Speaker 1: I drove myself to the emergency room in a sheer
Speaker 1: panic because I was worried if I called the ambulance,
Speaker 1: you know, they wouldn't get there in time.
Speaker 2: He was having chest pains, he fell out of breath,
Speaker 2: he was feeling shaky, and that was the first time
Speaker 2: I really remember that he couldn't do something that we
Speaker 2: used to love doing together.
Speaker 3: So there is no medication. Some people can have pretty
Speaker 3: mild symptoms and other folks can, you know, unfortunately die.
Speaker 1: Frankly, that was incredibly depressing. I'm dying here. Let's figure
Speaker 1: something else out, Let's try something else, because I have
Speaker 1: no life here.
Speaker 4: How terrifying would it be to fight an unknown enemy,
Speaker 4: one you didn't recognize and didn't see coming. What if
Speaker 4: that enemy was coming from within a disease but even
Speaker 4: doctors couldn't identify. Nearly half of all Americans suffer from
Speaker 4: some chronic illness, and many struggle for an accurate diagnosis.
Speaker 4: These are their stories A Lauren Brave Pacheco, and this
Speaker 4: is symptomatic. Whether he's kayaking, backpacking, hiking, or just working
Speaker 4: out in the garden. Chris Rose feels most at home
Speaker 4: while outdoors, where he can breathe fresh air and take
Speaker 4: in the scenery around him. He's also developed a passion
Speaker 4: for capturing his adventures with a camera.
Speaker 1: I dabble in photography as a hobby, so I've got
Speaker 1: a room full of cameras and dark room chemicals and equipment,
Speaker 1: and that's kind of my go to when basically I'm
Speaker 1: not working.
Speaker 4: So who are your favorite or what are your favorite
Speaker 4: subjects to photograph?
Speaker 1: I would probably say landscapes. You know, I'm a big
Speaker 1: fan of ann'sle Adams and that kind of photography.
Speaker 4: I love black and white photography. So you're also a
Speaker 4: big outdoors fan.
Speaker 1: Yes, yes, I do spend a lot of time outdoors.
Speaker 1: I also was a backpacker for a while. I kind
Speaker 1: of got started in all of that when I was younger.
Speaker 1: I got sent off to an outward bound camp for
Speaker 1: a couple of weeks and it's kind of been a
Speaker 1: thing of mine ever since.
Speaker 2: How would you describe Chris to somebody? Chris is incredibly intelligent.
Speaker 2: He knows more about more different topics than anyone I know,
Speaker 2: and he is always willing to help people out. It
Speaker 2: can be someone he's met once before, if they need something,
Speaker 2: he will jump in and so he's an extremely generous
Speaker 2: giving person.
Speaker 4: That was Chris's wife, Kim Mentoric. They've been married for
Speaker 4: almost fifteen years and share a blended family of five children.
Speaker 4: Chris's battle with a bizarre set of symptoms, it would
Speaker 4: eventually go on to rob him of his once active lifestyle,
Speaker 4: Kim would remain his rock through it all. So what
Speaker 4: is it about Kim that attracted you to her? And
Speaker 4: why do you guys make such a good team.
Speaker 1: Well, obviously she's beautiful, but she also, I feel like,
Speaker 1: compliments me in that she has some strengths that happen
Speaker 1: to be weaknesses for me. Right, she is definitely the
Speaker 1: most organized person I've ever met in my life. She's
Speaker 1: really good with speaking and presentations and basically being able
Speaker 1: to take things distill it down to the pure essence.
Speaker 2: Right.
Speaker 1: She just really has a gift for that kind of thing.
Speaker 4: This is both Chris and Kim's second marriage. Back in
Speaker 4: the mid two thousands, Chris had gone through a very
Speaker 4: difficult divorce, which brought a lot of anxiety and depression
Speaker 4: with it. Again, he turned to his love of nature
Speaker 4: as a way to escape, both mentally and physically. But
Speaker 4: little did he know there was no amount of hiking
Speaker 4: or gardening that could stop a mystery illness from changing
Speaker 4: his life forever. How long ago do you first remember
Speaker 4: experiencing unexplainable symptoms?
Speaker 1: Around two thousand and seven, early in the year I'd
Speaker 1: made the decision that I was going to move back
Speaker 1: to North Carolina. This was after I got divorced, and
Speaker 1: I had this kind of weird thing happen right before
Speaker 1: I move where I had this sudden bout of massive
Speaker 1: chest pain and went to the emergency room at the
Speaker 1: hospital I actually worked at.
Speaker 4: Oh my gosh, well take me to that moment. What
Speaker 4: were you doing, What did it feel like? Did you
Speaker 4: drive yourself?
Speaker 1: Yes? I did. I drove myself to the emergency room
Speaker 1: in a sheer panic because I was worried if I
Speaker 1: called the ambulance, you know, they wouldn't get there in time.
Speaker 1: I had never felt anything like that before. Just intense
Speaker 1: chest pain, you know they talk about like the elephant
Speaker 1: on your chest and just pain radiating from everywhere. That's
Speaker 1: essentially what it felt like.
Speaker 4: So you thought you were having a heart attack?
Speaker 1: I did. I actually thought I was dying that day.
Speaker 1: I really did, and you know, had them bring my
Speaker 1: kids in everything because I thought I was a goner, right,
Speaker 1: and they run a bunch of blood tests, they do
Speaker 1: the EKGs and stuff.
Speaker 4: Seemingly out of nowhere. Chris was faced with what felt
Speaker 4: like a life or death situation. Anxiously awaiting his test results,
Speaker 4: Chris was tormented by his thoughts and terrified of what
Speaker 4: would happen next. He relied on his doctors for a
Speaker 4: sense of solace.
Speaker 1: They came back and they were like, well, your troponin
Speaker 1: tests are negative. We don't think you're having a heart attack.
Speaker 1: So basically they just kept me there for a long
Speaker 1: time and watched me, and then they sent me.
Speaker 4: Home, shrugging their shoulders.
Speaker 1: Shrugging their shoulders. They had no idea, but they did
Speaker 1: say it seems like the way you describe your pain,
Speaker 1: it may be coming from your stomach area. And they're like,
Speaker 1: have you been checked for acid reflux? And I was like, no,
Speaker 1: not really, but I do remember having a lot of
Speaker 1: heartburn prior to this, So they're like, here, try this
Speaker 1: broad spectrum antibiotic for my digestive symptoms.
Speaker 4: Provided some temporary relief. Chris focused on his cross country
Speaker 4: move and found ways to live with the bizarre pains
Speaker 4: in his abdomen.
Speaker 1: If I had pain, I was basically just kind of
Speaker 1: lay down, ignore it takes some thumbs or whatever, and
Speaker 1: it'll eventually it'll go away.
Speaker 4: You know.
Speaker 1: Ultimately you fall asleep and you know, the next morning
Speaker 1: and you're feeling our right again. So you're like, Okay,
Speaker 1: well maybe this is just all in my head.
Speaker 3: You know.
Speaker 4: Well, I mean, look, you can laugh about it now,
Speaker 4: but that must have been the antithesis of funny at
Speaker 4: the time.
Speaker 1: Oh yeah, yeah. I had some people making some jokes
Speaker 1: about it, but I didn't think it was particularly funny.
Speaker 1: You know, it scared the Jesus out of me.
Speaker 4: Did they think that there was some kind of an
Speaker 4: anxiety or stress component, Yes.
Speaker 1: They did. Indeed, I had another couple of these episodes
Speaker 1: not long after moving, where I wound up in the
Speaker 1: emergency room and they did tell me, yeah, you probably
Speaker 1: have some kind of anxiety disorder. So they were like, yeah,
Speaker 1: maybe we ought to look at you know, giving you
Speaker 1: some PRN anxiety medication for this. So they did. They
Speaker 1: gave me a prescription for whenever I needed it, and
Speaker 1: you know, of course I still kept having these episodes,
Speaker 1: and I was like, all right, well, I guess it's anxiety,
Speaker 1: you know.
Speaker 4: Chris downplayed the multiple trips the emergency room and how
Speaker 4: scary they really were. He consistently felt excruciating pain in
Speaker 4: his stomach and chest, to the point where relief only
Speaker 4: came from lying down in isolation. So can you describe
Speaker 4: how the episodes morphed at this point and what did
Speaker 4: they feel like in your body and in your mind.
Speaker 1: I would get the same thing. I'd be sitting there
Speaker 1: in the evenings, you know, and getting ready to go
Speaker 1: to bed, and I was all of a sudden sharp
Speaker 1: pains and chest pains and stuff, and I would be like, Okay,
Speaker 1: I must be having an anxiety attack again, you know.
Speaker 1: So I take the tombs for the stomach. Then I
Speaker 1: would take medication to treat the panic attacks. Basically that
Speaker 1: always knocked me out right, So at that point I'd
Speaker 1: just fall asleep. I'd wake up the next morning and
Speaker 1: be like, okay, you know. And it was about this
Speaker 1: time I started really getting the real GI symptoms in
Speaker 1: the sense that I was having to go to the
Speaker 1: bathroom during the day, constantly having a real upset stomach,
Speaker 1: loose stools, that kind of thing. And I just chopped
Speaker 1: it up to the anxiety.
Speaker 4: It's been two years since that first trip to the er.
Speaker 4: By this point, Chris and Kim are newlyweds and start
Speaker 4: to face this mysterious illness together. But even with Kim's support,
Speaker 4: Chris begins to struggle with day to day life. So
Speaker 4: you had bowel urgency, Oh yeah, yeah, and that has
Speaker 4: such a detrimental, debilitating impact on your life and your mind.
Speaker 4: I mean, how severe was it And did you find
Speaker 4: yourself altering your schedule to accommodate.
Speaker 1: Yes, And it was one of those things as time
Speaker 1: went on, obviously we moved into the new house. It
Speaker 1: wasn't long after we moved in I had some more
Speaker 1: of these emergency room episodes, and then the bowel park
Speaker 1: got a lot worse. It was getting to the point
Speaker 1: where I have to travel quite a bit for work,
Speaker 1: and I have to get in the car sometimes and
Speaker 1: drive out to these places and you know, rural areas
Speaker 1: and visit with clients, and not being able to get
Speaker 1: to a bathroom in time became a real ordeal, you know.
Speaker 1: And I remember very distinctly the time where I felt
Speaker 1: like I was just at the end of my rope.
Speaker 1: I was running down Interstate forty going to a client
Speaker 1: down towards Wilmington, you know, and there's a long stretch
Speaker 1: there where there's just nothing, and then all of a sudden,
Speaker 1: out of nowhere, I had to go and I literally
Speaker 1: had to peel tracks off the side of the highway,
Speaker 1: jump a fence, go hide under some trees, you know,
Speaker 1: And I wound up having to leave my underpants in
Speaker 1: the woods there, and then I had to go hit
Speaker 1: a clothing store and buy a new path underwear and
Speaker 1: get cleaned up, you know, so that I could go
Speaker 1: see my client. I mean. And it's crazy to have
Speaker 1: to live like that, right, It's it's terrifying, you.
Speaker 4: Know, terrifying, it's stressful, it's depressing. And then there is
Speaker 4: this element of shame because you don't want to admit
Speaker 4: to people that you have this weakness that we don't
Speaker 4: talk about often, the reality for some people that when
Speaker 4: they say they need to go to the bathroom, it's
Speaker 4: almost too late. Yes, and that impact on your daily
Speaker 4: life must have been so stressful, so overwhelming.
Speaker 1: Yes, it was. It was debilitating, and at this point
Speaker 1: I wasn't going places with my family out of fear
Speaker 1: of either the pain attacks coming back. I'm terrified to
Speaker 1: go without carrying panic medicine with me or being able
Speaker 1: to get out of a situation. And then I'm also
Speaker 1: terrified I'm not going to be able to get to
Speaker 1: a bathroom in time, right, So you know, I would
Speaker 1: avoid going to concerts. I would avoid going to the
Speaker 1: amusement park with the family or going on long trips.
Speaker 1: I mean I basically kind of became a hermit at home.
Speaker 2: So it's one of those things where it's hard to
Speaker 2: have a conversation about that. You don't want to tell
Speaker 2: your friends, like I can't come out to dinner with
Speaker 2: you because I don't know if the bathroom is available.
Speaker 2: Like it creates both a physical distance because you can't
Speaker 2: do things you want, and it also creates that psychological
Speaker 2: difference because you're not comfortable talking about what's going on
Speaker 2: with your friends because it's embarrassing. And so I think
Speaker 2: we saw a lot of withdraw both him and us
Speaker 2: as a couple. We just couldn't do as much as
Speaker 2: we wanted to do together.
Speaker 1: I kind of remember my mind that sometimes going to
Speaker 1: some dark places, you know, where I was. There was
Speaker 1: one point in time where I really did in my
Speaker 1: head just thank God. I wish I would just die
Speaker 1: and this would just be over right, you know, because
Speaker 1: at the time, I just I didn't feel like I
Speaker 1: really had a life.
Speaker 4: Chris's symptoms kept getting worse. He returned to the er,
Speaker 4: where doctors came up with a new theory about what
Speaker 4: was causing his condition.
Speaker 1: There was a doctor there and he's like, you know,
Speaker 1: I have a hunch, let me check something. And he
Speaker 1: wheels this ultrasound machine into the room. Right, they start
Speaker 1: ultrasounding my belly, you know, and he's like, aha, I
Speaker 1: think you have a gallbladder problem. You have gallstones. And
Speaker 1: I was like, huh, okay. I didn't realize that. So
Speaker 1: for a while there, I'd kind of had hope because
Speaker 1: I thought, oh wow, maybe we really have found this problem. Now,
Speaker 1: you know, I'm at the point now I'll do anything
Speaker 1: to fix this. I basically decided, okay, let's take the
Speaker 1: gallbladder out. And they did say I had gallstones and
Speaker 1: it was diseased. But fast forward after the removal and
Speaker 1: after a time of trying to get things healed up
Speaker 1: in everything, I'm right back to having the same problems again.
Speaker 4: Oh gosh, Chris, you must have I mean, at that point,
Speaker 4: you've undergone major surgery and you're in the same boat.
Speaker 2: Yes, I had high hopes that it was going to
Speaker 2: result in a significant change, and it was really disheartening
Speaker 2: six months after the surgery when very little was improved
Speaker 2: in terms of his health, and so I think to me,
Speaker 2: it kind of felt like we had a great hope
Speaker 2: there that this was the answer, and then it just
Speaker 2: turned out not to have been it.
Speaker 4: Though Chris had to bear the physical symptoms alone, the
Speaker 4: emotional toll of the insidious symptoms was shared with Kim
Speaker 4: and their family.
Speaker 2: I was frustrated because it felt like every medical professional
Speaker 2: that he went to defaulted to the same change your diet,
Speaker 2: loose some weight answer. And it became a running joke
Speaker 2: with us, right because he kept saying, I know that's
Speaker 2: not it. There's something that's really going on, but he
Speaker 2: just wasn't getting any answers, and that was frustrating for me.
Speaker 2: I think at one point I even said, let me
Speaker 2: come to your doctor's appointment and I'll be the crazy,
Speaker 2: nagging wife and I'll annoy them, because we just felt like.
Speaker 1: He wasn't being heard. There was a lot of time
Speaker 1: where I was freaking out, thinking I was dying and
Speaker 1: absolutely losing my mind, and she's kind of the calm person,
Speaker 1: you know, standing at the back side of the room, going,
Speaker 1: you know, I think you're okay. I know you feel
Speaker 1: like you're dying, You're probably okay.
Speaker 2: The biggest thing that I tried to do was just
Speaker 2: to validate his experience. I'm not sure how helpful that
Speaker 2: was when he was really suffering and miserable and sick,
Speaker 2: but sometimes I would just say, like, I do believe you.
Speaker 2: You need to know that somebody believes you.
Speaker 4: Running out of options, the doctors were willing to try
Speaker 4: anything to get Chris answers.
Speaker 1: They were like, okay, well, let's set you up for
Speaker 1: an endoscopy. Went back into the hospital and they're like, oh,
Speaker 1: it looks like you have bile reflux. That's why you're
Speaker 1: having all these problems. Again, they put me on some
Speaker 1: medication for that, and I still wasn't getting any relief.
Speaker 4: Feeling increasingly hopeless, Chris worried his ongoing health issues would
Speaker 4: eventually drive even Kim away.
Speaker 1: Frankly, sometimes I thought maybe she would leave me, because
Speaker 1: I mean, what I was turning into was kind of
Speaker 1: this super depressed, paranoid person that was starting to lose
Speaker 1: touch with reality a little bit. I was kind of
Speaker 1: hopeless at that point, So Chris.
Speaker 4: That must have been so overwhelming.
Speaker 1: It was very overwhelming. It was very overwhelming.
Speaker 4: It had now been ten years of agony and uncertainty
Speaker 4: for Chris. He'd experienced the trauma of being rushed to
Speaker 4: the er with excruciating chest pain, thinking his life would
Speaker 4: be cut short by a heart attack. He had seen
Speaker 4: countless doctors and specialists since then, but none of them
Speaker 4: could diagnose or treat his mysterious illness. Chris would soon
Speaker 4: become so desperate that he takes matters into his own hands.
Speaker 1: I was just so frustrated with the whole situation. I'm like,
Speaker 1: I'm dying here. Let's figure something else out, Let's try
Speaker 1: something else, because I have no life here.
Speaker 4: We'll be right back with Symptomatic, a Medical Mystery Podcast.
Speaker 4: Now back to Symptomatic, a Medical Mystery Podcast. Chris Rose
Speaker 4: had been battling an unknown illness for over a decade.
Speaker 4: It all began with severe chest and stomach pain that
Speaker 4: felt more like a heart attack, and he was terrified
Speaker 4: that his days were numbered. However, as the gastrointestinal symptoms progressed.
Speaker 4: Over several years, they began to take over his life.
Speaker 4: He was mostly confined to his home, unable to enjoy
Speaker 4: the people and activities he loved. With no semblance of
Speaker 4: hope on the horizon, Chris plunged into a deep depression. Kim,
Speaker 4: was there a time that really felt like rock bottom?
Speaker 4: Where you were just worried or terrified and what were
Speaker 4: your deepest fears?
Speaker 2: My biggest fear was that we would just spend the
Speaker 2: next ten years finding out that it wasn't anything. That winter,
Speaker 2: he went through some really deep depression. Sometimes he would
Speaker 2: sit in the living room with all the lights off
Speaker 2: and just stare. I remember him saying, like, my life
Speaker 2: is over as far as being able to do what
Speaker 2: I want to do. Chris loves taking pictures. He's a
Speaker 2: big photographer, and he wanted to go out in the
Speaker 2: woods and take nature pictures.
Speaker 4: And he couldn't.
Speaker 2: Get twenty or thirty feet from the car because he
Speaker 2: would be afraid that he was going to get sick
Speaker 2: and he wouldn't know what to do.
Speaker 1: And frankly, that was incredibly depressing, and I remember thinking
Speaker 1: we got to do something different. I'm dying here. Let's
Speaker 1: figure something else out, Let's try something else.
Speaker 4: It was just after that dire winter when Chris would
Speaker 4: pursue a new doctor to look at his diagnostic journey.
Speaker 4: Doctor Sarah McGill, a gastro entrology expert, started hunting for
Speaker 4: an explanation, bringing fresh eyes and a new perspective to
Speaker 4: Chris's struggle.
Speaker 3: I had some ideas, but I remember him giving this
Speaker 3: story that is so typical, honestly, among people with irritable
Speaker 3: Bell syndrome, Like they're having a lot of abdominal pain,
Speaker 3: they're having a lot of diarrhea, having to rush to
Speaker 3: the bathroom, having to think about where the bathroom is
Speaker 3: going to be now, Irritable Bell syndrome, it's a diagnosis
Speaker 3: based on symptoms. It's not a diagnosis based on what's
Speaker 3: happening in your body. That can be a whole variety
Speaker 3: of different things.
Speaker 4: When you met her, what were your first impressions?
Speaker 1: She had a very good bedside manner. She was very
Speaker 1: empathetic and incredibly intelligent. I thought, hmm, okay, I think
Speaker 1: this is someone I can work with. Right. She just
Speaker 1: felt like a person I could trust.
Speaker 4: What was her reaction to hearing your symptoms.
Speaker 1: I think initially kind of thought it might just be IBS,
Speaker 1: which is something that runs in my family. And I
Speaker 1: really didn't want to hear that because I was like, oh, geez,
Speaker 1: I know, there's nothing they can do about that. It
Speaker 1: just means you're going to be this way forever.
Speaker 4: So the first thing I believe you ordered was a
Speaker 4: colonoscopy with him, right.
Speaker 3: The two illnesses that I was thinking about that you
Speaker 3: can find with a colonoscopy, one is Crohn's disease or
Speaker 3: ulterrative colitis, and then there's a disease called microscopic colitis,
Speaker 3: which causes a lot of diarrhea, but usually it won't
Speaker 3: cause abdominal pain. But that also we can diagnose with
Speaker 3: the colonoscopy.
Speaker 1: I mean, everything came back fine, you know, and I
Speaker 1: didn't have any of the other symptoms. And then they
Speaker 1: also did test for like Celiac's disease and food allergies
Speaker 1: and stuff, but nothing ever came back.
Speaker 4: Remaining hopeful and realistic about the continued search for answers,
Speaker 4: Chris was able to reclaim his love for the outdoors
Speaker 4: of nature. One day, after a walk, he noticed a
Speaker 4: tick bite on his leg had developed a bullseye rash.
Speaker 4: He was prescribed doxy cyclin, an antibiotic for possible infection.
Speaker 4: To his surprise, it actually seemed to help his stomach issues.
Speaker 4: The temporary relief provided by the tick bite medication immediately
Speaker 4: raised a flag for doctor McGill. She suspected something that
Speaker 4: other doctors had failed to consider, that his love of
Speaker 4: the outdoors may have put him directly into harm's way.
Speaker 1: And then, just on a whim, she was kind of like,
Speaker 1: you know, it's probably a long shot. Let me, I
Speaker 1: want to test you for something. And I was like, okay, what.
Speaker 3: I had diagnosed some other people with just gi problems
Speaker 3: with tick bites.
Speaker 1: Yeah, and she's like, I'm going to test you for
Speaker 1: this red meat allergy, this.
Speaker 3: Alphic al syndrome. It's a very inexpensive blood test.
Speaker 1: Oh, that weird thing. I was like, yeah, that's whatever.
Speaker 3: I thought. We didn't really have anything to lose by
Speaker 3: checking for it.
Speaker 1: They took my blood and god, I want to say,
Speaker 1: it was like a day later or whatever she calls it,
Speaker 1: She's like, you're positive. I was like, what shock of
Speaker 1: your life kind of thing.
Speaker 2: People have these flashbulb moments where you remember exactly where
Speaker 2: you were sitting and what you were wearing and what
Speaker 2: you were doing. And I was with my daughter. She
Speaker 2: was at a college sporting tournament, and I was sitting
Speaker 2: on the bleachers watching her. And he called me and
Speaker 2: told me about the diagnosis. And I said, you're kidding.
Speaker 2: That's impossible, that doesn't even make sense. I've never even
Speaker 2: heard of this thing. That's fake. You're just making this up.
Speaker 2: I think I even actually like stood up and cursed, right,
Speaker 2: I was.
Speaker 4: Like, are you kidding me? Alpha gal syndrome a food
Speaker 4: allergy to the alpha gal sugar molecule found in most mammals.
Speaker 4: Chris finally had a name for what had been tormenting
Speaker 4: him after a decade of distressing symptoms. Explain to me
Speaker 4: in a nutshell, alpha gal syndrome. Because most people haven't
Speaker 4: heard of it.
Speaker 3: Right, there's just the CBC report couple weeks ago that
Speaker 3: foreign ten doctors have never heard of alpha gl syndrome.
Speaker 3: So alpha gal syndrome causes a delayed reaction to eating
Speaker 3: mammalian meat or products from mammals, so that can be
Speaker 3: mammal meat, pork, beef, butter, dairy milk.
Speaker 4: And it is caused by a tick bite, often from
Speaker 4: the Lone Star tick.
Speaker 3: Yes, it's caused by a tick bite. The symptoms of
Speaker 3: alpha GL syndrome can be GI, which is what we're
Speaker 3: talking about now, vomiting, diarrhea, abdominal pain. They can be
Speaker 3: skin so rashes that come and go, that can be itchy,
Speaker 3: or it can be severe. People can get low blood pressure, anaphylaxis,
Speaker 3: and even problems breathing, but that's pretty rare.
Speaker 4: With this new diagnosis, Chris was now faced with the
Speaker 4: challenge of managing his condition and making adjustments to his
Speaker 4: lifestyle in order to avoid the debilitating GI issues.
Speaker 1: It's slowly dawning on me that this is going to
Speaker 1: have to be a very huge life change. And I
Speaker 1: was scared too, you know, because I kind of worshiped
Speaker 1: at the altar of the cow for most of my life.
Speaker 1: So this is going to be hard. This is going
Speaker 1: to be really, really hard.
Speaker 4: What is the treatment? What is the golden standard of
Speaker 4: treating alpha gal as of right now.
Speaker 3: The management of alpha GL syndrome is to remove the
Speaker 3: alpha gal from your diet and your life, So definitely
Speaker 3: removing any meat from an animal that has hair, pork
Speaker 3: and beef, and then many folks also go on to
Speaker 3: remove dairy and butter as well.
Speaker 4: It's interesting. I wonder if one day someone will invent
Speaker 4: some kind of the gal blocker, kind of like lachiose,
Speaker 4: that he could take lactape. Yeah, totally.
Speaker 3: So there is no medication for alpha gel syndrome, but
Speaker 3: certainly in the future there might be.
Speaker 4: With Kim's help and encouragement, Chris made drastic changes to
Speaker 4: his diet. He gave up his beloved stake and burgers
Speaker 4: and became mindful of hidden animal byproducts and the food
Speaker 4: he bought so he could avoid these triggers. It was
Speaker 4: a lot to manage at times, but was well worth
Speaker 4: the ability to regain control of his life.
Speaker 2: I think, honestly, for about the first two or three months,
Speaker 2: I just didn't even believe it. It seems so unrealistic,
Speaker 2: and we had been given so many this is what
Speaker 2: it is that it turned out not to be that.
Speaker 2: I truly didn't believe it. And we were three months
Speaker 2: or so into the diagnosis, and all of a sudden,
Speaker 2: he's going out and we're doing stuff, and we're going
Speaker 2: to concerts together, and you know, we're going out to
Speaker 2: the movies, and I'm like that really it, This is
Speaker 2: all real. So it took a while to sink in
Speaker 2: for me because I just had had so many false
Speaker 2: starts and dead end roads.
Speaker 4: What does that meant? And how is life different today?
Speaker 4: It is phenomenal.
Speaker 2: He's more present in his life, he's happier, he feels good,
Speaker 2: and he feels a sense of control over his health,
Speaker 2: which is something that cannot be understated in terms of
Speaker 2: how important it is.
Speaker 4: Chris finally felt the relief that he'd been longing for.
Speaker 4: He was free from the scary symptoms and the stressful
Speaker 4: lifestyle that his condition imposed on him. He also joined
Speaker 4: an online support group for people with alpha gel syndrome.
Speaker 1: Just having the other people who've been through this right
Speaker 1: who know where you're coming from, who don't think you're crazy,
Speaker 1: who don't think you you know, you're making it all upwards,
Speaker 1: all in your head, and understanding all the stress and
Speaker 1: the depression. And I also found that it expanded my
Speaker 1: own empathy too, you know, because there were several people
Speaker 1: where their spouses were not very supportive, you know, because
Speaker 1: we're talking radical diet and lifestyle changes, and you know,
Speaker 1: seeing all these people go through that, I felt like
Speaker 1: I could provide support to these people as well as
Speaker 1: get support from them, and the community really has been
Speaker 1: the better aspects of having had this thing.
Speaker 3: I think we need a paradigm shift and we need
Speaker 3: to consider waiting for someone to know exactly that what
Speaker 3: they ate made them ill is just wrong in alpha
Speaker 3: gal syndrome, so we need to be testing people.
Speaker 2: I think the biggest thing to take away is you
Speaker 2: know your body, and you know your health better than
Speaker 2: anyone else. You've been with it longer than anybody else,
Speaker 2: and so when you know something isn't right with it,
Speaker 2: keep talking to people until you find someone who's willing
Speaker 2: to listen to you.
Speaker 1: Firstly, I hope any one who has similar symptoms to
Speaker 1: the kinds of things I had going on get yourself
Speaker 1: tested and you know, really be an advocate for yourself.
Speaker 1: If you don't fit into the diagnostic flow chart, you
Speaker 1: kind of fall by the wayside, and sometimes the only
Speaker 1: way you can get people's attention is to be a
Speaker 1: very strong advocate for yourself. The other thing I hope
Speaker 1: is when it comes to this allergy, I'd like to
Speaker 1: see this allergy recognized more like all of the other
Speaker 1: allergies are, you know, like peanut allergies and things like that,
Speaker 1: because for some people this allergy really is life threatening.
Speaker 1: I just have the GI variant, but I know people
Speaker 1: who literally, when exposed to just air from cooking hamburger,
Speaker 1: have to take the EpiPen and wind up in the
Speaker 1: emergency room because they can't breathe. That's what I really
Speaker 1: want to see from all this is just awareness. And
Speaker 1: if anyone gets diagnosed just because they heard me talking
Speaker 1: about it, I mean, that's great. I'll feel like I
Speaker 1: accomplished something.
Speaker 4: To find out more on alphagal syndrome, you can check
Speaker 4: out the CDC's website at ww dot CDC dot gov
Speaker 4: or go to alpha galinformation dot org.
Speaker 1: My name is Christopher Rose. I went through a little
Speaker 1: over a decade of extreme health challenges because I had
Speaker 1: alpha gal syndrome without even knowing it.
Speaker 4: On the next episode of Symptomatic, Alicia was diagnosed with
Speaker 4: plaquoriasis at just seven years old. Her flare ups got
Speaker 4: to the point where they covered almost ninety percent of
Speaker 4: her body.
Speaker 5: Sometimes I felt like nobody else would love me. Sometimes
Speaker 5: I felt like a burden. I felt like I was cursed.
Speaker 5: I would ask what did I do to deserve this.
Speaker 5: I just gave up on finding treatment because I say,
Speaker 5: you know what, I'm just gonna be like this for
Speaker 5: the rest of my life, so I just got to
Speaker 5: get used to it.
Speaker 4: She continues changing doctors and treatments, all in search of
Speaker 4: some relief, without any success. She'd already given up and
Speaker 4: come to terms with a life full of unspoken shame
Speaker 4: and embarrassment when she met a dynamic doctor who changes
Speaker 4: her entire life. That's it for this episode of Symptomatic.
Speaker 4: Thank you for listening. What did you think of this episode?
Speaker 4: We would love to hear from you. Send us your
Speaker 4: thoughts or share a medical mystery of your own at
Speaker 4: Symptomatic at iHeartMedia dot com, and please don't forget to
Speaker 4: rate and review this podcast wherever you're listening. Symptomatic Medical
Speaker 4: Mystery Podcast is a production of Ruby Studio from iHeartMedia.
Speaker 4: Our show is hosted by me Lauren bred Pacheco. Executive
Speaker 4: producers are Matt Ramano and myself. Our EP of post
Speaker 4: production is James Foster. Our producers are Sierra Kaiser and
Speaker 4: John Irwin. And this episode was researched by Diana Davis