The Medical Detectives - Tracy's Story: When the Doctor Becomes the Patient

Episode Date: July 16, 2025

In this episode of The Medical Detectives, we sit down with high‑risk OB‑GYN Dr. Tracy. When her own health takes a puzzling turn, she must become her own Medical Detective. What starts as vague aches, mysterious rashes, and alarmingly low blood counts quickly spirals into a whirlwind of conflicting opinions: one specialist chalks it up to a routine infection, another rushes in with a dire autoimmune diagnosis, and our guest finds herself caught between medical textbook and gut instinct. Frustrated by dismissals and armed only with her own clinical curiosity, Tracy embarks on a quest for answers that will have you rooting for every patient’s right to be heard. To continue following Dr. Tracy Shevell's story, give her a follow on Instagram or Tik Tok @tracyshevellmd!Have a medical journey to share? Email us at [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***

We just had a very interesting rest. And the reason she was so interesting is because she's a doctor. That was my head exploding. That was the noise from my head exploding. Yeah. And the message is this shit happens to doctors too. Okay. Doctors are getting misdiagnosed as well.

Now before we jump into the episode, I want to remind you guys of a few things. And those things are, if you love this podcast, if you're enjoying hearing these stories, please leave us a comment. Please leave us a rating. Click the star button. All of those things help us create great content for you. And plus we just love reading your comments. It's always fun to see them. It's very encouraging to find out that what we're creating is helping people. And that's keeping us motivated moving forward. Hi Tracy. Welcome to the Medical Detectives. Thank you so much. I'm so happy to be here.

I'm very overwhelmed guys because our guest today is also another doctor. So I am feeling, you know, a little underwhelmed with myself. I don't know the right word to say. No, we were having a conversation earlier and Tracy made a great point that the whole reason why we're doing this is so that we can present these topics in a way that people can understand them. And it's actually a skill for doctors to learn

how to be that interpreter of medical language for the general population. So I think this is going to be an incredible episode. Yay. Well, I will be the person that forces you to be that Rosetta Stone because I will be asking. I feel like this episode many times of, what does that mean? Yes, please, please interrupt us if we start going on one of the Dr. Tyrae. A hundred percent.

Ooh, this will be a new thing for me, Dr. Tyrae. It sounds kind of fun, right? It does. Well, Tracy, now that we all know that you are a doctor, maybe you could take us back to when you were younger and why you wanted to become a doctor in the first place. Okay. So I'm a high-risk OB-GYN, which means for people that don't know, I see complicated pregnancies either on the baby side or the mom side.

So if a mother gets sick or a baby has a birth defect, for example, that's me. So I get called in when everything hits the fans. So even as a young child, I always loved connecting with people. I always wanted to share people's stories. I always was a very empathetic kid growing up. I'm a very sort of hyper-sensitive person. So anyway, that's why I wanted to be a doctor. I knew it was where I was meant to be.

I volunteered at a hospital. I walked in and I'm like, I'm home. This is what I wanna do. And what was your path to OB? We can end a few episodes. So when I started medical school and I'm dating myself here, but it was sort of smack in the middle of the AIDS crisis. And so when I started medical school, my definitive plan was to do internal medicine, do an infectious disease

specialty, and then open an AIDS clinic. The last thing in the world that I thought I would do was anything surgical. You know, I went into third year with an open clinic. The last thing in the world that I thought I would do was anything surgical. You know, I went into third year with an open mind. I was very excited to get on the wards. I knew I would love everything, which I almost did, almost everything. But when I did my surgery rotation, I had a very, very bad experience. I worked at a hospital where there were a lot of foreign grads who were really miserable, who were working really long hours.

And I walked out and said, well, never have to go in the OR again. But my last rotation was OB-GYN, which I knew I wouldn't do. So I did my OB rotation and I walked on the floor to the labor floor. And I remember hearing just primal screaming. And I was like, oh, I am so in the wrong place. This is not good. Cause I, I, that's not my jam. I'm a thinker. I'm not like, well, maybe I've learned more about myself, but I didn't see

myself as like a surgeon, a badass surgeon with a knife. I saw myself holding a hand and talking about differential diagnoses. But what happened was I would see women go from these primal screaming creatures. And two minutes later, a baby comes somewhere out of them, tearing them apart one way or another. And then they are like these radiant Madonna's. Like they're just, there's a baby in the room and I cried at my first C-section. And I was with a couple residents who made a window in the uterus and cleaned off the membrane.

And the baby hand flows by and I burst into tears in the hour. So I didn't want to do OB, didn't want to do OB and I actually applied to residencies in both OB and metaphen because I was so sure I couldn't hack the lifestyle of an OBGYN and then I matched an OB. So then my career chose me. Yeah. And I'm going to say this because I don't know why people don't know this, but some people don't understand that

OB-GYNs are surgeons. Correct. Right? Correct. Yes. And I have seen this over and over again on social media, either kind of putting down OB-GYNs, not being surgically skilled, which is nothing further from the truth. So yes, just for everyone who's listening, who do you like and are surgeons.

Surgeons. And again, back to this theme of like a fork in the road almost kept me out of practicing because I loved obstetrics. I could do a C-ception, but like the, in the pelvis, all of this stuff, lifestyle of like bad assery, I just wasn't sure I was cut out for it.

And I just think that I just didn't give myself enough credit. So I matched it my first choice, which was an OB program. And then I said, I'm going to go for four years. And if I lived through those four years, then I'm done. Wrong again. And what happened was I was so drawn to the sickest patient, the biggest disasters, the black cloud on call situations, the ethical dilemmas that I saw my specialty, maternal fetal medicine, as a way to put my passion for medicine and my lack of desire to hand someone off when it got really bad.

I did another three years and did a fellowship in maternal fetal medicine and that's how I got to be where I am. Can you describe for the listeners what are some examples of cases that you would see as MFM? I mean, you know, the most fascinating and difficult cases were cases where there was a constant examination of the mother's well-being versus the fetus's well-being. So for example, a 24-weeker, a mom who's 24 weeks pregnant with a baby that's not growing well in the uterus, who winds up presenting with super high blood pressure, liver failure, kidney failure, and has what's called

severe preeclampsia. And the cure for preeclampsia is removing the placenta, which is the organ that you have only during pregnancy that causes preeclampsia. We still don't know how. We still don't know why. Taking the placenta out delivers a 24-week baby that has a 90% chance of long-term serious morbidity or handicap. And so those kind of cases when both lives were in the balance and how to handle both

things, I wanted to be there. I wanted to be there in those dark times. I wanted to be the one who, if there was a stillbirth and someone had to do the investigation, I didn't want somebody else who didn't care. I'm gonna get like all emotional, but you know, who didn't care. And I had colleagues that were sort of in it for the glamor or for the lifestyle

and not really for the emotional part of it. But for me, the emotional part of it was really everything. Well, Tracy, to get through med school and to get through residency and surgical fellowship, you have to have a fair amount of stamina and endurance. So can you talk to us a little bit about your health journey throughout this time? So I was really skinny because I was always stressed, which was great. So my outward appearance was just fine, but I was a freaking mess.

I mean, you know, through residency, through fellowship, and it's different now. I will say with the implementation of things that protect residents, there's wellness time and there's labor for food. But the truth of the matter is you eat on the run. I mean, there were thousands of nights that I was in the basement at a hospital in the guts of Queens eating a mixed flurry and fries and then you know going home and having dinner at 6 a.m because I was doing night float. I think the constant living in a state of always literally waiting for the you know for the shoe to fall and when the shoe falls it's a falling shoe,

it's a cord prolapse, it's a placental abruption, it's a dying mother, it's a bad tracing, it's an emergency feception. You talk about living in a state of high cortisol and breaking your axis of stress. My axis of stress was just like basically getting me the middle finger for a lot of years. And also this constant state of stress, because I chose to do a fellowship and I was older already and I kept getting older. I got married during residency and I wanted to have a baby.

And oh my God, when you're a high risk OB, the concept of having a baby and knowing that 86,000 birth defects that are happening any second, that was not great. That was just not a great recipe there. So that was tough. That was really the first time that I was challenged in a whole different way and in a whole different manner. But I did have a child during fellowship. And how did the pregnancy go? Oh, it was, I mean, my son is awesome. He's 22, but it was horrible. I hated being pregnant. I cried for a week before my anatomy scan. I had to have an

amniote because I had all these risk factors. It was fine. But then I had contractions all the time because I was taking 72-hour calls and I wound up getting severe preeclampsia at 34. We fell with hospitalized and delivered early and I had a preemie, which was super fun. So yeah, pregnancy wasn't great. And I was pretty certain that I was gonna die attempting a second pregnancy. As I feed that happened and I was like, okay, well, that's gonna happen to me.

So I should stop. All right, well, let's dive into the moment when the pregnancy is one thing, but when you start to notice that your general health is changing. Yep. So I remember distinctly the day that I was a, I was in the tending at this point.

I had started working in my community hospital. My son was three and I was okay. I mean, I was like very anxious all the time and a total hypochondriac and had terrible health anxiety, but like functioning. And my husband wanted to have another kid and was sort of thinking about it. And I remember he and I attended the residence graduation and I didn't feel great. I was achy. I just felt like I was going to sort of fall down.

I felt really weak. My joints hurt and I looked down at my legs and I had what I knew because I'm a doctor to be a really unfortunate rash. And I had all of these red splotches all over my legs that I realized immediately. I pressed on it. I pressed on them to see if they would go away when you press or not go away because that helps us figure out what kind of a rash it is. And I pressed on my little dot. Hold on. Wait, wait, wait, wait, wait. I've never heard this before about a rash. So there is very, very uncommon, but there's a specific kind of rash you can get if you

have super low platelets, which are the cells in your blood that help you clot blood. And when your platelets are incredibly low or your blood isn't clotting well or there's some other issue in that system, you can get what are called pachyceae. And these are little tiny red spots that almost look like red freckles. And what differentiates those red dots from a regular rash is when you press on them, they don't get lighter. They stay exactly the same color. They take your hand off and they're still red. They're looking at you. They're like, hi, still here.

We call it blanching. Correct. So you have a red color, you push down, you lift up quickly, it looks pinker or whiter and then it slowly returns. Correct. So in this case, in the patiquier, you press down on it and when you lift up, it's still the same exact bright red color. Correct.

No blanching. So was yours blanching or not blanching? Not blanching and I was like, uh-oh, we got a problem. And I knew I was achy and I went to my doctor and my doctor at the time was an infectious disease specialist. And she said to me immediately, okay, I think this is something infectious. We're going to do a ton of blood and we're going to just try to figure out what this is.

Your white blood cell count is low, your platelets are super low. Let's send a whole bunch of tests. Let's check you for mono, let's check you for tick-borne illnesses, let's check you for all these other things that can give you sort of a systemic illness. Lyme disease. Lyme disease, Yup. All these things. I knew as soon as she said that, that if that was the case, viruses were on their course. There isn't really any treatment. So I was lucky in a way that she sort of set that scene for me because I wasn't then chomping at the bit to get a diagnosis to get on the right antibiotic, for example. I knew that it was just going to be time.

So I felt sick. I felt exhausted. I wouldn't say I felt optimistic because I knew I had something that was affecting my whole body and I had no idea how long it would last. So I think I just sort of felt resigned. You know, I just sort of felt like, all right, I've got to just keep it together. She's probably right.

This is probably infectious. There isn't going to be a magic pill. And I'm going to have to just ride this out. But I just felt systemically so sick. I mean, every joint hurt. I had fevers. I had swollen lymph nodes in my neck. And I knew my white blood cell count was low.

And I just, I was so systemically absolutely unwell and I was really scared and all of my just just to explain when we say the word systemic we mean throughout your body yes thank you no from hesito I was having headaches I had swollen wounds in my neck the joint in my hand hurt I had swollen wounds in my neck, the joints in my hand hurt. I had this rash everywhere. I mean, it was everywhere that I was inflamed and hurting and just not okay. And I knew it wasn't just pain. Like I knew every time I looked at this rash, I knew that this is more than just pain. I knew I'm like, oh, this is not good.

Like I need some more platelets. Anybody have some platelets? You know, this rash needs to go away. And about three and a half weeks go by, I am absolutely miserable and all of the tests that my doctor ran are coming back negative. She sent all of the illnesses carried by ticks. So Lyme disease, Borrelia, Bartonella, Rickettsia, all of this stuff, that those all came back sort of one at a time. And I'm sure there were some other really obscure viral things that she sent off, which made me love her because they weren't things that I routinely checked. But they still came back negatives.

And with everything that was crossed off the list, my concern started ramping up that there was something else going on. And she said to me finally, I can't figure out what this is. I need to start thinking outside the box a little bit. And that was the day that I had gone to work and I had lost a lot of weight and I was wearing a skirt to work and my nurse locked in and she said, what the hell is going on with you? I can see your lymph nodes in your groin through your skirt.

And I was like, what? Cause I didn't check my lymph nodes anywhere else. You have lymph nodes all over your body that gets swollen when you have certain infections, let's say. And in the groin, you have a whole bunch of them and they were stood, they were like little golf balls all down my groin and you could see them.

That's not good. And it's really, I mean, it brought me back to the early days of what I would get called down because I wanted to take every AIDS patient, right? This was like a finding that a lot of people at AIDS had. And I was tested for AIDS, obviously, and it was negative. So it was that night where my doctor said to me, hey, I think we've got to stick outside the box and all for these lymph nodes were noticed.

And she said to me, I don't want to scare you, but I'm going to refer you to my colleague, Dr. X, who's a hematology oncology specialist, which is a doctor that deals with blood diseases, certain autoimmune diseases and cancer. And I was like, oh my God. And I sat in my son's bedroom that night putting him to bed and I thought to myself, I might have leukemia or lymphoma

and I'd be dying. And by the way, if I'm not, if by the grace of God, I'm not, I gotta get my shit together and I need to give my son a sibling. Like I need to get over myself and if I live through this, I'm gonna have another kid if I live through this. That is not the response I would have had. I'm gonna be very honest with you.

I think that says a lot about how much you love your child. Yeah. Because I think that I don't think I could have been that selfless in the situation. Well, also I thought I was dying so I didn't think I was going to get tested on it. But you're right. I just felt like I realized in that moment that if I died, my son would be left with my husband and he'd be alone.

And I always wanted a sibling and I always wanted that family. And so I wanted that for him if I was okay. And I didn't want to let my pathology, my mental stuff, keep me from giving him that. Can I call you Dr. Tracy? Yes. How would you like to be called? You can call me whatever the heck you want. Okay, Tracy, my heart, my heart is breaking. You're gonna make me cry on this podcast. Sorry, I'm sorry. But now that you say that it makes a

lot of sense. I get it now. I get exactly what you're saying. You wanted to leave a piece of yourself behind to be with your other child. Yeah, now I'm going to cry. Yeah, we're all going to cry. It's fine. It happens a lot.

But you're right. So yeah, so that was like a big thing because there's two pieces to Wyatt the second kid and that's the first one. So I went to this doctor, the hematology oncology doctor, and he was kind of like super arrogant. And so when I sat down with him, he was very, very quick. He did a physical exam in the exam room. So he took me into his exam room very quickly, just did like a super sort of quick exam. And he's like, look, I hope it's not lymphoma leukemia, but we do have to rule it out at this point. And I'm going to send up a whole bunch of other things,

sort of like more obscure things. So it wasn't like I came in there and he did an exam. And he's like, well, you either have rheumatoid arthritis or cancer. He didn't give me a differential. He said, we're going to draw a ton of tubes. We're going to look for a lot of different things. Obviously the bad things, but also going to look for the more obscure

hematologic problems. And I was like, great, that's fine. And literally I had like 20 tubes of blood drawn and I felt, audibly when I left, I didn't like him, but I felt like, okay, like that was a really good evaluation. And hopefully he will find something that no one knows about yet. And also even though I'm a doctor, I don't want to know, like, let somebody figure this out and take care of me.

And about a week later, I got a phone call. So the good news is you don't have cancer. And I'm like, yay. What's the bad news? We don't know. He's like, well, the bad news is that you have lupus. And I'm like, lupus, lupus, like what the, what the hell are you talking about? Like I don't have lupus. I don't want lupus. What do you mean? So lupus is an autoimmune disease that can cause a lot of illness, kidney disease, brain disease, lung disease.

It's a really serious chronic illness. You need to be on oftentimes immunosuppressive drugs. It can impact fertility. Moms who have lupus do have higher risk pregnancies. And I had already had preeclampsia and I'm like, hell no, I just don't want that. I know a little bit about lupus. Yeah.

So I was going to say, did you ever have a butterfly rash? Because that's usually fairly common, right? Correct. I didn't, but what I had was the blood marker. So I had a low white blood cell counts and I had a low platelet counts and I had joint pains and I had, so there are clinical manifestations of lupus, and there are also blood tests that can look for lupus. So he had done the preliminary screen.

So there's an umbrella test that captures people at higher risk, and that's called an ANA. So a lot of people will have a false positive, ANA, meaning they screened positive for a marker for autoimmune disease, which just means you need to do further investigation to figure out what. So he didn't even have a confirmatory test. He just had this very positive ANA. And in doctor speak, we talk about things in terms of sensitivity and specificity. And so having a positive ANA is a highly sensitive test, right? Meaning we're going to capture a lot of people who do have lupus, but it doesn't mean that

everyone actually has lupus. Right. So he, combined with your physical exam findings and this highly sensitive lab test gave you the diagnosis of lupus. Right. That's right. I don't know if this has anything to do with the episode, but I just want to throw it out there. The most I know about Lupus really comes from Selena

Gomez. I'm literally going to say that. Correct. And that's Lupus. That's Lupus. She's been an amazing advocate. And I would also say that she talks a lot about some of her symptoms, which do relate to what you were talking about, like swollen lymph nodes under the neck region tends to be very often associated with lupus. It's called moon face. It's something that they've been very hard to her in the press, often claiming that she's gained a ton of weight when it's really very clear that she's going through a flare-up. She had a kidney transplant. Correct. She had end organ manifestations of lupus. And that girl is still putting out bangers.

I just want to point out that woman is doing a lot with very difficult cards. And I feel like if this is all we're going to talk about lupus here, I think we should just acknowledge someone who I think has been a great advocate in sharing their story with it. And I also think to your point, like to take away from my story for a minute and to talk about Selena, I think that always time to talk about her. The celebrities that are speaking out, you know, we talk about putting physician terms into understandable language for people, I think that's Alita Gomez or Olivia Munn talking about breast cancer. These women, these celebrities are using their status for such good and it's so freaking powerful and amazing because you're right.

That's what a lot of people know about lupus. So there you go. That's a big deal. So what I'm curious is that at this very moment where you are in the office with the expert, right? The hematologist oncologist, and he says you have lupus. You, was it a gut feeling? Was it you're just like, I just don't want to be diagnosed with it. What was it that made you say, I don't accept this diagnosis? It's such a great question.

I mean, it's interesting because when he said you have lupus, I had only been so concerned about every disease I read about medical school about having this disease or that disease. If you said I have lymphoma, I'd gone there in my head. If you say I have, you know, I don't even know if you lose some form of God forbid leukemia, like that's where I am. I went to the place where you're the cancer doctor. Lupus is not on my sort of radar. And so yeah, that's a really shitty diagnosis that I'm not really worried about right now so no and he said you've got to come back in have some more tests to confirm and I hung up and I was just like oh is there any

other option here like anything else on the menu and I looked back and it was so out of character for me it really was so maybe it was so out of character for me. It really was. So maybe it was a combination of all the things you just asked me. A gut feeling, a, you know, as a catastrophizer that just wasn't on the bingo card. I don't know. I wasn't, I was like, this doesn't, oh yeah, you're right. I guess it does sort of make sense. But I've taken care of a lot of pregnant patients with lupus and I don't know I just decided that I do not feel like this is lupus. So I did what any good neurotic

doctor would do. I went on at the time it was PubMed. Love PubMed. Love PubMed. Love PubMed. And I went through hundreds of things because I heard my doctor's voice saying to me, oh you've got something infectious. Oh you've got something infectious. She said it right away. I liked her better. This was way back when I got my work. I'm like, I wanted to believe her, not him. So I started. Because let's just backtrack. Lupus is an autoimmune disorder. Correct. That's right. Lupus is a disorder where your body is attacking itself and it is a long-term chronic disease that you now have for the rest of your life.

Right. There's nothing that they found that you fixed or that you found and it'll go away in a month. This is like you're in it. And so I was like, all right, well, is there anything else infectious? Am I missing something? Do I have like, you know, boroborah fever or something? I don't know. So I went to PubMed.

And for those of you who might not know what PubMed is, when you're a physician, you have access to specific databases with medical articles in them that lay people wouldn't understand the terminology, wouldn't have access. So I had access through my hospital. Typically, you have to have some sort of a subscription. WebMD wasn't a thing then. Medline wasn't a thing then.

And so this is where you would go to search the medical literature, to sort of mine the medical literature, if you will. And so I just sat down and I started the same way that we started to fall down this rabbit hole on Instagram now or on, you know, chat GBT, I fell down the rabbit hole of medical literature. I was looking for some other answer. So I would put in clues and words. So I'd try combinations of like low platelets, ANA positives, joint disease, and few what

would come up. Then I would try different permutations. I would put in ANA and the actual value that I had. And then I would put in false positives, etiology, virus, tests. And it was like, I was just picking and trying to put different combinations of things together to see if I could stumble upon anything else. So I found an article describing a lupus-like syndrome in a few patients. And I was like, what's this? What's a lupus-like syndrome in a few patients. And I was like, what's this? What's a lupus-like syndrome?

And I opened up the article. And it's so funny how OB-GYN always comes back to save me, I guess. There is a particular virus that is a childhood illness called parvovirus. Parvovirus is also known as Spitz disease. Wait, okay. Isn't that what dogs get? Yes, and the puppies. The puppies.

For me, poop. Yes. Yes. I did not- Did you eat some poop? I didn't, but I felt like I did, honestly. I mean, I might as well have if it would have made me feel better, I would have. No, I'm just kidding. But to your point, poppies get it. And also if a child gets it, most of the time they have what's called the slouchy rash. It's all coming back to me. Right. And no big deal. They're sick for a couple of days. Their nose is runny. They lick you. You get like whatever. It's fine. But by adulthood, most people are immune to it. But when you get parvo as an adult, man, you get really sick.

And this article was about parvovirus presenting like lupus. So the article was two case reports. And if I'm remembering correctly, I think that they were, one was from Japan and one was from somewhere else in Europe, maybe. So it wasn't like an article describing a series of a hundred patients. It was two case reports and they described the case reports, how this is a so-and-so year old patient. This is how they presented.

This is what they had. This is what their workup showed. And both of them had slightly different stories, but it was me. I saw me in the stories, in both of their stories. So the paper wasn't really standard of care. It wasn't a randomized control trial. It was case reports. And you can honestly find a case report of anything.

Like you could find the craziest, that's why we always tell patients not to start Googling their symptoms, because you can find, you know, oh, you have an itch on your left arm, you have a worm eating brain in the left side of your right ear. Like there's a case report for that.

So get me super careful with that. And I understand that. But this just felt too similar. And it was such a simple test to see if it is what I had. It seemed like a no brainer to me to at least check. So as I am reading the article, I was in my Danit home with Late at Night. And I was like, Oh my God, Oh my God. I think I found it.

This is totally it. This is literally what I could have. And this totally makes sense. And I was really excited and hopeful and optimistic, which looking back is so funny to me because I became more of a catastrophizer as time went on. But then at that moment, I sort of was like, oh, this is much better. This works.

This makes sense. So I was really psyched. And you know, back in those days, and I didn't even have a printer at home. I mean, I did, but it was like, you know, it worked every third Thursday. I had to go into work, find the article again the next day, print it out, and I was just, I was holding this piece of paper like it was like a diploma. And I went into the doctor's office who was working in my hospital. He's my colleague.

He's down the hall from my office. And I went into his office with the article and I'm like, person, I didn't want to say his first name, but per Dr. X. I didn't call him Dr. X I called him by his first name he does sound like he's someone from Marvel that's taking care of you which I'm okay with yeah well 100% I like this super power yeah yeah except vision I have a of them except he's like Lex Luthor yeah yeah wait ready Dr. X yes ready for Dr. X's response? I give him the article.

Tell me more. I give him the article and I'm like, holy shit, maybe I have parvovirus. We got to check this out. And he looks at me and he looks at the article and he said, I'd never heard of this. So if I'd never heard of this, it's far more likely that lupus caused lupus than parvovirus. So yeah. And he hands me back the article and he said, you should go down the hall and get the rest of your blood test. And I literally almost lost my shit in his office. Oh, I would have. I was just wait, it gets even better. And you're a doctor, guys.

You're a doctor. I'm his colleague. She's a doctor mad at a doctor. I'm his colleague. I'm being told I don't know this so you can't know this. Fuck you, excuse my French. Oh, we love French here. Okay, good.

So I was really mad at him when it completely dismissed me and completely blew me off. He's a crutch. Never heard of this. Far more likely that I know what your condition is than you do, basically. Or that I know what this is and Lupus is much more likely to act like Lupus. That arrogance and that dismissal, the patriarchal dismissal, I was freaking mad. And it was delivered in a way that was like, I don't even hope you have this. Like I want what's best for you. It was just said like, well, it's you're challenging my knowledge. How about the emotional ramifications of the diagnosis you're looking at?

So I was angry at him for that. I was angry at him for stealing my hope because I was like, well, I really want to be right. And now you're calling me stupid, basically. And then I was really, really mad for his patients. I was so angry because I thought of all the people who don't have the luxury of the knowledge and at that time, there was no chat GPT. You couldn't ask him and get any medical information. All the people that were being

robbed of possible second chances of possible things he didn't know about that his mind was so closed that maybe a cancer patient was going to miss out on the clinical trial that could have saved their life. That his arrogance prevented him from practicing his best medicine. And he wasn't just like a primary care doctor who was going to miss a cold. You know, he was a cancer doctor. So I very promptly ran to my own office. I had my nurse draw my blood and I said, send antibodies for parvovirus, please. Because you can do that when you're a doctor. Because I could do that. Because she's a doctor. And I think, and I did. Wait for that Hamilton line because I'm the president. That's right. Because I'm a doctor. And I did. Wait for that Hamilton line, cause I'm the president. Exactly, cause I'm a doctor,

didn't do shit for me here. I mean, thank God, thank God I had that resource. But if you're listening and you're not a doctor, I want you to know that you would have options in this situation too. What I would have done and what another patient should do if they're hearing this story is I would have called my internist and told her what happened and said,

you thought this was infectious by having this case report. Would you mind if I came to the office and can you send this blood test for me? And I do talk about this with patients all the time on Instagram. If you think that you are, like for example, if you think you have a dangerous condition after you've delivered and your doctor dismisses you

and says, oh, you're just tired, you have a newborn baby. You can say to that doctor, I want you to prove it to me. I want you to do the blood tests that show me that I don't have this thing. So that's the advice and it's very tangible advice that you can take away not being a doctor because it's ultimately what a lot of people have to do for themselves, to self-advocate, to get the information they need. And most of the time, if a doctor is being approached in a way that it could help a patient, they're going to be more than willing to do it. It would

have been different if the test was a $12,000 send out test that's only done by one lab, but no one had ever heard of before. But this was a standard test. So if you're concerned because you're having chest pain, for example, and you're told it's just anxiety, you can say, Hey, can you just do an EKG for me right now while I'm having this discomfort if it's possible to order that or do that now so that I can have some reassurance? Your doctor may say no, right? Like if you have pain in your neck and you're worried that you have, God forbid, an aneurysm, you're about to have a stroke and you say to your doctor, can you do an MRI? The answer is probably gonna be no. But if we're talking about blood work or checking your cholesterol or checking for diabetes, like those are no-brainers. No-brainers. So I run this

test for Parvo and two days later I get a phone call from my original doctor and she says to me, oh my God, I was right. It's something infectious. You have Parvo virus. Oh man. And I didn't want to break it. It's about to go down. Oh yeah. Oh, it's about to go down. It's about to go down. Anna is here for this doctor on doctor. That's a microphone. It's actually setting spray, but it just traps it. Yeah, right. I just feel like I want to narrate it.

The two doctors stepped into the room, eyes glazed. So I say to my doctor, the first one, I'm like, yay, thank you. You figured it out. You didn't order a coronavirus, but whatever. I'm not that mad at you. Yeah. Get to the doctor fight. So I then got on my knees, I literally fell to my knees and cried. I was so relieved. Based on the case reports, I knew that eventually this would probably clear.

I knew I had to speak to a specialist in autoimmune disease to really figure out what was what, and I knew I had to deal with Dr. X. So I decided that I couldn't keep it together if I had gone face to face with him and I sat down that night. I kissed my kid, kissed my husband. I don't have lupus. I probably have parvolyrus. That's causing this. I wrote him a letter saying basically the following, you are a cancer doctor. You have patients that come to you with hope, with articles about shark cartilage. You have no fucking idea if somebody is going to bring you something that you don't know, that they maybe know, that maybe could make them feel better. You're a cancer

doctor. You need to do better just because I'm a colleague of yours. It was disenfranchised. It was misogynistic. It was patriarchal and you were wrong. So no thanks to you. But for the rest of your patients who I will never be referring to you by the way, for the rest of your patients, you need to take this as a lesson that you don't know everything and you need to do better. Did you photocopy that and then send it to the head of the department? Because that would be what I would do. I'm next level petty. I would be like, and FYI. I've taken the fish. I've taken the dog. He was the head of his apartment.

How do you like that? Oh, God. Poor patients. I let the chief medical officer of the hospital know. I mean, honestly, and I think he's still practicing if he's not dead by now. I don't know, but I was so, I'm a physician. Why? Why did you dismiss me?

Because you know everything? Because I'm a woman. Why? Why did you dismiss me? Because you know everything? Because I'm a woman? Because what? None of it was acceptable. And so I connected with the top rheumatologist who was an autoimmune specialist. She said you're absolutely right. It's seen part of the virus, caused lupus-like syndrome before. Give it six months. We're gonna follow your ANA t down. And if it goes down to zero, wait six months after that. If you want to have another child, just we'll wait until it's negative. And then you'll wait three months and then you can go ahead and conceive. Because, because also the, the treatment for lupus, the medications that you have

to take are really heavy duty, cytot cytotoxic, you know, really harsh, harsh medications. So you could have been started on those really, really harsh medications. Yeah, some of them were chemotherapeutic agents. So ultimately what happened was I had to do a very specific kind of test. There are certain blood tests that are more specific, auto antibodies for lupus. So those tests were done and those tests actually came back negatives. So that sort of almost filled the deal,

but you have to watch the levels come down because ultimately some people I learned, I didn't even know this at the time because the doctor that I ultimately worked with did know it, because she had seen one or two cases. You can go on to then develop lupus, and you're at higher risk for going on to develop lupus later in life. So that's why I had to be watched very, very closely, in the hope that that antibody would normalize and come back negative eventually. So yeah, the ANA normalized, it's been negative since, let's see, my daughter was born in

2008, so since 2007. And yeah, that's my mystery illness story. That was the first, there's many more. But yeah, so I think it's so important for people who are not in medicine to understand, you know, I'm writing a book now about how I was dismissed as a doctor over multiple different occasions in my life, especially as a woman. And we need to figure out a way to take our power back, whether we're doctors or not, and we have to be willing to own some of the responsibility because the medical system is becoming increasingly more unable to deal with without some self-acceptance of responsibility too.

And, I mean, we've had other guests who have been in your shoes where they find what the diagnosis is and they ask, you know, like, should I go back to that doctor who dismissed me or didn't take me seriously or misdiagnosed me? And I have always advocated that, yes, there should be some sort of communication, whether it is through an appointment, whether it is through a letter, because there's no way for them to learn from the situation or at the very minimum get taken down a peg that hopefully will help their future patients. Totally right. Totally right. It's always scary.

And if you're a patient, because I had to do this with an OBGYN, just report them. Like honestly, if you don't feel like you've got proper care or you felt like that was a result of any type of prejudice, please just report them. Because if you don't, like you've got proper care or you felt like that was a result of any type of prejudice Please just report them because if you don't they're gonna do it again Totally and if someone's aware at least they'll have a conversation and that will be the start and then if they do do it again And it gets reported again that will actually have consequences Absolutely, and I think what you're saying is so important because people feel so powerless at a doctor's office But really actually doctors are working for you

people feel so powerless at a doctor's office, but really, actually, doctors are working for you, even though it doesn't feel like they're working for you well, but that's the one piece of power that you do have that's really important. And I know it's scary and hard, but it is worth it. And I would also say make sure the doctors that referred you to that doctor know as well so that they don't refer again. It is not a fun conversation to have, but one thing I've definitely learned on my personal medical journey is that you either have to be part of the solution or part of the problem. So if you don't say something, you're just letting that same issue persist and keep happening again and again. So while it is hard, it is part of the change that I think all of us want to see in medicine. Totally. Totally.

And I want to just go back and do a little more explaining about your actual diagnosis, because we do this segment where I do Dr. Nance's Med School 101. And you actually could probably tell this better than I can. But we have had many cases where we're talking about autoimmune problems. And in this case, your immune system is like the police force and they're trained to find intruders. And in this case, they find intruder. It's the parvo virus.

And so they start attacking the parvo virus. They're trying to, you know, attack them, get them out of your body. But then the immune system gets a little confused and starts attacking your own normal cells that they think are the parvovirus. So what happens is that you end up having this autoimmune response, but it's a misdirected response. And it never really was an autoimmune problem to begin with. Right. It's just that the wires got crossed. There was a criminal to begin with. Right. You had an infection,

you know, a trigger, but that set off a chain of your body attacking itself. But in this case, over time, your immune system learns, oh, okay, we actually don't have an intruder in the house anymore. And they calmed down. That's right. Wrong man was prosecuted. Correct. Right.

That's right. It was mistaken identity. That's right. It was mistaken identity. But I will say, I have always felt that a lot of these autoimmune conditions probably are infections that are being treated as autoimmune disorders are really a viral trigger that totally raise the art and that it's not you had an autoimmune disorder to begin with correct what you mentioned ebb because i have seen that come up again and again and again for many patients who have been told they have autoimmune disorders. I asked them, have you ever been tested for EBV? Yes, I am positive

for EBV. I love it. You just said that. Epstein-Barr virus. Epstein-Barr virus mono, kissing disease mono. I think Erin, you are dead on. And I think if, you know, know again I think so many physicians are struggling so much to keep up with what they can but there's a lack of opportunity to be curious and I think this concept of viruses being a trigger for potentially autoimmune illness well if we don't know how to write a prescription for that that well then we're just thinking about it but we have to be curious we have to think about these things really It's really important. Correct. Because it's one thing to be able to have a test for strep throat. Right? Like, oh, I gave you the swab, the swab came back positive, you've got strep throat. Unfortunately,

we don't have a lot of the tools that would make these diagnoses as easy as that. That's right. That's correct. So I think that's what we really have to work towards is how can we create these diagnostic tools so we have some definitive answers for people. Correct. That's, I think, the next frontier. That's right.

I think it's a really important episode, number one, to have people understand that this happens to doctors too. Just because we're a doctor doesn't make us any less at risk for being dismissed. You are a great example of just trusting your gut. You're like, I don't think so, right? But you did the work and you are at a distinct advantage because you know the language, you knew where to go to get the information. And for some people, it may mean finding that North Star doctor who, again, may not be the doctor who is the specialist, but someone who you trust, someone who is willing to work

with you to do that investigation. Not everyone is able to draw their own labs in their office like Dr. Chevelle was, but I just think it's a great example for people to know that you can solve your own medical mystery. Totally. So baller. So baller. So good.

Just don't do my own blood work. Thank you very much. And I would also say too, this highlights something that I think is important to acknowledge, which is, listen, we're not here to complain about good doctors and we're not here to degrade the entire medical system. What we're trying to do is point out that there are systematic issues in the medical system, not just in the US, kind of globally in the way that we treat and look at women and the way that we treat and look at less common diseases. And the goal is better care for everyone involved.

And I think Dr. Tracy is a great example of that. So we're all on the same team here. We just want people to feel better. And all of this is hopefully a step towards that. This has been unbelievable. Like I feel like it's been therapy queue and just such an important conversation. And thank you for listening to my spiel. And I felt like I just had free therapy, so thank you.

So first of all, she was a lovely guest. She was very, just cool to talk to. All of our guests are cool. I'm constantly shocked by- We're Instagram friends. Oh, yes. I mean, I didn't want to say, but yes, I knew Tracy before.

I'm jealous. Look at me getting over here being like, I'm gonna sneak in her DMs and friend her too. Yeah, yeah, yeah, yeah. What I think is so important about this story is, we said at the beginning of the episode, and I'll say it again now, is this happens to everyone. It happens to doctors. It happens to smart people. It happens to people who know nothing about health. It happens to people who know everything about health. And then last week episode,

which unfortunately I was gone for, but did listen to, there was a lot of conversation about keeping track of your symptoms and things like that and journaling. And while you should definitely do that, I did that in my own journey. Sometimes even having all that information, you will still not be heard. Yeah. And I actually want to mention today because these episodes come out like a week after we filmed them, but there was a doctor who passed away this week. His name was Dr. Lucian Leap. And while his name might not be familiar, the report that he wrote 25 years ago, which was called To Error is Human, was really a landmark study that showed the impact of doctor errors and doctor mistakes on patient safety. And that report really served to not blame doctors, but talk more about

the systemic problems that allow these mistakes to continue to happen. So he was really a pioneer in patient safety. Coming up with this report, it was really the first time physicians were put on blast and you needed to see it in black and white. And sometimes, you know, that's why we do this podcast, is sometimes we have to call it as it is and talk about these things that are not right

so that we can implement change. I would also say, and just kind of piggybacking off what you said about systematic issues, some of these problems are because of the way which the medical system is structured, right? A doctor only has so long to diagnose things and it's always move the patient along because the next one has to be seen. I don't know how we solve that. By golly, I don't know how we solve that. But I do hear

over and over the conversation about time constraints and those challenges. I think for some doctors, it becomes easier just to call the horse versus the zebra and move on because that allows the wheel to keep moving in the same speed it should keep moving. And while that's maybe not right, I understand how that happens. So I think it is more than just a faulty doctor, though sometimes that plays into it too. It's a whole host of issues that have come together and created a system where, you know, it's get someone in and get them out as fast as you can. And I was actually just on a podcast called Calling in Sick, and Alex, who's the host who has chronic illness,

she said something I thought was really profound that, you know, she has many different illnesses, problems, symptoms, concerns, and she says that every visit she ever goes to, she has a goal for the visit and a concern for the visit and that is it. You cannot go in with a laundry list with a litany of things you have to be very targeted in what the purpose of this visit is and this is the main concern. So I just thought that was helpful for for anyone who's thinking well how do we do this? How do I get through a five-minute appointment and make it be meaningful?

Yeah, I think that's amazing advice. And I would also say, if it's your first doctor's appointment in a long time, make your goal something very small, like assess whether this doctor is a good fit for me. Because it's unlikely that in your first doctor visit, they're going to solve your magical problem. What's better goal is to say, okay, can I work with this doctor to get to an answer eventually? So I think, you know, keeping in mind where you are in the process

when setting those goals is also really important. And in some cases, like in Tracy's case, right? Where she literally solved her own problem and gave him the evidence, but he refused to listen to her or do any investigation. In the end, no one cares about your problem more than you, and you have to find a way. You have to find a way.

Now, not everyone gets access to their own labs and drawing labs, and we completely understand that that is not realistic for 99.9% of our audience, but it just goes to show that you have to be persistent and sometimes it may require, again, changing doctors, changing different doctor specialties, right? If you're not getting anywhere with a rheumatologist, maybe you're supposed to see an infectious disease doctor, right? And look for those North Star believer, physicians, friends who could help point you in that right direction. I don't want to be the person that squashes hope right now,

but I think we need to acknowledge something that we haven't really maybe been clearly acknowledging is that some people just don't have the energy or the time to do this. And I think that is probably one of the most challenging things about managing your health is that really is another job, especially when you're trying to get to the root of the issue. And I think that sometimes we forget, you know, I've been very lucky to be in a position where I could pull myself away from a lot of things

and say, I'm just going to focus on this, but that is not an option for a lot of people. And so if you're one of those people listening right now who feels frustrated because you don't have the time or the energy, I just want you to feel less alone in it. I don't have a magical solution. I wish I did, but at least knowing that you're not alone and that there's other people who are facing that feels like some type of thing that we should at least raise the awareness of a little bit. Because I think some of the reason these conditions are undiagnosed is because people don't have the energy and the time.

And it's of no failing of their own, by the way, like if you're working two jobs, you don't have the energy to figure out why you're tired all the time, right? We don't have their diagnosis simply because they cannot in an accessible way, get the healthcare they need to get that diagnosis. And I just feel like we have to acknowledge it. Cause I don't think we have enough on this, this podcast. I mean, don't have the energy, don't have the finances to support, don't have the family

support or support system to drive you to those appointments and whatnot. So they don't have doctors. Yes. And I would also say we're at a time where a lot of people are losing insurance and this is only going to get harder. So it's hard. Hopefully shows like this can at least raise awareness so people know where to start. With that, we'll see you next week.

Yeah. Sorry to end on such a sad note guys, but you know, this is why we do what we do. So we'll see you guys next week. The Medical Detectives is a soft skills media production produced by Molly Biscar, sound designed by Shane Drouse. If you have a 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 Det 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

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