Speaker 31 I know. Confused and aggressive, right? But like just putting yourself in her shoes, imagine how terrifying.

Speaker 26 Can you not just describe her as dying? Right.

Speaker 26 She was acting a little aggressive. Oh, just a little aggressive.

Speaker 31 Her doctors pumped her full of IV fluids, antibiotics, steroids, heparin, digitalis, and put her on a ventilator.

Speaker 31 And fortunately, after eight days of intensive care, she made a complete recovery, recovery, except for some necrosis in a few of her toes, which ultimately had to be amputated.

Speaker 26 Okay.

Speaker 31 And the fact that her entire skin had started to slough off, but she was stable. And after 17 days in the hospital, she was discharged.

Speaker 26 My goodness, Anne.

Speaker 31 Yep. Her doctors were stumped.
They had run tests for Rocky Mountain spotted fever, leptosporosis, scarlet fever, and other viral rash-causing diseases, but nothing had lit up.

Speaker 31 There was something familiar about this case, though, because over the previous couple of years, there had been a few more just like it in children aged eight to 17, seven total from 1975 to 1977, including one death.

Speaker 26 In Colorado or just like

Speaker 31 that. Yeah, that had written, like, I think, I don't know if it was like the hospital system or that hospital or like within the state.
Yeah. Yeah.

Speaker 26 Okay.

Speaker 31 The doctors that had been working on these cases couldn't find anything that linked them. There was no food, no drug overdose, no exposure to an animal or a chemical.

Speaker 31 But the clinical picture was similar and resembled some of the syndromes caused by Staph aureus infections, like scalded skin syndrome and some staph food poisoning cases.

Speaker 31 Swab cultures confirmed that a toxin-producing staph aureus may be the culprit.

Speaker 31 And so in combination with shock being a unifying feature of the syndrome, the Denver doctors named the new condition toxic shock syndrome syndrome in a 1978 paper.

Speaker 26 Okay. Yeah.

Speaker 31 Was it actually new? Was this brand new? I mean, probably not.

Speaker 26 Yeah.

Speaker 31 There were a few other cases that people found in the medical literature from as far back as the early 1900s. And there was some other like ancient plague that someone proposed.
It doesn't really.

Speaker 31 seem to track in my eyes.

Speaker 31 But one researcher, one researcher suggested that it might be like a new toxin-producing strain.

Speaker 31 Sort of like how we talked about with scarlet fever. Again, strep pyogenes went from being like super, super deadly to then not like just massive shifts in shifts in what strains are there.

Speaker 31 Yeah, yeah.

Speaker 31 And so, regardless of whether this was new or not, the 1978 paper, which is by Todd et al., if you want to read it, was a critical milestone for toxic shock syndrome.

Speaker 31 Besides giving it a name, they also set out this clear clinical picture and described a general patient population.

Speaker 31 And so, other physicians who happened to read this article began to connect connect the dots in their own patients, starting with physicians in Wisconsin and then Minnesota, and then gaining enough momentum that the CDC got involved with what was rapidly becoming a public health crisis.

Speaker 31 The first morbidity and mortality weekly report on that featured toxic shock syndrome was published in May 1980.

Speaker 26 Okay.

Speaker 31 With these additional reported cases from these other states, researchers zeroed in on a toxin-producing strain of Staph aureus, right? Like that seemed to be behind it all, behind these cases. Right.

Speaker 31 Right. But the route of transmission was still unclear.

Speaker 31 The CDC initiated a study to find out how people were getting sick with this condition.

Speaker 31 And they identified about 50 women who had toxic shock syndrome and 50 women who did not, matched by sex, geographic area, age, and were often friends of the cases.

Speaker 31 So they were like, okay, what is different about these two individuals? Let's match them, these pairs.

Speaker 26 I love it. Case control.
There we go.

Speaker 31 And then using phone surveys, importantly conducted by a woman, EIS officer Catherine Shands, because I think that was a really crucial part of getting people to actually, these women to feel like they could open up

Speaker 31 their experience. Yeah.

Speaker 31 They asked a million carefully worded questions about their lives, including menstruation and use of menstrual products. And a tentative pattern began to emerge.

Speaker 31 The people developing toxic shock syndrome were young, otherwise healthy women who were menstruating at the time that symptoms developed and who used tampons.

Speaker 31 And I say tentative to describe the pattern because it wasn't really a smoking gun. There were plenty of tampon users who did not have toxic shock, but the devil, of course, would be in the details.

Speaker 31 Because tampons are not all created equal.

Speaker 31 Like go to your local grocery store

Speaker 31 and check out the menstrual menstrual products aisle.

Speaker 26 You haven't looked lately.

Speaker 31 She got shelves upon. I mean, I haven't looked lately.

Speaker 31 I haven't had a period in years now because the miracle of birth control pill for me.

Speaker 31 But it's shelves upon shelves of different brands, different absorbencies, different materials. I mean, the branding, the variety really is something else.

Speaker 26 The scents, Aaron.

Speaker 31 I cannot. I mean, I cannot.
Yeah. And the landscape in the 19, the late 1970s when toxic shock began popping up was roughly similar to this.

Speaker 31 So why then? Like what was happening in the late 1970s that led to suddenly the syndrome being recognized

Speaker 31 on a national scale? Tell me, Aaron. Okay, here's where we have to get into some tampon nuance.

Speaker 26 Yes.

Speaker 31 In the decades since the first commercially available tampon in 1936, which is Tampax, tampon technology had undergone some pretty big changes.

Speaker 31 Very gradually at first, since the demand for tampons remained pretty low until the 1960s, interesting. I mean, well, you couldn't advertise easily.

Speaker 31 So word of mouth was the main way that people learned about them.

Speaker 31 And then there was a great deal of hand-wringing over how tampons were a threat to young women's purity and like it's going to ruin them, right?

Speaker 31 But eventually, though, the benefits that tampons provided, like being able to swim or dance or go on, you know, be in work-long shifts, all of these things won out over these anxieties.

Speaker 31 And by the 1960s, tampons were seen as a symbol of bodily freedom, of women's liberation.

Speaker 31 And as the consumer base for tampons grew, so did the companies making them.

Speaker 31 And slightly different versions of tampons appeared on the shelves, like each of them trying to edge out the competition, right? Like they each have, oh, this one's slightly different.

Speaker 31 This one has a better name. This one has a better catchphrase.
This one is more absorbent. This one is whatever.
All these different things, the applicator.

Speaker 31 The first tampons made were 100% cotton, but these newer tampons began to incorporate other fibers to increase absorbency, including synthetic fibers and materials developed in the mid-20th century.

Speaker 31 Things like polyester, viscose rayon, which is derived from wood cellulose and processed with other chemicals, polyacrylate, which you can also find as an absorbent in disposable baby diapers.

Speaker 26 Okay, that makes sense.

Speaker 31 Carboxymethyl cellulose, which comes from plant cellulose and shifts from powder to gel when introduced to liquids. And even today,

Speaker 31 it's next to impossible to find tampons made of 100% cotton alone. Like very, very, very few do use those or use just cotton.

Speaker 31 Procter and Gamble's Rely tampon, which took, I know you, I know you know this.

Speaker 26 To hear all about Rely.

Speaker 31 This is the tampon that took center stage in the toxic shock syndrome crisis of the 1980s.

Speaker 31 Rely was composed of, quote, a polyester sheath, compressed polyurethane foam cubes, and carboxymethyl cellulose, end quote.

Speaker 31 And I just want to like make a point here to say that just because chemical names of things are long and like sound complicated does not mean that they are inherently bad.

Speaker 26 Right.

Speaker 31 But

Speaker 31 the issue, and then I'll get into this a little bit more, is just like the testing of this, right?

Speaker 31 Like, because I feel very much like, oh well those don't sound like natural words and it's like that's it doesn't right yeah and it's also like just because something is so-called natural or is cotton rather than rayon does also not mean that it is safer for you right so something being a synthetic fiber does not make it inherently less or inherently more dangerous across the board i mean across the board maybe research will show that it it does right maybe research will show that it does not but yeah yeah we just the sweeping generalizations i think and just like the idea that like oh, that has a lot of big words.

Speaker 26 Yeah. Yes.
Yeah.

Speaker 31 That being said,

Speaker 26 Rely was

Speaker 31 a big, yeah, a big part of this. So Rely was considered and advertised as a super absorbent tampon with lightweight materials able to hold 50 to 1500 times their weight in water.

Speaker 26 Wow.

Speaker 31 Yeah. Sounds like it'll dry you out real good.
Well, yeah, it did.

Speaker 26 I know. Yeah.
That's a problem. That's a problem.
Your vagina is supposed to be moist.

Speaker 26 Anyways, keep going.

Speaker 31 Anyways, so with all of these new tampons coming onto the market, coming onto the grocery store shelves in the late 1970s, what was that approval process like?

Speaker 26 Tell me.

Speaker 31 To be honest, close to non-existent.

Speaker 26 Yes, I knew it. I mean, yeah.

Speaker 31 Until 1976, tampons and sanitary pads were classified as cosmetics.

Speaker 26 Wow.

Speaker 31 Which, and so they were technically under the jurisdiction of the FDA, but there really wasn't any formalized review process for devices like those that were worn or implanted in the body or used to diagnose diseases.

Speaker 26 Wow.

Speaker 31 No official approval for these was necessary.

Speaker 26 Yeah.

Speaker 31 I mean, and this, this is a case, I think, of like technology moving faster than our ability to like understand the implications of it.

Speaker 26 Yeah. Yeah.

Speaker 31 And over the 1970s, it became apparent that like we need to do a better job. This was a mistake to not have any sort of official approval.

Speaker 31 Serious issues with pacemakers, IUDs like the Dalkon Shield, lens implants, and other medical devices had left people with severe injuries and pursuing lawsuits.

Speaker 31 So in 1976, the medical device amendments was added to the

Speaker 31 Federal Food, Drug, and Cosmetic Act. And it's worth getting a bit into the nitty-gritty here because of the bearing that this would have on the emerging issue of toxic shock syndrome.

Speaker 31 So under this amendment, devices were put into one of three categories based on their perceived risk. Class one was almost no risk, like bedpans, nitrile examination gloves, that sort of thing.

Speaker 31 Class two devices carried a bit more potential for risk, so like tampons and hearing aids, and required more testing, labeling, and monitoring. And then there was class three.

Speaker 31 This was the riskiest bunch, like artificial hearts or other experimental devices. But when this amendment was introduced, what do you do about the existing devices, like tampons, right?

Speaker 31 Most of these pre-amendment devices were just grandfathered into the system and no disruption to sales or production happened.

Speaker 31 Any new tampons, I'm talking about tampons specifically here, could be ushered

Speaker 31 through this approval process pretty quickly if the company could demonstrate that they were quote unquote substantially equivalent to pre-amendment devices.

Speaker 26 That's a problem.

Speaker 31 It is a problem.

Speaker 31 And one of these substantially equivalent tampons was Procter ⁇ Gamble's Rely tampon. Okay.

Speaker 31 Rely. It even absorbs the worry.

Speaker 31 This was the tagline on the sample box containing four Rely tampons that was shipped out in mass across the U.S. to millions of homes from the mid-1970s to 1980.

Speaker 31 It's just as like you get free tampons in the middle.

Speaker 26 Try it out.

Speaker 31 Maybe you like this. Super absorbent.

Speaker 31 The materials that were used in Rely Tampons had been used in other tampons on the market, just not the precise configuration. Right.

Speaker 31 But how could anyone know that?

Speaker 26 They cannot.

Speaker 31 Manufacturers are not required to disclose the exact composition of tampons, like materials, fragrances, et cetera, because it qualifies as a trade secret.

Speaker 26 Right, yeah, yeah, the trade secret trade.

Speaker 31 Trade secrets. I mean, I have a lot of thoughts on that and some recent news about certain quote-unquote unextinct animals.
Anyway. Oh my gosh.

Speaker 31 We should do an episode.

Speaker 26 Dire wolves.

Speaker 31 Dire wolves. I mean, I can't say it without using quotes because

Speaker 31 anyway, overall, back to toxic shock.

Speaker 31 As far as I could tell, until the late 1970s, though, tampons had not been associated with any significant health issues or outbreaks since they had hit the shelves decades before.

Speaker 31 Like there, it really doesn't seem to be like something. It was like more maybe

Speaker 31 very sporadic types of individual issues, not outbreaks.

Speaker 31 So the spate of toxic shock syndrome cases

Speaker 31 with the beginning in the late 1970s would reconfigure the perception of these devices as inert and completely benign.

Speaker 31 What had changed? That was the question that the CDC sought to answer. The June 27th, 1980 MMWR described the link between toxic shock and tampons.

Speaker 31 Of the 105 cases since September 1978, 96% occurred in women aged 12 to 52 during their menstrual periods. Okay.
96%.

Speaker 31 And the case fatality rate was 15%.

Speaker 26 Wow. See, that's so high.

Speaker 31 So high. That's when I was asking and you were like, well, that's pretty low.

Speaker 31 Like 15% 15% is very high. Yeah.

Speaker 26 And that's why I said I don't know all the numbers I saw, I think, were from current data.

Speaker 31 Right, right, right.

Speaker 26 So

Speaker 26 grains of salt.

Speaker 31 Exactly. Yeah.

Speaker 31 In one case control study where they matched someone who had toxic shock with another person who didn't, like similar age, socioeconomic status, geographic location, et cetera, they found that 100% of the cases used tampons compared to 86% of the controls.

Speaker 31 Vaginal cultures of those with toxic shock before starting antibiotics showed 94% positivity rate for Staph aureus. Okay.
And no similar cultures had been done for controls because

Speaker 26 retrospective.

Speaker 31 Yeah. Right.
But in general, the prevalence of the bacterium in the vagina and cervix ranges from 2% to 15% is what I saw in this book. Yeah.

Speaker 26 And well, because it depends too on it can be up to 40% when it's just Staph aureus, but not all of them are going to produce the toxins. Right.
Very, very varies.

Speaker 31 Follow-up studies sought to get a handle on which tampons and why. And what they found is that across the board, tampons with higher absorbencies were associated with toxic shock syndrome.

Speaker 31 Several brands were implicated, but the clear winner, if you could call it that, I guess, was Rely with 71% of those who had contracted toxic shock using the brand.

Speaker 26 Wow. I didn't realize it was that high.

Speaker 31 71.

Speaker 26 Well,

Speaker 31 and it's hard to say how much of it was Rely's popularity because it had become very popular over a very short time, especially with all those mail-out, you know, sample boxes.

Speaker 26 Yeah, like what percentage of those 86% of people who didn't get toxic shock also were using Rely Tampons.

Speaker 31 26% of those in the control group used the brand.

Speaker 31 But it wasn't just down to Rely's popularity. Right.
The risk seemed to be higher for that specific tampon compared to other tampon brands.

Speaker 31 And researchers suspected that it had something to do with the composition of the tampon itself.

Speaker 31 So like I mentioned, all of the individual components of the relied tampon had been used in other tampons previously, but not in combination. Right.

Speaker 31 And there seemed to be something specific about the blend of polyester and carboxymethylcellulose that encouraged bacterial growth.

Speaker 31 As you can imagine, this was not welcome news to Procter ⁇ Gamble, who were busy conducting their own studies that naturally were intended to cast doubt on what the CDC had found.

Speaker 31 They even tried to strong-arm the CDC into giving them the names and contact information of the women who had been included in the first study. Excuse me?

Speaker 31 Yeah, because they were like, the CDC is inflating cases of toxic shock. Like, we don't think that these women actually had toxic shock.

Speaker 31 So we're going to have to go to their doctors and look in their medical records.

Speaker 26 Absolutely not. Yeah, the CDC was like, I'm sorry.
No. What? No.

Speaker 26 No.

Speaker 31 So instead, the Procter ⁇ Gamble tracked down women who had called the company and complained that the tampons had made them sick, which like there were a lot of complaints about Rely specifically.

Speaker 31 Their intention with tracking these women down was to try to undermine the CDC study,

Speaker 31 saying that the cases of toxic shock they included weren't really toxic shock. And so Rely has, you know, nothing going on.

Speaker 31 This didn't

Speaker 26 work.

Speaker 31 And in response, then they were like, well, we'll try something else.

Speaker 31 They were like, let's do this, this contradictory PR approach where they touted Rely as, you know, these outstanding tampons, super unique, and they give you what no other tampon does.

Speaker 31 Also at the same time, by being like, but like, Rely is just another tampon. It's not any different than these other tampons or not any more dangerous than the other tampons out there.

Speaker 31 So it's like they're saying, Rely.

Speaker 26 We're the best. We're so different.
We're just like everyone else.

Speaker 31 We're just like everyone else.

Speaker 26 Exactly. Exactly.

Speaker 31 But at a certain point, they realized that there was nothing that could be done. And the CDC data was pretty damning.

Speaker 31 And so in September 1980, they realized the inevitable and they tried to get ahead of like the bad PR storm. And so they voluntarily pulled Rely from the shelves and issued a recall.

Speaker 26 I don't think I realized that it was a voluntary. So

Speaker 26 they didn't actually get banned?

Speaker 31 No, it was a voluntary recall. And this included like print and television campaigns.
And there's, I think that like

Speaker 31 there's more to that story in terms of like, I think that they saw the writing on the wall.

Speaker 26 Well, totally, but I just like thought that they also actually got banned. No.
Okay, cool.

Speaker 31 Well, and then, yeah, because this,

Speaker 31 there were implications to this,

Speaker 31 right? Because on the one hand, this is great. This is what needed to happen.
Rely, there was a clear association with rely specifically

Speaker 31 and toxic shock syndrome. So this meant that this, you know, potentially dangerous product was no longer going to be available, available for purchase.
Right.

Speaker 31 But on the other hand, this focus on rely tampons only provided a false sense of security once they were removed from the shelves. Right.

Speaker 31 And it obscured the nuance in the relationship between tampons and toxic shock syndrome. Yes.

Speaker 31 It's hard to overstate the media frenzy surrounding toxic shock syndrome.

Speaker 31 In 1980, it was the third leading news story in the nation behind only the Iranian hostage situation and the presidential election.

Speaker 26 Wow.

Speaker 31 Toxic shock.

Speaker 26 Toxic shock.

Speaker 31 It was everywhere. Yeah.
And this was overall, like we talked about, a good thing in terms of raising awareness.

Speaker 26 Yeah.

Speaker 31 The CDC estimated that tampon use dropped from 70% to 55% by the end of 1980 because of toxic shock syndrome. Wow.

Speaker 31 But because the research was so new, misinformation was everywhere

Speaker 31 with journalists and news anchors reporting all kinds of unsubstantiated hypotheses about the nature of this infection. Things like rely tampons cause toxic shock syndrome, period.

Speaker 26 That's it.

Speaker 31 Toxic shock syndrome is a variant of scarlet fever. Tampons cause abrasions or ulcerations that serve as a route of entry for the bacterium.
Tampons act as a plug that allows for bacterial growth.

Speaker 31 Leaving tampons in too long causes toxic shock. Removing tampons too soon causes toxic shock.
I mean, like, just so many, there was no clear, coherent message. Right.

Speaker 31 And part of it is like we discussed because it is a very nuanced thing.

Speaker 31 But I think another part is because there was such fear and anxiety about, like, we need to solve this. Yeah.

Speaker 31 And so we need to report this as like, we need to have a clear message to get out to the public. Rely tampons cause toxic shock.

Speaker 26 So that's the, that's the message they went for.

Speaker 31 Or tampons cause toxic shock. Yeah.
Or taking them out too soon, you know, like all of these different things. Yeah.

Speaker 31 And then you have some older male news acres that refuse to say the words tampon or menstrual cycle on the air.

Speaker 26 So what did they say?

Speaker 31 They just didn't report on it or they made somebody else do it. Right.

Speaker 26 Yeah.

Speaker 31 But the rest of them ran with the story. The mixed messaging and extensive airtime given to guesswork both contributed to the fears that surrounding toxic shock syndrome.

Speaker 31 I'm surprised I haven't stumbled more over toxic shock syndrome.

Speaker 26 It's a hard thing to say over and over again.

Speaker 31 TSS. TSS.
I might, maybe I'll switch to that.

Speaker 26 Yeah.

Speaker 31 But

Speaker 31 by also, so you're contributing to the fears and then also shifting blame to the consumer.

Speaker 26 Right. That's the thing.
That's the thing, I think, Aaron. And I think that that still happens today, even in the talk of like, well, did are you using the right absorbance?

Speaker 26 Are you using the right absorption?

Speaker 26 Too long? Yes. Blah, blah, blah.
And I'm like,

Speaker 26 did you not buy the organic ones? Right.

Speaker 26 I'm sorry. What? Yeah.
Yeah. Yeah.

Speaker 31 Because

Speaker 31 that's the thing is that the removal of rely tampons didn't mean the removal of the threat of toxic shock syndrome. Yeah.

Speaker 31 And in fact, one report found that between January and September of 1980, which is when Rely was still on the market, 50 cases of TSS were reported in Minnesota, 45% associated with Rely.

Speaker 31 So it's 50 cases between those months. And in a similar period of time, after Rely had been pulled, there were 59 cases,

Speaker 31 mostly associated with other super absorbent tampon brands.

Speaker 31 But now that there was no single brand to blame, no scapegoat, no scapegoat, the responsibility to prevent the condition fell entirely to the consumer with the logic following that if someone developed TSS, it was because they weren't using tampons properly.

Speaker 26 You didn't read the instructions.

Speaker 31 You didn't read the instructions. And on top of finally standardizing what junior regular super and super plus actually meant, which happened in 1989.

Speaker 26 Aaron, I want to do a whole episode on the tampon task force.

Speaker 31 Oh my, yes, the Tampon Task Force.

Speaker 26 Yes. And the syngina.
I learned so much.

Speaker 31 I know. I know.

Speaker 31 There is, I just, it seems like there was, um, it took so long to get anything.

Speaker 26 It took so long.

Speaker 26 Yeah. It took so long.
Like it's unfathomable how it took so long. And how then, even after all that work, people are still like, yeah, I'm just going to use saline still.
Yes.

Speaker 31 I know. I know.

Speaker 31 I know. All of that.
Yeah. There's, there's so much there.

Speaker 31 I'll recommend a book at the end of this. But yeah.

Speaker 31 But

Speaker 31 so yeah, they had standardized absorbencies, and then the FDA had also issued guidelines for warnings to be included on the tampon box or in an insert inside the box. Yeah.

Speaker 31 But the initial warnings were very vague. Attention.
Tampons are associated with toxic shock syndrome. TSS is a rare but serious disease that may cause death.
Read and save the enclosed information.

Speaker 26 Wow.

Speaker 31 No detail on symptoms. No.
So, like, you're just like, there's this deadly disease. Right.

Speaker 26 We don't know what it looks like. Is it from the tampon or is it? What do I look for? How do you know if I have it?

Speaker 31 Yeah, no information on how tampons were associated, even though at that point it had been uncovered through research that it was likely that superabsorbent tampons created, like you said, this more aerobic environment for Staph aureus to multiply and frequent changing created even more aerobic conditions.

Speaker 26 Oh, interesting.

Speaker 31 That's what some of the research said. But, like you said, there's it's nuanced.
There's more,

Speaker 31 more factors at play.

Speaker 26 Yeah.

Speaker 31 But even that messaging wasn't simple enough to be reported by major media outlets. And so the issue continued to be one of individual responsibility rather than consumer protection.

Speaker 31 Women were told to monitor their own bodies for signs of this deadly disease rather than manufacturers being forced to re-evaluate their product and improve it to protect the health of their consumers.

Speaker 31 If there was an association between whatever component, whatever material, and an increase in aerobic environment or whatever it was.

Speaker 31 And yet, as Shara Vostrel, who's the author of Toxic Shock, a Social History, points out, which is the book that I read for this, things could have been much worse.

Speaker 31 If the toxic shock public health crisis had happened a year later, which would have been the first of the Reagan presidency, there wouldn't have been nearly as many women in the administration administration to advocate for women's health.

Speaker 31 Women like Dr. Catherine Shands, the EIS officer at the CDC during the time who led the TSS task force.

Speaker 26 Wow.

Speaker 31 That could have led to decreased awareness, a slower change to manufacturing guidelines, and even less attention to the lack of transparency about tampon production.

Speaker 31 Since the height of the toxic shock syndrome crisis in the late 1970s and early 1980s, incidence has declined, thanks in large part to, from what I can tell, rely being pulled, materials like polyacrylate, polyester foam, and carboxymethylcellulose being discontinued and tampons, absorbency being standardized, and amazing advocacy and awareness work.

Speaker 31 Updated labeling requirements as of 2017 have boxes prominently display

Speaker 31 Quote, attention. Tampons are associated with toxic shock syndrome, TSS.
TSS is a rare but serious disease that may cause death. Read and save the enclosed information.

Speaker 31 That enclosed information must include symptoms and estimates of incidence, advises to use minimum absorbencies, and declares that risk can be avoided altogether by not using tampons and alternating tampons with PADs, which is not true.

Speaker 26 Risk can be avoided altogether?

Speaker 31 Apparently, that is what...

Speaker 26 That is what I read. Yeah.

Speaker 31 Great. Yeah, that's what I read that the enclosed information has to say.
Okay.

Speaker 31 Despite the fact that it's been over 45 years since since this story broke, there is still confusion, I feel, about tampons and toxic shock, about toxic shock overall at both the scientific and consumer levels.

Speaker 31 You know, how the two are related, how to reduce risk, and what safer alternatives exist. Can we make them? Do they exist?

Speaker 31 Given that more than 10% of women in the U.S. are menstruating at any given time.
Ooh, I love that statistic.

Speaker 31 This is not okay. Yeah.
That these, that we don't know the answers to these.

Speaker 26 Yeah.

Speaker 31 Research into women's reproductive health is continually underfunded and deprioritized. And the shame that

Speaker 31 surrounds menstruation keeps many women from talking about these issues or feeling like they are justified in demanding that things change.

Speaker 31 So, Erin, tell me, are things changing?

Speaker 26 Do we know more stuff now?

Speaker 26 I'm not going to be able to answer that question,

Speaker 26 really.

Speaker 26 But I can tell you about

Speaker 26 what we do know. I love it.
Okay,

Speaker 26 right after this break.

Speaker 26 So let's just talk numbers for a quick second. Okay.

Speaker 26 This is so toxic shock syndrome, staphylococcal and non-staphylococcal, is a reportable disease in the U.S. And that's how they're classified.
Staphylococcal, non-staphylococcal toxic shock.

Speaker 26 Since 1983, staphylococcal toxic shock has been notifiable. And since 1995, streptococcal toxic shock or non-staphylococcal has been notifiable.

Speaker 26 Global numbers, pretty much impossible for me to find.

Speaker 26 I don't have them.

Speaker 26 But

Speaker 26 this is both of these diseases are quite rare.

Speaker 26 And the numbers in terms of the prevalence or the incidence each year

Speaker 26 really, really, really vary depending on what paper that I read.

Speaker 26 Most of them seem to come to the conclusion of around one-ish case per 100,000 people per year.

Speaker 26 Okay.

Speaker 26 But when I say they vary, I mean, like, there was a paper from 2018 that used UK biobank data.

Speaker 26 And in Europe and the UK, these are not notifiable diseases.

Speaker 26 So the data is even more sparse. But looking at like biobank data, they estimated an incidence of 0.07 cases of toxic shock per 100,000, which is really, really, really low.

Speaker 26 Yeah.

Speaker 26 Most of the U.S. data estimates between 0.5 and 1 per 100,000, though I've seen some that say up to two per 100,000 cases per year.

Speaker 26 When it comes to streptococcal, because most of that is for staphylococcal toxic shock, it's even more all over the place in terms of like what the numbers are, the estimates are.

Speaker 26 But it is estimated that somewhere in the range of like 10 to 20% of people who have an invasive group A strep infection will go on to develop toxic shock.

Speaker 26 And so estimates also range between like one and five per 100,000. Okay.
But you'll be happy to know that because I was unsatisfied with all of the numbers that I was finding and because

Speaker 26 we're not

Speaker 26 quite Aaron. Yes, we're Aaron mathing.
Okay, Aaron-ish math. Aaron-ish math.
I went, this is a notifiable disease in the U.S.

Speaker 26 So if you didn't know this, you can go directly to the CDC where they have a national notifiable disease survey and they have an interactive tool that can tell you that from

Speaker 26 2016 to 2022 that's the most recent timeframe that they had there were 2,144 cases of streptococcal toxic shock

Speaker 26 and 217 cases of non-streptococcal or staphylococcal toxic shock that were reported interesting the the difference between in magnitude between the two right streptococcal i mean streptococcal infections are like quite still rampant and so 10 to 20% of them are developing toxic shock.

Speaker 26 So if we look then, if we eron math that a little bit, there's a range in years, but 145 to 416 cases per year was the range for streptococcal toxic shock in those different years.

Speaker 26 And then between 15 and 44 cases per year of staphylococcal toxic shock. In the whole entire U.S., that's what gets reported.
And this is a reportable disease.

Speaker 26 So these numbers should be accurate in terms of what is identified.

Speaker 26 And so this is where we then have to remember that the

Speaker 26 like the case definitions that we use to identify these cases are imperfect, right?

Speaker 26 And so these are probably underestimates, even though they are accurate reported numbers, right? Yeah.

Speaker 26 Because these CDC criteria, and they do say this on the CDC website, they're like, you shouldn't use this as a clinical diagnosis.

Speaker 26 Like this isn't what you should be using at the bedside to decide, am I calling this TSS or not? Because this is what we're using from a research perspective. And that's a little different, right?

Speaker 31 Interesting. Should they be different?

Speaker 26 I mean, they have to be in part because of this, the fact that like the probable case definition, like

Speaker 26 you can't. you can't do a full case definition without the one to two weeks later having this sloughing rash.

Speaker 26 You're not going to have that in the setting. Right, right, right.
Right.

Speaker 26 So yeah, so there is a little bit of variability there. Um, and so these criteria will likely inevitably result in some degree of under-reporting because of that.

Speaker 26 Um, a lot of people are likely lost to follow-up, and so you might not get the records on did they end up developing a rash? Can we confirm that that's what that was or not, right?

Speaker 26 Like, don't get me started on our lack of centralized medical records. So, how can you go back and find that information? It's hard.

Speaker 26 Um,

Speaker 26 yeah, so we, the it is the good news is overall, it is very, very rare. Both staphylococcal, especially staphylococcal toxic shock, as well as streptococcal toxic shock are both rare diseases,

Speaker 26 likely underreported, but still very rare.

Speaker 26 And we talked already about the kind of mortality rates and things like that. Those haven't changed from the data that I found in recent years, at least.

Speaker 26 When it comes to the questions that you asked, Erin, about like,

Speaker 26 where are we going from here?

Speaker 26 What else have we we learned what's what's good what change what changes happened I don't know Erin if we've come up with any changes since the tampon task force of the 1980s isn't that depressing it is it is

Speaker 26 it's so depressing and I

Speaker 26 I

Speaker 26 yeah I so I don't have any I don't have any new news um in terms of

Speaker 26 what do we know about tampons and these relationships, besides what we've talked about already,

Speaker 26 all of the, like across the board, the recommendations from CDC,

Speaker 26 from FDA, like based on all the epidemiological evidence that we have, and it's all epidemiological.

Speaker 26 And then there's some, you know, studies that have looked at like the composition of this tampon versus that tampon.

Speaker 26 Is there a difference in lab settings of how much bacteria that you can grow and that kind of a thing? Yeah. And how strictly perfect?

Speaker 31 Right. Does that translate to human?

Speaker 26 Exactly.

Speaker 26 And like who's funding those studies? I don't know.

Speaker 26 Most of what I saw did not suggest huge differences between the tampons that exist today, the tampons that are on the market today, regardless of their composition, in just in a laboratory setting, how much bacteria are they growing, right?

Speaker 26 Which again points to that it's not, it's not just the tampons themselves, it's this interaction between the tampons and the environment. Of course.

Speaker 26 The recommendations across the board are to use, like you said, the lowest absorbency that you can,

Speaker 26 which at least now they're standardized.

Speaker 31 I mean, I guess, yeah.

Speaker 26 To some degree.

Speaker 31 Still, how the heck do you like, yeah, yeah.

Speaker 26 Yeah. Well, also because I always think, I used to think about this a lot when I used to use tampons.

Speaker 26 Like, what is six grams of menstrual blood? I don't know.

Speaker 31 No idea. No clue.
It's just a little blue liquid. Like,

Speaker 26 yes, that's what it is. That's what it looks looks like.

Speaker 26 So, yeah, but that is the recommendation to change them at least every six to eight hours and not go longer than that.

Speaker 26 I didn't know that you weren't supposed to use them overnight growing up all the time. All the time.
Did. Yeah.

Speaker 26 But I mean, again, because this is so rare, like I

Speaker 26 really like, Erin, the way that you went through all of the history of this and kind of emphasize the fact that, like, we need to hold accountable the correct groups, right?

Speaker 26 And it is not an individual's job to make sure that they don't get it.

Speaker 31 It's like at the very least, I think that what it shows is just, and I know that there are people working on this.

Speaker 31 And I'm not saying that there's no one working on this, that there's no effort being, you know, no interest, no effort, no awareness. But like.

Speaker 31 The fact that we don't have some of tools maybe to be like, who is likely? Who has antibodies at high enough levels? What are the screening protocols? Like, how can we better

Speaker 31 do better? Yes. How can we do better? Yes.

Speaker 26 Yeah. And I do think that that's an interesting arena is like, and it's hard because of how rare it is, right? So like, where's the funding for it? Because people don't care as much.

Speaker 26 Where is the like high kind of clinical suspicion to think, is there a test that do I have a test that I can run? How do I run that test? On what population should I be running that test?

Speaker 26 When should I be thinking about it? When should I not? And those kinds of things. So it's all like, there needs to be a lot more done.

Speaker 26 I didn't find any updates on it. And maybe I missed it.
So if you know of things, please let us know.

Speaker 31 Reach out. Yeah.

Speaker 26 But if you want to know more,

Speaker 26 sources. Papers and sources for you.

Speaker 31 Yeah, we do. I have some papers, but I would say, again, I'm just going to shout out that book,

Speaker 31 Toxic Shock, a Social History by Shara Vostrel.

Speaker 26 Love it. Great.

Speaker 26 I had so many papers for this, Erin. Let me tell you some of my favorite ones.
okay?

Speaker 26 From the Lancet 2019, or sorry, the Lancet Infectious Diseases 2019 by Berger et al., there was Menstrual Toxic Shock Syndrome Case Report and Systematic Review of the Literature.

Speaker 26 Such an interesting case report in there, too.

Speaker 26 Really highlights how much we don't know and how we likely underdiagnose it.

Speaker 26 There was a really very thick book that I read just one chapter of called the Palgrave Handbook of Critical Menstruation Studies.

Speaker 26 And the chapter was called Toxic Shock Syndrome and Tampons, The Birth of a Movement and a Research Vagenda. So that was an interesting

Speaker 26 really liked it. But I also want to shout, I had a bunch more like, you know, research papers and things, but I also wanted to give a shout out to a Washington Post article from 2016

Speaker 26 by someone's last name was Cowart, because I didn't write their first name. That was called Women Are Still Getting Toxic Shock Syndrome and No One Quite Knows Why.

Speaker 26 It just is a really, it's kind of like this podcast, but in written form. It was a really great overview.
They went into the history.

Speaker 26 They went into like way more detail on the biology than I see in a lot of,

Speaker 26 you know,

Speaker 31 popular media.

Speaker 26 Yeah.

Speaker 26 So it was a really great, like very

Speaker 26 overview of it. So I wanted to give that one a shout out.
But we have so many more sources on our website, this podcast will kill you.com, all of them from this episode and every one of our episodes.

Speaker 31 Thank you so much again to Autumn for sharing your story with us. We appreciate it.
Just

Speaker 31 more than we can say.

Speaker 26 It really does mean so much to us so thank you yeah thank you also to bload mobile who provides the music for this episode and every single one of our episodes thank you to tom and liana and pete and brent and everyone else who at exactly right who does so much um to help us with this podcast we really love it it's fun thank you to you for listening and watching yeah

Speaker 26 um

Speaker 26 i'm embarrassed by that face we really like it i liked it i liked it thank you so much for for being with us through this. I hope you liked this episode.
Yeah.

Speaker 31 Yeah. Let us know.
Let us know what else you want to hear. And as always, a special thank you to our patrons.
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Speaker 31 Well,

Speaker 31 until next time, wash your hands.

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Ep 177 Toxic Shock Syndrome: A shock to the system

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