0:04

I drove myself to the emergency room

0:07

in a sheer panic because

0:09

I was worried if I called the ambulance, you know,

0:11

they wouldn't get there in time. He

0:14

was having chest pains, he fell out of

0:16

breath, he was feeling shaky, and

0:18

that was the first time I really remember that he

0:20

couldn't do something that we used to love doing

0:22

together. So there

0:25

is no medication. Some people

0:27

can have pretty mild symptoms and

0:29

other folks can, you know, unfortunately

0:32

die. Frankly, that was

0:34

incredibly depressing. I'm

0:37

dying here. Let's figure something

0:39

else out, Let's try something else,

0:42

because I have no life here. How

0:48

terrifying would it be to fight an

0:51

unknown enemy, one you didn't

0:53

recognize and didn't see coming. What

0:56

if that enemy was coming from within

0:58

a disease but even doctors

1:01

couldn't identify. Nearly

1:03

half of all Americans suffer

1:05

from some chronic illness, and many

1:08

struggle for an accurate diagnosis.

1:12

These are their stories A

1:16

Lauren Brave Pacheco, and this is

1:19

symptomatic. Whether

1:32

he's kayaking, backpacking, hiking,

1:35

or just working out in the garden. Chris

1:37

Rose feels most at home while outdoors,

1:40

where he can breathe fresh air and take in the scenery

1:42

around him. He's also developed

1:45

a passion for capturing his adventures

1:47

with a camera. I dabble

1:49

in photography as a hobby, so

1:52

I've got a room full of cameras and

1:54

dark room chemicals and equipment, and

1:58

that's kind of my go to when

2:00

basically I'm not working. So who

2:03

are your favorite or what are your favorite

2:05

subjects to photograph? I would probably

2:07

say landscapes. You know, I'm a big fan

2:09

of ann'sle Adams and that kind of

2:11

photography. I love black

2:13

and white photography. So you're

2:16

also a big outdoors fan. Yes,

2:19

yes, I do spend a lot of time outdoors.

2:21

I also was a backpacker

2:24

for a while. I kind of got started in all

2:26

of that when I was younger.

2:28

I got sent off to an outward bound camp

2:30

for a couple of weeks and it's kind of been a

2:33

thing of mine ever since. How

2:35

would you describe Chris to somebody?

2:38

Chris is incredibly

2:40

intelligent. He knows

2:43

more about more different topics than

2:45

anyone I know, and he is always

2:48

willing to help people out. It can

2:50

be someone he's met once before, if they

2:52

need something, he will jump in and so he's

2:54

an extremely generous giving person. That

2:57

was Chris's wife, Kim Mentoric.

3:00

They've been married for almost fifteen years and share

3:02

a blended family of five children. Chris's

3:05

battle with a bizarre set of symptoms, it would

3:07

eventually go on to rob him of

3:09

his once active lifestyle, Kim

3:11

would remain his rock through it all.

3:14

So what is it about Kim

3:16

that attracted you to her? And

3:18

why do you guys make such a good team.

3:22

Well, obviously she's beautiful,

3:24

but she also,

3:27

I feel like, compliments me in that she

3:29

has some strengths that happen to be

3:31

weaknesses for me. Right, she

3:34

is definitely the most organized

3:36

person I've ever met in my life.

3:39

She's really good with speaking and presentations

3:42

and basically being able to take things

3:45

distill it down to the pure

3:47

essence. Right. She just really

3:49

has a gift for that kind of thing. This

3:53

is both Chris and Kim's second marriage.

3:56

Back in the mid two thousands, Chris

3:58

had gone through a very difficult divorce,

4:00

which brought a lot of anxiety and depression

4:02

with it. Again, he turned to

4:05

his love of nature as a way to escape,

4:07

both mentally and physically. But

4:09

little did he know there was no amount

4:11

of hiking or gardening that could

4:14

stop a mystery illness from changing

4:16

his life forever. How

4:20

long ago do you first remember

4:23

experiencing unexplainable

4:25

symptoms? Around two

4:27

thousand and seven, early

4:30

in the year I'd made the decision that

4:32

I was going to move back to North Carolina. This

4:35

was after I got divorced, and

4:38

I had this kind

4:40

of weird thing happen right before I move

4:42

where I had this sudden

4:45

bout of massive chest pain

4:48

and went to the emergency room at the

4:50

hospital I actually worked at. Oh

4:52

my gosh, well take me to that moment. What

4:55

were you doing, What did

4:57

it feel like? Did you drive yourself?

5:00

Yes? I did. I drove myself

5:02

to the emergency room in a

5:05

sheer panic because I was worried

5:07

if I called the ambulance, you know, they wouldn't

5:09

get there in time. I

5:11

had never felt anything like that before.

5:15

Just intense chest pain, you

5:17

know they talk about like the elephant on

5:20

your chest and just pain

5:22

radiating from everywhere. That's essentially

5:25

what it felt like. So you thought you were having a heart

5:27

attack? I did. I actually

5:30

thought I was dying that day. I really did,

5:32

and you know, had them bring my kids in everything

5:35

because I thought I was a goner, right, and

5:38

they run a bunch of blood tests, they do

5:41

the EKGs and stuff seemingly

5:44

out of nowhere. Chris was faced

5:46

with what felt like a life or death situation.

5:49

Anxiously awaiting his test results, Chris

5:51

was tormented by his thoughts and

5:54

terrified of what would happen next.

5:56

He relied on his doctors for a sense of solace.

6:00

They came back and they were like, well, your troponin tests

6:02

are negative. We don't think you're having a

6:04

heart attack. So basically

6:07

they just kept me there for a long time and watched

6:09

me, and then they sent me home, shrugging

6:12

their shoulders. Shrugging their shoulders.

6:14

They had no idea, but they

6:17

did say it seems like the way

6:19

you describe your pain, it may be coming from

6:21

your stomach area. And they're like, have you

6:23

been checked for acid reflux? And

6:26

I was like, no, not really,

6:29

but I do remember having a lot

6:31

of heartburn prior to this, So they're

6:33

like, here, try this broad spectrum

6:35

antibiotic for my digestive symptoms.

6:38

Provided some temporary relief. Chris

6:41

focused on his cross country move and

6:43

found ways to live with the bizarre pains

6:46

in his abdomen. If I

6:48

had pain, I was basically just kind of lay down, ignore

6:50

it takes some thumbs or whatever, and it'll

6:52

eventually it'll go away. You know. Ultimately

6:55

you fall asleep and you know, the next morning and

6:57

you're feeling our right again. So you're like, Okay,

6:59

well maybe this is just all in my head.

7:01

You know. Well, I mean,

7:04

look, you can laugh about it now, but that

7:06

must have been the antithesis

7:08

of funny at the time. Oh yeah,

7:11

yeah. I had some people making

7:14

some jokes about it, but I didn't think it was

7:16

particularly funny. You know, it scared

7:18

the Jesus out of me. Did

7:23

they think that there was some kind of an anxiety

7:26

or stress component, Yes,

7:28

they did. Indeed, I

7:30

had another couple of these episodes

7:33

not long after moving, where I wound up

7:35

in the emergency room and they did tell me, yeah,

7:38

you probably have some kind of anxiety

7:40

disorder. So they were like, yeah,

7:42

maybe we ought to look at you know, giving you some PRN

7:44

anxiety medication for this. So they

7:46

did. They gave me a prescription for whenever

7:49

I needed it, and you know, of

7:51

course I still kept having these episodes, and

7:53

I was like, all right, well, I guess it's anxiety,

7:56

you know. Chris

7:58

downplayed the multiple trips the emergency

8:00

room and how scary they really

8:03

were. He consistently felt

8:05

excruciating pain in his stomach and chest,

8:07

to the point where relief only came

8:10

from lying down in isolation. So

8:16

can you describe how the episodes morphed

8:18

at this point and what did they feel

8:21

like in your body and in your mind. I

8:24

would get the same thing. I'd be sitting there in the

8:26

evenings, you know, and getting

8:28

ready to go to bed, and I was all of a sudden

8:31

sharp pains and chest pains and stuff,

8:33

and I would be like, Okay, I must

8:35

be having an anxiety attack again, you

8:37

know. So I take

8:40

the tombs for the stomach. Then I would

8:42

take medication to treat the panic

8:44

attacks. Basically that always

8:46

knocked me out right, So at that point I'd

8:48

just fall asleep. I'd wake up the next morning and

8:50

be like, okay, you know. And

8:53

it was about this time I started

8:56

really getting the real GI

8:58

symptoms in the sense that I was having

9:01

to go to the bathroom during the day, constantly

9:04

having a real upset stomach, loose

9:06

stools, that kind of thing.

9:08

And I just chopped it up

9:11

to the anxiety. It's

9:14

been two years since that first trip

9:17

to the er. By this point, Chris

9:19

and Kim are newlyweds and start

9:21

to face this mysterious illness together.

9:24

But even with Kim's support, Chris

9:26

begins to struggle with day to day life.

9:30

So you had bowel

9:32

urgency, Oh yeah, yeah,

9:35

and that has such a

9:37

detrimental, debilitating

9:40

impact on your life and

9:42

your mind. I mean, how severe

9:44

was it And did you find yourself altering

9:47

your schedule to accommodate. Yes,

9:50

And it was one of those things as time

9:52

went on, obviously we moved

9:54

into the new house. It wasn't long

9:57

after we moved in I had some more of these emergency

9:59

room episodes, and then the

10:01

bowel park got a lot worse. It

10:05

was getting to the point where I

10:07

have to travel quite a bit for work, and

10:10

I have to get in the car sometimes and drive out

10:12

to these places and you know, rural

10:14

areas and visit with clients,

10:16

and not being able to get

10:18

to a bathroom in time became a

10:21

real ordeal,

10:23

you know. And I remember

10:26

very distinctly the time where I felt

10:28

like I was just at the end

10:30

of my rope. I was running down Interstate

10:32

forty going to a client down towards Wilmington,

10:35

you know, and there's a long stretch

10:37

there where there's just nothing, and

10:39

then all of a sudden, out of nowhere, I had

10:42

to go and I

10:44

literally had to peel tracks off

10:46

the side of the highway, jump a

10:48

fence, go hide under some trees,

10:51

you know, And I wound up

10:53

having to leave my underpants in the woods

10:55

there, and then I had to go hit a

10:57

clothing store and buy a

10:59

new path underwear and get cleaned up,

11:01

you know, so that I could go see my client. I

11:04

mean. And it's crazy to have to live like that,

11:06

right, It's it's terrifying,

11:09

you know, terrifying, it's

11:11

stressful, it's depressing. And

11:13

then there is this element of shame

11:16

because you don't want to admit

11:18

to people that you have this

11:20

weakness that we don't talk

11:22

about often, the

11:25

reality for some people that when they say they

11:27

need to go to the bathroom, it's almost too late.

11:30

Yes, and that impact

11:32

on your daily life must

11:34

have been so stressful,

11:37

so overwhelming, Yes,

11:40

it was. It was debilitating,

11:44

and at this point I wasn't

11:46

going places with my family out

11:48

of fear of either the pain attacks

11:51

coming back. I'm terrified

11:53

to go without carrying panic medicine

11:56

with me or being able to get out of

11:58

a situation. And then I'm

12:00

also terrified I'm not going to be able to get to a bathroom

12:02

in time, right, So you know, I would

12:05

avoid going to concerts. I would avoid going

12:07

to the amusement park with the family

12:10

or going on long trips. I mean

12:12

I basically kind of became a hermit at home.

12:14

So it's

12:19

one of those things where it's hard to have a conversation

12:21

about that. You don't want to tell your friends,

12:23

like I can't come out to dinner with you because I

12:25

don't know if the bathroom is available. Like

12:28

it creates both a physical distance because

12:30

you can't do things you want, and it also creates

12:33

that psychological difference because you're not comfortable

12:35

talking about what's going on

12:37

with your friends because it's embarrassing.

12:40

And so I think we saw a lot of withdraw both

12:42

him and us as a couple. We just couldn't

12:44

do as much as we wanted to do together. I

12:48

kind of remember my mind that sometimes going

12:50

to some dark places, you know, where I was. There

12:53

was one point in time where I really did in my

12:55

head just thank God. I wish I would just die

12:57

and this would just be over right,

13:00

you know, because at the time, I just I

13:02

didn't feel like I really had a life. Chris's

13:06

symptoms kept getting worse. He

13:08

returned to the er, where doctors came up with

13:11

a new theory about what was causing his

13:13

condition. There was

13:15

a doctor there and he's like, you know, I have a hunch,

13:18

let me check something. And he wheels this ultrasound

13:20

machine into the room.

13:23

Right, they start ultrasounding my belly,

13:26

you know, and he's like, aha, I

13:28

think you have a gallbladder problem. You

13:30

have gallstones. And

13:32

I was like, huh, okay.

13:34

I didn't realize that. So

13:37

for a while there, I'd kind of had hope because

13:39

I thought, oh wow, maybe we really have found

13:41

this problem. Now, you know, I'm

13:43

at the point now I'll do anything to fix

13:45

this. I basically decided, okay, let's

13:48

take the gallbladder out. And they

13:50

did say I had gallstones and it was

13:53

diseased. But fast

13:55

forward after the removal and

13:58

after a time of trying to get things healed

14:00

up in everything, I'm right back

14:02

to having the same problems again. Oh

14:05

gosh, Chris, you must have I mean, at

14:07

that point, you've undergone major

14:09

surgery and you're in the same boat. Yes,

14:13

I had high hopes that it

14:15

was going to result in a significant change,

14:18

and it was really disheartening

14:20

six months after the surgery when very

14:23

little was improved in terms of his

14:25

health, and so I think to me, it

14:28

kind of felt like we had a great hope there

14:30

that this was the answer, and then it just turned

14:32

out not to have been it. Though

14:36

Chris had to bear the physical symptoms alone,

14:39

the emotional toll of the insidious

14:41

symptoms was shared with Kim and

14:44

their family. I was

14:46

frustrated because it felt like every

14:49

medical professional that he went to

14:52

defaulted to the same change

14:54

your diet, loose some weight answer. And

14:57

it became a running joke with us, right because

15:00

he kept saying, I know that's not it. There's

15:02

something that's really going on, but

15:05

he just wasn't getting any answers, and that was

15:07

frustrating for me. I think at one point I

15:09

even said, let me come to your doctor's appointment

15:12

and I'll be the crazy, nagging wife

15:14

and I'll annoy them, because we

15:16

just felt like he wasn't being heard. There

15:19

was a lot of time where I was freaking

15:22

out, thinking I was dying and absolutely

15:25

losing my mind, and she's kind of the calm

15:27

person, you know, standing at the back side

15:29

of the room, going, you know, I think you're okay. I

15:31

know you feel like you're dying, You're probably

15:34

okay. The biggest thing

15:36

that I tried to do was just to validate

15:38

his experience. I'm not sure

15:40

how helpful that was when he was really

15:43

suffering and miserable and sick, but sometimes

15:45

I would just say, like, I do believe you.

15:47

You need to know that somebody believes you. Running

15:51

out of options, the doctors

15:53

were willing to try anything to get

15:55

Chris answers. They

15:57

were like, okay, well, let's set you

15:59

up for an endoscopy. Went

16:02

back into the hospital and they're like, oh, it

16:04

looks like you have bile reflux. That's

16:07

why you're having all these problems.

16:09

Again, they put me on some medication

16:12

for that, and I

16:15

still wasn't getting any relief. Feeling

16:17

increasingly hopeless, Chris worried

16:20

his ongoing health issues would eventually

16:22

drive even Kim away. Frankly,

16:25

sometimes I thought maybe she would leave me, because

16:28

I mean, what I was turning into was

16:31

kind of this super depressed, paranoid

16:34

person that was starting to lose touch with reality

16:37

a little bit. I was kind of hopeless

16:39

at that point, So Chris,

16:41

that must have been so overwhelming.

16:44

It was very overwhelming. It was very

16:47

overwhelming. It

16:49

had now been ten years of agony and

16:51

uncertainty for Chris. He'd experienced

16:54

the trauma of being rushed to the er

16:56

with excruciating chest pain, thinking

16:58

his life would be cut short by a heart

17:00

attack. He had seen countless

17:02

doctors and specialists since then, but none

17:05

of them could diagnose or treat his mysterious

17:07

illness. Chris would soon

17:09

become so desperate that he takes

17:11

matters into his own hands. I

17:14

was just so frustrated with the whole situation.

17:16

I'm like, I'm dying here. Let's

17:18

figure something else out, Let's

17:20

try something else, because I have no

17:23

life here. We'll

17:27

be right back with Symptomatic, a

17:29

Medical Mystery Podcast. Now

17:36

back to Symptomatic, a Medical

17:38

Mystery Podcast. Chris

17:44

Rose had been battling an unknown illness

17:47

for over a decade. It all began with

17:49

severe chest and stomach pain that

17:51

felt more like a heart attack, and he

17:53

was terrified that his days were numbered. However,

17:56

as the gastrointestinal symptoms progressed.

17:59

Over several years, they began

18:01

to take over his life. He was mostly

18:03

confined to his home, unable to enjoy

18:06

the people and activities he loved. With

18:08

no semblance of hope on the horizon, Chris

18:11

plunged into a deep depression. Kim,

18:20

was there a time that really felt

18:22

like rock bottom? Where you

18:25

were just worried or terrified

18:27

and what were your deepest fears?

18:31

My biggest fear was that we would

18:33

just spend the next ten years finding

18:36

out that it wasn't anything. That

18:38

winter, he went through some really deep

18:40

depression. Sometimes he would

18:43

sit in the living room with all the lights

18:45

off and just stare. I

18:50

remember him saying, like, my life

18:52

is over as far as being able to do

18:54

what I want to do. Chris loves

18:56

taking pictures. He's a big photographer,

18:58

and he wanted to go out in the woods and

19:00

take nature pictures. And he couldn't

19:02

get twenty or thirty feet from the car

19:05

because he would be afraid that he was going to get sick and

19:07

he wouldn't know what to do. And frankly,

19:10

that was incredibly depressing, and

19:12

I remember thinking we got to do something

19:14

different. I'm dying

19:16

here. Let's figure something else out,

19:19

Let's try something else. It

19:23

was just after that dire winter

19:25

when Chris would pursue a new doctor

19:27

to look at his diagnostic journey. Doctor

19:30

Sarah McGill, a gastro entrology

19:33

expert, started hunting for an explanation,

19:35

bringing fresh eyes and a new

19:38

perspective to Chris's struggle. I

19:42

had some ideas, but I remember

19:44

him giving this story that

19:47

is so typical, honestly, among

19:49

people with irritable Bell syndrome,

19:51

Like they're having a lot of abdominal pain,

19:54

they're having a lot of diarrhea,

19:57

having to rush to the bathroom, having

19:59

to think about where the

20:01

bathroom is going to be now,

20:03

Irritable Bell syndrome, it's

20:05

a diagnosis based on symptoms. It's not

20:08

a diagnosis based on what's

20:10

happening in your body. That can be a whole

20:12

variety of different things. When

20:15

you met her, what were your first

20:17

impressions? She had a

20:19

very good bedside manner. She was

20:22

very empathetic and incredibly

20:24

intelligent. I thought,

20:27

hmm, okay, I think this is someone I can work

20:29

with. Right. She just felt like a person

20:31

I could trust. What was her reaction

20:34

to hearing your symptoms.

20:37

I think initially kind of thought it might

20:39

just be IBS, which is

20:42

something that runs in my family. And

20:45

I really didn't want to hear that because

20:47

I was like, oh, geez, I know, there's nothing

20:50

they can do about that. It just

20:52

means you're going to be this way forever. So

20:54

the first thing I believe you ordered

20:57

was a colonoscopy with him, right.

20:59

The two illnesses that I

21:01

was thinking about that you can find with a colonoscopy,

21:05

one is Crohn's disease or

21:07

ulterrative colitis, and then

21:09

there's a disease called microscopic

21:12

colitis, which causes a lot of diarrhea,

21:14

but usually it won't cause abdominal

21:16

pain. But that also we can diagnose

21:19

with the colonoscopy.

21:23

I mean, everything came back fine, you

21:25

know, and I didn't have any of the other symptoms.

21:28

And then they also did test for

21:30

like Celiac's disease and food

21:33

allergies and stuff, but nothing

21:35

ever came back. Remaining

21:37

hopeful and realistic about the continued

21:39

search for answers, Chris was able

21:42

to reclaim his love for the outdoors of nature.

21:44

One day, after a walk, he noticed

21:47

a tick bite on his leg had developed

21:49

a bullseye rash. He

21:51

was prescribed doxy cyclin, an antibiotic

21:54

for possible infection. To his surprise,

21:57

it actually seemed to help his stomach

21:59

issues. The

22:01

temporary relief provided by the tick

22:04

bite medication immediately

22:06

raised a flag for doctor McGill. She

22:08

suspected something that other doctors had failed

22:10

to consider, that his love

22:13

of the outdoors may have put

22:15

him directly into harm's way.

22:18

And then, just on a whim, she was kind of like,

22:20

you know, it's probably a long shot. Let

22:22

me, I want to test you for something.

22:26

And I was like, okay, what I

22:29

had diagnosed some other people

22:32

with just gi problems with

22:34

tick bites. Yeah, and she's like,

22:36

I'm going to test you for this red

22:39

meat allergy, this alphic al syndrome.

22:42

It's a very inexpensive

22:44

blood test. Oh, that weird

22:46

thing. I was like, yeah, that's whatever. I

22:49

thought. We didn't really have anything to lose

22:51

by checking for it. They took

22:53

my blood and god, I want to say, it was like

22:55

a day later or whatever she calls

22:57

it, She's like, you're positive. I was like, what

23:02

shock of your life kind of thing. People

23:05

have these flashbulb moments where you remember

23:08

exactly where you were sitting and what you were wearing and

23:10

what you were doing. And I was with my daughter.

23:12

She was at a college sporting

23:15

tournament, and I was sitting on the bleachers

23:17

watching her. And he called me and

23:19

told me about the diagnosis. And I said,

23:22

you're kidding. That's impossible,

23:25

that doesn't even make sense. I've never even

23:27

heard of this thing. That's fake. You're

23:29

just making this up. I think I

23:31

even actually like stood up and cursed,

23:34

right, I was like, are you kidding me? Alpha

23:37

gal syndrome a food allergy

23:39

to the alpha gal sugar molecule

23:42

found in most mammals. Chris

23:44

finally had a name for what had been tormenting

23:46

him after a decade of distressing

23:49

symptoms. Explain

23:52

to me in a nutshell, alpha

23:54

gal syndrome. Because most people haven't

23:57

heard of it. Right, there's just the CBC

23:59

report couple weeks ago that foreign

24:01

ten doctors have never heard of alpha gl

24:03

syndrome. So alpha

24:06

gal syndrome causes

24:08

a delayed reaction to

24:12

eating mammalian meat

24:14

or products from mammals,

24:17

so that can be mammal

24:19

meat, pork, beef, butter,

24:22

dairy milk, and

24:24

it is caused by a tick

24:26

bite, often from the Lone Star tick.

24:29

Yes, it's caused by a tick bite.

24:32

The symptoms of alpha GL syndrome

24:34

can be GI, which is what we're talking

24:36

about now, vomiting, diarrhea,

24:39

abdominal pain. They

24:41

can be skin so rashes

24:43

that come and go, that can be itchy, or

24:46

it can be severe. People can get

24:48

low blood pressure, anaphylaxis,

24:51

and even problems breathing, but that's

24:53

pretty rare. With

24:55

this new diagnosis, Chris was now

24:57

faced with the challenge of managing his condition

25:00

and making adjustments to his lifestyle

25:03

in order to avoid the debilitating

25:05

GI issues. It's

25:08

slowly dawning on me that this is

25:10

going to have to be a very huge life

25:12

change. And I

25:14

was scared too, you know, because I

25:17

kind of worshiped at the altar of the cow for

25:20

most of my life. So this

25:22

is going to be hard. This is going to be really,

25:25

really hard. What

25:27

is the treatment? What is

25:29

the golden standard of treating alpha

25:32

gal as of right now, the

25:34

management of alpha GL syndrome

25:36

is to remove the alpha gal from

25:39

your diet and your life, So definitely

25:42

removing any meat

25:45

from an animal that has hair, pork

25:48

and beef, and then many

25:50

folks also go on to remove

25:53

dairy and butter as

25:56

well. It's interesting. I wonder

25:58

if one day someone will invent some kind of the

26:00

gal blocker, kind of like lachiose,

26:02

that he could take lactape. Yeah, totally. So

26:05

there is no medication for alpha gel

26:07

syndrome, but certainly

26:10

in the future there might be. With

26:15

Kim's help and encouragement, Chris made

26:18

drastic changes to his diet. He

26:20

gave up his beloved stake and burgers and

26:22

became mindful of hidden animal byproducts

26:25

and the food he bought so he could avoid these

26:27

triggers. It was a lot to manage

26:29

at times, but was well worth

26:32

the ability to regain control of

26:34

his life. I think, honestly,

26:36

for about the first two or three months, I just

26:38

didn't even believe it. It seems

26:40

so unrealistic, and we had been given so

26:42

many this is what it is that

26:45

it turned out not to be that. I truly

26:47

didn't believe it. And we were three

26:49

months or so into the diagnosis,

26:51

and all of a sudden, he's going out and we're

26:53

doing stuff, and we're going to concerts

26:55

together, and you know, we're going

26:57

out to the movies, and I'm like that really it,

27:00

This is all real. So it took a

27:02

while to sink in for me because I just had

27:04

had so many false starts and

27:07

dead end roads. What

27:09

does that meant? And how is life different today?

27:12

It is phenomenal. He's more present

27:14

in his life, he's happier, he

27:16

feels good, and he feels a

27:18

sense of control over his health,

27:21

which is something that cannot

27:23

be understated in terms of how important

27:25

it is. Chris finally felt

27:27

the relief that he'd been longing for. He

27:30

was free from the scary symptoms and the stressful

27:32

lifestyle that his condition imposed

27:34

on him. He also joined

27:36

an online support group for people with alpha

27:39

gel syndrome. Just having

27:41

the other people who've been

27:43

through this right who

27:45

know where you're coming from, who

27:47

don't think you're crazy, who

27:49

don't think you you know, you're making it all upwards,

27:52

all in your head, and understanding

27:55

all the stress and the depression.

27:58

And I also found that it expanded

28:00

my own empathy too, you know, because there

28:03

were several people where their spouses were not very

28:05

supportive, you know, because we're talking radical

28:07

diet and lifestyle changes, and

28:10

you know, seeing all these people go through that, I felt like I could

28:12

provide support to these people as

28:14

well as get support from them, and the

28:17

community really has been the

28:20

better aspects of having had this

28:22

thing. I think

28:24

we need a paradigm shift

28:26

and we need to consider

28:29

waiting for someone to know

28:32

exactly that what

28:34

they ate made them ill is

28:36

just wrong in alpha gal syndrome, so

28:39

we need to be testing people.

28:42

I think the biggest thing to take away is

28:45

you know your body, and you know your health better

28:47

than anyone else. You've been with it longer

28:50

than anybody else, and so when you know

28:52

something isn't right with it, keep

28:54

talking to people until you find someone who's

28:56

willing to listen to you. Firstly,

28:59

I hope any one who has similar

29:02

symptoms to the kinds of things I had

29:04

going on get yourself tested

29:06

and you know, really be an

29:09

advocate for yourself. If

29:11

you don't fit into the

29:13

diagnostic flow chart, you kind of fall

29:15

by the wayside, and sometimes the only way

29:18

you can get people's attention is to be a very

29:20

strong advocate for yourself. The

29:23

other thing I hope is when

29:25

it comes to this allergy, I'd like to see this allergy

29:27

recognized more

29:29

like all of the other allergies are, you know, like peanut

29:32

allergies and things like that, because for some people

29:34

this allergy really is life

29:36

threatening. I just have the GI

29:38

variant, but I know people who literally,

29:41

when exposed to just air from

29:43

cooking hamburger, have to

29:45

take the EpiPen and wind up in the emergency

29:47

room because they can't breathe. That's

29:50

what I really want to see from all this is

29:52

just awareness. And if anyone

29:54

gets diagnosed just because they heard me

29:56

talking about it, I mean, that's great. I'll

29:59

feel like I accomplished something.

30:02

To find out more on alphagal syndrome, you can

30:04

check out the CDC's website at ww

30:07

dot CDC dot gov or

30:09

go to alpha galinformation dot

30:12

org. My name is Christopher

30:14

Rose. I went through a little

30:16

over a decade of extreme health

30:18

challenges because I had alpha gal

30:21

syndrome without even knowing it. On

30:24

the next episode of Symptomatic, Alicia

30:26

was diagnosed with plaquoriasis at

30:29

just seven years old. Her flare

30:31

ups got to the point where they covered almost

30:33

ninety percent of her body. Sometimes

30:36

I felt like nobody else would

30:38

love me. Sometimes I felt

30:41

like a burden. I

30:43

felt like I was cursed. I

30:45

would ask what did I do

30:48

to deserve this. I just

30:51

gave up on finding treatment

30:54

because I say, you know what, I'm just gonna be like

30:56

this for the rest of my life, so

30:59

I just got to get used to it. She

31:01

continues changing doctors and treatments,

31:03

all in search of some relief, without any success.

31:07

She'd already given up and come to terms

31:09

with a life full of unspoken shame and embarrassment

31:12

when she met a dynamic doctor

31:14

who changes her entire life.

31:18

That's it for this episode of Symptomatic.

31:20

Thank you for listening. What did you think

31:22

of this episode? We would love to hear from

31:24

you. Send us your thoughts or share a medical

31:26

mystery of your own at Symptomatic at

31:28

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don't forget to rate and review this podcast

31:33

wherever you're listening. Symptomatic

31:36

Medical Mystery Podcast is a production

31:38

of Ruby Studio from iHeartMedia.

31:41

Our show is hosted by me Lauren bred

31:43

Pacheco. Executive producers

31:45

are Matt Ramano and myself. Our

31:48

EP of post production is James

31:50

Foster. Our producers are Sierra

31:52

Kaiser and John Irwin. And this episode

31:55

was researched by Diana Davis