Case #12: Chris
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I drove myself to the emergency room in a sheer panic because I was worried if I called the ambulance, you know, they wouldn't get there in time. He was having chest pains. He felt out of breath. He was feeling shaky. And that was the first time I really remember that he couldn't do something that we used to love doing together.

So there is no medication. Some people can have pretty mild symptoms and other folks can, you know, unfortunately die. Frankly, that was incredibly depressing. I'm dying here. Let's figure something else out. Let's try something else because I have no life here. How terrifying would it be to fight an unknown enemy? One you didn't recognize and didn't see coming.

What if that enemy was coming from within, a disease that even doctors couldn't identify? Nearly half of all Americans suffer from some chronic illness and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Bright Pacheco, and this is Symptomatic.

Whether he's kayaking, backpacking, hiking, or just working out in the garden, Chris Rose feels most at home while outdoors, where he can breathe fresh air and take in the scenery around him. He's also developed a passion for capturing his adventures with a camera. I dabble in photography as a hobby, so I've got a room full of cameras and darkroom chemicals and equipment, and...

That's kind of my go-to when basically I'm not working. Who are your favorite or what are your favorite subjects to photograph? I would probably say landscapes. You know, I'm a big fan of Ansel Adams and that kind of photography. I love black and white photography. So you're also a big outdoors fan. Yes, yes. I do spend a lot of time outdoors.

I also was a backpacker for a while. I kind of got started in all of that when I was younger. I got sent off to an outward bound camp for a couple of weeks. And it's kind of been a thing of mine ever since. How would you describe Chris to somebody?

Chris is incredibly intelligent. He knows more about more different topics than anyone I know. And he is always willing to help people out. It can be someone he's met once before. If they need something, he will jump in. And so he's an extremely generous, giving person. That was Chris's wife, Kim Mantorek. They've been married for almost 15 years and share a blended family of five children.

Chris's battle with a bizarre set of symptoms would eventually go on to rob him of his once active lifestyle. Kim would remain his rock through it all. So what is it about Kim that attracted you to her and why do you guys make such a good team?

Well, obviously she's beautiful, but she also, I feel like compliments me in that she has some strengths that happen to be weaknesses for me. She is definitely the most organized person I've ever met in my life.

She's really good with speaking in presentations and basically being able to take things and distill it down to the pure essence. She just really has a gift for that kind of thing.

This is both Chris and Kim's second marriage. Back in the mid-2000s, Chris had gone through a very difficult divorce, which brought a lot of anxiety and depression with it. Again, he turned to his love of nature as a way to escape both mentally and physically. But little did he know, there was no amount of hiking or gardening that could stop a mystery illness from changing his life forever.

How long ago do you first remember experiencing unexplainable symptoms? Around 2007, early in the year, I'd made the decision that I was going to move back to North Carolina. This was after I got divorced and I decided

Had this kind of weird thing happen right before I move where I had this sudden bout of massive chest pain and went to the emergency room at the hospital I actually worked at.

Oh my gosh, well take me to that moment. What were you doing? What did it feel like? Did you drive yourself? Yes, I did. I drove myself to the emergency room in a sheer panic because I was worried if I called the ambulance, you know, they wouldn't get there in time. I had never felt anything like that before.

Just intense chest pain. You know, they talk about like the elephant on your chest and just pain radiating from everywhere. That's essentially what it felt like. So you thought you were having a heart attack? I did. I actually thought I was dying that day. I really did. And, you know, had them bring my kids in and everything because I thought I was a goner, right? And they run a bunch of blood tests. They do the EKGs and stuff.

Seemingly out of nowhere, Chris was faced with what felt like a life or death situation. Anxiously awaiting his test results, Chris was tormented by his thoughts and terrified of what would happen next. He relied on his doctors for a sense of solace. They came back and they were like, well, your troponin tests are negative. We don't think you're having a heart attack. So basically, they just kept me there for a long time and watched me and then they sent me home.

Shrugging their shoulders. Shrugging their shoulders. They had no idea, but they did say, it seems like the way you describe your pain, it may be coming from your stomach area. And they're like, have you been checked for acid reflux? And I was like, no, not really. But I do remember having a lot of heartburn prior to this. So they're like, here, try this broad spectrum antibiotic for my digestive symptoms.

Provided some temporary relief, Chris focused on his cross-country move and found ways to live with the bizarre pains in his abdomen. If I had pain, I was basically just kind of lay down, ignore it, take some Tums or whatever, and eventually it'll go away. You know, ultimately you fall asleep and you get up the next morning and you're feeling all right again. So you're like, okay, well, maybe this is just all in my head, you know? Well, I mean...

Look, you can laugh about it now, but that must have been the antithesis of funny at the time. Oh, yeah. Yeah. I had some people making some jokes about it, but I didn't think it was particularly funny. You know, it scared the bejesus out of me. Did they think that there was some kind of an anxiety or stress component? Yes, they did. Indeed.

I had another couple of these episodes not long after moving where I wound up in the emergency room. And they did tell me, yeah, you probably have some kind of anxiety disorder. So they were like, yeah, maybe we ought to look at, you know, giving you some PRN anxiety medication for this. So they did. They gave me a prescription for whenever I needed it. And, you know, of course, I still kept having these episodes. And I was like, all right, well, I guess it's anxiety, you know, right?

Chris downplayed the multiple trips to the emergency room and how scary they really were. He consistently felt excruciating pain in his stomach and chest to the point where relief only came from lying down in isolation. So can you describe how the episodes morphed at this point? And what did they feel like in your body and in your mind?

I would get the same thing. I'd be sitting there in the evenings, you know, and getting ready to go to bed. And I was all of a sudden sharp pains and chest pains and stuff. And I would be like, okay, I must be having an anxiety attack again, you know? So I take the Tums for the stomach. Then I would take medication to treat the panic attacks. Basically that always knocked me out, right? So at that point, I'd just fall asleep. I'd wake up the next morning and be like, okay, you know,

And it was about this time I started really getting the real GI symptoms in the sense that I was having to go to the bathroom during the day constantly, having a real upset stomach, loose stools, that kind of thing. And I just chalked it up to the anxiety.

It's been two years since that first trip to the ER. By this point, Chris and Kim are newlyweds and start to face this mysterious illness together. But even with Kim's support, Chris begins to struggle with day-to-day life. So you had...

bowel urgency. Oh, yeah. Yeah. And that has such a detrimental, debilitating impact on your life and your mind. I mean, how severe was it? And did you find yourself altering your schedule to accommodate? Yes. And it was one of those things as time went on, obviously, we moved into the new house. It wasn't long after we moved in, I had some more of these emergency room episodes. And then

the bowel part got a lot worse. It was getting to the point where I have to travel quite a bit for work and I have to get in the car sometimes and drive out to these places in rural areas and visit with clients and not being able to get to a bathroom in time became a real ordeal. And I remember very distinctly the time where I felt like

I was just at the end of my rope. I was running down Interstate 40 going to a client down towards Wilmington, you know, and there's a long stretch there where there's just nothing. And then all of a sudden out of nowhere, I had to go.

And I literally had to peel tracks off the side of the highway, jump a fence, go hide under some trees, you know. And I wound up having to leave my underpants in the woods there. And then I had to go hit a clothing store and buy a new pack of underwear and get cleaned up, you know, so that I could go see my client.

I mean, and it's crazy to have to live like that, right? It's terrifying. Terrifying. It's stressful. It's depressing. And then there is this element of shame because you don't want to admit to people that you have this weakness that we don't talk about often. The reality for some people that when they say they need to go to the bathroom, it's almost too late.

Yes. And that impact on your daily life must have been so stressful, so overwhelming. Yes, it was. It was debilitating. And at this point, I wasn't going places with my family.

out of fear of either the pain attacks coming back. I'm terrified to go without carrying panic medicine with me or being able to get out of a situation. And then I'm also terrified I'm not going to be able to get to a bathroom in time, right? So, you know, I would avoid going to concerts. I would avoid going to the amusement park with the family or going on long trips. I mean, I basically kind of became a hermit at home. So, yeah.

It's one of those things where it's hard to have a conversation about that. You don't want to tell your friends, like, I can't come out to dinner with you because I don't know if the bathroom is available. Like, it creates both a physical distance because you can't do things you want, and it also creates that psychological difference because you're not comfortable talking about what's going on with your friends because it's embarrassing. And so I think we saw a lot of withdrawal, both him and us as a couple. We just couldn't do as much as we wanted to do together.

Chris's symptoms kept getting worse. He returned to the ER where doctors came up with a new theory about what was causing his condition.

There was a doctor there and he's like, you know, I have a hunch. Let me check something. He wheels this ultrasound machine into the room, right? They start ultrasounding my belly, you know, and he's like, aha, I think you have a gallbladder problem. You have gallstones. And I was like,

Huh. Okay. I didn't realize that. So for a while there, I kind of had hope because I thought, oh, wow, maybe we really have found this problem now. You know, I'm at the point now I'll do anything to fix this. I basically decided, okay, let's take the gallbladder out. And they did say I had gallstones and it was diseased, but...

Fast forward after the removal and after a time of trying to get things healed up and everything, I'm right back to having the same problems again. Oh, gosh, Chris, you must have. I mean, at that point, you've undergone major surgery and you're in the same boat. Yes. I had high hopes that it was going to result in a significant change. And it was really disheartening six months after the surgery when I

very little was improved in terms of his health. And so I think to me, it kind of felt like we had a great hope there that this was the answer, and then it just turned out not to have been it. Though Chris had to bear the physical symptoms alone, the emotional toll of the insidious symptoms was shared with Kim and their family.

I was frustrated because it felt like every medical professional that he went to defaulted to the same change your diet, lose some weight answer. And it became a running joke with us, right? Because he kept saying, I know that's not it. There's something that's really going on.

But he just wasn't getting any answers. And that was frustrating for me. I think at one point I even said, let me come to your doctor's appointment and I'll be the crazy nagging wife and I'll annoy them because we just felt like he wasn't being heard.

There was a lot of time where I was freaking out, thinking I was dying and absolutely losing my mind. And she's kind of the calm person, you know, standing at the back side of the room going, you know, I think you're okay. I know you feel like you're dying, but you're probably okay.

The biggest thing that I tried to do was just to validate his experience. I'm not sure how helpful that was when he was really suffering and miserable and sick, but sometimes I would just say, like, I do believe you. You need to know that somebody believes you. Running out of options, the doctors were willing to try anything to get Chris answers. They were like, okay, well, let's set you up for an endoscopy. Went back into the hospital and they're like, oh, it looks like you have bile reflux.

That's why you're having all these problems again. They put me on some medication for that, and I still wasn't getting any relief. Feeling increasingly hopeless, Chris worried his ongoing health issues would eventually drive even Kim away. Frankly, sometimes I thought maybe she would leave me because, I mean, what I was turning into was kind of this super depressed, paranoid person.

Chris, that must have been so overwhelming. It was very overwhelming. It was very overwhelming.

It had now been 10 years of agony and uncertainty for Chris. He'd experienced the trauma of being rushed to the ER with excruciating chest pain, thinking his life would be cut short by a heart attack. He had seen countless doctors and specialists since then, but none of them could diagnose or treat his mysterious illness. Chris would soon become so desperate that he takes matters into his own hands. I was just so frustrated with the whole situation. I'm like, how

I'm dying here. Let's figure something else out. Let's try something else because I have no life here. We'll be right back with Symptomatic, a medical mystery podcast. Now back to Symptomatic, a medical mystery podcast.

Chris Rose had been battling an unknown illness for over a decade. It all began with severe chest and stomach pain that felt more like a heart attack, and he was terrified that his days were numbered. However, as the gastrointestinal symptoms progressed over several years, they began to take over his life. He was mostly confined to his home, unable to enjoy the people and activities he loved.

With no semblance of hope on the horizon, Chris plunged into a deep depression. Kim, was there a time that really felt like rock bottom, where you were just worried or terrified? And what were your deepest fears? My biggest fear was that we would just spend the next 10 years finding out that it wasn't anything. That winter, he went through some really deep depression.

Sometimes he would sit in the living room with all the lights off and just stare. I remember him saying, like, my life is over as far as being able to do what I want to do. Chris loves taking pictures. He's a big photographer, and he wanted to go out in the woods and take nature pictures, and he couldn't get 20 or 30 feet from the car because he would be afraid that he was going to get sick and he wouldn't know what to do.

And frankly, that was incredibly depressing. And I remember thinking, we got to do something different. I'm dying here. Let's figure something else out. Let's try something else.

It was just after that dire winter when Chris would pursue a new doctor to look at his diagnostic journey. Dr. Sarah McGill, a gastroenterology expert, started hunting for an explanation, bringing fresh eyes and a new perspective to Chris's struggle.

I had some ideas, but I remember him giving this story that is so typical, honestly, among people with irritable bowel syndrome. Like they're having a lot of abdominal pain. They're having a lot of diarrhea, having to rush to the bathroom, having to think about where the bathroom is going to be. Now, irritable bowel syndrome is

It's a diagnosis based on symptoms. It's not a diagnosis based on what's happening in your body. That can be a whole variety of different things. When you met her, what were your first impressions? She had a very good bedside manner. She was very empathetic and incredibly intelligent.

I thought, "Hmm, okay, I think this is someone I can work with," right? She just felt like a person I could trust. - What was her reaction to hearing your symptoms? - I think initially kind of thought it might just be IBS, which is something that runs in my family. And I really didn't want to hear that because I was like, "Oh, geez, I know there's nothing they can do about that. It just means you're going to be this way forever."

So the first thing I believe you ordered was a colonoscopy with him? Right. So there are two illnesses that I was thinking about that you can find with a colonoscopy. One is Crohn's disease or ulcerative colitis. And then there's a disease called microscopic colitis, which causes a lot of diarrhea, but usually it won't cause abdominal pain. But that also we can diagnose with a colonoscopy.

I mean, everything came back fine, you know, and I didn't have any of the other symptoms. And then they also did tests for like celiac disease and food allergies and stuff, but nothing ever came back.

Remaining hopeful and realistic about the continued search for answers, Chris was able to reclaim his love for the outdoors and nature. One day, after a walk, he noticed a tick bite on his leg had developed a bullseye rash. He was prescribed doxycycline, an antibiotic for possible infection. To his surprise, it actually seemed to help his stomach issues.

The temporary relief provided by the tick bite medication immediately raised a flag for Dr. McGill. She suspected something that other doctors had failed to consider: that his love of the outdoors may have put him directly into harm's way. And then just on a whim, she was kind of like, "You know, it's probably a long shot. Let me—I'm gonna test you for something."

And I was like, okay, what? I had diagnosed some other people with just GI problems with tick bites. And she's like, I'm going to test you for this red meat allergy, this alpha-gal syndrome. It's a very inexpensive blood test. Oh, that weird thing. I was like, yeah, that's whatever. I thought we didn't really have anything to lose by checking for it.

They took my blood and God, I want to say it was like a day later or whatever she calls it. She's like, you're positive. I was like, what? Shock of your life kind of thing.

People have these flashbulb moments where you remember exactly where you were sitting and what you were wearing and what you were doing. And I was with my daughter. She was at a college sporting tournament, and I was sitting on the bleachers watching her, and he called me and told me about the diagnosis. And I said, you're kidding. That's impossible. That doesn't even make sense. I've never even heard of this thing. That's fake. You're just making this up. Like,

I think I even actually like stood up and cursed, right? I was like, are you kidding? Alpha-gal syndrome, a food allergy to the alpha-gal sugar molecule found in most mammals. Chris finally had a name for what had been tormenting him after a decade of distressing symptoms.

Explain to me, in a nutshell, alpha-gal syndrome, because most people haven't heard of it. Right. There's just the CBC report a couple weeks ago that four in 10 doctors have never heard of alpha-gal syndrome.

So alpha-gal syndrome causes a delayed reaction to eating mammalian meat or products from mammals. So that can be mammal meat, pork, beef, butter, dairy, milk. And it is caused by a tick bite, often from the Lone Star tick. Yes, it's caused by a tick bite.

The symptoms of alpha-gal syndrome can be GI, which is what we're talking about now, vomiting, diarrhea, abdominal pain. They can be skin, so rashes that come and go that can be itchy, or it can be severe. People can get low blood pressure, anaphylaxis, and even problems breathing, but that's pretty rare.

With this new diagnosis, Chris was now faced with the challenge of managing his condition and making adjustments to his lifestyle in order to avoid the debilitating GI issues. It's slowly dawning on me that this is going to have to be a very huge life change. And I was scared too, you know, because I kind of worshipped at the altar of the cow.

for most of my life. So this is going to be hard. This is going to be really, really hard. What is the treatment? What is the golden standard of treating alpha-gal as of right now? The management of alpha-gal syndrome is to remove the alpha-gal from your diet and your life. So definitely removing any meat from an animal that has hair, pork and beef,

And then many folks also go on to remove dairy and butter as well. It's interesting. I wonder if one day someone will invent some kind of alpha-gal blocker, kind of like lactose that you can take lactate. Yeah, totally. So there is no medication for alpha-gal syndrome, but certainly in the future there might be.

With Kim's help and encouragement, Chris made drastic changes to his diet. He gave up his beloved steak and burgers and became mindful of hidden animal byproducts in the food he bought so he could avoid these triggers. It was a lot to manage at times, but was well worth the ability to regain control of his life. I think honestly, for about the first two or three months, I just didn't even believe it.

It seems so unrealistic. And we had been given so many, this is what it is, that it turned out not to be, that I truly didn't believe it. And we were three months or so into the diagnosis, and all of a sudden he's going out and we're doing stuff. And we're going to concerts together. And, you know, we're going out to the movies. And I'm like, that really was it. This is all real. So it took a while to sink in for me because I just had had so many false starts and dead end roads.

What does that mean and how is life different today? It is phenomenal. He's more present in his life. He's happier. He feels good. And he feels a sense of control over his health, which is something that cannot be understated in terms of how important it is. Chris finally felt the relief that he'd been longing for. He was free from the scary symptoms and the stressful lifestyle that his condition imposed on him.

He also joined an online support group for people with alpha-gal syndrome. Just having the other people who've been through this, right, who know where you're coming from, who don't think you're crazy, who don't think you're making it all up or it's all in your head, and understanding all the stress and the depression and

And I also found that it expanded my own empathy, too, you know, because there were several people where their spouses were not very supportive, you know, because we're talking radical diet and lifestyle changes. And, you know, seeing all these people go through that, I felt like I could provide support to these people as well as get support from them. And the community really has been the better aspects of having had this thing.

I think we need a paradigm shift and we need to consider waiting for someone to know exactly that what they ate made them ill is just wrong in alpha-gal syndrome. So we need to be testing people.

I think the biggest thing to take away is you know your body and you know your health better than anyone else. You've been with it longer than anybody else. And so when you know something isn't right with it, keep talking to people until you find someone who's willing to listen to you. Firstly, I hope anyone who has similar symptoms to the kinds of things I had going on, get yourself tested and

Really be an advocate for yourself. If you don't fit into the diagnostic flow chart, you kind of fall by the wayside. And sometimes the only way you can get people's attention is to be a very strong advocate for yourself. The other thing I hope is when it comes to this allergy, I'd like to see this allergy recognized more like all of the other allergies are, you know, like peanut allergies and things like that. Because for some people, this allergy really is life-threatening.

I just have the GI variant, but I know people who literally went exposed to just air from cooking hamburger have to take the EpiPen and wind up in the emergency room because they can't breathe. That's what I really want to see from all this is just awareness. And if anyone gets diagnosed just because they heard me talking about it, I mean, that's great. I'll feel like I accomplished something.

To find out more on alpha-gal syndrome, you can check out the CDC's website at www.cdc.gov or go to alpha-galinformation.org. My name is Christopher Rose. I went through a little over a decade of extreme health challenges because I had alpha-gal syndrome without even knowing it.

On the next episode of Symptomatic, Alicia was diagnosed with plaque psoriasis at just seven years old. Her flare-ups got to the point where they covered almost 90% of her body. Sometimes I felt like nobody else would love me. Sometimes I felt like a burden. I felt like I was cursed. I would ask, what did I do to deserve this?

I just gave up on finding treatment because I said, you know what, I'm just going to be like this for the rest of my life. So I just got to get used to it. She continues changing doctors and treatments all in search of some relief without any success. She'd already given up and come to terms with a life full of unspoken shame and embarrassment when she met a dynamic doctor who changes her entire life.

That's it for this episode of Symptomatic. Thank you for listening. What did you think of this episode? We would love to hear from you. Send us your thoughts or share a medical mystery of your own at symptomatic at iheartmedia.com. And please don't forget to rate and review this podcast wherever you're listening.

Symptomatic, a medical mystery podcast, is a production of Ruby Studio from iHeartMedia. Our show is hosted by me, Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post-production is James Foster. Our producers are Sierra Kaiser and John Irwin, and this episode was researched by Diana Davis. ♪