December 16, 2025 • 38 mins
Michelle Shapiro had built a career helping others get healthy when she was hit with a debilitating health crisis. Doctors were unable to identify the cause of her symptoms - no matter how hard Michelle pushed for answers. So unwell that she could barely function - Michelle made it her mission to get to the bottom of what was going on only to find that the condition she was experiencing is still being understood by the medical community.
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****** SPOILER ALERT BELOW ******
You can follow Michelle on social media @michelleshapirord and on her website michelleshapirord.com. You can take the Highly Sensitive Body quiz here: https://michelleshapirord.com/hsb-quiz
Dr. Tania Dempsey can be found on instagram @drtaniadempseymd and online at drtaniadempsey.com. Her podcast is called Mast Cell Matters.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Rube.
Speaker 2 (00:07):
I'm not okay. I don't know what's going on. I've
never had this happen before, and I don't know where
to go and what to do.
Speaker 3 (00:14):
I said, Michelle's having a serious problem. You have to
get over there. You need to go now.
Speaker 4 (00:20):
This is an invisible illness.
Speaker 5 (00:21):
And that's what I think makes it so difficult, because
they come in and they have all these complaints, but
they look fine.
Speaker 2 (00:28):
I was standing in the mirror and I just remember
looking at myself and I said out loud, there's no
way you're going to make it through this.
Speaker 1 (00:35):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis.
Speaker 4 (00:55):
These are their stories.
Speaker 1 (00:57):
I'm Lauren Bray Pacheco and this is symptomatic.
Speaker 2 (01:09):
I am Michelle Shapiro, and I'm an integrative and functional
registered dietitian.
Speaker 1 (01:15):
Michelle is the kind of person who never meets a stranger.
She speaks with enthusiasm, confidence, and is undeniably a New Yorker.
So you grew up at Queen's. Tell me a little
bit about your childhood and life growing up.
Speaker 2 (01:31):
I grew up in one of the most diverse neighborhoods
in the entire world. I think my high school was
the most diverse high school in the entire world at
one point. And because of that, I had such a
rich experience in life in just about every way. Socially,
I had a really beautiful life. But I had, in
my opinion, like this very ideal childhood where all of
(01:52):
my best friends were the children of my parents' best
friends and my sister's best friends. I really grew up
in community that was deeply inclusive and also just rich
in diversity in every way possible.
Speaker 1 (02:06):
You mentioned your sister, Jennifer, and I know you too
are incredibly close. Tell me a little bit about your
relationship and why, in addition to being sisters, you're also
best friends.
Speaker 2 (02:18):
I can't even think about her without crying. She is
the tougher, grittier, cooler version of me, and she is
my true blue soulmate, my sister.
Speaker 3 (02:29):
I am Jennifer Shapiro, and I am Michelle's big sister.
Speaker 1 (02:35):
Jennifer is almost three years older than Michelle, but the
pair have always been inseparable. Tell me a little bit
about your camaraderie from the get go. What were you
two like growing up?
Speaker 3 (02:47):
I think that a lot of people think, because we're
two girls and we are so close in age, that
there would be a lot of like competition between us.
But we never really in our entire life that we
never really had a lot of the disagreements that other
sisters frequently had, to the point where we grew up
(03:10):
in a house that had extra bedrooms and we shared
a room until I left for college, just because we
wanted to.
Speaker 1 (03:17):
I love that for somebody who hasn't had the pleasure
of meeting your little sister, how would you describe Michelle magic?
Speaker 3 (03:26):
It's all the Michelle magic. Everybody wants a piece of Michelle.
Everyone wants to have her attention and feel her kindness
and her empathy all the time. Like we can be
in a public place and all of a sudden, the
(03:48):
waitress will just be telling her about something that happened
when she was three. Everyone wants to bear their soul
to Michelle.
Speaker 1 (03:55):
This natural gift, a warmth that invites has always been
Michelle's for power and strength. Growing up, Michelle never had
any trouble forming friendships based on authentic connection. It hadn't
even occurred to her that surface level judgments may stand
in the way of her being accepted.
Speaker 2 (04:13):
One thing that was kind of different about me growing
up was that I always occupied a larger body.
Speaker 3 (04:18):
Michelle and I frankly were both overweight a lot of
our childhood and adolescens, Michelle particularly, but I definitely was
the largest out of my friends.
Speaker 2 (04:28):
It really wasn't much of a problem in Queen's versus
other places. I think people are judged on a different curve.
I think genetics played a role. And then also we
came from a household where love our mother more than anything,
but she didn't cook, and just in that I had
leaned on highly processed foods, we had, you know, trauma
like everyone else did growing up. That led to ME
using food as an emotional tool.
Speaker 1 (04:50):
When it was time for Michelle to go a way
to college, she began to fear that she would be
quickly evaluated by her peers based merely on what they
saw that.
Speaker 2 (04:59):
Was going to the universe. Dave Delaware and I realized, hmm,
They're not going to instantly know me for who I am.
This is a much more homogeneous place where people are
going to really judge you based on first appearances. And
I realized going into college, I need to lose weight,
and I need to lose weight quick if I'm going
to be able to do the things I want to
do and socialize in the ways I want to do.
(05:21):
I lost close to one hundred pounds in the year
leading into college. How did you do that? Just really
severe calory restriction. And I also went on a radical
vegan diet. I think my vegan diet was also a
little bit of disordered eating in disguise. I would say.
Speaker 3 (05:39):
I think that it was hard because she knew deep
down that what she was doing to her body by
not eating was not healthy, but she was getting so
much like external praise because she was someone that had
always been, you know, like the big girl in the group.
I think it was hard for her to like wreck
(06:00):
and sile.
Speaker 1 (06:01):
Those she was gaining the kind of social capital that
often comes with weight loss in our society. Michelle went
off to college and started to experience health issues.
Speaker 2 (06:11):
I thought, again, like anyone else, that when you lose
weight all of your health problems go away and everything's perfect,
And I had the exact opposite experience what happened. I
would describe my time in college as being incredibly sick.
I went from being this hypersocial person with a massive
social network and support system to someone who had debilitating
(06:35):
panic attacks and could barely leave my dorm room. I
was very dizzy a lot of college too, and I
had acid reflux and severe gut issues.
Speaker 4 (06:45):
Psychologically, that must have been grueling.
Speaker 2 (06:48):
Yeah, I really disliked panic attacks of all symptoms, and
anyone who's experienced chronic panic attacks will tell you I'll
take most things over a chronic panic attack.
Speaker 1 (06:58):
Can you explain that to somebody who hasn't had a
panic attack?
Speaker 2 (07:04):
It feels like you're going to die, I guess is
the most specific way I can explain it. And it
feels like every single cell in your body is instructing
your brain that you're going to die and there's absolutely
no way out of it. That's what it feels like
in the moment, is that there is. It's like you
wouldn't be able to run, you wouldn't be able to
use any of those emergency mechanisms because your entire body
(07:26):
is just trying to tell you that you're going to die.
It feels like the most extreme version of any symptom,
your heart pounding, sweating, terror, terror at the highest level.
As a person who's always felt like I can get
through anything, this was one of the first times in
my life where I was like, I don't know if
I'm going to make it through this.
Speaker 1 (07:48):
Did you seek medical treatment at the time, and what
were you told by doctors?
Speaker 2 (07:54):
I absolutely sawt medical treatment for the panic attacks. I
went to any doctor, the health center and a doctor
I could off campus, and their answers were, you have anxiety,
you have a permanent panic disorder, you can take medication
for life.
Speaker 3 (08:09):
I was away at college, but I remember there was
like things with her needing to constantly go on like
drives with my dad to calm herself down, knowing exactly
how long it would take her to get home, like
she always wanted to be sure that if she did
have like a panic attack, that she would be able
to like get home and get back to like a
(08:30):
safe place and regulate her nervous system.
Speaker 1 (08:33):
Though she was experiencing debilitating anxiety, Michelle made it through
school and inspired by her own weight loss journey, decided
to pursue a career as a dietitian.
Speaker 2 (08:43):
And to be honest with you, Lauren, and I went
in to school to be a dietitian, to learn like
the secrets of weight loss, even though I had already
lost the weight. A lot of dietitians actually suffer from
disordered eating and eating disorders disproportionately to other practitioners. In
the beginning, that was the transparent goal. It wasn't until
I graduated that I really understood what my mission and
my purpose was.
Speaker 1 (09:04):
After graduating, Michelle gets a job working in nursing homes.
The drive to work is a long commute, and suddenly
she begins to notice new terrifying symptoms.
Speaker 2 (09:15):
I remember walking through the hallways and holding on to
the walls because the dizziness was so extreme for me.
It's unsteadiness, but also a lot of visual disturbance. It's
just like a whoa, whoa who kind of feeling.
Speaker 1 (09:30):
Here's her sister, Jennifer's recollection of that time.
Speaker 3 (09:33):
She was driving to the Bronx from the border of
Queens and Long Island, so you know, it was forty
five minutes to an hour and I would remember she
would come out of the car and look like totally
depleted as a person, like dizzy, tired, like stumbling, and
she kept saying like, I'm having so much trouble driving,
I'm getting so tired. And at first it was like
confusing as we were like why, like you've driven back
(09:55):
and forth to Delaware, Like it just started kind of
slowly happening, and then she kept having like very severe
dizziness bells. I remember there was like a time that
there was a candle holder on the wall at my
mom's house and she just like walked right into it,
and I was like, what are you doing? Because she
couldn't even like see straight really like she was so
dizzy and out of it, and she really hit her
(10:17):
head hard.
Speaker 2 (10:19):
During those times when I was dizzy, I would also
get this like singy feeling. There's a tremor that kind
of happens. It feels like ants crawling onto your skin
a bit, and you have to understand, I'm at work,
I'm dizzy, I have no idea where it's coming from,
and I have no tools to fix it.
Speaker 1 (10:39):
After a few years at the nursing home job, Michelle
takes a job as an in house dietician for a
company in Manhattan with dreams of opening up her own
private practice. Michelle is working overtime to meet with clients
after hours, and the dizziness, now coupled with brain fog
and fatigue, will not stop.
Speaker 2 (10:59):
I worked from seven to three, and I saw private
practice clients from four to ten every day, so I
was working from seven am to ten pm. I had
started to dip my toe into the functional medicine world
a little bit, and I was like, Oh, this must
be a dreamal fatigue, This must be HPA access dysregulation,
this must be burnout. So I was trying to fix,
(11:20):
like put those root cause pieces together. You can chalk
anything up to burnout, right, So I was like, Okay, listen,
you're working like one hundred hours a week, so this
is why this is what's happening. But I tolerated feeling
awful so fascinating because your symptoms just took a backseat
to your career.
Speaker 1 (11:40):
And so while your symptoms are escalating, so are your
responsibilities and your workload.
Speaker 4 (11:48):
There had to have been like a.
Speaker 1 (11:49):
Crash in twenty eighteen and twenty nineteen. Michelle's symptoms continue
to escalate. She begins to experience headaches that will not
go away, gas, trou intestinal issues, and persistent insomnia. After
discovering she's been exposed to toxic mold in her apartment,
she begins mold detoxes through functional medicine doctors. But somehow
(12:13):
this treatment that was meant to help her feel better
seems to be making her symptoms exponentially worse. And then
in twenty twenty one, Michelle gets COVID.
Speaker 2 (12:23):
That was a whole different ballgame again. I mean, I
was unbelievably sick. There was new pain symptoms in all
of my joints. I feel like my joints are moving
in a way that they're not supposed to. There was
something with my neck, There was something with my back.
I would throw my back out all the time, even
though I was like an active person. My knees would
constantly be hurting. And there's a distinct feeling of dizziness
(12:44):
what I would call instability that I started to recognize
as being related to my neck. So I'd prop up
like ten pillows behind me, propped up on pillow mountain
in bed with an f brace on because I couldn't
lie fully back.
Speaker 1 (12:57):
An ever growing list of symptoms seemingly disconnected, and unfortunately
it was all about to get much, much worse.
Speaker 2 (13:07):
The crash, the real big crash, came in twenty twenty two.
I did end up moving from Manhattan to New Jersey.
I'm about five minutes outside of Manhattan, but still counts
because I needed to have a car again. Once I
started driving again, those old school dizzyness symptoms started coming
(13:27):
up again. So I ended up going to a chiropractor
who was about a block away from my apartment. They
were feeling my neck and they said, you know, in
my twenty years of experience, you have the tightest neck
I've ever felt. They were digging into my neck to
try to loosen everything. I got down the stairs after
the chiropractor's appointment, and I noticed my heart was pounding
(13:48):
like through my ears, and I remember the thoughts pounding
inside of my head going, you can't walk. If you
walk one more step, you're gonna die. If you've moved back,
you're gonna die. I get down, Get down, Get down,
get down, like almost like I was inn a war movie.
So I got down on all fours outside of the
chiropractor and I told my sister.
Speaker 3 (14:08):
She was like, I can't walk, I can't move. Every
time she would stand up, her blood pressure was dropping
lower and lower and lower.
Speaker 2 (14:17):
I'm not okay. I have to tell you right now.
I'm seriously not okay. My body is not okay. I
just left disappointment. I don't know what's going on.
Speaker 3 (14:26):
I'm scared. I can't be alone.
Speaker 2 (14:28):
I've never had this happen before, and I don't know
where to go and what to do.
Speaker 1 (14:33):
We'll be right back with Symptomatic, a Medical Mystery Podcast.
Now back to Symptomatic, a medical mystery podcast. Michelle Shapiro
has spent years dealing with seemingly unprompted bouts of dizziness,
extreme anxiety to the point of panic attacks, gas, true
(14:55):
intestinal issues, insomnia, headaches, and joint pain. An appointment with
a chiropractor, Michelle is left unable to walk, literally crawling
to the closest urgent care five city blocks away.
Speaker 2 (15:10):
My heart was pounding like through my ears, but I
got down on all fours outside of the chiropractorics. I
was trying to get breath in. I was laying on
the floor, so I called my sister and I said,
I have to make it to the yar because I
couldn't even make it back upstairs. And I said, and
I'm just gonna call on the cement to go to
the first med, which was like five blocks away.
Speaker 3 (15:31):
I was like, you have to do what you have
to do. I will stay on the phone with you.
We'll have our dad come to get you after this.
But you are going to have to drop down and
we're going to take it breath by breath, and you
are going to get there.
Speaker 2 (15:43):
And I would stop every like five steps, and I
was like, I can't do this. I can't do this.
And she's like, you have a few more steps. You
have a few more steps.
Speaker 1 (15:49):
Are you frantically kind of texting your father as you're
coaching her?
Speaker 3 (15:54):
I think I called him and I was just like, Daddy,
you have to go to Michelle right now. Michelle's having
a serious problem. You have to get over there. She's
going to be at the first med. I'll text you
the address, but you need to go now.
Speaker 2 (16:04):
When you're in that state, you don't know if walking
or stopping or sitting is going to make it better,
because when you're sitting, you also feel the heart pounding
and dizziness so much, and you're so aware of the symptoms,
so you just feel like, I literally do not know
which way to go. It's psychologically and the physical terror experience.
Speaker 1 (16:22):
You must have been terrified.
Speaker 2 (16:25):
I have to tell you, Lauren, that was not a
good day for me. Yes, I was completely completely terrified,
and so I made it to the city MD on.
I walked in on the floor and I pulled myself
up and I said, I'm having some sort of a
heart episode. They did every positional change they could to
try to lower my heart rate. Eventually they said, this
(16:46):
looks like some high heart rate, high blood pressure episode,
but if your baseline is not bad, I would get
evaluated for your heart Essentially, I'm going to write you
a per panel all prescription. I would recommend you take it.
So they had me take it for my blood pressure
and my heart rate to come down and then set
me home. Essentially, they were as helpful as they could be,
(17:07):
but they were like, we don't really know. Maybe you
should investigate pods pots being pushural or the thestatic techy
cardia syndrome. Where do you go from there?
Speaker 1 (17:16):
I mean, having had an episode where you have to
crawl five city blocks.
Speaker 2 (17:23):
Yeah, it was. It's I have to laugh, but it
was really quite bad, Lauren. It was really quite bad.
Speaker 1 (17:29):
After leaving Urgent Care on that terrifying day, Michelle's symptoms
only get worse, as if a switch flicked on that
cannot be turned off.
Speaker 2 (17:40):
I would have violent tremors and insomnia all night. If
I had to go to the bathroom, I had to
literally lift myself up with my arms onto my computer
chair and wheel myself put myself on the floor crawl
because if I put my feet on the ground, my
heart rate fluctuations were so severe that I would then
be an episode for days. So I was like, it's
(18:01):
just not worth it. While I was figuring that out,
I also had that adrenaline response, that insomnia response, that
diarrhea response. I never really felt hopelessness until that moment.
Speaker 3 (18:14):
She was like strapping on a neck brace and seeing
forty clients a week. In some ways, her life was
so severely impacted, but in others she's such a strong
and like resilient person that she was just fighting her
way through. Like I remember once I took her for
a colonoscopy. You know, they didn't really find much, and
(18:34):
I remember her talking to the GI doctor after and
being like, I'm telling you there is something wrong, and
it's like, do you think your son or anybody else
would want to feel so dizzy that they are crawling
in the street. You wouldn't wish it on your worst enemy.
So it's so disheartening when people didn't believe Michelle or
understand the severity of it.
Speaker 1 (18:53):
Throughout this time, Michelle has gotten engaged, beautiful milestones in
her life taking place alongside he's incredibly debilitating set of symptoms.
In the spring of twenty twenty two, Michelle has a
bachelorette party and it does not go to plan.
Speaker 2 (19:10):
The night before the bachelorette party, my best friend came
from out of town. We were doing karaoke. I remember
doing one or two songs and I couldn't stand anymore.
So basically everyone else I was like, just enjoy yourself.
I found a couch in the airbnb and I was
just laying on it and people would come sit on
the floor and talk to me while I'm laying and
they started to see how serious the situation was. I
(19:32):
literally did not sleep one minute during that night. I
was just wide awake, and I was like, this is
so frustrating because I wanted to feel better for it,
and then my neck brace, my back brace, eyes bogged out, completely,
violently shaking all night, stomach upset all night before my wedding.
When my friend was in town, I was like, I
have to show you this amazing thing. Look what I
can do. And I turned my neck like one inch
(19:52):
to the left and he was like, is that amazing.
He's like, I'm really upset that you think that's amazing.
Speaker 1 (19:59):
Now, almost a decade after her panic attacks began in college,
Michelle is suffering from gastro intestinal issues, unbearable dizziness, tremors, insomnia,
and months after the dramatic day at our chiropractor's office,
she is still struggling to move. Was there ever a
moment that you can remember that you thought, I just
(20:23):
can't continue to live like this.
Speaker 2 (20:26):
I had taken my computer chair realchair to the bathroom
and I was standing in the mirror, holding on and
it was one of the first times I was like
standing up, and I just remember looking at myself and
I said out loud, there's no way you're going to
make it through this, just just there's no way. This time.
I know you've done it. You've done it before you
did the weight loss thing, you did the panic attack thing,
(20:47):
You've done it. It's not this time, You're not going
to make it.
Speaker 1 (20:51):
It sounds like you were at your breaking point that
something just had to give.
Speaker 2 (20:57):
Some other part of me, like inside of me, just
said and you're never going to say that again. But
it took that rock bottom moment of true hopelessness for
like that other side of me to come rescue me.
Speaker 1 (21:13):
Honestly, it was at that moment Michelle made it her
mission to get to the bottom of this medical mystery.
She began her research, a deep dive into everything she
could find that could be a clue, putting her knowledge
of science and the body to work. So from Pillow Mountain,
you know, you're collecting all these bits and pieces and components.
Speaker 2 (21:36):
This is almost like a CSI. It was literally like that.
There was like maps all over my apartment. I was
trying to figure out what this is.
Speaker 1 (21:42):
And then at some point you turned to one of
my favorite places in the world.
Speaker 2 (21:46):
Reddit read It was my hero during this time, and
I started to find language for what was going on
with me, and that to me was like the most
liberating thing. I'm like, Okay, you have these words, Michelle.
We have this word hypermobility somewhere in the mix, right,
we have this weird pots thing. I had a doctor
(22:08):
test in twenty nineteen pre covid and said you have
really high histamines, and to me that meant like I
was like, I don't have any skin issues. I don't
have any seasonal allergies. It didn't mean as much to
me then, but then I started to again put these
pieces together. So that's where I started to pull that
word histamine to the front of mind, because I also
(22:28):
noticed when I would take pepsid, my tremors would completely stop.
And I saw one study that I literally got it
from Reddit, which is funny enough, on long COVID, and
this was a complete breakthrough moment for me.
Speaker 1 (22:41):
What had the study found?
Speaker 2 (22:43):
It was about hospitalized patients. They studied sixteen hospitalized patients
and they put them on eighty milligrams of fomodidine pepsid,
and they found that those who were on the femodidine
had an eighty percent reduction in long COVID symptoms. And
I was like, why are they giving them an acid
block drug for COVID until I realized that pepsid was
(23:03):
an antihistamine. I also noticed when I would take pepsid,
my tremors would completely stop. That was one of my
biggest aha moments.
Speaker 1 (23:12):
So you then approach a doctor and you specifically asked
for a histamine serum test, yes, and it came back
sky high. When you say sky high, give me an
idea of.
Speaker 2 (23:25):
You want it to be less than two. Mine was
like fifteen, which I was really excited about, honestly because
of the validation it gave me. The third piece of
my puzzle was the pots piece. So I did have
a colleague who's a cardiologist, do the tilt table test
with me, and I failed beautifully.
Speaker 1 (23:41):
With the help of her expert Internet sleuthing skills, Michelle
began to realize that her range of symptoms pointed in
one clear direction, and.
Speaker 2 (23:51):
That's where I figured out MCS was the root for
me of the rest of what was going on.
Speaker 1 (23:58):
Mast cell activations also known as MCASS. After seventeen years
of questions, Michelle finally had some answers, but the answers
would only continue to evolve. Doctor Tanya Dempsey is an
expert in chronic diseases, autoimmune disorders and one of the
world's leading experts on mass cell activation syndrome, a new
(24:22):
frontier of medicine that is still very much in its infancy.
How do you explain mast cell activation syndrome?
Speaker 5 (24:30):
So a mast cell is a white blood cell. So
it's a white blood cell.
Speaker 4 (24:35):
They are there to.
Speaker 5 (24:35):
Help fight Now, a lot of people may know that
white blood cells circulate in the blood, and the mast
cell is a white blood cell that doesn't circulate in
the blood. It actually lives in the tissues of our bodies.
It's in our skin, in our respiratory track, in our
GI tract. They are in the tissues and the parts
(24:59):
of the body that interface with the environment, all these
things that I just mentioned. The skin, right is write
in contact with the outside world. The GI track, when
you eat food from the environment.
Speaker 4 (25:10):
It's in contact. Right.
Speaker 5 (25:11):
Normal mass cells are really really important in helping fight infection.
One of the ways that mass cells react and try
to help is that they explode.
Speaker 4 (25:21):
We call it degranulate.
Speaker 5 (25:22):
They manufacture these different chemicals that we call them mediators,
and these different chemicals are released from the mass cell
in an attempt to quote unquote fight off whatever they're
trying to fight.
Speaker 2 (25:36):
They're always looking to assess for threats, whether they're perceived
or realized, and they will send out messages to the
rest of the body on what to do in a
time of threat. The problem with mass Sell autivation syndrome
is that those messengers have their own problems. When there's
too many of them, they cause their own problems. So,
while we need our mass cells to help us during
(25:58):
times of injury, during times of threat, if we have
too many of those messengers floating around, they create new symptoms,
and that is the experience of having mass Sell activation syndrome.
Speaker 5 (26:09):
One of the chemicals that mass tells make is called histamine.
Speaker 2 (26:13):
The reason we talk about histamine a bit more than
the rest is because they tend to cause one of
the most dramatic symptom sets. And one of the biggest
functions of histamine is to cause something called vasodilation. Vasodilation
is the widening of our blood vessels.
Speaker 1 (26:31):
How is that connected to mcasts.
Speaker 2 (26:33):
So if we want to get nutrients, if we want
to get immune cells to a sight of injury, we
open up those blood vessels and we can send all
those messengers through the problem is if your blood vessels
are left open, well, we don't get blood and venus
return back to our brain and our heart. So this
piece is what connects one of the many ways POTS,
(26:56):
this form of dysautonomia and mass altivation, cinder and histamines.
If someone is in a hot shower, suddenly feel dizzy,
look down at their legs and notice there's like red
splotches on their legs, and then they notice their heart
starts to pound and they're also holding onto the walls.
What happens is in this instance is that both histamines
(27:17):
and heat are vasodilators. So what happens is your blood
is dropping down causing blood pooling in your legs, and
then your heart and your brain are going can you
send some blood up here, please, And so your heart
starts pounding really fast. You feel the dizziness because there's
not enough blood flow to your brain, and that's where
that symptom set happens. The other kind of component that
(27:40):
ties those two together is that POTS is a form
of dis automomia. And this is really really hard concept
for people. Can you explain why, Lauren, if your heart
was pounding out of your chest, what kind of doctor
would you go to?
Speaker 4 (27:58):
I go to the cardiologists.
Speaker 2 (27:59):
Do you go to a car bologists. Pots is a
form of dysautonomia that means the dysfunction of the autonomic
nervous system. So it's coming from your brain and your nerves.
It's not coming from your heart. That's the hard part
with histamine issues, right if you're having all these insomnia symptoms,
if you're having migraines, you're going to go to a neurologist.
(28:19):
The problem with histamines issues and issues like pods is
that the symptoms don't come from the system that you expect,
and that's why they're so challenging to diagnose.
Speaker 5 (28:30):
So many patients are disbelieved because they come in and
they have all.
Speaker 4 (28:34):
These complaints, but they look fine.
Speaker 1 (28:38):
It took Michelle years to get diagnosed, and it was
like the symptoms built over time, almost like a snowball
gaining speed down a hill. Is that common?
Speaker 5 (28:48):
So we know that there must be some genetic or
epigenetic phenomena happening. What we think happens is that there's
a series of events that over time makes it worse.
Could be a trauma of some kind, could be infection,
you know, severe strep throats, lime disease, living in mold
(29:09):
and Usually it's an escalation of symptoms with each trigger,
and so over time people get worse and worse.
Speaker 4 (29:15):
Most of the patients that.
Speaker 5 (29:16):
I see really didn't go into the major flair until
later in life.
Speaker 1 (29:21):
And that's exactly what happened for Michelle. Once you knew
that you were dealing with mcast, how did you go
about getting treatment? How did you go about learning to
heal yourself?
Speaker 2 (29:37):
So once I figured out those three pieces for me, MCAST,
pots and hypermobility, I wanted to understand what were people
experiencing and talking to practitioners. Then I started to put
together the new battle plan and that anti histem medications,
antihistamine supplements. It included dropping a lot of the supplements
(29:57):
that I may have reacted to in the past, dropping
an detox protocols, no fonsaunas, nothing that would push detoxification
for me. And then it also took reconditioning my body
and reconditioning my brain.
Speaker 3 (30:10):
I think it was just like a light bulb went
off and she was like finally, like I get it now,
you know. That's the thing is Michelle is a dietitian,
but really she's more of a scientist than anything. And
so she was like, Okay, now that I understand the
mechanisms of what's happening, I can fix it.
Speaker 5 (30:26):
The standard first step is maybe using some kind of antihistamine.
There are lots of patients where histamine is not an
issue for them, but there are enough people who get
some benefit from antihistamines that that's usually, you know, kind of.
Speaker 4 (30:38):
The first step.
Speaker 5 (30:39):
One of the exciting things is we just published on
the use of GLP one receptor agonists in the use
of mascinell activation syndrome. Those are weightless drugs, but at
low dose microdosing, they have massive stabilizing properties, and so
that's become like a really interesting, almost miraculous treatment for
some patients.
Speaker 1 (31:00):
Your sister told me that she really emphasizes hope as
one of the pillars of her teaching. Why is that
so in keeping with your little sister and what are
you most proud of her in terms of how she's
handled her diagnosis and stepped into her advocacy.
Speaker 3 (31:23):
I don't think anyone else could do what she did.
You know, hope is especially when you're dealing with a
chronic condition like this, it's exhausting. But she wants people
to know there is a way to live, be at
peace with it, and a way to support yourself, and
there are other people out there that are experiencing the
same thing, and that you're not alone and one bad
(31:46):
day doesn't have to define your whole week or your
whole month. More than anything, I think, hope is what
Michelle gives people.
Speaker 1 (31:53):
Only a few years out from learning about mcass, Michelle
has made it her mission to help others combat this
emptoms and find ways to live life again. You've turned
your personal experience into your work. In twenty twenty four,
you launched the Highly Sensitive Body Hub. What inspired you
(32:14):
to create it and what do you hope people will
find there?
Speaker 2 (32:19):
Unlike any other condition in the world, education about these
syndromes and conditions is health changing. These are nervous system
based conditions, so fear drives these conditions, so understanding heals
them in some way. I found that one of the
most liberating moments outside of this mindset change was understanding
(32:41):
I have to understand in order to heal. So what
I did with the Highly Sensitive Body Hub I kind
of cluster hypermobility, long covid mass selutivation syndrome d pots
as people living in highly sensitive bodies. So I created
the Highly Sensitive Body Hub with thirteen other incredible practitioners
who came in and it's just video education and how
do we draw those tools together, draw the understanding together.
(33:04):
And they are just tangible strategies using videos, handouts. There's herbalism,
there's supplements, there's food strategies, and a lot of nervous
system strategies as well exercise strategies. I always say, living
in a highly sensitive body is like playing checkers. When
your body is playing chess. You just have to learn
the game. And once you learn the game, your life
(33:26):
is completely different.
Speaker 1 (33:28):
What are you most excited about and hopeful for in
terms of future treatment and research with mcasts.
Speaker 2 (33:37):
We're starting to get research about this triad MCAST pots
and hypermobility, and it is so invigorating to understand the
connection between the connective tissue and the nervous system and
the immune system. People are really starting to understand that
MCAST is so much more than just seasonal allergies. It's
so much more than that anti histamine pill.
Speaker 1 (33:57):
Doctor Dempsey also sees hope in the future comes to
the further understanding of mcasts.
Speaker 5 (34:03):
We're really just at the tip of the iceberg. We
have so much more to learn, and I think that's good, right.
I think there are a lot of people suffering and
it feels overwhelming, like we're never going to get anywhere.
And what's exciting to me is that the conversation is
starting to grow, the government is starting to become interested,
the various research centers are starting.
Speaker 4 (34:25):
To become interested.
Speaker 5 (34:26):
Whether they're studying MCAST directly or they're studying the comorbidities,
it doesn't matter to me.
Speaker 4 (34:31):
That's really exciting, and I think.
Speaker 5 (34:33):
There are a lot of new technologies, new treatments like
GLP one that is changing things for patients beyond what
we could have imagined. So I think this is an
exciting time and I think the next two years we're
going to have better treatments, better ways to diagnose. And
for me, that's the name of the game. We just
got to keep at this to help as many people
(34:53):
as we can.
Speaker 3 (34:55):
It's such a.
Speaker 2 (34:55):
Corny thing that everyone says, but healing is not linear,
and sometimes your symptoms will be very bad and we're
going to ride those symptoms and then there will be
a day where you will forget that those symptoms were
so bad, and forget how it was for patients.
Speaker 5 (35:12):
What I always want to emphasize is that they know
themselves if they know there's something wrong, but they're not
being validated, the medical professionals are not believing them.
Speaker 4 (35:23):
Move on.
Speaker 3 (35:24):
No one knows you like you know you. So she
knew there was something wrong, and she was just like, no,
I don't accept that. I don't accept that there's nothing
that can be done about it.
Speaker 2 (35:33):
There is not one person living with complex chronic illness
who I do not have one hundred percent hope for.
Speaker 1 (35:43):
What would you say if you could travel back in
time and look into the face of the woman who
was crawling five blocks to get to urgent.
Speaker 2 (35:51):
Care she did exactly what she needed to do. I
would say like, I'm very proud of you that you
made it to the urgent care of this day, and
I would just say, like always, Michelle, believe yourself over
anyone else. If you can make it through this, which
I know you will, we'll be able to help other
thousands of people. So it'll be worth it. I promise
(36:13):
it'll be worth it. My name is Michelle Shapiro and
it took me seventeen years of symptoms before realizing that
I had mass sele extivation syndrome MCAS.
Speaker 1 (36:29):
You can follow Michelle on social media at Michelle Shapiro
RD and on her website Michelle Shapiro RD dot com.
Doctor Tanya Dempsey can be found on Instagram at doctor
Tanya Dempsey MD and online at doctor Tanya Dempsey dot com.
Coming up on next week's episode of Symptomatic, Sarah Marshall
(36:50):
knew from only a few months under her fourth daughter
Phoebe's life, that's something was wrong. By the time Phoebe
was six, Sarah began to fear for her daughter life.
Speaker 6 (37:00):
She was not in her seatbelt, literally like contorting and writhing,
and she just clearly could not get comfortable and the
pain was so severe, and I remember her thanking me
for taking care of her, as if she thought she
was gonna die.
Speaker 1 (37:18):
Phoebe underwent countless tests, multiple surgeries, and was in and
out of the hospital for years. Her health was declining
and her medical team could not tell them what was wrong.
Speaker 7 (37:29):
You know, at that age, specifically, you see doctors as
like literally your heroes. They're supposed to know everything, like
they are the smartest of the smartest, and so when
people were like, oh, I don't know, that was like, oh,
what do you mean you don't know?
Speaker 1 (37:44):
As always, we would love to hear from you. Send
us your thoughts on this episode, or share a medical
mystery of your own at Symptomatic at iHeartMedia dot com
and please rate and review Symptomatic wherever you get your podcasts.
We'll see you next time and until then, be well.
Symptomatic a medical mystery podcast, is a production of iHeartMedia's
(38:09):
Ruby Studio. Our show is hosted by me Lauren Bright Pacheco.
Our executive producers are James Foster, Matt Romano, and myself.
Our supervising producers are Ryan Ovadia, Haley Aliah Erickson, and
Daniel Ainsworth. This episode was written by Haley Aliah Erickson
(38:29):
and edited by Samuel Richardson.
Rube.
Speaker 2 (00:07):
I'm not okay. I don't know what's going on. I've
never had this happen before, and I don't know where
to go and what to do.
Speaker 3 (00:14):
I said, Michelle's having a serious problem. You have to
get over there. You need to go now.
Speaker 4 (00:20):
This is an invisible illness.
Speaker 5 (00:21):
And that's what I think makes it so difficult, because
they come in and they have all these complaints, but
they look fine.
Speaker 2 (00:28):
I was standing in the mirror and I just remember
looking at myself and I said out loud, there's no
way you're going to make it through this.
Speaker 1 (00:35):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of Americans suffer from some
chronic illness, and many struggle for an accurate diagnosis.
Speaker 4 (00:55):
These are their stories.
Speaker 1 (00:57):
I'm Lauren Bray Pacheco and this is symptomatic.
Speaker 2 (01:09):
I am Michelle Shapiro, and I'm an integrative and functional
registered dietitian.
Speaker 1 (01:15):
Michelle is the kind of person who never meets a stranger.
She speaks with enthusiasm, confidence, and is undeniably a New Yorker.
So you grew up at Queen's. Tell me a little
bit about your childhood and life growing up.
Speaker 2 (01:31):
I grew up in one of the most diverse neighborhoods
in the entire world. I think my high school was
the most diverse high school in the entire world at
one point. And because of that, I had such a
rich experience in life in just about every way. Socially,
I had a really beautiful life. But I had, in
my opinion, like this very ideal childhood where all of
(01:52):
my best friends were the children of my parents' best
friends and my sister's best friends. I really grew up
in community that was deeply inclusive and also just rich
in diversity in every way possible.
Speaker 1 (02:06):
You mentioned your sister, Jennifer, and I know you too
are incredibly close. Tell me a little bit about your
relationship and why, in addition to being sisters, you're also
best friends.
Speaker 2 (02:18):
I can't even think about her without crying. She is
the tougher, grittier, cooler version of me, and she is
my true blue soulmate, my sister.
Speaker 3 (02:29):
I am Jennifer Shapiro, and I am Michelle's big sister.
Speaker 1 (02:35):
Jennifer is almost three years older than Michelle, but the
pair have always been inseparable. Tell me a little bit
about your camaraderie from the get go. What were you
two like growing up?
Speaker 3 (02:47):
I think that a lot of people think, because we're
two girls and we are so close in age, that
there would be a lot of like competition between us.
But we never really in our entire life that we
never really had a lot of the disagreements that other
sisters frequently had, to the point where we grew up
(03:10):
in a house that had extra bedrooms and we shared
a room until I left for college, just because we
wanted to.
Speaker 1 (03:17):
I love that for somebody who hasn't had the pleasure
of meeting your little sister, how would you describe Michelle magic?
Speaker 3 (03:26):
It's all the Michelle magic. Everybody wants a piece of Michelle.
Everyone wants to have her attention and feel her kindness
and her empathy all the time. Like we can be
in a public place and all of a sudden, the
(03:48):
waitress will just be telling her about something that happened
when she was three. Everyone wants to bear their soul
to Michelle.
Speaker 1 (03:55):
This natural gift, a warmth that invites has always been
Michelle's for power and strength. Growing up, Michelle never had
any trouble forming friendships based on authentic connection. It hadn't
even occurred to her that surface level judgments may stand
in the way of her being accepted.
Speaker 2 (04:13):
One thing that was kind of different about me growing
up was that I always occupied a larger body.
Speaker 3 (04:18):
Michelle and I frankly were both overweight a lot of
our childhood and adolescens, Michelle particularly, but I definitely was
the largest out of my friends.
Speaker 2 (04:28):
It really wasn't much of a problem in Queen's versus
other places. I think people are judged on a different curve.
I think genetics played a role. And then also we
came from a household where love our mother more than anything,
but she didn't cook, and just in that I had
leaned on highly processed foods, we had, you know, trauma
like everyone else did growing up. That led to ME
using food as an emotional tool.
Speaker 1 (04:50):
When it was time for Michelle to go a way
to college, she began to fear that she would be
quickly evaluated by her peers based merely on what they
saw that.
Speaker 2 (04:59):
Was going to the universe. Dave Delaware and I realized, hmm,
They're not going to instantly know me for who I am.
This is a much more homogeneous place where people are
going to really judge you based on first appearances. And
I realized going into college, I need to lose weight,
and I need to lose weight quick if I'm going
to be able to do the things I want to
do and socialize in the ways I want to do.
(05:21):
I lost close to one hundred pounds in the year
leading into college. How did you do that? Just really
severe calory restriction. And I also went on a radical
vegan diet. I think my vegan diet was also a
little bit of disordered eating in disguise. I would say.
Speaker 3 (05:39):
I think that it was hard because she knew deep
down that what she was doing to her body by
not eating was not healthy, but she was getting so
much like external praise because she was someone that had
always been, you know, like the big girl in the group.
I think it was hard for her to like wreck
(06:00):
and sile.
Speaker 1 (06:01):
Those she was gaining the kind of social capital that
often comes with weight loss in our society. Michelle went
off to college and started to experience health issues.
Speaker 2 (06:11):
I thought, again, like anyone else, that when you lose
weight all of your health problems go away and everything's perfect,
And I had the exact opposite experience what happened. I
would describe my time in college as being incredibly sick.
I went from being this hypersocial person with a massive
social network and support system to someone who had debilitating
(06:35):
panic attacks and could barely leave my dorm room. I
was very dizzy a lot of college too, and I
had acid reflux and severe gut issues.
Speaker 4 (06:45):
Psychologically, that must have been grueling.
Speaker 2 (06:48):
Yeah, I really disliked panic attacks of all symptoms, and
anyone who's experienced chronic panic attacks will tell you I'll
take most things over a chronic panic attack.
Speaker 1 (06:58):
Can you explain that to somebody who hasn't had a
panic attack?
Speaker 2 (07:04):
It feels like you're going to die, I guess is
the most specific way I can explain it. And it
feels like every single cell in your body is instructing
your brain that you're going to die and there's absolutely
no way out of it. That's what it feels like
in the moment, is that there is. It's like you
wouldn't be able to run, you wouldn't be able to
use any of those emergency mechanisms because your entire body
(07:26):
is just trying to tell you that you're going to die.
It feels like the most extreme version of any symptom,
your heart pounding, sweating, terror, terror at the highest level.
As a person who's always felt like I can get
through anything, this was one of the first times in
my life where I was like, I don't know if
I'm going to make it through this.
Speaker 1 (07:48):
Did you seek medical treatment at the time, and what
were you told by doctors?
Speaker 2 (07:54):
I absolutely sawt medical treatment for the panic attacks. I
went to any doctor, the health center and a doctor
I could off campus, and their answers were, you have anxiety,
you have a permanent panic disorder, you can take medication
for life.
Speaker 3 (08:09):
I was away at college, but I remember there was
like things with her needing to constantly go on like
drives with my dad to calm herself down, knowing exactly
how long it would take her to get home, like
she always wanted to be sure that if she did
have like a panic attack, that she would be able
to like get home and get back to like a
(08:30):
safe place and regulate her nervous system.
Speaker 1 (08:33):
Though she was experiencing debilitating anxiety, Michelle made it through
school and inspired by her own weight loss journey, decided
to pursue a career as a dietitian.
Speaker 2 (08:43):
And to be honest with you, Lauren, and I went
in to school to be a dietitian, to learn like
the secrets of weight loss, even though I had already
lost the weight. A lot of dietitians actually suffer from
disordered eating and eating disorders disproportionately to other practitioners. In
the beginning, that was the transparent goal. It wasn't until
I graduated that I really understood what my mission and
my purpose was.
Speaker 1 (09:04):
After graduating, Michelle gets a job working in nursing homes.
The drive to work is a long commute, and suddenly
she begins to notice new terrifying symptoms.
Speaker 2 (09:15):
I remember walking through the hallways and holding on to
the walls because the dizziness was so extreme for me.
It's unsteadiness, but also a lot of visual disturbance. It's
just like a whoa, whoa who kind of feeling.
Speaker 1 (09:30):
Here's her sister, Jennifer's recollection of that time.
Speaker 3 (09:33):
She was driving to the Bronx from the border of
Queens and Long Island, so you know, it was forty
five minutes to an hour and I would remember she
would come out of the car and look like totally
depleted as a person, like dizzy, tired, like stumbling, and
she kept saying like, I'm having so much trouble driving,
I'm getting so tired. And at first it was like
confusing as we were like why, like you've driven back
(09:55):
and forth to Delaware, Like it just started kind of
slowly happening, and then she kept having like very severe
dizziness bells. I remember there was like a time that
there was a candle holder on the wall at my
mom's house and she just like walked right into it,
and I was like, what are you doing? Because she
couldn't even like see straight really like she was so
dizzy and out of it, and she really hit her
(10:17):
head hard.
Speaker 2 (10:19):
During those times when I was dizzy, I would also
get this like singy feeling. There's a tremor that kind
of happens. It feels like ants crawling onto your skin
a bit, and you have to understand, I'm at work,
I'm dizzy, I have no idea where it's coming from,
and I have no tools to fix it.
Speaker 1 (10:39):
After a few years at the nursing home job, Michelle
takes a job as an in house dietician for a
company in Manhattan with dreams of opening up her own
private practice. Michelle is working overtime to meet with clients
after hours, and the dizziness, now coupled with brain fog
and fatigue, will not stop.
Speaker 2 (10:59):
I worked from seven to three, and I saw private
practice clients from four to ten every day, so I
was working from seven am to ten pm. I had
started to dip my toe into the functional medicine world
a little bit, and I was like, Oh, this must
be a dreamal fatigue, This must be HPA access dysregulation,
this must be burnout. So I was trying to fix,
(11:20):
like put those root cause pieces together. You can chalk
anything up to burnout, right, So I was like, Okay, listen,
you're working like one hundred hours a week, so this
is why this is what's happening. But I tolerated feeling
awful so fascinating because your symptoms just took a backseat
to your career.
Speaker 1 (11:40):
And so while your symptoms are escalating, so are your
responsibilities and your workload.
Speaker 4 (11:48):
There had to have been like a.
Speaker 1 (11:49):
Crash in twenty eighteen and twenty nineteen. Michelle's symptoms continue
to escalate. She begins to experience headaches that will not
go away, gas, trou intestinal issues, and persistent insomnia. After
discovering she's been exposed to toxic mold in her apartment,
she begins mold detoxes through functional medicine doctors. But somehow
(12:13):
this treatment that was meant to help her feel better
seems to be making her symptoms exponentially worse. And then
in twenty twenty one, Michelle gets COVID.
Speaker 2 (12:23):
That was a whole different ballgame again. I mean, I
was unbelievably sick. There was new pain symptoms in all
of my joints. I feel like my joints are moving
in a way that they're not supposed to. There was
something with my neck, There was something with my back.
I would throw my back out all the time, even
though I was like an active person. My knees would
constantly be hurting. And there's a distinct feeling of dizziness
(12:44):
what I would call instability that I started to recognize
as being related to my neck. So I'd prop up
like ten pillows behind me, propped up on pillow mountain
in bed with an f brace on because I couldn't
lie fully back.
Speaker 1 (12:57):
An ever growing list of symptoms seemingly disconnected, and unfortunately
it was all about to get much, much worse.
Speaker 2 (13:07):
The crash, the real big crash, came in twenty twenty two.
I did end up moving from Manhattan to New Jersey.
I'm about five minutes outside of Manhattan, but still counts
because I needed to have a car again. Once I
started driving again, those old school dizzyness symptoms started coming
(13:27):
up again. So I ended up going to a chiropractor
who was about a block away from my apartment. They
were feeling my neck and they said, you know, in
my twenty years of experience, you have the tightest neck
I've ever felt. They were digging into my neck to
try to loosen everything. I got down the stairs after
the chiropractor's appointment, and I noticed my heart was pounding
(13:48):
like through my ears, and I remember the thoughts pounding
inside of my head going, you can't walk. If you
walk one more step, you're gonna die. If you've moved back,
you're gonna die. I get down, Get down, Get down,
get down, like almost like I was inn a war movie.
So I got down on all fours outside of the
chiropractor and I told my sister.
Speaker 3 (14:08):
She was like, I can't walk, I can't move. Every
time she would stand up, her blood pressure was dropping
lower and lower and lower.
Speaker 2 (14:17):
I'm not okay. I have to tell you right now.
I'm seriously not okay. My body is not okay. I
just left disappointment. I don't know what's going on.
Speaker 3 (14:26):
I'm scared. I can't be alone.
Speaker 2 (14:28):
I've never had this happen before, and I don't know
where to go and what to do.
Speaker 1 (14:33):
We'll be right back with Symptomatic, a Medical Mystery Podcast.
Now back to Symptomatic, a medical mystery podcast. Michelle Shapiro
has spent years dealing with seemingly unprompted bouts of dizziness,
extreme anxiety to the point of panic attacks, gas, true
(14:55):
intestinal issues, insomnia, headaches, and joint pain. An appointment with
a chiropractor, Michelle is left unable to walk, literally crawling
to the closest urgent care five city blocks away.
Speaker 2 (15:10):
My heart was pounding like through my ears, but I
got down on all fours outside of the chiropractorics. I
was trying to get breath in. I was laying on
the floor, so I called my sister and I said,
I have to make it to the yar because I
couldn't even make it back upstairs. And I said, and
I'm just gonna call on the cement to go to
the first med, which was like five blocks away.
Speaker 3 (15:31):
I was like, you have to do what you have
to do. I will stay on the phone with you.
We'll have our dad come to get you after this.
But you are going to have to drop down and
we're going to take it breath by breath, and you
are going to get there.
Speaker 2 (15:43):
And I would stop every like five steps, and I
was like, I can't do this. I can't do this.
And she's like, you have a few more steps. You
have a few more steps.
Speaker 1 (15:49):
Are you frantically kind of texting your father as you're
coaching her?
Speaker 3 (15:54):
I think I called him and I was just like, Daddy,
you have to go to Michelle right now. Michelle's having
a serious problem. You have to get over there. She's
going to be at the first med. I'll text you
the address, but you need to go now.
Speaker 2 (16:04):
When you're in that state, you don't know if walking
or stopping or sitting is going to make it better,
because when you're sitting, you also feel the heart pounding
and dizziness so much, and you're so aware of the symptoms,
so you just feel like, I literally do not know
which way to go. It's psychologically and the physical terror experience.
Speaker 1 (16:22):
You must have been terrified.
Speaker 2 (16:25):
I have to tell you, Lauren, that was not a
good day for me. Yes, I was completely completely terrified,
and so I made it to the city MD on.
I walked in on the floor and I pulled myself
up and I said, I'm having some sort of a
heart episode. They did every positional change they could to
try to lower my heart rate. Eventually they said, this
(16:46):
looks like some high heart rate, high blood pressure episode,
but if your baseline is not bad, I would get
evaluated for your heart Essentially, I'm going to write you
a per panel all prescription. I would recommend you take it.
So they had me take it for my blood pressure
and my heart rate to come down and then set
me home. Essentially, they were as helpful as they could be,
(17:07):
but they were like, we don't really know. Maybe you
should investigate pods pots being pushural or the thestatic techy
cardia syndrome. Where do you go from there?
Speaker 1 (17:16):
I mean, having had an episode where you have to
crawl five city blocks.
Speaker 2 (17:23):
Yeah, it was. It's I have to laugh, but it
was really quite bad, Lauren. It was really quite bad.
Speaker 1 (17:29):
After leaving Urgent Care on that terrifying day, Michelle's symptoms
only get worse, as if a switch flicked on that
cannot be turned off.
Speaker 2 (17:40):
I would have violent tremors and insomnia all night. If
I had to go to the bathroom, I had to
literally lift myself up with my arms onto my computer
chair and wheel myself put myself on the floor crawl
because if I put my feet on the ground, my
heart rate fluctuations were so severe that I would then
be an episode for days. So I was like, it's
(18:01):
just not worth it. While I was figuring that out,
I also had that adrenaline response, that insomnia response, that
diarrhea response. I never really felt hopelessness until that moment.
Speaker 3 (18:14):
She was like strapping on a neck brace and seeing
forty clients a week. In some ways, her life was
so severely impacted, but in others she's such a strong
and like resilient person that she was just fighting her
way through. Like I remember once I took her for
a colonoscopy. You know, they didn't really find much, and
(18:34):
I remember her talking to the GI doctor after and
being like, I'm telling you there is something wrong, and
it's like, do you think your son or anybody else
would want to feel so dizzy that they are crawling
in the street. You wouldn't wish it on your worst enemy.
So it's so disheartening when people didn't believe Michelle or
understand the severity of it.
Speaker 1 (18:53):
Throughout this time, Michelle has gotten engaged, beautiful milestones in
her life taking place alongside he's incredibly debilitating set of symptoms.
In the spring of twenty twenty two, Michelle has a
bachelorette party and it does not go to plan.
Speaker 2 (19:10):
The night before the bachelorette party, my best friend came
from out of town. We were doing karaoke. I remember
doing one or two songs and I couldn't stand anymore.
So basically everyone else I was like, just enjoy yourself.
I found a couch in the airbnb and I was
just laying on it and people would come sit on
the floor and talk to me while I'm laying and
they started to see how serious the situation was. I
(19:32):
literally did not sleep one minute during that night. I
was just wide awake, and I was like, this is
so frustrating because I wanted to feel better for it,
and then my neck brace, my back brace, eyes bogged out, completely,
violently shaking all night, stomach upset all night before my wedding.
When my friend was in town, I was like, I
have to show you this amazing thing. Look what I
can do. And I turned my neck like one inch
(19:52):
to the left and he was like, is that amazing.
He's like, I'm really upset that you think that's amazing.
Speaker 1 (19:59):
Now, almost a decade after her panic attacks began in college,
Michelle is suffering from gastro intestinal issues, unbearable dizziness, tremors, insomnia,
and months after the dramatic day at our chiropractor's office,
she is still struggling to move. Was there ever a
moment that you can remember that you thought, I just
(20:23):
can't continue to live like this.
Speaker 2 (20:26):
I had taken my computer chair realchair to the bathroom
and I was standing in the mirror, holding on and
it was one of the first times I was like
standing up, and I just remember looking at myself and
I said out loud, there's no way you're going to
make it through this, just just there's no way. This time.
I know you've done it. You've done it before you
did the weight loss thing, you did the panic attack thing,
(20:47):
You've done it. It's not this time, You're not going
to make it.
Speaker 1 (20:51):
It sounds like you were at your breaking point that
something just had to give.
Speaker 2 (20:57):
Some other part of me, like inside of me, just
said and you're never going to say that again. But
it took that rock bottom moment of true hopelessness for
like that other side of me to come rescue me.
Speaker 1 (21:13):
Honestly, it was at that moment Michelle made it her
mission to get to the bottom of this medical mystery.
She began her research, a deep dive into everything she
could find that could be a clue, putting her knowledge
of science and the body to work. So from Pillow Mountain,
you know, you're collecting all these bits and pieces and components.
Speaker 2 (21:36):
This is almost like a CSI. It was literally like that.
There was like maps all over my apartment. I was
trying to figure out what this is.
Speaker 1 (21:42):
And then at some point you turned to one of
my favorite places in the world.
Speaker 2 (21:46):
Reddit read It was my hero during this time, and
I started to find language for what was going on
with me, and that to me was like the most
liberating thing. I'm like, Okay, you have these words, Michelle.
We have this word hypermobility somewhere in the mix, right,
we have this weird pots thing. I had a doctor
(22:08):
test in twenty nineteen pre covid and said you have
really high histamines, and to me that meant like I
was like, I don't have any skin issues. I don't
have any seasonal allergies. It didn't mean as much to
me then, but then I started to again put these
pieces together. So that's where I started to pull that
word histamine to the front of mind, because I also
(22:28):
noticed when I would take pepsid, my tremors would completely stop.
And I saw one study that I literally got it
from Reddit, which is funny enough, on long COVID, and
this was a complete breakthrough moment for me.
Speaker 1 (22:41):
What had the study found?
Speaker 2 (22:43):
It was about hospitalized patients. They studied sixteen hospitalized patients
and they put them on eighty milligrams of fomodidine pepsid,
and they found that those who were on the femodidine
had an eighty percent reduction in long COVID symptoms. And
I was like, why are they giving them an acid
block drug for COVID until I realized that pepsid was
(23:03):
an antihistamine. I also noticed when I would take pepsid,
my tremors would completely stop. That was one of my
biggest aha moments.
Speaker 1 (23:12):
So you then approach a doctor and you specifically asked
for a histamine serum test, yes, and it came back
sky high. When you say sky high, give me an
idea of.
Speaker 2 (23:25):
You want it to be less than two. Mine was
like fifteen, which I was really excited about, honestly because
of the validation it gave me. The third piece of
my puzzle was the pots piece. So I did have
a colleague who's a cardiologist, do the tilt table test
with me, and I failed beautifully.
Speaker 1 (23:41):
With the help of her expert Internet sleuthing skills, Michelle
began to realize that her range of symptoms pointed in
one clear direction, and.
Speaker 2 (23:51):
That's where I figured out MCS was the root for
me of the rest of what was going on.
Speaker 1 (23:58):
Mast cell activations also known as MCASS. After seventeen years
of questions, Michelle finally had some answers, but the answers
would only continue to evolve. Doctor Tanya Dempsey is an
expert in chronic diseases, autoimmune disorders and one of the
world's leading experts on mass cell activation syndrome, a new
(24:22):
frontier of medicine that is still very much in its infancy.
How do you explain mast cell activation syndrome?
Speaker 5 (24:30):
So a mast cell is a white blood cell. So
it's a white blood cell.
Speaker 4 (24:35):
They are there to.
Speaker 5 (24:35):
Help fight Now, a lot of people may know that
white blood cells circulate in the blood, and the mast
cell is a white blood cell that doesn't circulate in
the blood. It actually lives in the tissues of our bodies.
It's in our skin, in our respiratory track, in our
GI tract. They are in the tissues and the parts
(24:59):
of the body that interface with the environment, all these
things that I just mentioned. The skin, right is write
in contact with the outside world. The GI track, when
you eat food from the environment.
Speaker 4 (25:10):
It's in contact. Right.
Speaker 5 (25:11):
Normal mass cells are really really important in helping fight infection.
One of the ways that mass cells react and try
to help is that they explode.
Speaker 4 (25:21):
We call it degranulate.
Speaker 5 (25:22):
They manufacture these different chemicals that we call them mediators,
and these different chemicals are released from the mass cell
in an attempt to quote unquote fight off whatever they're
trying to fight.
Speaker 2 (25:36):
They're always looking to assess for threats, whether they're perceived
or realized, and they will send out messages to the
rest of the body on what to do in a
time of threat. The problem with mass Sell autivation syndrome
is that those messengers have their own problems. When there's
too many of them, they cause their own problems. So,
while we need our mass cells to help us during
(25:58):
times of injury, during times of threat, if we have
too many of those messengers floating around, they create new symptoms,
and that is the experience of having mass Sell activation syndrome.
Speaker 5 (26:09):
One of the chemicals that mass tells make is called histamine.
Speaker 2 (26:13):
The reason we talk about histamine a bit more than
the rest is because they tend to cause one of
the most dramatic symptom sets. And one of the biggest
functions of histamine is to cause something called vasodilation. Vasodilation
is the widening of our blood vessels.
Speaker 1 (26:31):
How is that connected to mcasts.
Speaker 2 (26:33):
So if we want to get nutrients, if we want
to get immune cells to a sight of injury, we
open up those blood vessels and we can send all
those messengers through the problem is if your blood vessels
are left open, well, we don't get blood and venus
return back to our brain and our heart. So this
piece is what connects one of the many ways POTS,
(26:56):
this form of dysautonomia and mass altivation, cinder and histamines.
If someone is in a hot shower, suddenly feel dizzy,
look down at their legs and notice there's like red
splotches on their legs, and then they notice their heart
starts to pound and they're also holding onto the walls.
What happens is in this instance is that both histamines
(27:17):
and heat are vasodilators. So what happens is your blood
is dropping down causing blood pooling in your legs, and
then your heart and your brain are going can you
send some blood up here, please, And so your heart
starts pounding really fast. You feel the dizziness because there's
not enough blood flow to your brain, and that's where
that symptom set happens. The other kind of component that
(27:40):
ties those two together is that POTS is a form
of dis automomia. And this is really really hard concept
for people. Can you explain why, Lauren, if your heart
was pounding out of your chest, what kind of doctor
would you go to?
Speaker 4 (27:58):
I go to the cardiologists.
Speaker 2 (27:59):
Do you go to a car bologists. Pots is a
form of dysautonomia that means the dysfunction of the autonomic
nervous system. So it's coming from your brain and your nerves.
It's not coming from your heart. That's the hard part
with histamine issues, right if you're having all these insomnia symptoms,
if you're having migraines, you're going to go to a neurologist.
(28:19):
The problem with histamines issues and issues like pods is
that the symptoms don't come from the system that you expect,
and that's why they're so challenging to diagnose.
Speaker 5 (28:30):
So many patients are disbelieved because they come in and
they have all.
Speaker 4 (28:34):
These complaints, but they look fine.
Speaker 1 (28:38):
It took Michelle years to get diagnosed, and it was
like the symptoms built over time, almost like a snowball
gaining speed down a hill. Is that common?
Speaker 5 (28:48):
So we know that there must be some genetic or
epigenetic phenomena happening. What we think happens is that there's
a series of events that over time makes it worse.
Could be a trauma of some kind, could be infection,
you know, severe strep throats, lime disease, living in mold
(29:09):
and Usually it's an escalation of symptoms with each trigger,
and so over time people get worse and worse.
Speaker 4 (29:15):
Most of the patients that.
Speaker 5 (29:16):
I see really didn't go into the major flair until
later in life.
Speaker 1 (29:21):
And that's exactly what happened for Michelle. Once you knew
that you were dealing with mcast, how did you go
about getting treatment? How did you go about learning to
heal yourself?
Speaker 2 (29:37):
So once I figured out those three pieces for me, MCAST,
pots and hypermobility, I wanted to understand what were people
experiencing and talking to practitioners. Then I started to put
together the new battle plan and that anti histem medications,
antihistamine supplements. It included dropping a lot of the supplements
(29:57):
that I may have reacted to in the past, dropping
an detox protocols, no fonsaunas, nothing that would push detoxification
for me. And then it also took reconditioning my body
and reconditioning my brain.
Speaker 3 (30:10):
I think it was just like a light bulb went
off and she was like finally, like I get it now,
you know. That's the thing is Michelle is a dietitian,
but really she's more of a scientist than anything. And
so she was like, Okay, now that I understand the
mechanisms of what's happening, I can fix it.
Speaker 5 (30:26):
The standard first step is maybe using some kind of antihistamine.
There are lots of patients where histamine is not an
issue for them, but there are enough people who get
some benefit from antihistamines that that's usually, you know, kind of.
Speaker 4 (30:38):
The first step.
Speaker 5 (30:39):
One of the exciting things is we just published on
the use of GLP one receptor agonists in the use
of mascinell activation syndrome. Those are weightless drugs, but at
low dose microdosing, they have massive stabilizing properties, and so
that's become like a really interesting, almost miraculous treatment for
some patients.
Speaker 1 (31:00):
Your sister told me that she really emphasizes hope as
one of the pillars of her teaching. Why is that
so in keeping with your little sister and what are
you most proud of her in terms of how she's
handled her diagnosis and stepped into her advocacy.
Speaker 3 (31:23):
I don't think anyone else could do what she did.
You know, hope is especially when you're dealing with a
chronic condition like this, it's exhausting. But she wants people
to know there is a way to live, be at
peace with it, and a way to support yourself, and
there are other people out there that are experiencing the
same thing, and that you're not alone and one bad
(31:46):
day doesn't have to define your whole week or your
whole month. More than anything, I think, hope is what
Michelle gives people.
Speaker 1 (31:53):
Only a few years out from learning about mcass, Michelle
has made it her mission to help others combat this
emptoms and find ways to live life again. You've turned
your personal experience into your work. In twenty twenty four,
you launched the Highly Sensitive Body Hub. What inspired you
(32:14):
to create it and what do you hope people will
find there?
Speaker 2 (32:19):
Unlike any other condition in the world, education about these
syndromes and conditions is health changing. These are nervous system
based conditions, so fear drives these conditions, so understanding heals
them in some way. I found that one of the
most liberating moments outside of this mindset change was understanding
(32:41):
I have to understand in order to heal. So what
I did with the Highly Sensitive Body Hub I kind
of cluster hypermobility, long covid mass selutivation syndrome d pots
as people living in highly sensitive bodies. So I created
the Highly Sensitive Body Hub with thirteen other incredible practitioners
who came in and it's just video education and how
do we draw those tools together, draw the understanding together.
(33:04):
And they are just tangible strategies using videos, handouts. There's herbalism,
there's supplements, there's food strategies, and a lot of nervous
system strategies as well exercise strategies. I always say, living
in a highly sensitive body is like playing checkers. When
your body is playing chess. You just have to learn
the game. And once you learn the game, your life
(33:26):
is completely different.
Speaker 1 (33:28):
What are you most excited about and hopeful for in
terms of future treatment and research with mcasts.
Speaker 2 (33:37):
We're starting to get research about this triad MCAST pots
and hypermobility, and it is so invigorating to understand the
connection between the connective tissue and the nervous system and
the immune system. People are really starting to understand that
MCAST is so much more than just seasonal allergies. It's
so much more than that anti histamine pill.
Speaker 1 (33:57):
Doctor Dempsey also sees hope in the future comes to
the further understanding of mcasts.
Speaker 5 (34:03):
We're really just at the tip of the iceberg. We
have so much more to learn, and I think that's good, right.
I think there are a lot of people suffering and
it feels overwhelming, like we're never going to get anywhere.
And what's exciting to me is that the conversation is
starting to grow, the government is starting to become interested,
the various research centers are starting.
Speaker 4 (34:25):
To become interested.
Speaker 5 (34:26):
Whether they're studying MCAST directly or they're studying the comorbidities,
it doesn't matter to me.
Speaker 4 (34:31):
That's really exciting, and I think.
Speaker 5 (34:33):
There are a lot of new technologies, new treatments like
GLP one that is changing things for patients beyond what
we could have imagined. So I think this is an
exciting time and I think the next two years we're
going to have better treatments, better ways to diagnose. And
for me, that's the name of the game. We just
got to keep at this to help as many people
(34:53):
as we can.
Speaker 3 (34:55):
It's such a.
Speaker 2 (34:55):
Corny thing that everyone says, but healing is not linear,
and sometimes your symptoms will be very bad and we're
going to ride those symptoms and then there will be
a day where you will forget that those symptoms were
so bad, and forget how it was for patients.
Speaker 5 (35:12):
What I always want to emphasize is that they know
themselves if they know there's something wrong, but they're not
being validated, the medical professionals are not believing them.
Speaker 4 (35:23):
Move on.
Speaker 3 (35:24):
No one knows you like you know you. So she
knew there was something wrong, and she was just like, no,
I don't accept that. I don't accept that there's nothing
that can be done about it.
Speaker 2 (35:33):
There is not one person living with complex chronic illness
who I do not have one hundred percent hope for.
Speaker 1 (35:43):
What would you say if you could travel back in
time and look into the face of the woman who
was crawling five blocks to get to urgent.
Speaker 2 (35:51):
Care she did exactly what she needed to do. I
would say like, I'm very proud of you that you
made it to the urgent care of this day, and
I would just say, like always, Michelle, believe yourself over
anyone else. If you can make it through this, which
I know you will, we'll be able to help other
thousands of people. So it'll be worth it. I promise
(36:13):
it'll be worth it. My name is Michelle Shapiro and
it took me seventeen years of symptoms before realizing that
I had mass sele extivation syndrome MCAS.
Speaker 1 (36:29):
You can follow Michelle on social media at Michelle Shapiro
RD and on her website Michelle Shapiro RD dot com.
Doctor Tanya Dempsey can be found on Instagram at doctor
Tanya Dempsey MD and online at doctor Tanya Dempsey dot com.
Coming up on next week's episode of Symptomatic, Sarah Marshall
(36:50):
knew from only a few months under her fourth daughter
Phoebe's life, that's something was wrong. By the time Phoebe
was six, Sarah began to fear for her daughter life.
Speaker 6 (37:00):
She was not in her seatbelt, literally like contorting and writhing,
and she just clearly could not get comfortable and the
pain was so severe, and I remember her thanking me
for taking care of her, as if she thought she
was gonna die.
Speaker 1 (37:18):
Phoebe underwent countless tests, multiple surgeries, and was in and
out of the hospital for years. Her health was declining
and her medical team could not tell them what was wrong.
Speaker 7 (37:29):
You know, at that age, specifically, you see doctors as
like literally your heroes. They're supposed to know everything, like
they are the smartest of the smartest, and so when
people were like, oh, I don't know, that was like, oh,
what do you mean you don't know?
Speaker 1 (37:44):
As always, we would love to hear from you. Send
us your thoughts on this episode, or share a medical
mystery of your own at Symptomatic at iHeartMedia dot com
and please rate and review Symptomatic wherever you get your podcasts.
We'll see you next time and until then, be well.
Symptomatic a medical mystery podcast, is a production of iHeartMedia's
(38:09):
Ruby Studio. Our show is hosted by me Lauren Bright Pacheco.
Our executive producers are James Foster, Matt Romano, and myself.
Our supervising producers are Ryan Ovadia, Haley Aliah Erickson, and
Daniel Ainsworth. This episode was written by Haley Aliah Erickson
(38:29):
and edited by Samuel Richardson.
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