Case #12: Chris

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 fell 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 but 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 A Lauren Brave Pacheco, and this is symptomatic. Whether he's kayaking, backpacking, hiking, or just working

I dabble in photography as a hobby, so I've got a room full of cameras and dark room chemicals and equipment, and that's kind of my go to when basically I'm not working.

So 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 ann'sle 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 Mentoric. They've been married for almost fifteen years and share a blended family of five children. Chris's battle with a bizarre set of symptoms, it 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. Right, she is definitely the most organized person I've ever met in my life. She's really good with speaking and presentations and basically being able to take things distill it down to the pure essence.

Right.

She just really has a gift for that kind of thing.

This is both Chris and Kim's second marriage. Back in the mid two thousands, 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 two thousand and seven, 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 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 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 takes some thumbs or whatever, and it'll eventually it'll go away.

You know.

Ultimately you fall asleep and you know, the next morning and you're feeling our 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 Jesus 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.

Chris downplayed the multiple trips 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 tombs 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

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 park 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 and you know, rural areas and visit with clients, and not being able to get to a bathroom in time became a real ordeal, you know.

Know, 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.

So 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 withdraw both him and us

I kind of remember my mind that sometimes going to some dark places, you know, where I was. There was one point in time where I really did in my head just thank God. I wish I would just die and this would just be over right, you know, because at the time, I just I didn't feel like I really had a life.

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. And 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'd 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

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 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, loose 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.

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, 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 that was starting to lose touch with reality a little bit. I was kind of hopeless at that point, So Chris.

That must have been so overwhelming.

It was very overwhelming. It was very overwhelming.

It had now been ten 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, 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

My biggest fear was that we would just spend the next ten 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 twenty or thirty 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. Doctor Sarah McGill, a gastro entrology 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 Bell 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 Bell syndrome, 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.

The two illnesses that I was thinking about that you can find with a colonoscopy, one is Crohn's disease or ulterrative 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 the colonoscopy.

I mean, everything came back fine, you know, and I didn't have any of the other symptoms. And then they also did test for like Celiac's 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 of nature. One day, after a walk, he noticed a tick bite on his leg had developed a bullseye rash. He was prescribed doxy cyclin, 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

And then, just on a whim, she was kind of like, you know, it's probably a long shot. Let me, I want to test you for something. And I was like, okay, what.

I had diagnosed some other people with just gi problems with tick bites.

Yeah, and she's like, I'm going to test you for this red meat allergy, this.

Alphic al 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, are you kidding me? 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 couple weeks ago that foreign ten doctors have never heard of alpha gl 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 GL 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 worshiped 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 GL 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 the gal blocker, kind of like lachiose, that he could take lactape. Yeah, totally.

So there is no medication for alpha gel 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 stake and burgers and became mindful of hidden animal byproducts and 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 it, This is

What does that meant? 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 gel 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 you know, you're making it all upwards, all in your head, and understanding all the stress and

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 any one who has similar symptoms to the kinds of things I had going on get yourself tested and you know, 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

To find out more on alphagal syndrome, you can check out the CDC's website at ww dot CDC dot gov or go to alpha galinformation dot 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 plaquoriasis at just seven years old. Her flare ups got to the point where they covered almost ninety percent 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 say, you know what, I'm just gonna 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?