November 14, 2023 • 32 mins
After going through a challenging divorce and relocating cross country, Chris was struggling with depression and anxiety. For a while, he simply ignored his GI symptoms as they progressively got worse. His bowel issues were soon preventing him from living the life he loved: hiking, attending concerts, and participating in activities with his kids. The situation deteriorated to the point where he had to be rushed to the ER multiple times, sure he was having a heart attack. However, the reality was far more complex.
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Speaker 1 (00:04):
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.
Speaker 2 (00:13):
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.
Speaker 3 (00:24):
So there is no medication. Some people can have pretty
mild symptoms and other folks can, you know, unfortunately die.
Speaker 1 (00:33):
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.
Speaker 4 (00:48):
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.
(01:12):
These are their stories A Lauren Brave Pacheco, and this
is symptomatic. Whether he's kayaking, backpacking, hiking, or just working
(01:36):
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.
Speaker 1 (01:48):
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.
Speaker 4 (02:02):
So who are your favorite or what are your favorite
subjects to photograph?
Speaker 1 (02:06):
I would probably say landscapes. You know, I'm a big
fan of ann'sle Adams and that kind of photography.
Speaker 4 (02:12):
I love black and white photography. So you're also a
big outdoors fan.
Speaker 1 (02:18):
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.
Speaker 2 (02:35):
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
(02:55):
giving person.
Speaker 4 (02:57):
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
(03:18):
why do you guys make such a good team.
Speaker 1 (03:22):
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
(03:44):
to take things distill it down to the pure essence.
Speaker 2 (03:47):
Right.
Speaker 1 (03:48):
She just really has a gift for that kind of thing.
Speaker 4 (03:53):
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
(04:16):
his life forever. How long ago do you first remember
experiencing unexplainable symptoms?
Speaker 1 (04:27):
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
(04:47):
chest pain and went to the emergency room at the
hospital I actually worked at.
Speaker 4 (04:52):
Oh my gosh, well take me to that moment. What
were you doing, What did it feel like? Did you
drive yourself?
Speaker 1 (05:00):
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
(05:24):
essentially what it felt like.
Speaker 4 (05:26):
So you thought you were having a heart attack?
Speaker 1 (05:28):
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.
Speaker 4 (05:44):
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.
Speaker 1 (06:00):
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.
Speaker 4 (06:10):
Home, shrugging their shoulders.
Speaker 1 (06:13):
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
(06:35):
broad spectrum antibiotic for my digestive symptoms.
Speaker 4 (06:38):
Provided some temporary relief. Chris focused on his cross country
move and found ways to live with the bizarre pains
in his abdomen.
Speaker 1 (06:47):
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.
Speaker 4 (06:54):
You know.
Speaker 1 (06:54):
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.
Speaker 3 (07:01):
You know.
Speaker 4 (07:02):
Well, I mean, look, you can laugh about it now,
but that must have been the antithesis of funny at
the time.
Speaker 1 (07:10):
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.
Speaker 4 (07:23):
Did they think that there was some kind of an
anxiety or stress component, Yes.
Speaker 1 (07:28):
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
(07:51):
you know, of course I still kept having these episodes,
and I was like, all right, well, I guess it's anxiety,
you know.
Speaker 4 (07:58):
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
(08:20):
they feel like in your body and in your mind.
Speaker 1 (08:24):
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
(08:46):
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,
(09:06):
loose stools, that kind of thing. And I just chopped
it up to the anxiety.
Speaker 4 (09:14):
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
(09:36):
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.
Speaker 1 (09:49):
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,
(10:10):
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.
And I remember very distinctly the time where I felt
like I was just at the end of my rope.
(10:31):
I was running down Interstate forty 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,
(10:52):
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 path 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 it's terrifying, you.
Speaker 4 (11:09):
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
(11:33):
life must have been so stressful, so overwhelming.
Speaker 1 (11:39):
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
(12:00):
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.
Speaker 2 (12:14):
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
(12:37):
with your friends because it's embarrassing. And so I think
we saw a lot of withdraw both him and us
as a couple. We just couldn't do as much as
we wanted to do together.
Speaker 1 (12:48):
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.
Speaker 4 (13:05):
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.
Speaker 1 (13:14):
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
(13:37):
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
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
(13:58):
after a time of trying to get things healed up
in everything, I'm right back to having the same problems again.
Speaker 4 (14:05):
Oh gosh, Chris, you must have I mean, at that point,
you've undergone major surgery and you're in the same boat.
Speaker 2 (14:12):
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.
Speaker 4 (14:36):
Though Chris had to bear the physical symptoms alone, the
emotional toll of the insidious symptoms was shared with Kim
and their family.
Speaker 2 (14:46):
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.
(15:08):
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.
Speaker 1 (15:17):
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.
Speaker 2 (15:35):
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.
Speaker 4 (15:50):
Running out of options, the doctors were willing to try
anything to get Chris answers.
Speaker 1 (15:57):
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.
Speaker 4 (16:17):
Feeling increasingly hopeless, Chris worried his ongoing health issues would
eventually drive even Kim away.
Speaker 1 (16:25):
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.
Speaker 4 (16:41):
That must have been so overwhelming.
Speaker 1 (16:44):
It was very overwhelming. It was very overwhelming.
Speaker 4 (16:49):
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.
Speaker 1 (17:13):
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.
Speaker 4 (17:27):
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.
(17:48):
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
(18:09):
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?
Speaker 2 (18:31):
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
(18:52):
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.
Speaker 4 (19:01):
And he couldn't.
Speaker 2 (19:02):
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.
Speaker 1 (19:08):
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.
Speaker 4 (19:22):
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.
Speaker 3 (19:42):
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
(20:02):
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.
Speaker 4 (20:15):
When you met her, what were your first impressions?
Speaker 1 (20:19):
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.
Speaker 4 (20:32):
What was her reaction to hearing your symptoms.
Speaker 1 (20:37):
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.
Speaker 4 (20:54):
So the first thing I believe you ordered was a
colonoscopy with him, right.
Speaker 3 (20:59):
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.
Speaker 1 (21:23):
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.
Speaker 4 (21:37):
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.
(22:01):
The temporary relief provided by the tick bite medication immediately
raised a flag for doctor 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.
Speaker 1 (22:18):
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.
Speaker 3 (22:29):
I had diagnosed some other people with just gi problems
with tick bites.
Speaker 1 (22:35):
Yeah, and she's like, I'm going to test you for
this red meat allergy, this.
Speaker 3 (22:40):
Alphic al syndrome. It's a very inexpensive blood test.
Speaker 1 (22:45):
Oh, that weird thing. I was like, yeah, that's whatever.
Speaker 3 (22:49):
I thought. We didn't really have anything to lose by
checking for it.
Speaker 1 (22:53):
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.
Speaker 2 (23:05):
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
(23:27):
heard of this thing. That's fake. You're just making this up.
I think I even actually like stood up and cursed, right,
I was.
Speaker 4 (23:34):
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
(23:57):
heard of it.
Speaker 3 (23:58):
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
(24:18):
mammal meat, pork, beef, butter, dairy milk.
Speaker 4 (24:24):
And it is caused by a tick bite, often from
the Lone Star tick.
Speaker 3 (24:29):
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,
(24:51):
and even problems breathing, but that's pretty rare.
Speaker 4 (24:55):
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.
Speaker 1 (25:07):
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.
Speaker 4 (25:27):
What is the treatment? What is the golden standard of
treating alpha gal as of right now.
Speaker 3 (25:33):
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.
Speaker 4 (25:57):
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.
Speaker 3 (26:04):
So there is no medication for alpha gel syndrome, but
certainly in the future there might be.
Speaker 4 (26:15):
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.
Speaker 2 (26:35):
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
(26:58):
the movies, and I'm like that really 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.
Speaker 4 (27:09):
What does that meant? And how is life different today?
It is phenomenal.
Speaker 2 (27:13):
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.
Speaker 4 (27:26):
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.
Speaker 1 (27:40):
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
the depression. And I also found that it expanded my
(28:00):
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.
Speaker 3 (28:24):
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.
Speaker 2 (28:42):
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.
Speaker 1 (28:58):
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
(29:20):
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, when exposed to just air from cooking hamburger,
(29:44):
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.
Speaker 4 (30:02):
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.
Speaker 1 (30:13):
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.
Speaker 4 (30:23):
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.
Speaker 5 (30:35):
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
(30:57):
the rest of my life, so I just got to
get used to it.
Speaker 4 (31:01):
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?
(31:23):
We would love to hear from you. Send us your
thoughts or share a medical mystery of your own at
Symptomatic at iHeartMedia dot com, and please don't forget to
rate and review this podcast wherever you're listening. Symptomatic Medical
Mystery Podcast is a production of Ruby Studio from iHeartMedia.
Our show is hosted by me Lauren bred Pacheco. Executive
(31:45):
producers are Matt Ramano 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
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.
Speaker 2 (00:13):
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.
Speaker 3 (00:24):
So there is no medication. Some people can have pretty
mild symptoms and other folks can, you know, unfortunately die.
Speaker 1 (00:33):
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.
Speaker 4 (00:48):
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.
(01:12):
These are their stories A Lauren Brave Pacheco, and this
is symptomatic. Whether he's kayaking, backpacking, hiking, or just working
(01:36):
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.
Speaker 1 (01:48):
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.
Speaker 4 (02:02):
So who are your favorite or what are your favorite
subjects to photograph?
Speaker 1 (02:06):
I would probably say landscapes. You know, I'm a big
fan of ann'sle Adams and that kind of photography.
Speaker 4 (02:12):
I love black and white photography. So you're also a
big outdoors fan.
Speaker 1 (02:18):
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.
Speaker 2 (02:35):
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
(02:55):
giving person.
Speaker 4 (02:57):
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
(03:18):
why do you guys make such a good team.
Speaker 1 (03:22):
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
(03:44):
to take things distill it down to the pure essence.
Speaker 2 (03:47):
Right.
Speaker 1 (03:48):
She just really has a gift for that kind of thing.
Speaker 4 (03:53):
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
(04:16):
his life forever. How long ago do you first remember
experiencing unexplainable symptoms?
Speaker 1 (04:27):
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
(04:47):
chest pain and went to the emergency room at the
hospital I actually worked at.
Speaker 4 (04:52):
Oh my gosh, well take me to that moment. What
were you doing, What did it feel like? Did you
drive yourself?
Speaker 1 (05:00):
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
(05:24):
essentially what it felt like.
Speaker 4 (05:26):
So you thought you were having a heart attack?
Speaker 1 (05:28):
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.
Speaker 4 (05:44):
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.
Speaker 1 (06:00):
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.
Speaker 4 (06:10):
Home, shrugging their shoulders.
Speaker 1 (06:13):
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
(06:35):
broad spectrum antibiotic for my digestive symptoms.
Speaker 4 (06:38):
Provided some temporary relief. Chris focused on his cross country
move and found ways to live with the bizarre pains
in his abdomen.
Speaker 1 (06:47):
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.
Speaker 4 (06:54):
You know.
Speaker 1 (06:54):
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.
Speaker 3 (07:01):
You know.
Speaker 4 (07:02):
Well, I mean, look, you can laugh about it now,
but that must have been the antithesis of funny at
the time.
Speaker 1 (07:10):
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.
Speaker 4 (07:23):
Did they think that there was some kind of an
anxiety or stress component, Yes.
Speaker 1 (07:28):
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
(07:51):
you know, of course I still kept having these episodes,
and I was like, all right, well, I guess it's anxiety,
you know.
Speaker 4 (07:58):
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
(08:20):
they feel like in your body and in your mind.
Speaker 1 (08:24):
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
(08:46):
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,
(09:06):
loose stools, that kind of thing. And I just chopped
it up to the anxiety.
Speaker 4 (09:14):
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
(09:36):
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.
Speaker 1 (09:49):
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,
(10:10):
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.
And I remember very distinctly the time where I felt
like I was just at the end of my rope.
(10:31):
I was running down Interstate forty 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,
(10:52):
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 path 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 it's terrifying, you.
Speaker 4 (11:09):
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
(11:33):
life must have been so stressful, so overwhelming.
Speaker 1 (11:39):
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
(12:00):
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.
Speaker 2 (12:14):
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
(12:37):
with your friends because it's embarrassing. And so I think
we saw a lot of withdraw both him and us
as a couple. We just couldn't do as much as
we wanted to do together.
Speaker 1 (12:48):
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.
Speaker 4 (13:05):
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.
Speaker 1 (13:14):
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
(13:37):
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
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
(13:58):
after a time of trying to get things healed up
in everything, I'm right back to having the same problems again.
Speaker 4 (14:05):
Oh gosh, Chris, you must have I mean, at that point,
you've undergone major surgery and you're in the same boat.
Speaker 2 (14:12):
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.
Speaker 4 (14:36):
Though Chris had to bear the physical symptoms alone, the
emotional toll of the insidious symptoms was shared with Kim
and their family.
Speaker 2 (14:46):
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.
(15:08):
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.
Speaker 1 (15:17):
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.
Speaker 2 (15:35):
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.
Speaker 4 (15:50):
Running out of options, the doctors were willing to try
anything to get Chris answers.
Speaker 1 (15:57):
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.
Speaker 4 (16:17):
Feeling increasingly hopeless, Chris worried his ongoing health issues would
eventually drive even Kim away.
Speaker 1 (16:25):
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.
Speaker 4 (16:41):
That must have been so overwhelming.
Speaker 1 (16:44):
It was very overwhelming. It was very overwhelming.
Speaker 4 (16:49):
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.
Speaker 1 (17:13):
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.
Speaker 4 (17:27):
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.
(17:48):
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
(18:09):
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?
Speaker 2 (18:31):
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
(18:52):
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.
Speaker 4 (19:01):
And he couldn't.
Speaker 2 (19:02):
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.
Speaker 1 (19:08):
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.
Speaker 4 (19:22):
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.
Speaker 3 (19:42):
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
(20:02):
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.
Speaker 4 (20:15):
When you met her, what were your first impressions?
Speaker 1 (20:19):
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.
Speaker 4 (20:32):
What was her reaction to hearing your symptoms.
Speaker 1 (20:37):
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.
Speaker 4 (20:54):
So the first thing I believe you ordered was a
colonoscopy with him, right.
Speaker 3 (20:59):
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.
Speaker 1 (21:23):
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.
Speaker 4 (21:37):
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.
(22:01):
The temporary relief provided by the tick bite medication immediately
raised a flag for doctor 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.
Speaker 1 (22:18):
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.
Speaker 3 (22:29):
I had diagnosed some other people with just gi problems
with tick bites.
Speaker 1 (22:35):
Yeah, and she's like, I'm going to test you for
this red meat allergy, this.
Speaker 3 (22:40):
Alphic al syndrome. It's a very inexpensive blood test.
Speaker 1 (22:45):
Oh, that weird thing. I was like, yeah, that's whatever.
Speaker 3 (22:49):
I thought. We didn't really have anything to lose by
checking for it.
Speaker 1 (22:53):
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.
Speaker 2 (23:05):
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
(23:27):
heard of this thing. That's fake. You're just making this up.
I think I even actually like stood up and cursed, right,
I was.
Speaker 4 (23:34):
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
(23:57):
heard of it.
Speaker 3 (23:58):
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
(24:18):
mammal meat, pork, beef, butter, dairy milk.
Speaker 4 (24:24):
And it is caused by a tick bite, often from
the Lone Star tick.
Speaker 3 (24:29):
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,
(24:51):
and even problems breathing, but that's pretty rare.
Speaker 4 (24:55):
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.
Speaker 1 (25:07):
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.
Speaker 4 (25:27):
What is the treatment? What is the golden standard of
treating alpha gal as of right now.
Speaker 3 (25:33):
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.
Speaker 4 (25:57):
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.
Speaker 3 (26:04):
So there is no medication for alpha gel syndrome, but
certainly in the future there might be.
Speaker 4 (26:15):
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.
Speaker 2 (26:35):
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
(26:58):
the movies, and I'm like that really 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.
Speaker 4 (27:09):
What does that meant? And how is life different today?
It is phenomenal.
Speaker 2 (27:13):
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.
Speaker 4 (27:26):
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.
Speaker 1 (27:40):
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
the depression. And I also found that it expanded my
(28:00):
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.
Speaker 3 (28:24):
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.
Speaker 2 (28:42):
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.
Speaker 1 (28:58):
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
(29:20):
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, when exposed to just air from cooking hamburger,
(29:44):
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.
Speaker 4 (30:02):
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.
Speaker 1 (30:13):
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.
Speaker 4 (30:23):
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.
Speaker 5 (30:35):
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
(30:57):
the rest of my life, so I just got to
get used to it.
Speaker 4 (31:01):
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?
(31:23):
We would love to hear from you. Send us your
thoughts or share a medical mystery of your own at
Symptomatic at iHeartMedia dot com, and please don't forget to
rate and review this podcast wherever you're listening. Symptomatic Medical
Mystery Podcast is a production of Ruby Studio from iHeartMedia.
Our show is hosted by me Lauren bred Pacheco. Executive
(31:45):
producers are Matt Ramano 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
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