The Medical Detectives - Trevor & Angela's Story: The Wife vs. The White Coat

Episode Date: April 23, 2025

This week on The Medical Detectives, Erin and Anna tackle their first-ever male patient story, delivered by the one person who never stopped believing him: his wife, Angela. From childhood Guillain-Barré and a hidden battle with addiction to a whirlwind romance and marriage, Trevor’s life derails when relentless vomiting and mysterious “unexplained” ER visits lead to gallbladder surgery, and still no answers. It isn’t until a desperate trip to Johns Hopkins that a sharp-eyed clinician finally diagnoses him, revealing how dangerous medical labels and overlooked side effects can be. Join us as we explore the power of advocacy, the damage of judgment, and what it really takes to be heard in your own care. Have a medical mystery or story of your own? Send it to [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

Hi, Anna. Hello. Lovely seeing you today, Erin. I'm in my new location. I was going to say you did change it up on me. It looks a little unfamiliar. I did. I did change it up. Well, today's story was I think a first because follow the logic. It's our first male story, but told by his female spouse. Yes. So still some solid girl power in this episode, but it is a story about a man and our first one. I think this episode, you know what, it's a lot

about feeling judged and working past that judgment. And I think if you've ever felt judged through your medical journey, I think you'll learn a lot from this episode. And I think potentially even ways to advocate for yourself more, right? And when you are facing that judgment upfront. And really, you know, the power in a negative way of labels and what something in your chart can do to color how an interaction goes with the medical system. And I know that many people feel that judgment from having this particular label.

And I would say we have talked about physical labels, weight, but I think this is a different label. So it's not a label we've really talked about before, but I think it's one of the ones that probably affects people medical care a lot. So I don't want to give them too much away. And I just want to remind everyone in the audience that this is actually one of our listeners who is a devout listener. She's like, oh, I think I have a great story to tell. We really welcome any listener who feels like they have a story that deserves to be told, please email it to stories at the medical detectives podcast.com.

And what's really fascinating about that too is the number of times people have had these amazing super interesting stories that we've learned so much from. And at the end and like, oh, I didn't know if it would be good enough. So I feel like that is a common feeling. So don't be afraid to share. We are here. I'm ready to listen and help you help others. So with that, let's just jump into the episode. Let's do it. Hi, Angela. Thank you so much for joining us. Welcome to The Medical Detectives. Hi. Thank you for having me.

Well, Angela, you are here actually telling the story on behalf of someone. And would you mind telling our listeners who you're telling the story on behalf of? Okay. So I'm Angela and I'm telling the story on behalf of my husband, Trevor. And this is going back to the very beginning. This all starts actually at his fifth grade year of school. So he was very young. Shall we get started? Yes.

I also love that our first male host is told by a woman. He is very much your typical man where he does not tell what he is actually thinking in a good way. So he was very on board with me telling his story for him. And this also plays a role later on in the story of how he does not verbalize things well. So that plays into it, absolutely. So in fifth grade, Trevor got Guillain-Barre syndrome. I might be saying that improper, Guillain-Barre, Guillain-Barre syndrome,

which at that time in 2003 is very rare. Anna has a very puzzled look on her face. This is my very non-medical understanding because obviously I was not a part of Trevor's life in fifth grade. He ended up being hospitalized for a couple of weeks. He was life-flighted to a major hospital in our area. He ended up losing function essentially from the waist down. My basic understanding is that your body attacks its own nervous system.

And so he had the IG infusions to repair this and he had a very long recovery. Months and months, had to relearn how to walk, had to be in a wheelchair, physical therapy, occupational therapy. So school was hard. So the condition is called Guillain-Barre and it is typically a temporary loss in the use of your nerves. So you seem almost paralyzed in some capacity. Sometimes it's your face, sometimes it's your body, but it is thought to be a type

of what you described like with the body attacking itself. So an autoimmune condition. And as we've had people in the past describe, they've used IVIG therapy, right? Those are types of antibodies to try and help repair the body. So this is not the medical mystery. This is just a fact. No. Oh, no.

Oh, dang. Okay. This is not the mystery at all. This is just the very, very tip of the iceberg and the very beginning. So that is the history of Trevor's medical background. And so then we fast forward to he's right out of high school. I'm right out of high school and he is about two years older than I am. And I'm working as a CNA, the nursing assistant at a nursing home. And I actually take care of his grandmother for six months before I realize that this is his grandmother. That he's the love of your life?

Is this a love story? Please tell me this is a love story. No, it's not all of it. But essentially in high school, he wanted to date. And I said, no, you're a player. You've dated all my friends. I'm not giving you a chance. But then fast forward, here we are right after high school and I didn't realize I was taking

care of his grandmother and one Facebook friend request to another. And then within a year, we are married. Like 10 months in, we're married. All right. So you are in a whirlwind romance. Yes. So that is 2017. We get married. So summer of 2016, right after rekindling, we've only been together for a little bit. Trevor has a very severe drug problem that he hid very well. And we are only dating at this point.

And I said, I'm not dealing with this. Like, see you later. We actually broke up for about a day or two. And I said, I'm not about drugs. I can handle some things, but drugs is not one of those things that I'm willing to tolerate. So very willingly, he was like,

I can give up drugs for you. Like I love you enough to absolutely make that change. This is going to be rough for me, but I will gladly do it. So he did. And so that is summer of 2016, completely sober of drugs. And he just, just completely gave them up right away. Like that's the only time I've ever And he just completely gave them up right away? Like that's the only time I've ever heard someone. He did hospitalized to detox for a bit. It really went off without a hitch, if I'm honest. It went very smoothly and as good as you can hope, honestly.

However, because he did seek help, the appropriate channels, that is in his history, his medical history. It is documented all over that he has a drug problem or had a history of drug use. So that is very key also to his story. And so once he got sober from drugs, the use of alcohol and tobacco grew. To replace the drug use, we then compensated with more alcohol.

And at the height of his addiction with alcohol, he was a 120-pound guy, and he was drinking three 30 packs of beer. Beer was his choice. 330 packs a week for himself. And this was a big issue for me. We were married but we were still living with my parents. So while Trevor was drinking he would get routinely suicidal and when I say suicidal it was bad so very frequently when he was drinking feel very depressed. I did get him to the primary carer and that was a struggle. He didn't even want to go to begin with and I kind of forced him to go. And so his primary care doctor, the way she at the time explained it to us

at his appointments was he's drinking a depressant. So since he's bringing himself down here, I need to give him a depressant to try to level him out. And so she gave him Lexapro, which is a very common antidepressant. And so he started out at a low dose while drinking, which is not recommended, but she knew that he was going to continue drinking. And so she was like, I'm going to give you an antidepressant because you're drinking a depressant. So I need to try to level you out a little bit. And so we started out at a very low dose.

We started out I think at like five milligrams and he was still drinking. Didn't seem to be helping. I mean obviously no medication you're supposed to really drink on and And she knew that, but we had to go with what we knew what was going to be happening anyway. And all she could do is recommend him not to and whether he followed suit or not was on him. Right? So five milligrams didn't work. Ten didn't work. Twenty milligrams of Lexpro didn't work. didn't work, 20 milligrams of Lexpro didn't work, he ended up right before going and getting sober from alcohol being on 30 milligrams of Lexpro in the morning and 10 at night. And while he was in

the active part of addiction, it really did seem to help keep him more stabilized. And then we were married for a little over a year, August, July of 2018. I hit my breaking point. He got off of work at 2 30 in the afternoon and I got off of work at 4. And by the time I had a 30-minute drive home, which would put me at 430 PM getting home, he was almost always completely passed out drunk already. It was just so fast. And there was this hot summer day at the end of July and Ange just completely hit a breaking point.

So he actually- I love how Angry You has a different name, you're Ange when you're angry. Angela's here to tell the story, but don't mess with Ange because she'll come for you. Yes. No, she's vicious. So it was very hot and he raced go-karts at the time. He was in a little go-kart and he was prepping the tires. And by the time I got home at 4.30, he was completely passed out drunk on top of a pile of tires, like in the most uncomfortable looking position

you could imagine. And this is where the normal me would have like, hey, get up, let's go into the house. It's really hot out here, come on, let's, you know, and I practically carry him inside. But on this day, I had just had enough. I was at my breaking point and I ended up just shutting the doors to the go-kart trailer.

I let him in there and there was a vent. He wasn't going to suffocate. I was like, big and vicious. Yeah. So he was not locked in, but I did shut him in. And it wasn't until about 3 a.m. the next morning that he came stumbling into the house and he was very mad. In the middle of that, And had a rage and smashed all his beer against trees because we have trees down back. I was just so mad. Like I should mean more than alcohol. You didn't even get to say hello to me afterward. And I ended up smashing all his beer on trees and I dumped the rest I called his family and I said I've had enough you guys don't see him in his day to day

but I do and we've gotten to a really bad point and something has to change and so I Said hey, I'm taking his debit card and I'm locking it. He's not going to be able to use it. I took all the cash out of his wallet, which wasn't much, but I did take what he had. And I said, I've had enough. And you have, you know, chose your poison now.

You can stay here, you can go to your sister's. I don't care what you do. At this point, I'm okay with divorcing if this is where it leads and He was not okay with that. So he ended up continuing to work. We had the silent treatment for a couple days and Ended up that he started detoxing at work and he actually worked with my mom at the time and detoxing at work and he actually worked with my mom at the time. And so my mom called me and was like, hey, something's wrong with Trevor. I know you're at work, but like he needs help.

And I was like, screw him. I don't care. Am I allowed to swear on here? Oh yeah, go for it. Okay. Cause I said to my mom verbatim on the phone, I said, no, I'm not coming home from work early, fuck him. I cannot deal with him right now, fuck him. And she's like, no, and you're not understanding.

He is talking about detox and getting help for the alcohol issues, you need to come home. And I was like, well, it's not anything that I can't wait an extra 10 minutes till I get off of work and get home. Like I said, fuck him, it's not anything that can't wait an extra 10 minutes till I get off of work and get home. Like I said, fuck him. It'll wait." And she's like, I don't think you understand.

It's like, I love you. I love you so much. You don't take shit from no one. No. And that also comes into play later. I am an advocate. I also work in healthcare. Somebody has to stand up for these people.

So if it's got to be me, I'm going to stand my ground. You have to stand up for them, but you also have to stand up to them when they need to make changes. Yes. Angela, when Trevor detoxed the first time from the drugs, were there any continued follow-up in terms of going to like NA meetings or continual appointments with psychiatrists? No, no, there really wasn't. And he is such a tough egg to crack. Like I was lucky to get him two appointments. I could be like, hey, they want you to follow up.

Hey, they want you to do this. And it's like, oh yeah, I'll do that. And then come time, yeah, I'm not going. It was a constant struggle. And that comes into play later again also in the story, but it was very hard. He ended up going away to rehab for an entire month from alcohol. The drug rehab was short, sweet, it wasn't that brutal which you would think it would be the opposite but it wasn't hard for him as hard as the alcohol was. He ended up doing a total of 28 days at

alcohol rehab and the follow-up of that was AA meetings which he talked about his previous drug use at those then but it was actually a lot rougher. He did injections to make sure that he wouldn't just drink again, it would make him sick if he drank. Those types of things. He had much better follow-up post alcohol use versus drug. And so again, he did all the correct channels to get sober. So that is everywhere in his medical chart. So he came home around the end of August of 2018. And so now we get into the actual medical mystery. Okay. So he went, got sober, did all the things,

followed his prescriptions and he had follow ups, but really he was doing okay when those follow-ups happened because they happened right after, you know, like it's like, oh let's see you one week out. And so at that time he was doing really well. He seemed to be good. He was playing with the dog in the evenings. Like he was good. Life was good until around Thanksgiving. And so Thanksgiving of 2018 is when things really started going downhill. Like he's throwing up all the time

and I just don't understand why. I'm like, what are you eating? Like at first I was like, oh, you overindulged at Thanksgiving. It makes sense. Don't eat so much. You're in the holiday season. You're probably just munching on cookies. Like slow your roll, Trevor. You know, like it makes sense. Put the pie down. Put the pie down, Trevor. Yes. You just cannot eat all of this junk and expect it to be okay. Your gut's telling

you no. And so then we're rolling into the beginning of 2019 and it's continuing. And I'm like, this is just weird. And he would have good days and then he would have really, really bad days. And it just helped me understand the difference between a good day and then he would have really, really bad days. And it just helped me understand the difference between a good day and a bad day. Like what would a good day look like? And what would a bad day look like? A good day is like he would go to work, be fine, come home, not a single throw up episode at all. A bad day would be like, he always has a little bit of like hand tremors left over from his

history of the, I'm going to say it wrong, Guillain-Barré syndrome. He has left over tremors in his hands from that. And so there would be really bad days where he would go to pick up a pen and it would just, I mean, just wiggle profusely. And he would throw up till he's got nothing left in his belly until it's just bile coming out. And there was many hospital visits, you know, you're dehydrated now because you can't keep anything down. And so we had many hospital visits where it was just saline given and some Zofran and common anti-nausea med.

With unexplained nausea, go home, take it easy, drink electrolytes and follow up with your primary care. Okay, we did that the first couple times and she's like, oh well, you know, the next day it was better. And it's like, yeah, because he had Zofran in an IV, but then our luck is the next day, then it's back. And it just felt like no matter how many times we went back to the ER, no one was listening to us.

It felt like they saw his history of addiction on his chart and just wrote him off. And I felt that at the ER every single time, like they wouldn't admit that they were doing a drug test. They would include it in like a urine screening for a UTI or something like that. And they would never bring it up. But I have access to the internet portal,

like the chart electronically, so I could always see that they did test. But then even after it came back, negative time after time after time, still no one took him or his symptoms seriously. Did he have a primary care doctor? Did he have anyone longitudinally seeing him? Yeah, so he did have a primary care doctor,

the doctor that actually was prescribing his antidepressants still, but the primary care was who he was primarily seeing. And so we had ER visits and they say, follow up with your primary care within a week. Okay, fine, he would usually get in within the next couple days and he would be good during those days because he just had medication,

he's not dehydrated now from all of the vomiting and things like that. So we just kept down this road and they're like, okay, you need to go and see gastro. Something else might be going on here, you know. So we go and see gastro and they're like, you know, you should do this gastric emptying study and see what's going on. Maybe you're not adequately swallowing, your body's not emptying it, let's do that. Okay, you got it.

We'll do it. So he gets there, I'm there for this. They gave him eggs to eat. Per him, they are scrambled eggs. Radioactive scrambled eggs is what he called them. Wait, they're radioactive? Are they really radioactive? So they have like the dye.

The tracers. Yeah, they have like the dyes and really radioactives? So they have like a guy. The tracers. Yeah, they have like the dyes and things in them so that they can adequately image as it's going down. And so he eats the eggs in front of the technician and all is well. And they say, okay, we're gonna scan you right now. They do the scan, everything looks good.

They're like, okay, come back in two hours. Make sure you are here exactly two hours from now. The timing of this test is crucial. And so we decided, you know what, we're just going to wait. We're just gonna chill in the parking lot, and we'll just wait. Well, walking out to the parking lot, we get to Trevor's truck, and he throws up most of the eggs on his truck tire.

Like it just hits him. Like just bam, done. There was no like taking anti-nauseas to try and keep them down. It was just bam throwing up their quote unquote radioactive eggs. So we continue to wait the next two hours. Anyway, he goes back in and he says that he tells the tech that he threw up probably most of the eggs that he ate and they're on his truck tire. And she's like, okay, well, they continued with the tests anyway. And so whatever was remaining at the end, they told him that the results are normal. And I'm like, how can this be normal? He threw up over half of it on his truck tire.

Like, this cannot be correct. But who am I? I'm not a nurse. But you're kind of, you're halfway there, like you're in, you're in, you're a CNA, right? Yeah, but like at the end of the day, I'm to them, I'm the wife, you know? Like it's like, I don't understand how that's normal, but okay, so we go back to Gastro

and they're like, let's do an upper endoscopy. And that's essentially where they just do the camera down your throat. So he did that, that all was good. Innocently, they found EOE, which is, Erin, I'm gonna need assistance on saying this. I think it's eosinophilic esophagitis, which is an eosinophil is a type of immune cell like the T cell and the B cell and the mass cell, right?

So an eosinophil, which is also one of the cells that is one of the markers for autoimmune conditions. So esophagitis means an inflammation of the esophagus. So this is an inflammation of eosinophils in the esophagus. Yes. Okay. And then, so gastro, then we go back and they say, oh, well, you need an anti-inflammatory. It's probably heartburn in the back of your throat that's making you throw up.

And so we're like, okay, cool. So they try omeprazole, doesn't really seem to be helping. So, oh, let's try Prilosec. Okay, we'll try that. And each one of these, we trialed for like a whole month at a time. Gotcha. So we're not just like one week and oh, that's not working.

It's a legit trial period where we're trying each one to see what works best. And this is like heartburn medication. Yes. Made to help like coat the stomach and try and prevent the acidic contents that are supposed to live in the stomach from exiting. Yes. So we're giving these very much a real trial and it really just does not seem to be working. He's still throwing up almost all the time.

Again, there's good and bad days, but Gastro was like, okay, I guess we'll do a scan of your abdomen. And so we did abdominal ultrasounds, we did abdominal CTs, and a height of scan to test your gallbladder. So first came the height of scan of his gallbladder. And essentially they're just testing the function of the gallbladder to see like, is it too slow? Is it too fast?

What's going on? So they actually found that his gallbladder was functioning at 92%, which is actually very high and almost too high. They actually called it hyper-functioning. And so Gastro said to us at that appointment, actually most people when they have their gallbladder removed, it's functioning too slowly.

And so actually maybe part of his problem of the vomiting is that it's functioning too fast. And it can't do the right things because it's trying to go too fast. And it can't do the right things because it's trying to go too fast. So they recommended he have his gallbladder removed. So he had his gallbladder removed. And we have also had this scenario happen before on our show with a gallbladder removal for incorrect purposes. I just wonder how many people have their gallbladder taken out incorrectly. I'm assuming that he

did not need his gallbladder out based on the fact that we are not at the mystery yet and that you would have not been so angry in the way you said he took his, so we had his gallbladder out. I mean, there was some sass on the end of that. Yeah. Because at this point, this was the turning point where Angela went away and the Ange started coming out. We love Ange. I'm like annoyed.

I'm like, we need to figure this the heck out. He's losing some pounds here. He's throwing up all the time. He can't eat anything. At this point, we're not even some days keeping down water. He needs some type of nutrition. So we get his gallbladder removed. All goes well.

Had no issues. And so he has follow-ups with gastro because he had his gallbladder removed. How you doing? Oh, well, I'm okay. Okay, good. Well, you can go back to work now. And so he goes back to work and really things were okay

for probably about two weeks. He felt great. He had no vomiting episodes. Life was good other than he was just recovering from a surgery. And then all of a sudden, two weeks later, he returned to work, life resumed as normal, and that's when the vomiting started. And just to paint the picture, we are still living with my parents because he's so sick. He's missing work some and he's working night shift and he

really struggled during this time. It's just a really lonely feeling like he's going to AA and everyone else is feeling better but I'm sick. I can't stop throwing up. He told me before he would be like, did you have really weird nausea hit you? Like, and they're like, no. Like, oh, I'm the only one. So it was just a really struggling time for him. But really what kept him going was our dog Rico. He was his purpose to keep going because there were many very low days where it was. I'm better off just dying at this point. I'm withering to nothing and I'm better off just taking the hit and being done, essentially,

which is really hard to hear your spouse say. I think you'll be better off without me because I'm sick all the time. You won't have to deal with appointments. You won't have to deal with me throwing up. Well, Angela, I just want to happen because this is part of what I had given this TED talk a couple of weeks ago about the stages of misdiagnosis. And that is the last stage stage is apathy. It's that you just stop caring. Many people have those feelings and many people go on to actually commit suicide. And that is something that I think people should be aware is a potential stage. And to one, to understand that many people have those feelings, but there are ways to kind of divert from those stages with the support that you're providing and the purpose that your dog is providing, right? But that we have to recognize that

that is a stage. Yes. And so I, at this point, was trying to remain so positive for him. I'm like, no, it's okay, we got this. Like, this is why we're still living with my parents. We're just setting ourselves up for a better future. And that's how I validated it to him. And even still, it was, I'm going to be paying these medical bills back

until my grandchildren aren't around. It was a lot. And I know that it sounds like it was only like a little bit here, a little bit there, but it does really truly when you add it all together, it's a lot. So it was just this really big struggle. And we, I think, hit all the stages of grief

It was really really tough and we just proceeded on for a couple months We're at fall at this point of 2019 we had a couple ER visits where it was just the diagnosis of unexplained nausea and vomiting they would give him a bag or two of saline and give him a prescription for Zofran and send him on his way. And yes, you're supposed to follow up with your primary care after each one of those, but he is very much your typical man. And he was like, what am I gonna say this time? It's the same as last time.

There's no point in me going. I'm not going to that inch. And I'm like, you really should, you really should. You know, and it didn't matter. I could no longer convince unless it was something completely different where I had some extra something to say with it. We really need to because XYZ.

It was a struggle to get him then to appointments. And this is why it was so hard at the ER. I'm advocating for him. I'm like, this is what he's telling me is happening. He's having this happen at this time. And like they're looking at him like, aren't you a grown man? Why can't you tell me this? You know, and it's like he just tells you, oh, my stomach hurts.

And I'm like, it's his right upper quadrant. I'm trying to be more specific. And in the back of my head, I know that I'm just making this look terrible because he has in his chart history of drug use and alcohol use. So they think we're just seeking some type of medication to make him feel better or just make the pain go away. And that's not what we want We just wanted him to feel better and not vomit all the time

And I've never even heard you once say the word pain. Yeah in all this time Yes, and nothing was ever taken seriously at any of the ER visits. It was just Get him in get him. And you could tell. And so then I started putting my foot down. I'm like, listen, something is going on. I don't know what, like here's his medications. Let me tell you the whole story. Like he has a history of this, this and this and this. Please let me tell you. Like somebody sit down and listen to this. There's got to be something going on. It was so incredibly difficult to be in this spouse position because I don't have those things on

my medical chart. So I know that if it was me having these symptoms, I would have been taken more seriously immediately. And there's a lot of regret. Like I wish I could trade places with him tenfold every time. However, that wasn't the cards we were dealt, unfortunately, but it was incredibly hard to watch because I felt so helpless and I felt like there was nothing I could do for him and I wanted to do everything for him but I could only do so much. And so I'm just getting frustrated and we're just, I want to say, figuring out life for a couple months.

Like, we're not going to appointments. He still has a stockpile of Zofran from all these ER visits. And so when he needs it, he takes it, and we're just living. And at this point, I am so caregiver role versus wife role. I'm just trying to make him feel better with anything. And we are experimenting with foods at this point. Okay, maybe this is your trigger.

Maybe you can't eat this. So I actually did a allergy test online where you, it's one of the very basic ones where you use like a lancet and you drop your blood onto this thing and you send your blood away and they give you allergy test results. And in the allergy test results, he found out that he was highly allergic to the egg whites of eggs. And he found out that he had a sensitivity to gluten and milk.

Okay. So we are now eating nothing with gluten, nothing with dairy, nothing with eggs. And you can imagine how hard that is. We were literally eating meat and vegetables. That was essentially what we could have. And I'm doing this with him because I'm like, you can't just not eat. I can't do that to you. I can't sit and eat a cupcake in front of you. You know it's love when you give up bread for someone. That's why I know it's true love, right? Yes. It was just so bad.

We were trying anything at this point. We were like, okay, we need to go see a natural doctor. We were going down that path and the time span to get into doctors like that is very extensive around our area. We live in central Pennsylvania, which has a lot of Amish populations. So the list to get into those types of doctors is just very extensive.

And of course, again, the financial aspect is they don't take insurance. So you're paying straight out of pocket for everything. But we were on a list. We were ready. Like we need to do something. We were doing anything we could at this point to make things better. So he had his final appointment at Gastro in December of 2019. And really what got him to that point was he had went to a different hospital for an ER visit. So they referred him to a different gastro doctor.

And at that point, we thought, what the hell? We might as well try somebody else. The one that we're seeing currently isn't working out. So we might as well try a new gastro doctor. And so we went and he didn't really say much. He just said, well, I could redo these tests, but I just feel like that would be really useless. And I'm going to prescribe Reglin a small dose,

10 milligrams, and we are going to try that because it will, like the risk of taking Reglin is worth the possible reward because Reglin has a lot of complications that come along with it and possible side effects. So we went to the pharmacy, picked it up, nothing was said, everything was A-okay, and so he started taking it like he should.

And he just continued on for the next couple of months. Still had the episodes, but they were anything more than the normal. And it wasn't until the morning of March 4th of 2020 when he had his worst episode yet. Trevor had went to work and he worked night shift and they sent him home early and I was sleeping. Again, we are still living with my parents at this time because he's so sick and we're about a year and a half

deep of not understanding what is going on with him. And he had came home from work, he was very sick, He was making a ruckus when he got home. He could barely walk. The dog was very confused of what was going on. I actually really truthfully believe that he was I ended up, my mom beat me out to the living room because my mom heard something going on and was like, what is happening? And here his work had sent him home and he's falling around in the front door trying to stand up, cannot walk straight. He's talking completely off the wall. He was looking at our dog and was like,

oh my gosh, keep them away from me, they're coming at me. And like he was seeing multiple dogs that I don't think were our dog actually. And so I'm like, something's going on. He's slurring his speech. So my mind went, oh my gosh, he's relapsed. He's so depressed. And I'm like, Trevor, Trevor hitting him alongside the face, like, look at me, look at me. And he's like, what, what? And I'm like, who am I? He's like, and what? And I'm like,

okay, you know who I am, but what's going on? I was like, did you take drugs? Are you drinking? What's going on? And he's like, I don't know. What do you mean? And I'm like, you're talking off the wall. What do you mean?

And he's, what do you mean? And I was like, go to the bathroom. Like you just came home. Like go to the bathroom for me. And I'm watching him walk back our hallway and he's staggering, like he's drunk off the wall. And I'm noticing his right side is not working like it normally would.

Like his foot seems to be dragging. His right foot is slow to react, his right arm is slow, and my mom, like I said, is up at this point and she's like, Ange, you've got to take him somewhere. He's not okay. You've got to take him to get seen. And I just remember looking at my mom and I was like, but where do I take him? We've gone to every hospital in this area within like a hundred mile radius at least once and they've done nothing for him.

Where do I take him at this point? I'm just going to wake up one day and my husband's gonna be dead beside me. Like, I don't know what else to do. And my mom looked at me and she was like, I don't know, I guess we take him to John Hopkins. And I'm like, okay, yeah, let's do that. So my dad helped me carry my husband to the car. He staggered, my dad and I bared a lot of his weight because again, his right side was very weak.

He was actually presenting stroke-like symptoms to me. And the right side of his face was even starting a little bit. And I'm like, I can't just stop at any hospital. Like I have to get him somewhere I know is completely out of the system of networks that he was in the past. So from central Pennsylvania to Johns Hopkins

should have been about a four-ish hour drive, maybe a little less, and I did it in two and a half. So we get to the drop-off area. The guy brings out the wheelchair, helps me get him into the wheelchair. We wheel him right to the ER and the nurse basically triages him right away. And that he had never had. It was always waiting three hours just to be triaged, like insane waits. And they didn't have any of his records in terms of like, so he was starting from new. He was from scratch. He was no history, no nothing. The nurse just looked at me as she's

taking his blood pressure. His blood pressure is always very normal, like 120s over 70s. Perfect, beautiful. You know, he's a 24 year old guy. It should be beautiful, right? So she takes his was like 120. And this is an automated cuff. So she's like, hmm, that seems a little wack. Let me do it manually with the squeeze ball. I'm going to do it that way. Same thing. It was absolutely correct. And I was like, I'm gonna tell you, his blood pressure is always very normal. Very normal. Like, I very much mean, like, he is the standard 120 over 70, heart rate 60 type of guy. This is not normal. And I'm explaining to her, we're trying to figure out what's going on with him. He's vomiting all the

time, but he does have a history of guillain barret. And she's like, okay, but Trevor, I need you to look into this light. And she's holding the thing at his eye. And she's like, are his pupils always this dilated? And I'm like, Trevor, look at me. Trevor, look at me. And I'm like, Trevor, look at me. Like, no, they're not. They're not always like this. But I'll be honest, I never really stared too much into them. Like I never really did that to him.

Again, he's not one of my patients. He's my husband. I'm not doing those things to him. And so that was the first like, oh my gosh, we might be getting somewhere. They're actually looking at him. And so he ends up going straight back. They start giving him IV hydration,

like saline, anti-nauseas, yes. And I'm like, oh shit, we're going right down the same road. I'm feeling frustrated. They've done all the tests, the urine sample. I literally had to help him get his urine sample because he couldn't. He couldn't stand up and he is still just completely off the wall.

And so they take him back to the room and the test results come back. And when I say there's doctors, I mean there's doctors everywhere. And he had three attendings and he had at least 10 residents and or fellows. I'm being asked every question under the sun, every question, One specific fellow.

He's like, ma'am, I tried to talk to him. He's not giving me much. He really didn't even tell me his birth date. Can you tell me what brings you clear from Pennsylvania today? Can you just tell me what's going on?" And he's sitting down looking at me and they say that that makes a difference and it really does genuinely make a difference. You don't feel like you're being literally talked down to and I felt so relieved. Somebody just wants to hear what I have to say, and they want to know what is going on. Every appointment, every ER visit, they always tested urine, they always tested blood, and there was always a drug talks. They always screen, it always came back negative every single time. And they did the same. And I

would expect nonetheless, the way he was acting that day, not even knowing his history, they just had to roll it out. And so he was like, tell me everything. So I spilled my guts to him. Were you afraid? Were you afraid to tell him? No. I told him and I actually told him, you know, I do feel like he wasn't listened to. I feel like no one took him seriously because in his charts there, it was all over that he had a history of drug and alcohol abuse and he wasn't taken seriously. And he was like, I understand and I also can't say that I blame them because from a clinician standpoint,

you do have to take that into consideration. And I understand, absolutely. I do, I really truly do. But when you see that he's been so in and out and he's tested clean every single time, I just wanted somebody to take that to heart and be like, okay, something else is going on. But we never got that. And he said to me, ma'am, I promise I'm going to do everything I can to figure this out

for you guys because in this type of state that he's in right now he can't leave here and I was like okay and then he came back in and he said to me well I did it and I'm like what do you mean what did you do and he goes I think I figured it out I think it's serotonin syndrome. And I'm like, okay, wait, excuse me, say that again. And he said, serotonin syndrome. And I said, again, one more time, for the people in the back, can you please tell me that again?

And he said, ma'am, his diagnosis is serotonin syndrome. And I said, okay, I know I told you I have a medical background, but again, I'm not a nurse. So I need you to thoroughly explain this to me. What is serotonin syndrome? And he said, actually, the easiest way for me to tell you this is that his antidepressants, he had too much.

And actually at the end of the day, you guys were causing his problem because you were following his prescription and they never readjusted his dose and he was doing okay, but then the SSRI component was building up too much in his system and it's causing all of these problems. And what we're gonna do is we're going to admit him. And I'm like, wait, I'm sorry, slow down. It's been a year and a half. And this is the first time

where I'm getting a legitimate diagnosis and it's not just unexplained nausea and vomiting because at the top of every page today's diagnosis was unexplained and so I'm sorry can you say that again to me? You're telling me he has a legitimate diagnosis. And he said, yes, ma'am. And it is serotonin syndrome. And I'm admitting him to the hospital for probably at least three days. And I said, oh, OK, can I tell you another thing?

Out of all of the ER visits that he's had, he has never once been admitted. It's always an in and out ER visit. And so this is actually our first hospital stay. And I just remember having this deep sigh of relief, but yet also sadness in my heart, because it's like, I don't know what, I didn't know what to say.

I had so many emotions hitting me all at once. It's like, oh, is this just gonna be another diagnosis that was innocently found, or is this gonna persist after this again? Are we gonna fix him up for a couple days, and then we're gonna go back to square one, and we're this again? Are we gonna fix him up for a couple days and then we're gonna go back to square one and we're vomiting again? This is the first hospital visit, but is this gonna work?

It was every emotion is what I had. And I was trying to be happy that we actually had a diagnosis, but I would be lying if I said I didn't have a sense of fear in my gut that this was just gonna be not the end of it. And so they admitted him to Johns Hopkins for three days. They ended up giving him slowly about 20-ish bags of saline. They completely wanted to flush his system out. No Bags of saline. They completely wanted to flush his system out. No drugs at all, like even anti-inflammatories or anything like that.

Just saline. They gave him 20 bags over three days and by the next morning, he was already starting to feel better. Hadn't had one vomiting episode and he would never go three days without vomiting And so by the end of his hospital stay He was completely fine completely fine and Walking talking he did not remember coming home from work early that day He did not remember talking off the wall.

He did not remember the drive to Johns Hopkins. He did not even remember the entire first 24 hours of being admitted to the hospital. And he'll tell you that now also, like he has no recollection of most of the time period where he was so sick, but especially that hospital stay. Most of it he does not remember. How pissed off are you? I was incredibly pissed off. Actually, I didn't really know what to say. He was on Reglin and he was on Lexapro.

And at Johns Hopkins, they said that the two really should not be combined. So the gastro and the pharmacy really should have caught this that they shouldn't be used together. So case managers were like, I'm not telling you what to do, but you really should look into maybe possibly suing and we're just not really those people. Wouldn't even know where to start, if I'm honest. But essentially they ended up validating that the Lexapro was just too much of a dosage on him, especially in combination with the Reglin

to help with the stomach issues. But he had 20ish give or take bags of saline prior to discharge from Johns Hopkins, and he was my husband again. He was good, He was really good. So then I won't lie, we really never had true follow-up post-hospital because the whole world shut down. Please tell me you have a new primary care doctor.

Of course. So I want to give some background as to what exactly serotonin syndrome is because I think this is something that probably is a new condition for most people who are listening. So lexapro and many other types of antidepressants, the category of drug is called selective serotonin reuptake inhibitor. How serotonin works is you've got a nerve here and a nerve here. They're trying to transmit signals to one another. When they take up the serotonin,

they, like a Pac-Man, eat the serotonin. And so there's no more serotonin left in the system to be utilized. What an SSRI does is it inhibits that uptake. It doesn't allow the Pac-Man to eat the serotonin. So the serotonin stays around longer. And that's supposed to then help increase your mood. If you have too much serotonin, there can be consequences. The consequences are what's known as serotonin syndrome. In its mild form, it may present with some nausea, some vomiting, maybe a little bit of agitation. In its most severe form, when there's way too much serotonin, you can start having tremors,

you can start having seizures, you can start having mental status change, stupor, confusion. So basically, Trevor had been exhibiting these mild levels of serotonin syndrome for the better part of a year. And it was just this addition of a new medication that put him over the edge to now he's having the severe form of the serotonin syndrome. But what I asked in the beginning about who was prescribing the lexapro in the first place, and when I heard it was not a psychiatrist and it was a primary care doctor, it's not that primary care doctors should not be the ones to prescribe these SSRIs. However, if you are going to prescribe a medication, you should also be comfortable with managing

the side effects and being able to figure out what the side effects are. And so what it seems like happened is that the person who prescribed this medication did not recognize the side effect and unfortunately it went on as a misdiagnosis for years. Yeah. It was incredibly frustrating, incredibly. But I also want to point out that what that fellow was saying in terms of how he wasn't surprised that the other physicians were thrown off by his history of substance abuse because the withdrawal symptoms from drugs and alcohol are the same. They basically are the same. However, the fact that he kept testing negative for those substances, it shouldn't have been like, oh, well, he's probably going through some withdrawal symptoms. But that is something that they are very similar

in terms of those symptoms. But I think the bigger point is that Trevor was most likely just put into a category of person and he had his story written for him. Right? Correct. And it was so unfortunate. And like I said, I had every emotion. I was angry that it was something as simple of a fix as that. But yet I also was kind of also angry at Trevor because even though it's really not his fault, in my heart I was like, if I could have gotten you to the primary care

most of the time, she probably would have been like, oh, I never brought down this dose and you're not drinking anymore. I doubt she was even able to handle, to understand. I think it's just a great lesson for people on medications in general in that you have to understand, you don't get something for nothing when you take

a medication. What a medication is doing is we are trying to artificially change the chemical milieu of your body. In doing so, you are messing with the normal pathways that go on. Now what you said earlier is sometimes the reward outweighs the risk. So in this case, he is totally depressed. He doesn't want to live anymore. So we're thinking that the reward of keeping his mood stable is worth these side effects risks. But in the end, you have to understand like, well, what are the risks?

And if you don't know what the risks are to begin with, how are you ever going to catch that? And if you can go on Reddit right now and see, like for example, I believe it's well, Butrin, one of the side effects is crazy hypersexual urges and dreams, but that's not something that most doctors are talking to about with their patients. And these people are finding others on Reddit and saying,

oh my God, like I thought I was just this sexual deviant and whatnot, no, no, it's a side effect. But you don't know it until you collect these stories from enough people to say, yes, this is a side effect. I also think like, how do you talk to your doctor about that? Right? Like we... Correct. You wouldn't even think to bring that up to your doctor. Like, why would you ever even... Like, why would you ever even? Like, I'm here for vomiting, not that.

Correct. Correct. But it is something that, and I literally just had a patient last week who I prescribed a, it's called a Medrol dose pack, and she was uncomfortable with the potential side effects. And I said, then we're not going to do it. Because in the end, it's your choice to make that risk reward calculation. So what I'm taking from this is whatever you get prescribed something, you should have a conversation about what the choice is you're making to take that medication and what effects it might have at the very least. so you can be aware if those effects are present in your life. I think sometimes in my life, I've definitely like just been

like, just give me the pill, whatever that pill is, I'll take the pill, I'll feel better, whatever. And I've never ever thought to have that conversation about, okay, if this goes south, what does that look like? But in this case, even talking to the doctor didn't have an effect. Wow. It's a lot. I do want to point out, Ange, that this is when I talk about the ways that you can divert from those paths of depression and apathy. And one is having your North Star believers. Obviously, in Trevor's case, you were one of his North Star believers. Obviously in Trevor's case, you were one of his North Star believers, right? You never gave up on him.

You continuously kept trying, even though you kept hitting the wall. And then that medical fellow who said like, I am not leaving you until we figure this out, right? Yes. It was so validating for him to, like he said, and I just can't believe you've made it this far. And then he rounded back, like he circled back after diagnosis and just commended me.

And that was incredibly validating. I'm so thankful for him. And it was just so frustrating also at the same time. Like, thank you for validating me, but I'm so frustrated this couldn't have been figured out so long ago. And he said to me, I don't know how he has made it to this point. How did he go on this long? He must have been just exhausted. And he didn't really have much of a response. It's that white coat syndrome where like, I don't want to talk to doctors, no offense, Erin, but like, it just, it was incredibly challenging to get him to open up and to talk about things, anything,

literally. And I want to call something because there is a name for this problem and it is called iatrogenic injury. That means that we, as the medical profession, cause this and this is what this is. That's our word of the day. Iatrogenic injury. And we don't like to talk about that, but whether you call it an iatrogenic injury, a medical error, right?

I do not know how... And listen, I think the pharmacists are literally the backbone of the entire medical system because they are catching medical errors left and right, but this should have been flagged. And so there were probably multiple points where this problem could and should have been identified. And I think probably I can imagine for you, one of the most frustrating part is where's the accountability? Yes. And Johns Hopkins really, I think it was a case manager maybe or insurer, I forget exactly who because we are talking over five years ago now.

But somebody did come in when Trevor was still very out of it and basically did tell me like, I can only advise you of what to do, but I'm going to tell you this should not have happened and this should have consequences. And I'm like, I just know that Trevor will never do that. Like, he is not that guy. We are not that family. Wouldn't even know where to begin type of people. And I'm already over my forehead in medical debt now because of this. I don't need

to be adding lawyer costs and things to that nature to my plate. So we just went on about our lives and he was really, really healthy. Angela, thank you so much for sharing your story, for sharing Trevor's story. I want to thank Trevor for giving you permission to share his story. And I think there are so many women who have partners and they don't know how to help. They don't know what their role is in trying to help with a medical issue. And I will tell you that the number one best thing you could have ever done was to believe him. And I think that you are why he is still with us today. Thank you. Thank you for that. That was a hard episode to listen to because I kind of walked away from it, realizing that

I have judged people that have had pasts with alcohol and drug abuse, and I have been part of the problem in part of my life and how I've seen people in their actions. And I think that, yes, the story was told in a medical setting, but for me, I'm applying it a little bit more broadly in thinking we all need to give people, you know, what, and I don't want to say earned because that's the wrong way, but when someone goes and makes a major change in their life, we often don't give them rewards, the wrong word. I'm struggling to find the right words to say this, but we don't, we don't give them what they deserve. And we set them with those labels that they hold for forever. And even though this episode was about medical context,

I am personally taking it as, you know, how do I apply these labels on people in my own life? And how am I doing that unfairly? Because I think that, again, this is an episode about healthcare, but I think a lot of these issues go well beyond health. They affect us as a society and we can't expect people to change if we don't reward them for doing

so. And I think that that's just something that is playing loudly in my head right now. And what Angela spoke about is the first thing that was probably in his chart, right? This is how we categorize people. 24-year-old male, history of substance abuse presents with nausea, pain, and like most things in medicine, it's pattern recognition. And what's the most common thing for someone who has a history of this? Well, they're having withdrawal symptoms or they are probably having effects from drugs and alcohol. I mean, listen, he continuously tested negative. So it's not as if we can say like, okay, they were wrong to suspect that. But it's about broadening your potential for what could be the problem. And sometimes it is not what you expect it

to be. And that's okay. But the fact that he was never really, you know, I don't want to say he wasn't really worked up because him compared to actually some of our female guests had more work ups, right? He had HIDAS scans and CT scans and had been ultrasounds, had an organ removed. So he wasn't not getting any treatment, but in the end, they just, they couldn't, I don't think they really ever got past the history. It honestly makes me wonder like if this was a woman that went through the same thing, if they would have had all those extra care points as well. I mean, we won't know because we aren't telling that story today, but it's just, it's interesting

to see if it had been double labeled, what would happen to the individual as a result. I also was just thinking when you said, just mentally what comes into your mind when you say 24-year-old with a history of drug and alcohol abuse, immediately that picture is negative. Because it doesn't matter. That's what we've been trained to see. And that's societal. I think what also is really fascinating about this

is that he was also in a position where he really couldn't advocate for himself. One, because it's not in his personality, but more so because looking at the effects of this condition, he just was barely chugging along. You can't expect someone to fight for the care they deserve when they're incapable of just making it through the day. Why I think it was so important that his spouse told the story was because in a lot of ways she was the person who actually made sure he got care because he was unable to do it for himself.

Yeah. And I think a lot of partners who have been in that position, it's so hard because you don't know exactly what they're feeling and you can't be that actual voice. And so you try your best, but you could even... She said it herself. It was like, I blame myself at some points for not recognizing this or whatnot. And in the end, you just, you do your best, right? You are you are trying to advocate, you are trying to be their voice. And it is better than the alternative, which is probably him.

He would have never gone to the doctor. He would have never even gone to the ER. And his mystery probably never would have been solved. So as I told Angela, I think the number one best thing that you can do for your partner is to believe them and to give your support in the ways that you're able to. When you live with something chronically, you take on this and we've talked about this with other patients as they've told their stories, this sense of burden. And I think as a partner, if you can help remove that feeling in any way, I think that is also a gateway to care because there becomes this shame and being sick, right? This shame

and that you're taking up people's energy. She talked a lot about how she would go to work all day and then she would be drained and then she would come home and then she was dealing with that. And she said it in such a nice way but I can imagine him standing from the outside seeing that he was another drain on her was emotionally probably really hard and I think if she hadn't fought for him to let her care it would have been easy for him to just never bring anything up, right? So if she wasn't paying attention and she wasn't actively trying to help him, I could see where just he would try to hide his symptoms, or he would try to go to work. And it sounds like he did do some of that, right? And I think that's where being in a loving relationship and having someone who's sick

is really hard because on one hand, getting that partner to be healthy is really important, but on the other hand, that partner feels like a burden, a responsibility. As she described it, she said she really at that point was more his caretaker than his wife. And that's a position I think a lot of partners feel like. It's really hard because it's in addition to, but for a lot of times, I think they feel like that is the primary purpose right now that they're serving. I really hope that a lot of people who listen to this episode, listen, substance abuse, alcohol abuse affects almost every family

in this country. And it may not go to the extremes as say like in Trevor's case, but in the end, I feel like this really is a story of success and hope. And that even when you are abstaining and life throws you hurdles, you still are able to abstain from alcohol. That was probably the biggest test that someone could ever have with an entire medical system being like, you're fine, we don't believe you, you know, drink some more water and still be strong in your sobriety. If you can get through that, I feel like you can get through anything. I mean, honestly, he's kind of a legend. Like I am shocked. I mean, I don't want to say I'm shocked. Like it's just so many people rebound. And I think regardless of what they

went through, he can walk away and be really proud of himself that through all of this, he stayed sober. So thanks to everyone for listening. Please share with any family or friends who you think would benefit from listening to this episode and we'll see you next week. See you next week, guys. medical story you'd like to see featured on the Medical Detectives, please email it to stories at TheMedicalDetectivesPodcast.com. The information provided on The Medical Detectives is for informational and entertainment purposes

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