In this powerful episode of Untangling PANDAS and PANS, host Susan Manfull, PhD sits down with Jen, a resilient young woman whose health took a devastating and mysterious turn in her early twenties. From being taken out of work on a stretcher—twice—to struggling for answers amidst an array of debilitating physical and psychiatric symptoms, Jen shares a deeply personal account of navigating a fragmented medical system while battling PANS/PANDAS and related autoimmune conditions.
Jen recounts her long history of strep infections, early signs of neurological distress, misdiagnoses, and the profound impact of being dismissed by the medical community. She opens up about the moment she was finally heard, the diagnosis that changed everything, and her journey toward recovery with IVIG treatment. Now in graduate school and reclaiming her life, Jen offers hope, insight, and advice to others walking a similar path.
Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.
Credits: Music by Kingsley Durant from his "Convertible" album
To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:07):
Untangling Pandas and Pans is a podcast about two
little-known medical disorderscharacterized by the sudden and
dramatic onset of symptoms suchas obsessions and compulsions,
vocal or motor tics andrestricted eating behaviors, and
a whole host of other symptomsfollowing a strep or other
bacterial or viral infection.
(00:29):
I have the privilege ofinterviewing some of the top
researchers and clinicians inthis rapidly growing area, known
by various names such asimmune-mediated neuropsychiatric
disorders, infection-associatedneuroimmune disorders and
autoimmune encephalitis, orsimply pandas and pants.
My name is Dr Susan Manful.
(00:50):
I am a social psychologist, theexecutive director of the Alex
Manful Fund and the mother ofAlex Manful, who died at 26
years old due to pandas, adisorder my husband and I knew
next to nothing about, certainlynot that our daughter could die
from it.
Speaker 2 (01:19):
This is episode 14 of Untangling Pandas and Pans,
recorded May 31st 2025.
Speaker 1 (01:27):
Welcome to Untangling Pandas and Pans, a monthly
podcast in which we talk aboutinfection-associated
immune-mediated neuropsychiatricdisorders.
Today, my guest is Jen, a20-something-year-old woman
diagnosed with pandas andANS.
As a young adult, in college,she was a star athlete.
Just a few years later, though,her health prevented her from
(01:51):
continuing to work at her job.
She tells a story of how shefinally came to get a diagnosis
and effective treatment that hasenabled her to feel like
herself again, attend graduateschool and pursue a career she
has long wanted to follow.
She is an inspiration, to saythe least.
I've been very fortunate to talkwith Jen on a semi-regular
(02:12):
basis since the summer of 2023.
Yours, jen, is a verycomplicated story and I wasn't
sure, as I mentioned in ourearlier conversation, just where
to begin, so I decided to startat what I feel is one of the
(02:35):
most important, pivotal pointsin your story, which was when
you were taken out of your placeof employment on a stretcher.
Out of your place of employmenton a stretcher in well, I guess
that happened twice, in July2022 and January 2023.
So, if it's okay with you, Ithink we'll start there and
(02:57):
maybe you could tell thelisteners a little bit about
those two episodes, and thenlet's start a lot earlier in
your life and I think when youwere around 10 years old.
So can you tell us about those,those exits from your place of
employment?
Speaker 3 (03:20):
So the first one was a couple of days after the 4th
of July and I had been feelingkind of weird for a while at
that point, and more likeacutely weird for a while at
that point, and I had beenbrushing it off and brushing it
(03:43):
off and then all of a sudden Istarted having this thing.
That was kind of like a panicattack and it felt as if I was
going to pass out and throw upat the same time.
And so I went into my boss'soffice no-transcript, are you
(04:27):
okay?
And it was like her first orsecond day, you know.
I very quickly explained to herthe situation and, you know,
after a few minutes of it notgetting better, I remember they
lowered me down onto the floorand they were like okay, well,
maybe if you sit down onto thelike on the floor it'll be okay.
(04:47):
And I was like, okay, I hope so.
And then I felt my eyes startrolling back in my head and I
was having a hard time keepingthem open.
I felt extremely nauseous, Ithought that I was going to
throw up and I then I startedshaking uncontrollably,
(05:07):
trembling.
So they called the paramedicsand they had, you know, they
they lifted me onto a gurney,they strapped me in and they
brought me out of the buildingon a stretcher and then they
took me to a hospital, like somehospital nearby, and, um, at
(05:33):
the hospital they were like Idon't know.
They did a chest x-ray, whichwas kind of weird, and then they
didn't have any clear picturesto what they were going to do
with me.
So I was just there in my workclothes Okay, what next?
And then they saw the rash onmy chest and they were, and the
(05:54):
one doctor was like oh, we'regoing to test you for Lyme
disease.
So they drew blood and theyleft the vial of blood in the
exam room that I was in and theynever tested it.
Ah, interesting.
Yeah, yeah, they just gave me.
They told me that they weregoing to give me a two week dose
(06:14):
of doxycycline and then theygave me a 10 day course of
doxycycline and then they werelike, okay, you can go home.
And I was like what?
And I was still very dizzy,very disoriented, and you know,
one of my co-workers took mehome.
That was like the beginning ofthe end.
Speaker 1 (06:32):
Well, that must have been so frightening.
Speaker 3 (06:35):
Yeah, I had no idea what was happening.
I was living far away from myfamily, like I was still fairly
new to you know the city that Iwas in, and so I didn't really
have too many people who I wasclose enough with to help me out
.
And one of my friends was likethree hours away and she drove
(06:56):
up the next day to kind of trytaking care of me, and then it
became evident that I was likenot in good condition at all,
and then she drove me back up toher family's house and then my
mom picked me up and I spent afew days at home with my family.
Speaker 1 (07:17):
Yeah, and then you felt better and returned to work
.
Speaker 3 (07:20):
I told myself I did because I didn't want to be.
I don't want to be sick, no onewants to be sick.
And then I just, you know, Ikept on getting worse and worse
and worse.
I would try to go to work and Iwould feel like extremely weak,
extremely shaky.
My heart rate was all over the.
I ended up in the ER again, Iguess a week after and when one
(07:49):
side of my body went numb andthe ER didn't really do much for
me.
I effectively just sat thereshaking for 14 hoursikes until
my parents picked me up.
That was basically it.
Speaker 1 (08:10):
I did you get a diagnosis for for that trip?
Speaker 3 (08:14):
no, no they said that they did a ct scan.
I have no recollection of thect scan.
I I don't't a hundred percentknow about what happened there.
Speaker 1 (08:27):
Okay, so fast forward about six months or so.
What happened then?
Speaker 3 (08:35):
So I had had an allergic reaction to this
breakfast sandwich that I'deaten for months without really
much issue.
And, um, yeah, I I started toget hives and stuff and I
started having a hard timebreathing.
And so they called in theparamedics and they again
(08:56):
wheeled me out on a gurney fromthe building, um into a, um, you
know, brought me over to thesame hospital and they, you know
, gave me some IV Benadryl, ivsteroids, um, iv Pepsid.
Then they observed me for likethree, four hours however long
(09:18):
they're supposed to observe youafter the event and then I went
home and then Were you better.
Speaker 1 (09:29):
At that point.
Your symptoms had remitted.
Speaker 3 (09:33):
Not really.
No, I was just kind of tryingto push through it and I was
trying to, you know, not lookbad and I was doing a really bad
job of that.
And which is, you know, it'shard when you're very early in
(09:55):
your career and you have all ofthese mysterious symptoms that
are very legitimate and veryreal and they're not being taken
seriously by anyone.
They're not being takenseriously by anyone and they're
not being taken seriously by anymember of the medical community
that you're seeing.
Then you have no one to vouchfor you and say to your place of
(10:15):
employment and say, like she'snot faking, she's actually
incredibly ill.
But yeah, so actually laterthat day I, after going home
from the hospital, I had a pieceof dark chocolate and almonds
and then I noticed, over thecourse of about two minutes, my
heart rate went from 80 to 135.
(10:38):
And my mouth got incrediblyitchy.
And my mouth got incrediblyitchy, I started having a hard
time breathing.
So I called my dad, because Iwould call someone anytime.
I felt like I was having anallergic reaction and over the
past few months I had startedhaving these feelings and I like
these things where I didn't, Iwasn't entirely sure if they
(11:00):
were allergic reactions or not.
This was definitely one.
And then I called my dad and hewas like, well, you're talking
to me.
I was like, yeah, I'm talkingto you, but, like my, my throat
is getting increasingly tighter.
And he was like, well, do youhave your EpiPen?
Because I had had my.
I had had an EpiPen for a while, just from a previous thing.
(11:23):
I went down to the lobby of myapartment and I asked the woman
at the front desk.
I explained what was happeningand I said if I need to use the
EpiPen, I need you to call 911.
My voice was gettingincreasingly faint because of
the air.
Like the air was less and lessair was getting through.
(11:44):
And then, um, my vision startedgoing black and then this guy
was walking in from work.
At this point I was like soweak that I couldn't open the
EpiPen, which is I think that'sa design flaw, I think that's a
design flaw in the EpiPens,because that if you have someone
(12:06):
who's like too weak to usetheir own EpiPen, like what's
the point?
But he opened the EpiPen, but hehad.
He had me stab it.
That was my second ambulanceride that day and yeah to the
hospital.
Speaker 1 (12:23):
Same hospital.
Speaker 3 (12:25):
A different hospital.
Speaker 1 (12:26):
Different Okay.
Speaker 3 (12:27):
Yeah, I stayed overnight and I got um.
I had one doctor tell me oh,you didn't actually have an
allergic reaction and I was likepretty sure I did Um.
But then they took my triptaste like 12 hours after the
fact and they were like see,your triptase is normal and I'm
like your triptase for an acuteallergic reaction, from what I
(12:50):
know, isn't like you have acertain window of time and you
took it outside of the window oftime that you're supposed to
take it.
So of course my triptase isgoing to be normal.
That was fun.
Speaker 1 (13:05):
You were already becoming very knowledgeable
about medicine and the practiceof medicine.
Speaker 3 (13:12):
It was entirely out of necessity, because when you
have as many unexplainedsymptoms as I did, you have to
read medical journals, becauseyou have to know which questions
to ask which doctors, and thenyou have to know which doctors
to go to to advocate foryourself, because my primary
(13:33):
doctor told me I had anxiety andshingles.
Speaker 1 (13:39):
And shingles.
Yes, okay.
Speaker 3 (13:43):
And so I.
That didn't sound right.
He told me the rash wasshingles and you know, maybe
some people have shingles.
I didn't have shingles becausethe rash responds.
The rash responded toantibiotics.
Speaker 1 (14:02):
You're a little young for shingles too, aren't you?
Speaker 3 (14:04):
A little bit, a little bit.
Speaker 1 (14:07):
So with that, was it at that point that you resigned
from your place of employment totry and figure out what was
going on with you medically?
Speaker 3 (14:17):
Yes, that was already going to be my last week, oh,
okay, it was not something thatI wanted to do, but in the end
it ended up being, I think,wholly necessary.
Speaker 1 (14:30):
So, as listeners already know, you're doing
really well now and doing a lotof the things that you've wanted
to do for a couple of years,but let's back up from that
point in time in January 2023.
Let's go back to when you were10 years old, because in our
(14:54):
conversations, as I understandit, that's another turning point
, and if you could kind of walkus through that point up until
January 2022.
And I think that would be great, starting with the, the mono
and the strap that you had at 10.
Or even before that was, werethere any other remarkable
(15:18):
illnesses that you had hadbefore that?
Speaker 3 (15:21):
Yeah, when I was a baby, my eardrums burst twice
each because of chronic earinfections.
Yeah, I was constantly onantibiotics.
I remember one time I was likethree or four and I saw the
antibiotics.
You know the flavored stuffthat they give kids tastes kind
of like candy.
I asked my mom when do I get tohave that again?
(15:45):
And she goes.
She looks at, she looks at thething, she looks at me and she
goes.
Three weeks, that's howregularly I was getting
bacterial infections.
Wow, primarily strep, I believeat that point because I wasn't
getting ear infections anymorebecause I had gotten tubes put
in my ears a couple of yearsprior.
Speaker 1 (16:09):
And then there was a lot of strep throat.
Speaker 3 (16:12):
Yes, All throughout I was always on antibiotics for
strep and then it got to thepoint when I was a little bit
older middle school, high schoolwhen I would get sore throats.
That would persist until I tookantibiotics.
The funny thing was theyweren't always positive for
(16:32):
strep and so I would just sufferwith these really bad sore
throats and then eventually Iwould either have like a
sympathetic doctor who's likeokay, well, you've had a sore
throat for like three months atthis point, Like I should
probably give you someantibiotics to see if it helps,
and lo and behold, every time ithelped, Wow.
(16:53):
Or occasionally it wouldprobably about 50% of the time
it would be positive for strep.
Speaker 1 (17:01):
Okay, so you knew strep well, and when?
When you turned 10, you hadstrep as well as mono.
Is that correct?
Speaker 3 (17:11):
Yeah, it was a little bit before I turned 11.
Um, and so I had mono and strepand I remember, leading up to
it, I started having severeinsomnia.
When I started feeling funnyyou know when you're like
starting to get sick and you'relike I don't really know what's
happening I started to getinsomnia, like very bad insomnia
(17:35):
, especially for a 10 year old.
I wouldn't fall asleep untilafter 11 PM and I would wake up
on my own around 5 am and Iwouldn't be able to go back to
sleep.
I had to check the doors thatthey were locked every night and
it was like obsessively and Icouldn't get myself to stop that
(18:01):
was new new behavior that wasincredibly new.
It was that I had never donethat before.
Um, and then I started to getreally, really anxious.
I would see like headlines thatare scary for an 11 year old
and like, oh no, what if thathappens to my?
Or for a 10 year old rather.
And I'd be like, oh no, what ifthat happens to my family?
(18:21):
And then I started gettingreally tired and I remember
three of my soccer teammates gotmono and you know, like you're
all sharing water bottles, youdrink out of the wrong person's
water bottle.
One time you get mono.
I also got strep.
I went to the doctor.
(18:43):
I remember I was like living oncough drops and my mom, finally,
after I guess like a week or afew days, I don't really know
she was like okay, something'swrong with her.
She took me to the doctor.
The doctor said well, you know,it's really only mono like 25%
(19:05):
of the time, so like we don'treally have to do the blood work
.
And my mom got mad at him.
She's like you're, you're doingthe blood work for my kid.
Do you see her?
She's falling asleep right now.
Like you're going to do theblood work.
You're something's obviouslywrong.
And so they did.
And I had two, both virusesthat cause mono, cytomegalovirus
(19:30):
and Epstein-Barr virus.
Yeah, and I also had strep.
And so they put me onamoxicillin because I wasn't I'm
not allergic to amoxicillin.
A few days later, I remembergoing downstairs with my um to
my mom and dad from my room andthat was like a chore because of
how tired I was.
(19:50):
I was effectively in bed forlike three weeks over this time
period.
I was so tired.
I remember lifting up my shirtand showing them my stomach and
saying, well, there's somethingon my stomach Because it was
pink spots Took me back to thedoctor.
Apparently, if you have monoand you take a penicillin-based
(20:12):
antibiotic, it'll give you likea rash or something.
And so they stopped me on theantibiotic.
They didn't give me another one.
That seems peculiar, very weird.
I didn't know that because Iwas like very out of it.
And then I asked my dadrelatively recently, and he goes
oh yeah, no, they didn't giveyou another antibiotic.
This particular pediatrician'soffice is affiliated with one of
(20:36):
the best hospital systems inthe country, genuinely
world-renowned and they didn'tlace my antibiotic with a
different antibiotic.
And so after that I got um, Istarted, uh, wetting the bed.
I refused to eat.
Mind you, I'd been pottytrained by the time I was, you
(21:00):
know, when I was about two.
So at 10, you know, you startwetting the bed.
I refused to eat, I forgot howto hold a pencil, I had a sudden
marked decline in math and then, in addition to the OCD anxiety
, insomnia wasn't really anissue at that point, because I
(21:20):
was so exhausted from the monothat I was sleeping probably
like 16 hours a day.
Speaker 1 (21:27):
Oh goodness, yeah, so you had OCD.
Just some of your symptoms.
You had OCD.
You were very tired, I meanextraordinarily tired, not just
very tired.
This happened.
The OCD came on suddenly andyou were refusing to eat.
(21:48):
Did you have any tics at thatpoint?
Because I know you did later inlife.
Speaker 3 (21:56):
I don't remember, but I remember, like when I was
younger and this is I I'm.
This is part of the reason whyI'm not entirely sure that this
was the hard start for pans,pandas or, you know, whether it
was just my first major flare.
I remember when I was youngeryou would all of a sudden I'd
(22:17):
get like a thing where you justkind of move very suddenly and I
would have those morefrequently during certain
periods and then I wouldn't havethem for longer periods, if
that makes sense.
I couldn't really say whetherthose were ticks, but it's like
an involuntary movement, asudden, involuntary movement.
Speaker 1 (22:40):
Yeah, Did.
Did you go back to the doctorwith those relatively new and
primarily psychiatric symptoms?
Speaker 3 (22:48):
No.
Speaker 1 (22:49):
Okay, so then what happened?
You're 10.
And what happened between 10and July 2022?
Speaker 3 (23:13):
July 2022.
Yeah, so a few weeks after I umgot over the acute sickness of
mono I had, I started gettingwhat I now know to be symptoms
of neuropathy.
So I remember waking up in themiddle of the night and it was
like most nights and likesomething would be completely
numb and I couldn't move it.
Speaker 1 (23:31):
Something like your foot, your arm.
Speaker 3 (23:34):
Usually my arms, and it wouldn't be like it.
There was in no way any core,any correlation with me like
sleeping on an arm and fallingasleep, any core, any
correlation with me likesleeping on an arm and falling
asleep.
Um, and I started to get what Inow know to be nerve pain all
down the backs of like, from mySI joint all down the backs of
(23:54):
my legs into my feet, and it wasextremely painful to sit with
my legs straight.
I remember my all of a sudden,my butt falling asleep from
sleep, from sitting watching TV.
My feet would randomly go numb,just those sorts of things.
And I was like, well, I guessthis happens sometimes, cause I
(24:16):
mentioned it to my mom and she'slike I guess that happens
sometimes and you don't reallyknow these, when you're not
familiar at all with nervoussystem disorders or like
autoimmune nervous systemdisorders, you don't know what
to look for, you don't know whatsymptoms are.
(24:36):
And so my entire family waslike, I don't know, I don't know
, you just kind of deal with it,cause that's the, that's the
way my family had been, you know, until something became so
inconvenient that you could notdeal with it anymore.
You just kind of you just kindof dealt with it.
(24:56):
Um yeah, so one thing that mymom did say was that after I'd
monounstrapped, my personalitychanged.
Speaker 1 (25:07):
And what did she mean by that?
Speaker 3 (25:09):
So I was more prone to bits of rage and I would just
like randomly start crying.
I would get very angry.
I couldn't control it at alland of course you know we never
saw a psychiatrist or atherapist about it.
It was just I don't know.
You're getting close to puberty.
Speaker 1 (25:28):
I guess this is hormones well because I mean
truthfully, each of those thingsthat you've mentioned in and of
themselves are within normal uh, behavior and and?
And normal responses mean yourfoot falling asleep.
That's normal, but for thelength of time and the frequency
(25:52):
that that was happening to you,it wasn't normal.
I also grew up in a family thatthought, oh, this will take
care of itself and okay, let'ssee what happens.
And so I understand what you'resaying about that, and it's
(26:12):
hard to step back and look ateverything that was going on
with you.
But you needed to step back inorder to see these.
What I'll refer to aspsychiatric or at least extreme
emotional responses were new,new for you.
And then the other morephysical symptoms that you
described also were very new foryou.
(26:34):
But it's hard to put that alltogether as one lives their
normal life.
So as time went on I mean youcertainly completed school, went
on to college, you were anathlete in college and then you
went on and you had a job thattook you to multiple places
(26:56):
across the country.
How was life then?
It was hard.
Speaker 3 (27:01):
I throughout high school and college, I felt like
I had to work five times as hardas anyone to get similar
results.
So, for example, in college,the training that I did did not
yield the same results for me asit did for my teammates.
(27:24):
You know, I know thateveryone's built differently and
stuff, but I was just exhaustedall the time.
I did have low ferritin and Ido have PCOS.
Speaker 1 (27:38):
What is PCOS for our listeners?
Speaker 3 (27:41):
Ovarian syndrome.
It's an auto-inflammatorycondition.
That's how my endocrinologistdescribed it to me.
It's an endocrine disorderwhere you have an imbalance of
your hormones um estrogen,testosterone, progesterone.
It impacts your reproductivehealth.
(28:03):
It's like a metabolic thing aswell.
Yes, I had those, but even afterfixing them, I just was
exhausted all the time and alsothe other symptoms of like
periodically not wanting to eat,the neuropathy, the insomnia,
(28:24):
anxiety, ocd, depression.
They didn't go away, in fact,after End of 2017, when I had
really bad bronchitis thatresulted in me turning blue
during a competition due to lackof oxygen.
After that, I had a pretty badbout of anxiety, depression,
(28:51):
didn't really want to eat,really want to eat.
And then, february of 2018, Ihad, I remember, at one point,
the left side I was exercisingand the left side of my body
went numb, and this was a coupleweeks after I had started
showing signs of, orexperiencing signs of, an
(29:13):
infection, probably like somesort of viral infection or
something.
I don't really know.
I remember I got this viralinfection symptoms that came on
a little bit after I had startedexperiencing intense, intense
muscle spasms, muscle cramps.
I had been experiencing likereally bad back spasms
(29:33):
periodically from the time I wasabout 14 and also SI joint pain
from about the same time.
But they would usually resolveand these did not resolve.
I remember I went to theathletic trainer and she was
working on my calf and she saidthis is the worst.
(29:54):
I've been a trainer for 20years.
This is the worst knot thatI've seen, and to the point
where they had me get an MRI tomake sure that it wasn't
something worse than like just areally intense muscle cramp.
So having those muscle spasmsin retrospect it follows the
(30:16):
pattern, a similar pattern towhat I experience now right,
which is you have intense musclespasms.
Now it's like intense.
It's also episodes of liketwitching or involuntary
movements, kicks, and then youshow signs of an infection.
The only real difference was atthe time the neuropathy started
(30:39):
the numb every night for a while.
Oh no, I'm like what if I don'twake up, because I remember my
breathing just being verylabored.
There was also the feeling ofbeing incredibly hungry and then
eating two bites of somethingand feeling incredibly full.
(30:59):
That also was something thatwas a new symptom at the time,
(31:20):
just the feeling of purediscomfort rather than just the
disgust at the thought of foodor sometimes complete apathy at
the thought of food.
It was like a physicalsensation, to the point where if
I ate too much, I would startfeeling like I was going to
throw up and too much was like afew bites of food.
And that continued for a whileand it got to the point where it
(31:46):
was so concerning, not becauseof the food thing, but because
of my foot.
My right foot started curlingin and I couldn't straighten it.
After a few days of that, mymom and dad were like okay, we
have to take you to a hospitaland we're going to make them do
tests on you because, like thisis scary.
Speaker 1 (32:06):
And how old were you at that point?
Uh, 21.
Speaker 3 (32:11):
So you're out of college?
No, no, no, I was.
Uh, I was in my junior year.
Okay, and so I went to thehospital and they did a bunch of
tests and they were like theylook fine.
They did some blood work.
They did an EEG because I hadsomething that might I had some
(32:33):
sort of episode that might havebeen a seizure, and then my EEG
was fine.
And then they, they did an MRIon my brain and that was my
first MRI on my brain and theywere like, yeah, that looks fine
.
They did some blood work and Iwent through when I first got
(32:54):
very, very sick in 2022 to tryto see if they missed something
in the blunt work, to see ifanything was flagged.
And there were like a couple oflittle things, but they those
are kind of like hard toextrapolate.
They were.
There was nothing glaring,because I was so desperately
trying to search for answers andall my tests were fine, so they
sent me home.
Speaker 1 (33:14):
So how did that make you feel so they?
Speaker 3 (33:19):
sent me home, so how did that make you feel?
Speaker 1 (33:27):
I well, I thought it was I was on medication for my
PCOS and I thought it was thatmedication.
So you were still trying tomake sense out of what could be
causing this whole array ofsymptoms.
Yeah, ebbing and flowing yeah.
Speaker 3 (33:37):
And then after several months I think it was
like finally June-ish of thatyear I started to feel kind of
okay.
Mm-hmm.
And I just I remember thenumbness took forever to go away
and I also had this intenseabdominal pain that I have no
(34:04):
idea what it is.
Speaker 1 (34:09):
That was new, though.
A new symptom.
Speaker 3 (34:12):
Yes, and I still get it when I'm flaring.
So I think it might be related.
But I also have ovarian cysts,so it could have been, but the
two types of pain are verydifferent.
This wasn't really an ovariancyst type of pain and I remember
(34:32):
I went to a doctor.
I went to my primary doctor andhe goes well, you strained your
abs and I was like I'm notworking out right now.
How am I, how, how do yousuppose I strain my abs?
He's like you know, doing coreand I was like I I haven't
really been working out becauseI've been, I've had so many of
these weird symptoms.
(34:52):
He goes, I don't know, and thatwas it.
Yeah.
Speaker 1 (34:59):
You proceeded with your life, graduated from
college and, as I said, you hadan interesting job that took you
around the country, and thenyou took this other job, in
which you were taken out on astretcher on two separate
(35:21):
occasions and that to me seemsto be the pivotal point when you
really started looking for whatin the world was going on more
intensely.
Am I correct about that?
Speaker 3 (35:43):
going on more intensely.
Am I correct about that?
Yes, but also after I graduatedfrom college, I had a
two-month-long migraine that gotso bad that I couldn't move my
neck and I ended up going to theER.
They did a spinal tap andeverything was fine.
So you know they let me go.
But I also had again numbnesson one side and then it shifted
to the other side of my bodyAlso all of those
(36:07):
neuropsychiatric symptoms, justgenerally feeling terrible, in
addition to the bottoms of myfeet.
That's when the bottoms of myfeet started feeling like I was
walking on, like they were madeof rocks.
It felt as if they weren'tsplaying.
Parts of my feet were notsplaying on the ground, and so
(36:30):
when that happens it feels as ifthey're made of stone and you
feel a little bit unsteady.
I didn't know it was happeningand I'd also started having
similar things like patches ofnumbness on my face and my legs.
I remember being concerned butnot really thinking too much of
it.
During this time I had multipleUTIs a couple where I was
(36:51):
actually peeing out blood andthen a couple of strep
infections as well.
The symptoms I'm able to recallat this point did line up with
some form of infection.
Typically strep.
Typically strep.
Yes, at this point it was stilltypically strep.
Speaker 1 (37:09):
When did you begin to get some answers for this array
of symptoms?
Speaker 3 (37:14):
That would be January 2023.
Yeah, so that was when I hadstarted seeing this neurologist
in December 2022.
She was in the, she was in thecity that I was in.
I had actually gotten areferral to see her in July of
2022 after an ER visit and yeah,so, um I it took a while to get
(37:36):
in to see her.
Oh, it took that.
It took that long.
Ah, okay, all right, it tookthat while to get in to see her.
Oh, it took that.
It took that long.
Ah, okay, all right, it tookthat long to get in to see a
neurologist.
Wow, okay, yeah, she is aperipheral neurologist, so she
doesn't really deal with thecentral nervous system.
She did a bunch of blood tests.
She was like, well, I think itcould be this, I think it could
(37:58):
be this.
She did a perineoplastic panel,which means what?
Speaker 1 (38:02):
Can you explain that to the listeners?
Speaker 3 (38:05):
Yes.
So it's this blood panel to seeif you have a perineoplastic
cancer that can result inautoimmune encephalitis, because
basically you have this cancer,your body starts attacking your
brain.
She thought maybe I had thatand it was negative, which is
good, but at the time I was alittle devastated because it
(38:27):
wasn't an answer.
So she did an EMG and the EMGhad she said, I remember her
telling me well, if anythingcomes back abnormal I'm going to
retest you.
And so I remember she retestedmy wrist, this one point on my
wrist.
It came back normal the secondtime and again I was a little
(38:50):
sad and she also didn't notethat thing in the EMG results.
But I guess that's within thenormal limits.
And then she after that cameback pretty normal.
She did a skin punch biopsy andshe asked me which before the
EMG.
She asked me which side feltworse, and at the time it was my
(39:11):
right side.
But part of me wonders if ithad been my left, would it have
yielded different results?
Because there is a mismatchsometimes in terms of dexterity
between my right and left.
But I digress.
Then she did the skin punchbiopsy and that came back very
low, normal, like teetering on,abnormal in terms of a test for
(39:33):
small nerve fiber density.
So it came back the way sheexplained it was.
This is abnormal for healthy 26year old female.
So, given your response toprednisone, I am going to try
you on a prednisone um, on IVprednisone and then, depending
(39:56):
how on how you respond to that,we might do, we might start you
on IVIG.
How you respond to that, wemight do, we might start you on
IVIG.
And at the time I was, I was Iwas simultaneously happy because
we finally had concreteevidence that I wasn't making up
all of my symptoms and I was alittle disappointed because at
(40:21):
this point I had started readingabout autoimmune encephalitis
and PANS, pandas, and I was sad,a little frustrated, because I
didn't have a positive antibodyLike my ANA was fine, which is
(40:41):
crazy because there are healthypeople with abnormal ANAs my ANA
was fine.
I was frustrated because Iwanted something to prove that I
was not fine, because I've beentold by doctors for 15 years at
(41:01):
this point that I was fine.
You can look at me and you cansee that I'm not fine.
My mom even noted that I wasgreen, like I was green Fall of
2022, I had green on my faceLike I had a greenish tint which
I only thought happened incartoons.
Speaker 1 (41:21):
And this was hardly funny.
Speaker 3 (41:22):
No, no, it was not very funny at all.
Um, but yeah, so she also.
But this doctor, she, she waspretty good, she actually tried.
I give her a ton of credit.
She tried and she foundsomething.
Part of me speculates thatmaybe she knew there was some
(41:45):
something like neuropsychiatrichappening in my central nervous
system or like autoimmunehappening in my nervous system,
rather, and that was part of thereason that she was so willing
to try IVIG.
But I don't know.
I've never had the conversationwith her.
I don't know.
Speaker 1 (42:01):
So how did you respond to the IVIG?
Speaker 3 (42:05):
So the IVIG getting there was that.
That was a journey, because Istill wanted an actual answer.
I wanted a concrete answer.
I was not really happy withwhat I had so far.
I was like there's got to be abetter explanation and so I saw
(42:26):
additional doctors.
The more doctors I saw, themore of them corroborated that
IVIG might actually be a goodidea, which is at this point.
It was crazy to me because Ihad gone relatively quickly from
being told you're fine, it'sall anxiety to yeah, you should
(42:47):
probably get IVIG by a lot ofthese doctors.
But I wanted to see what else Icould find out first.
So I saw a cardiologistactually the neurologist who did
the skin punch biopsy.
She referred me to thiscardiologist who did a poor
man's tilt table test.
He said well, you have POTS andhe's like you don't want to do
(43:10):
an actual tilt table testbecause that's going to make you
feel terrible.
So you meet the criteria forPOTS, you have POTS.
He started me on Minidrine,which I didn't love, but I ended
up discontinuing it once mysymptoms got more manageable and
that was fine.
Um, I ended up getting mytonsils taken out because I saw
(43:31):
an ENT.
And he goes oh, wow, yeah, I'mnot saying that you should have
your tonsils taken out, but I'msaying that, like you would
probably benefit from gettingyour tonsils taken out, because
they were cryptic, they had abunch of tonsil stones in them,
and so before getting my tonsilstaken out, to help with the
(43:51):
pain and inflammation in mytonsils, he gave me a course of
Augmentin as well, which I wasactually very thankful for.
I saw a doctor in New York whodid a blood test for Lyme
disease and he found Lymedisease and so he started me on
(44:12):
antibiotics for that.
And then I also saw anotherneurologist who was an expert in
autoimmune encephalitis.
She did a bunch of other tests.
I was like equivocal for acouple antibodies which I
thought was good, until she said, well, you know it's equivocal,
(44:33):
you know she's like it'sequivocal, it's not like
positive.
I was like yeah, but it's couldbe something maybe, and she was
like no, it's equivocal, it'snot like positive.
I was like yeah, but it's couldbe something maybe, and she was
like no, it's equivocal.
Um, interesting, and she alsodid say that she was open to the
diagnosis of pans pandas, butshe didn't know a lot about it.
(44:54):
She's located in New York also,um and she, but she wouldn't
feel comfortable administeringIVIG to me, if that makes sense,
because of the potential sideeffects.
And so at this point it's likelate summer 2023, and I've
(45:17):
started talking to you and yourecommended a doctor to
basically see for a potentialPANS-PANDAS diagnosis.
And I saw her and she wasreally good my first appointment
that fall.
I saw her and she goes well,you have autoimmune encephalitis
or you have PANS-PANDAS.
(45:37):
And then I saw her about amonth later and she goes that's
Pans Pantas.
Speaker 1 (45:44):
Because you showed up with a lot of ticks that day
and I don't know what else but.
Speaker 3 (45:56):
So I basically I hadn't slept the night before
was like in my twenties when Istarted developing like a
stutter, and that also coincideswith all of my other symptoms.
So I showed up, I wasstuttering, I was twitching, I
(46:19):
was, you know, my arm was doingthis thing where it like
straightens and stiffens out andI can't really move it.
She goes that's PANS PANDAS.
At this point we were alreadyin the process of getting IVIG.
That had started, I believe, inSeptember of 2023, of like
actually going through with theprocess of trying to get
(46:40):
insurance to approve it.
We finally did.
This doctor tried to get itapproved for pans pandas and she
couldn't with my insurance, andso I ended up getting it
approved for polyneuropathy withconnective tissue
manifestations, auto, like withan autoimmune etiology basically
(47:01):
, and that's what I, that's whatI believe the ICD-10 codes, um,
translate to, and so I got myfirst dose in December of 2023
and I remember after my thefirst, like the first day of my
(47:22):
first dose, I walked into thehotel that my dad and I were
staying at because it was a fewhours away from where we lived,
that I was getting the IVIG.
I felt the carpet under my feetfor the first time in years and
it was crazy.
All of my like, not all of mine.
It wasn't all at once, but likea lot of my nerves started
(47:43):
waking up and I remember Istopped having to go to the
bathroom with such urgency andfrequency.
Then, a few days after the endof that first dose, I woke up
with a terrible, terribleheadache in the middle of the
(48:03):
night, tried to take Advil forit and I threw up the Advil.
So then, a few hours later, orsix hours later, because I
didn't know how much of theAdvil I'd absorbed, I tried
taking Tylenol and I threw thatup.
(48:26):
I basically spent the day likethrowing up and in a lot of pain
, unable to move, crying.
My dad was home for, uh, theholidays, so he wasn't working.
My mom was out, she was at work, and then I um told my mom
comes home and she's like, okay,well, we'll give her, like
we'll try one more thing.
(48:46):
And I think she gave, I thinkshe also tried to give me
Tylenol.
And she comes into my room, thewith the Tylenol.
There's a bucket, you know,next to my bed.
So she gives me the Tylenol andlike 15 minutes later I throw
up and I'm like sweating and inso much pain and she goes okay.
(49:07):
Well, we're taking her to thehospital and so I go to the
hospital and this hospital it'slike a, you know, one of those
trauma centers.
So, like they know, you knowthey, um, I remember they, they
did do a CT scan.
I remember the CT scan, um tomake sure that there wasn't like
any trauma in my brain.
(49:27):
Um, they're like, it's fine.
Um, they gave me IV Zofran, ivToradol and um IV fluids,
because I was so dehydrated,because I couldn't keep down
anything like I I would take asip of water and then I'd throw,
I'd throw it up, and so theybasically just gave me a
(49:55):
prescription for Zofran and theywere like take, take, you know,
advil, take ibuprofen as needed, and you know, just just make
sure you're drinking water likeyou're, otherwise you're okay.
And so they sent me home.
Um, I suspect that that wasprobably aseptic meningitis, but
(50:16):
again, no formal diagnosis.
So then I talked to my doctor,who you know the one who
diagnosed me with PANS-PANDAS,and she suggested that I take a
combination Advil and Tylenol,you know, to deal with it.
And she goes every six hours asneeded.
My reactions to subsequentinfusions got better.
(50:39):
My parents and my friends andmy boyfriend they all over you
know the ensuing year they wouldat various times just
unprompted say, wow, you'redoing so much better, you're
like your old self.
That was validating.
(50:59):
And actually the doctor whoprescribed the IVIG for the
peripheral neuropathy, like forthe polyneuropathy, she said
during my follow-up appointmentwith her.
She said wow, like you're here,you're, you're mentally here.
She said before you werephysically here but you were not
mentally here and you seem somuch better.
(51:21):
And that's part of what makesme think.
Well, she probably thought thatthere was some sort of central
nervous system thing happening.
You know autoimmune thinghappening in my central nervous
system.
But she didn't.
That's not her jurisdiction.
So she was like trying.
Speaker 1 (51:39):
So I recall distinctly that your voice was
so much stronger after a certainpoint which was really
interesting.
We didn't Zoom, we talked onthe telephone and I remember a
(52:09):
little while.
And now you're involved.
You know you're part of aninternship that is very
rewarding to you.
How do you feel?
Speaker 3 (52:21):
I feel pretty good about it.
I am.
I still get exhausted because,like if I think, especially if
you've gone undiagnosed anduntreated for as long as I have,
I I'm not entirely convincedthat you can get a hundred
percent and I'm sure you know,know that there are cases where
(52:43):
you can.
For me, physically it'sexhausting.
I work multiple jobs throughoutthe school year because
healthcare is extremelyexpensive and that's where all
of my savings went.
But I'm pretty happy and, quitefrankly, I got my grades back
from my first semester and I waslike I did, pretty happy and,
quite frankly, I got my gradesback from my first semester and
(53:04):
I was like I did pretty well.
I was a little disappointedbecause I thought I could have
done a tiny bit better, but youknow, to put it in perspective,
there were times at that pointit was like a little over two
years prior that I could barelystring together three sentences
or three words to make asentence.
I think that that's a testamentto how far I've come.
(53:27):
I'm not entirely better, but Iam significantly improved.
My mom at first she was hopinglike, oh well, you can be on
IVIG for a little bit and thenyou can just kind of go live
your life.
That's kind of what I washoping as well.
Like, I would rather not get aninfusion once a month for the
(53:47):
rest of my life, but if itallows me to, if it allows me to
do what I want to do, to beyourself, yeah.
If it allows me to live andpursue a career that I want to
pursue, at one point any job wasso far-fetched for me the
ability to hold down literallyany job it seemed so impossible
(54:11):
that I would have been thrilledto have anything.
If it allows me to maintainsome semblance of independence,
then I'll do it, because theoption is IVIG or go back to the
way I was.
And I know that there are othertreatments out there, but given
my Bartonella, they're notreally an option for me because
they're immunosuppressive.
Speaker 1 (54:33):
Well, you're a trooper, Thank you what?
Maybe we'll end with any advicethat you would like to give to
other people, other young peoplein similar kinds of situations.
Speaker 3 (54:48):
Your intuition is probably correct.
If you don't think you'remaking up your symptoms, you're
not making up your symptoms.
And so, within your limits,within financial, physical,
whatever sort of limits you mayhave you should pursue answers.
You should never take I thinkit's just anxiety as a blanket
(55:12):
explanation, because that's notsomething.
Anxiety doesn't do that.
In my experience it canmanifest as physical symptoms,
but to the extent that it didwith me, it doesn't turn your
skin green.
It doesn't give you like rashesthat only respond to
antibiotics, it you know thatsort of thing.
(55:35):
It doesn't make your tonsilsswollen and full of swollen and
full of tonsil stones.
Like it.
It doesn't.
It doesn't do that sort ofthing.
It doesn't give you patches,like swollen patches on your
back, like it does.
It doesn't do that sort ofstuff.
Also, do your research.
There's a certain connotationwith do your research.
(55:55):
And I'm not saying thatconnotation, I'm saying like,
read your medical journals,reach out to people, reach out
to organizations, if you seesomething, if someone suggests a
diagnosis to you.
Because that's how it startedwith me.
This infectious disease doctorsaid yeah, I've heard of things
with strep that cause these likepost-infectious
neuropsychiatric things, and hewas unfortunately limited
(56:19):
because he was within a hospitalsystem that doesn't really
support pans, pandas, and also Ididn't have a positive strep
test.
So at that point, because I'dprobably because I'd been on so
many antibiotics for so longresearch at you.
(56:39):
You should, and you should seekothers who are knowledgeable in
whatever diagnosis you orsymptoms you have or you may
think you have.
Speaker 1 (56:53):
Yeah, great advice.
Thank you, great advice.
Thank you so much, jen, forsharing your story.
It's been a long journey we getsome sense of in just this
short podcast, and I admire yourperseverance and your tenacity
in knowing that something wasnot right and seeking treatment
(57:16):
for it.
Thank you, thank you very much,thank you.
Speaker 2 (57:20):
This concludes Episode 14 of Untangling Pandas
and Pants.
Thank you very much, Thank you.
This concludes Episode 14 ofUntangling Pandas and Pans.
Thank you for listening.
For more information aboutPandas and Pans and the Alex
Manful Fund, please visitthealexmanfulfundorg.
(57:42):
The content in this podcast isnot a substitute for
professional medical advice,diagnosis or treatment.
Always seek the advice of yourphysician or other qualified
healthcare provider with anyquestions you may have regarding
a medical condition.
Untangling Pandas and Pans is a podcast about two
little-known medical disorderscharacterized by the sudden and
dramatic onset of symptoms suchas obsessions and compulsions,
vocal or motor tics andrestricted eating behaviors, and
a whole host of other symptomsfollowing a strep or other
bacterial or viral infection.
(00:29):
I have the privilege ofinterviewing some of the top
researchers and clinicians inthis rapidly growing area, known
by various names such asimmune-mediated neuropsychiatric
disorders, infection-associatedneuroimmune disorders and
autoimmune encephalitis, orsimply pandas and pants.
My name is Dr Susan Manful.
(00:50):
I am a social psychologist, theexecutive director of the Alex
Manful Fund and the mother ofAlex Manful, who died at 26
years old due to pandas, adisorder my husband and I knew
next to nothing about, certainlynot that our daughter could die
from it.
Speaker 2 (01:19):
This is episode 14 of Untangling Pandas and Pans,
recorded May 31st 2025.
Speaker 1 (01:27):
Welcome to Untangling Pandas and Pans, a monthly
podcast in which we talk aboutinfection-associated
immune-mediated neuropsychiatricdisorders.
Today, my guest is Jen, a20-something-year-old woman
diagnosed with pandas andANS.
As a young adult, in college,she was a star athlete.
Just a few years later, though,her health prevented her from
(01:51):
continuing to work at her job.
She tells a story of how shefinally came to get a diagnosis
and effective treatment that hasenabled her to feel like
herself again, attend graduateschool and pursue a career she
has long wanted to follow.
She is an inspiration, to saythe least.
I've been very fortunate to talkwith Jen on a semi-regular
(02:12):
basis since the summer of 2023.
Yours, jen, is a verycomplicated story and I wasn't
sure, as I mentioned in ourearlier conversation, just where
to begin, so I decided to startat what I feel is one of the
(02:35):
most important, pivotal pointsin your story, which was when
you were taken out of your placeof employment on a stretcher.
Out of your place of employmenton a stretcher in well, I guess
that happened twice, in July2022 and January 2023.
So, if it's okay with you, Ithink we'll start there and
(02:57):
maybe you could tell thelisteners a little bit about
those two episodes, and thenlet's start a lot earlier in
your life and I think when youwere around 10 years old.
So can you tell us about those,those exits from your place of
employment?
Speaker 3 (03:20):
So the first one was a couple of days after the 4th
of July and I had been feelingkind of weird for a while at
that point, and more likeacutely weird for a while at
that point, and I had beenbrushing it off and brushing it
(03:43):
off and then all of a sudden Istarted having this thing.
That was kind of like a panicattack and it felt as if I was
going to pass out and throw upat the same time.
And so I went into my boss'soffice no-transcript, are you
(04:27):
okay?
And it was like her first orsecond day, you know.
I very quickly explained to herthe situation and, you know,
after a few minutes of it notgetting better, I remember they
lowered me down onto the floorand they were like okay, well,
maybe if you sit down onto thelike on the floor it'll be okay.
(04:47):
And I was like, okay, I hope so.
And then I felt my eyes startrolling back in my head and I
was having a hard time keepingthem open.
I felt extremely nauseous, Ithought that I was going to
throw up and I then I startedshaking uncontrollably,
(05:07):
trembling.
So they called the paramedicsand they had, you know, they
they lifted me onto a gurney,they strapped me in and they
brought me out of the buildingon a stretcher and then they
took me to a hospital, like somehospital nearby, and, um, at
(05:33):
the hospital they were like Idon't know.
They did a chest x-ray, whichwas kind of weird, and then they
didn't have any clear picturesto what they were going to do
with me.
So I was just there in my workclothes Okay, what next?
And then they saw the rash onmy chest and they were, and the
(05:54):
one doctor was like oh, we'regoing to test you for Lyme
disease.
So they drew blood and theyleft the vial of blood in the
exam room that I was in and theynever tested it.
Ah, interesting.
Yeah, yeah, they just gave me.
They told me that they weregoing to give me a two week dose
(06:14):
of doxycycline and then theygave me a 10 day course of
doxycycline and then they werelike, okay, you can go home.
And I was like what?
And I was still very dizzy,very disoriented, and you know,
one of my co-workers took mehome.
That was like the beginning ofthe end.
Speaker 1 (06:32):
Well, that must have been so frightening.
Speaker 3 (06:35):
Yeah, I had no idea what was happening.
I was living far away from myfamily, like I was still fairly
new to you know the city that Iwas in, and so I didn't really
have too many people who I wasclose enough with to help me out
.
And one of my friends was likethree hours away and she drove
(06:56):
up the next day to kind of trytaking care of me, and then it
became evident that I was likenot in good condition at all,
and then she drove me back up toher family's house and then my
mom picked me up and I spent afew days at home with my family.
Speaker 1 (07:17):
Yeah, and then you felt better and returned to work
.
Speaker 3 (07:20):
I told myself I did because I didn't want to be.
I don't want to be sick, no onewants to be sick.
And then I just, you know, Ikept on getting worse and worse
and worse.
I would try to go to work and Iwould feel like extremely weak,
extremely shaky.
My heart rate was all over the.
I ended up in the ER again, Iguess a week after and when one
(07:49):
side of my body went numb andthe ER didn't really do much for
me.
I effectively just sat thereshaking for 14 hoursikes until
my parents picked me up.
That was basically it.
Speaker 1 (08:10):
I did you get a diagnosis for for that trip?
Speaker 3 (08:14):
no, no they said that they did a ct scan.
I have no recollection of thect scan.
I I don't't a hundred percentknow about what happened there.
Speaker 1 (08:27):
Okay, so fast forward about six months or so.
What happened then?
Speaker 3 (08:35):
So I had had an allergic reaction to this
breakfast sandwich that I'deaten for months without really
much issue.
And, um, yeah, I I started toget hives and stuff and I
started having a hard timebreathing.
And so they called in theparamedics and they again
(08:56):
wheeled me out on a gurney fromthe building, um into a, um, you
know, brought me over to thesame hospital and they, you know
, gave me some IV Benadryl, ivsteroids, um, iv Pepsid.
Then they observed me for likethree, four hours however long
(09:18):
they're supposed to observe youafter the event and then I went
home and then Were you better.
Speaker 1 (09:29):
At that point.
Your symptoms had remitted.
Speaker 3 (09:33):
Not really.
No, I was just kind of tryingto push through it and I was
trying to, you know, not lookbad and I was doing a really bad
job of that.
And which is, you know, it'shard when you're very early in
(09:55):
your career and you have all ofthese mysterious symptoms that
are very legitimate and veryreal and they're not being taken
seriously by anyone.
They're not being takenseriously by anyone and they're
not being taken seriously by anymember of the medical community
that you're seeing.
Then you have no one to vouchfor you and say to your place of
(10:15):
employment and say, like she'snot faking, she's actually
incredibly ill.
But yeah, so actually laterthat day I, after going home
from the hospital, I had a pieceof dark chocolate and almonds
and then I noticed, over thecourse of about two minutes, my
heart rate went from 80 to 135.
(10:38):
And my mouth got incrediblyitchy.
And my mouth got incrediblyitchy, I started having a hard
time breathing.
So I called my dad, because Iwould call someone anytime.
I felt like I was having anallergic reaction and over the
past few months I had startedhaving these feelings and I like
these things where I didn't, Iwasn't entirely sure if they
(11:00):
were allergic reactions or not.
This was definitely one.
And then I called my dad and hewas like, well, you're talking
to me.
I was like, yeah, I'm talkingto you, but, like my, my throat
is getting increasingly tighter.
And he was like, well, do youhave your EpiPen?
Because I had had my.
I had had an EpiPen for a while, just from a previous thing.
(11:23):
I went down to the lobby of myapartment and I asked the woman
at the front desk.
I explained what was happeningand I said if I need to use the
EpiPen, I need you to call 911.
My voice was gettingincreasingly faint because of
the air.
Like the air was less and lessair was getting through.
(11:44):
And then, um, my vision startedgoing black and then this guy
was walking in from work.
At this point I was like soweak that I couldn't open the
EpiPen, which is I think that'sa design flaw, I think that's a
design flaw in the EpiPens,because that if you have someone
(12:06):
who's like too weak to usetheir own EpiPen, like what's
the point?
But he opened the EpiPen, but hehad.
He had me stab it.
That was my second ambulanceride that day and yeah to the
hospital.
Speaker 1 (12:23):
Same hospital.
Speaker 3 (12:25):
A different hospital.
Speaker 1 (12:26):
Different Okay.
Speaker 3 (12:27):
Yeah, I stayed overnight and I got um.
I had one doctor tell me oh,you didn't actually have an
allergic reaction and I was likepretty sure I did Um.
But then they took my triptaste like 12 hours after the
fact and they were like see,your triptase is normal and I'm
like your triptase for an acuteallergic reaction, from what I
(12:50):
know, isn't like you have acertain window of time and you
took it outside of the window oftime that you're supposed to
take it.
So of course my triptase isgoing to be normal.
That was fun.
Speaker 1 (13:05):
You were already becoming very knowledgeable
about medicine and the practiceof medicine.
Speaker 3 (13:12):
It was entirely out of necessity, because when you
have as many unexplainedsymptoms as I did, you have to
read medical journals, becauseyou have to know which questions
to ask which doctors, and thenyou have to know which doctors
to go to to advocate foryourself, because my primary
(13:33):
doctor told me I had anxiety andshingles.
Speaker 1 (13:39):
And shingles.
Yes, okay.
Speaker 3 (13:43):
And so I.
That didn't sound right.
He told me the rash wasshingles and you know, maybe
some people have shingles.
I didn't have shingles becausethe rash responds.
The rash responded toantibiotics.
Speaker 1 (14:02):
You're a little young for shingles too, aren't you?
Speaker 3 (14:04):
A little bit, a little bit.
Speaker 1 (14:07):
So with that, was it at that point that you resigned
from your place of employment totry and figure out what was
going on with you medically?
Speaker 3 (14:17):
Yes, that was already going to be my last week, oh,
okay, it was not something thatI wanted to do, but in the end
it ended up being, I think,wholly necessary.
Speaker 1 (14:30):
So, as listeners already know, you're doing
really well now and doing a lotof the things that you've wanted
to do for a couple of years,but let's back up from that
point in time in January 2023.
Let's go back to when you were10 years old, because in our
(14:54):
conversations, as I understandit, that's another turning point
, and if you could kind of walkus through that point up until
January 2022.
And I think that would be great, starting with the, the mono
and the strap that you had at 10.
Or even before that was, werethere any other remarkable
(15:18):
illnesses that you had hadbefore that?
Speaker 3 (15:21):
Yeah, when I was a baby, my eardrums burst twice
each because of chronic earinfections.
Yeah, I was constantly onantibiotics.
I remember one time I was likethree or four and I saw the
antibiotics.
You know the flavored stuffthat they give kids tastes kind
of like candy.
I asked my mom when do I get tohave that again?
(15:45):
And she goes.
She looks at, she looks at thething, she looks at me and she
goes.
Three weeks, that's howregularly I was getting
bacterial infections.
Wow, primarily strep, I believeat that point because I wasn't
getting ear infections anymorebecause I had gotten tubes put
in my ears a couple of yearsprior.
Speaker 1 (16:09):
And then there was a lot of strep throat.
Speaker 3 (16:12):
Yes, All throughout I was always on antibiotics for
strep and then it got to thepoint when I was a little bit
older middle school, high schoolwhen I would get sore throats.
That would persist until I tookantibiotics.
The funny thing was theyweren't always positive for
(16:32):
strep and so I would just sufferwith these really bad sore
throats and then eventually Iwould either have like a
sympathetic doctor who's likeokay, well, you've had a sore
throat for like three months atthis point, Like I should
probably give you someantibiotics to see if it helps,
and lo and behold, every time ithelped, Wow.
(16:53):
Or occasionally it wouldprobably about 50% of the time
it would be positive for strep.
Speaker 1 (17:01):
Okay, so you knew strep well, and when?
When you turned 10, you hadstrep as well as mono.
Is that correct?
Speaker 3 (17:11):
Yeah, it was a little bit before I turned 11.
Um, and so I had mono and strepand I remember, leading up to
it, I started having severeinsomnia.
When I started feeling funnyyou know when you're like
starting to get sick and you'relike I don't really know what's
happening I started to getinsomnia, like very bad insomnia
(17:35):
, especially for a 10 year old.
I wouldn't fall asleep untilafter 11 PM and I would wake up
on my own around 5 am and Iwouldn't be able to go back to
sleep.
I had to check the doors thatthey were locked every night and
it was like obsessively and Icouldn't get myself to stop that
(18:01):
was new new behavior that wasincredibly new.
It was that I had never donethat before.
Um, and then I started to getreally, really anxious.
I would see like headlines thatare scary for an 11 year old
and like, oh no, what if thathappens to my?
Or for a 10 year old rather.
And I'd be like, oh no, what ifthat happens to my family?
(18:21):
And then I started gettingreally tired and I remember
three of my soccer teammates gotmono and you know, like you're
all sharing water bottles, youdrink out of the wrong person's
water bottle.
One time you get mono.
I also got strep.
I went to the doctor.
(18:43):
I remember I was like living oncough drops and my mom, finally,
after I guess like a week or afew days, I don't really know
she was like okay, something'swrong with her.
She took me to the doctor.
The doctor said well, you know,it's really only mono like 25%
(19:05):
of the time, so like we don'treally have to do the blood work
.
And my mom got mad at him.
She's like you're, you're doingthe blood work for my kid.
Do you see her?
She's falling asleep right now.
Like you're going to do theblood work.
You're something's obviouslywrong.
And so they did.
And I had two, both virusesthat cause mono, cytomegalovirus
(19:30):
and Epstein-Barr virus.
Yeah, and I also had strep.
And so they put me onamoxicillin because I wasn't I'm
not allergic to amoxicillin.
A few days later, I remembergoing downstairs with my um to
my mom and dad from my room andthat was like a chore because of
how tired I was.
(19:50):
I was effectively in bed forlike three weeks over this time
period.
I was so tired.
I remember lifting up my shirtand showing them my stomach and
saying, well, there's somethingon my stomach Because it was
pink spots Took me back to thedoctor.
Apparently, if you have monoand you take a penicillin-based
(20:12):
antibiotic, it'll give you likea rash or something.
And so they stopped me on theantibiotic.
They didn't give me another one.
That seems peculiar, very weird.
I didn't know that because Iwas like very out of it.
And then I asked my dadrelatively recently, and he goes
oh yeah, no, they didn't giveyou another antibiotic.
This particular pediatrician'soffice is affiliated with one of
(20:36):
the best hospital systems inthe country, genuinely
world-renowned and they didn'tlace my antibiotic with a
different antibiotic.
And so after that I got um, Istarted, uh, wetting the bed.
I refused to eat.
Mind you, I'd been pottytrained by the time I was, you
(21:00):
know, when I was about two.
So at 10, you know, you startwetting the bed.
I refused to eat, I forgot howto hold a pencil, I had a sudden
marked decline in math and then, in addition to the OCD anxiety
, insomnia wasn't really anissue at that point, because I
(21:20):
was so exhausted from the monothat I was sleeping probably
like 16 hours a day.
Speaker 1 (21:27):
Oh goodness, yeah, so you had OCD.
Just some of your symptoms.
You had OCD.
You were very tired, I meanextraordinarily tired, not just
very tired.
This happened.
The OCD came on suddenly andyou were refusing to eat.
(21:48):
Did you have any tics at thatpoint?
Because I know you did later inlife.
Speaker 3 (21:56):
I don't remember, but I remember, like when I was
younger and this is I I'm.
This is part of the reason whyI'm not entirely sure that this
was the hard start for pans,pandas or, you know, whether it
was just my first major flare.
I remember when I was youngeryou would all of a sudden I'd
(22:17):
get like a thing where you justkind of move very suddenly and I
would have those morefrequently during certain
periods and then I wouldn't havethem for longer periods, if
that makes sense.
I couldn't really say whetherthose were ticks, but it's like
an involuntary movement, asudden, involuntary movement.
Speaker 1 (22:40):
Yeah, Did.
Did you go back to the doctorwith those relatively new and
primarily psychiatric symptoms?
Speaker 3 (22:48):
No.
Speaker 1 (22:49):
Okay, so then what happened?
You're 10.
And what happened between 10and July 2022?
Speaker 3 (23:13):
July 2022.
Yeah, so a few weeks after I umgot over the acute sickness of
mono I had, I started gettingwhat I now know to be symptoms
of neuropathy.
So I remember waking up in themiddle of the night and it was
like most nights and likesomething would be completely
numb and I couldn't move it.
Speaker 1 (23:31):
Something like your foot, your arm.
Speaker 3 (23:34):
Usually my arms, and it wouldn't be like it.
There was in no way any core,any correlation with me like
sleeping on an arm and fallingasleep, any core, any
correlation with me likesleeping on an arm and falling
asleep.
Um, and I started to get what Inow know to be nerve pain all
down the backs of like, from mySI joint all down the backs of
(23:54):
my legs into my feet, and it wasextremely painful to sit with
my legs straight.
I remember my all of a sudden,my butt falling asleep from
sleep, from sitting watching TV.
My feet would randomly go numb,just those sorts of things.
And I was like, well, I guessthis happens sometimes, cause I
(24:16):
mentioned it to my mom and she'slike I guess that happens
sometimes and you don't reallyknow these, when you're not
familiar at all with nervoussystem disorders or like
autoimmune nervous systemdisorders, you don't know what
to look for, you don't know whatsymptoms are.
(24:36):
And so my entire family waslike, I don't know, I don't know
, you just kind of deal with it,cause that's the, that's the
way my family had been, you know, until something became so
inconvenient that you could notdeal with it anymore.
You just kind of you just kindof dealt with it.
(24:56):
Um yeah, so one thing that mymom did say was that after I'd
monounstrapped, my personalitychanged.
Speaker 1 (25:07):
And what did she mean by that?
Speaker 3 (25:09):
So I was more prone to bits of rage and I would just
like randomly start crying.
I would get very angry.
I couldn't control it at alland of course you know we never
saw a psychiatrist or atherapist about it.
It was just I don't know.
You're getting close to puberty.
Speaker 1 (25:28):
I guess this is hormones well because I mean
truthfully, each of those thingsthat you've mentioned in and of
themselves are within normal uh, behavior and and?
And normal responses mean yourfoot falling asleep.
That's normal, but for thelength of time and the frequency
(25:52):
that that was happening to you,it wasn't normal.
I also grew up in a family thatthought, oh, this will take
care of itself and okay, let'ssee what happens.
And so I understand what you'resaying about that, and it's
(26:12):
hard to step back and look ateverything that was going on
with you.
But you needed to step back inorder to see these.
What I'll refer to aspsychiatric or at least extreme
emotional responses were new,new for you.
And then the other morephysical symptoms that you
described also were very new foryou.
(26:34):
But it's hard to put that alltogether as one lives their
normal life.
So as time went on I mean youcertainly completed school, went
on to college, you were anathlete in college and then you
went on and you had a job thattook you to multiple places
(26:56):
across the country.
How was life then?
It was hard.
Speaker 3 (27:01):
I throughout high school and college, I felt like
I had to work five times as hardas anyone to get similar
results.
So, for example, in college,the training that I did did not
yield the same results for me asit did for my teammates.
(27:24):
You know, I know thateveryone's built differently and
stuff, but I was just exhaustedall the time.
I did have low ferritin and Ido have PCOS.
Speaker 1 (27:38):
What is PCOS for our listeners?
Speaker 3 (27:41):
Ovarian syndrome.
It's an auto-inflammatorycondition.
That's how my endocrinologistdescribed it to me.
It's an endocrine disorderwhere you have an imbalance of
your hormones um estrogen,testosterone, progesterone.
It impacts your reproductivehealth.
(28:03):
It's like a metabolic thing aswell.
Yes, I had those, but even afterfixing them, I just was
exhausted all the time and alsothe other symptoms of like
periodically not wanting to eat,the neuropathy, the insomnia,
(28:24):
anxiety, ocd, depression.
They didn't go away, in fact,after End of 2017, when I had
really bad bronchitis thatresulted in me turning blue
during a competition due to lackof oxygen.
After that, I had a pretty badbout of anxiety, depression,
(28:51):
didn't really want to eat,really want to eat.
And then, february of 2018, Ihad, I remember, at one point,
the left side I was exercisingand the left side of my body
went numb, and this was a coupleweeks after I had started
showing signs of, orexperiencing signs of, an
(29:13):
infection, probably like somesort of viral infection or
something.
I don't really know.
I remember I got this viralinfection symptoms that came on
a little bit after I had startedexperiencing intense, intense
muscle spasms, muscle cramps.
I had been experiencing likereally bad back spasms
(29:33):
periodically from the time I wasabout 14 and also SI joint pain
from about the same time.
But they would usually resolveand these did not resolve.
I remember I went to theathletic trainer and she was
working on my calf and she saidthis is the worst.
(29:54):
I've been a trainer for 20years.
This is the worst knot thatI've seen, and to the point
where they had me get an MRI tomake sure that it wasn't
something worse than like just areally intense muscle cramp.
So having those muscle spasmsin retrospect it follows the
(30:16):
pattern, a similar pattern towhat I experience now right,
which is you have intense musclespasms.
Now it's like intense.
It's also episodes of liketwitching or involuntary
movements, kicks, and then youshow signs of an infection.
The only real difference was atthe time the neuropathy started
(30:39):
the numb every night for a while.
Oh no, I'm like what if I don'twake up, because I remember my
breathing just being verylabored.
There was also the feeling ofbeing incredibly hungry and then
eating two bites of somethingand feeling incredibly full.
(30:59):
That also was something thatwas a new symptom at the time,
(31:20):
just the feeling of purediscomfort rather than just the
disgust at the thought of foodor sometimes complete apathy at
the thought of food.
It was like a physicalsensation, to the point where if
I ate too much, I would startfeeling like I was going to
throw up and too much was like afew bites of food.
And that continued for a whileand it got to the point where it
(31:46):
was so concerning, not becauseof the food thing, but because
of my foot.
My right foot started curlingin and I couldn't straighten it.
After a few days of that, mymom and dad were like okay, we
have to take you to a hospitaland we're going to make them do
tests on you because, like thisis scary.
Speaker 1 (32:06):
And how old were you at that point?
Uh, 21.
Speaker 3 (32:11):
So you're out of college?
No, no, no, I was.
Uh, I was in my junior year.
Okay, and so I went to thehospital and they did a bunch of
tests and they were like theylook fine.
They did some blood work.
They did an EEG because I hadsomething that might I had some
(32:33):
sort of episode that might havebeen a seizure, and then my EEG
was fine.
And then they, they did an MRIon my brain and that was my
first MRI on my brain and theywere like, yeah, that looks fine
.
They did some blood work and Iwent through when I first got
(32:54):
very, very sick in 2022 to tryto see if they missed something
in the blunt work, to see ifanything was flagged.
And there were like a couple oflittle things, but they those
are kind of like hard toextrapolate.
They were.
There was nothing glaring,because I was so desperately
trying to search for answers andall my tests were fine, so they
sent me home.
Speaker 1 (33:14):
So how did that make you feel so they?
Speaker 3 (33:19):
sent me home, so how did that make you feel?
Speaker 1 (33:27):
I well, I thought it was I was on medication for my
PCOS and I thought it was thatmedication.
So you were still trying tomake sense out of what could be
causing this whole array ofsymptoms.
Yeah, ebbing and flowing yeah.
Speaker 3 (33:37):
And then after several months I think it was
like finally June-ish of thatyear I started to feel kind of
okay.
Mm-hmm.
And I just I remember thenumbness took forever to go away
and I also had this intenseabdominal pain that I have no
(34:04):
idea what it is.
Speaker 1 (34:09):
That was new, though.
A new symptom.
Speaker 3 (34:12):
Yes, and I still get it when I'm flaring.
So I think it might be related.
But I also have ovarian cysts,so it could have been, but the
two types of pain are verydifferent.
This wasn't really an ovariancyst type of pain and I remember
(34:32):
I went to a doctor.
I went to my primary doctor andhe goes well, you strained your
abs and I was like I'm notworking out right now.
How am I, how, how do yousuppose I strain my abs?
He's like you know, doing coreand I was like I I haven't
really been working out becauseI've been, I've had so many of
these weird symptoms.
(34:52):
He goes, I don't know, and thatwas it.
Yeah.
Speaker 1 (34:59):
You proceeded with your life, graduated from
college and, as I said, you hadan interesting job that took you
around the country, and thenyou took this other job, in
which you were taken out on astretcher on two separate
(35:21):
occasions and that to me seemsto be the pivotal point when you
really started looking for whatin the world was going on more
intensely.
Am I correct about that?
Speaker 3 (35:43):
going on more intensely.
Am I correct about that?
Yes, but also after I graduatedfrom college, I had a
two-month-long migraine that gotso bad that I couldn't move my
neck and I ended up going to theER.
They did a spinal tap andeverything was fine.
So you know they let me go.
But I also had again numbnesson one side and then it shifted
to the other side of my bodyAlso all of those
(36:07):
neuropsychiatric symptoms, justgenerally feeling terrible, in
addition to the bottoms of myfeet.
That's when the bottoms of myfeet started feeling like I was
walking on, like they were madeof rocks.
It felt as if they weren'tsplaying.
Parts of my feet were notsplaying on the ground, and so
(36:30):
when that happens it feels as ifthey're made of stone and you
feel a little bit unsteady.
I didn't know it was happeningand I'd also started having
similar things like patches ofnumbness on my face and my legs.
I remember being concerned butnot really thinking too much of
it.
During this time I had multipleUTIs a couple where I was
(36:51):
actually peeing out blood andthen a couple of strep
infections as well.
The symptoms I'm able to recallat this point did line up with
some form of infection.
Typically strep.
Typically strep.
Yes, at this point it was stilltypically strep.
Speaker 1 (37:09):
When did you begin to get some answers for this array
of symptoms?
Speaker 3 (37:14):
That would be January 2023.
Yeah, so that was when I hadstarted seeing this neurologist
in December 2022.
She was in the, she was in thecity that I was in.
I had actually gotten areferral to see her in July of
2022 after an ER visit and yeah,so, um I it took a while to get
(37:36):
in to see her.
Oh, it took that.
It took that long.
Ah, okay, all right, it tookthat while to get in to see her.
Oh, it took that.
It took that long.
Ah, okay, all right, it tookthat long to get in to see a
neurologist.
Wow, okay, yeah, she is aperipheral neurologist, so she
doesn't really deal with thecentral nervous system.
She did a bunch of blood tests.
She was like, well, I think itcould be this, I think it could
(37:58):
be this.
She did a perineoplastic panel,which means what?
Speaker 1 (38:02):
Can you explain that to the listeners?
Speaker 3 (38:05):
Yes.
So it's this blood panel to seeif you have a perineoplastic
cancer that can result inautoimmune encephalitis, because
basically you have this cancer,your body starts attacking your
brain.
She thought maybe I had thatand it was negative, which is
good, but at the time I was alittle devastated because it
(38:27):
wasn't an answer.
So she did an EMG and the EMGhad she said, I remember her
telling me well, if anythingcomes back abnormal I'm going to
retest you.
And so I remember she retestedmy wrist, this one point on my
wrist.
It came back normal the secondtime and again I was a little
(38:50):
sad and she also didn't notethat thing in the EMG results.
But I guess that's within thenormal limits.
And then she after that cameback pretty normal.
She did a skin punch biopsy andshe asked me which before the
EMG.
She asked me which side feltworse, and at the time it was my
(39:11):
right side.
But part of me wonders if ithad been my left, would it have
yielded different results?
Because there is a mismatchsometimes in terms of dexterity
between my right and left.
But I digress.
Then she did the skin punchbiopsy and that came back very
low, normal, like teetering on,abnormal in terms of a test for
(39:33):
small nerve fiber density.
So it came back the way sheexplained it was.
This is abnormal for healthy 26year old female.
So, given your response toprednisone, I am going to try
you on a prednisone um, on IVprednisone and then, depending
(39:56):
how on how you respond to that,we might do, we might start you
on IVIG.
How you respond to that, wemight do, we might start you on
IVIG.
And at the time I was, I was Iwas simultaneously happy because
we finally had concreteevidence that I wasn't making up
all of my symptoms and I was alittle disappointed because at
(40:21):
this point I had started readingabout autoimmune encephalitis
and PANS, pandas, and I was sad,a little frustrated, because I
didn't have a positive antibodyLike my ANA was fine, which is
(40:41):
crazy because there are healthypeople with abnormal ANAs my ANA
was fine.
I was frustrated because Iwanted something to prove that I
was not fine, because I've beentold by doctors for 15 years at
(41:01):
this point that I was fine.
You can look at me and you cansee that I'm not fine.
My mom even noted that I wasgreen, like I was green Fall of
2022, I had green on my faceLike I had a greenish tint which
I only thought happened incartoons.
Speaker 1 (41:21):
And this was hardly funny.
Speaker 3 (41:22):
No, no, it was not very funny at all.
Um, but yeah, so she also.
But this doctor, she, she waspretty good, she actually tried.
I give her a ton of credit.
She tried and she foundsomething.
Part of me speculates thatmaybe she knew there was some
(41:45):
something like neuropsychiatrichappening in my central nervous
system or like autoimmunehappening in my nervous system,
rather, and that was part of thereason that she was so willing
to try IVIG.
But I don't know.
I've never had the conversationwith her.
I don't know.
Speaker 1 (42:01):
So how did you respond to the IVIG?
Speaker 3 (42:05):
So the IVIG getting there was that.
That was a journey, because Istill wanted an actual answer.
I wanted a concrete answer.
I was not really happy withwhat I had so far.
I was like there's got to be abetter explanation and so I saw
(42:26):
additional doctors.
The more doctors I saw, themore of them corroborated that
IVIG might actually be a goodidea, which is at this point.
It was crazy to me because Ihad gone relatively quickly from
being told you're fine, it'sall anxiety to yeah, you should
(42:47):
probably get IVIG by a lot ofthese doctors.
But I wanted to see what else Icould find out first.
So I saw a cardiologistactually the neurologist who did
the skin punch biopsy.
She referred me to thiscardiologist who did a poor
man's tilt table test.
He said well, you have POTS andhe's like you don't want to do
(43:10):
an actual tilt table testbecause that's going to make you
feel terrible.
So you meet the criteria forPOTS, you have POTS.
He started me on Minidrine,which I didn't love, but I ended
up discontinuing it once mysymptoms got more manageable and
that was fine.
Um, I ended up getting mytonsils taken out because I saw
(43:31):
an ENT.
And he goes oh, wow, yeah, I'mnot saying that you should have
your tonsils taken out, but I'msaying that, like you would
probably benefit from gettingyour tonsils taken out, because
they were cryptic, they had abunch of tonsil stones in them,
and so before getting my tonsilstaken out, to help with the
(43:51):
pain and inflammation in mytonsils, he gave me a course of
Augmentin as well, which I wasactually very thankful for.
I saw a doctor in New York whodid a blood test for Lyme
disease and he found Lymedisease and so he started me on
(44:12):
antibiotics for that.
And then I also saw anotherneurologist who was an expert in
autoimmune encephalitis.
She did a bunch of other tests.
I was like equivocal for acouple antibodies which I
thought was good, until she said, well, you know it's equivocal,
(44:33):
you know she's like it'sequivocal, it's not like
positive.
I was like yeah, but it's couldbe something maybe, and she was
like no, it's equivocal, it'snot like positive.
I was like yeah, but it's couldbe something maybe, and she was
like no, it's equivocal.
Um, interesting, and she alsodid say that she was open to the
diagnosis of pans pandas, butshe didn't know a lot about it.
(44:54):
She's located in New York also,um and she, but she wouldn't
feel comfortable administeringIVIG to me, if that makes sense,
because of the potential sideeffects.
And so at this point it's likelate summer 2023, and I've
(45:17):
started talking to you and yourecommended a doctor to
basically see for a potentialPANS-PANDAS diagnosis.
And I saw her and she wasreally good my first appointment
that fall.
I saw her and she goes well,you have autoimmune encephalitis
or you have PANS-PANDAS.
(45:37):
And then I saw her about amonth later and she goes that's
Pans Pantas.
Speaker 1 (45:44):
Because you showed up with a lot of ticks that day
and I don't know what else but.
Speaker 3 (45:56):
So I basically I hadn't slept the night before
was like in my twenties when Istarted developing like a
stutter, and that also coincideswith all of my other symptoms.
So I showed up, I wasstuttering, I was twitching, I
(46:19):
was, you know, my arm was doingthis thing where it like
straightens and stiffens out andI can't really move it.
She goes that's PANS PANDAS.
At this point we were alreadyin the process of getting IVIG.
That had started, I believe, inSeptember of 2023, of like
actually going through with theprocess of trying to get
(46:40):
insurance to approve it.
We finally did.
This doctor tried to get itapproved for pans pandas and she
couldn't with my insurance, andso I ended up getting it
approved for polyneuropathy withconnective tissue
manifestations, auto, like withan autoimmune etiology basically
(47:01):
, and that's what I, that's whatI believe the ICD-10 codes, um,
translate to, and so I got myfirst dose in December of 2023
and I remember after my thefirst, like the first day of my
(47:22):
first dose, I walked into thehotel that my dad and I were
staying at because it was a fewhours away from where we lived,
that I was getting the IVIG.
I felt the carpet under my feetfor the first time in years and
it was crazy.
All of my like, not all of mine.
It wasn't all at once, but likea lot of my nerves started
(47:43):
waking up and I remember Istopped having to go to the
bathroom with such urgency andfrequency.
Then, a few days after the endof that first dose, I woke up
with a terrible, terribleheadache in the middle of the
(48:03):
night, tried to take Advil forit and I threw up the Advil.
So then, a few hours later, orsix hours later, because I
didn't know how much of theAdvil I'd absorbed, I tried
taking Tylenol and I threw thatup.
(48:26):
I basically spent the day likethrowing up and in a lot of pain
, unable to move, crying.
My dad was home for, uh, theholidays, so he wasn't working.
My mom was out, she was at work, and then I um told my mom
comes home and she's like, okay,well, we'll give her, like
we'll try one more thing.
(48:46):
And I think she gave, I thinkshe also tried to give me
Tylenol.
And she comes into my room, thewith the Tylenol.
There's a bucket, you know,next to my bed.
So she gives me the Tylenol andlike 15 minutes later I throw
up and I'm like sweating and inso much pain and she goes okay.
(49:07):
Well, we're taking her to thehospital and so I go to the
hospital and this hospital it'slike a, you know, one of those
trauma centers.
So, like they know, you knowthey, um, I remember they, they
did do a CT scan.
I remember the CT scan, um tomake sure that there wasn't like
any trauma in my brain.
(49:27):
Um, they're like, it's fine.
Um, they gave me IV Zofran, ivToradol and um IV fluids,
because I was so dehydrated,because I couldn't keep down
anything like I I would take asip of water and then I'd throw,
I'd throw it up, and so theybasically just gave me a
(49:55):
prescription for Zofran and theywere like take, take, you know,
advil, take ibuprofen as needed, and you know, just just make
sure you're drinking water likeyou're, otherwise you're okay.
And so they sent me home.
Um, I suspect that that wasprobably aseptic meningitis, but
(50:16):
again, no formal diagnosis.
So then I talked to my doctor,who you know the one who
diagnosed me with PANS-PANDAS,and she suggested that I take a
combination Advil and Tylenol,you know, to deal with it.
And she goes every six hours asneeded.
My reactions to subsequentinfusions got better.
(50:39):
My parents and my friends andmy boyfriend they all over you
know the ensuing year they wouldat various times just
unprompted say, wow, you'redoing so much better, you're
like your old self.
That was validating.
(50:59):
And actually the doctor whoprescribed the IVIG for the
peripheral neuropathy, like forthe polyneuropathy, she said
during my follow-up appointmentwith her.
She said wow, like you're here,you're, you're mentally here.
She said before you werephysically here but you were not
mentally here and you seem somuch better.
(51:21):
And that's part of what makesme think.
Well, she probably thought thatthere was some sort of central
nervous system thing happening.
You know autoimmune thinghappening in my central nervous
system.
But she didn't.
That's not her jurisdiction.
So she was like trying.
Speaker 1 (51:39):
So I recall distinctly that your voice was
so much stronger after a certainpoint which was really
interesting.
We didn't Zoom, we talked onthe telephone and I remember a
(52:09):
little while.
And now you're involved.
You know you're part of aninternship that is very
rewarding to you.
How do you feel?
Speaker 3 (52:21):
I feel pretty good about it.
I am.
I still get exhausted because,like if I think, especially if
you've gone undiagnosed anduntreated for as long as I have,
I I'm not entirely convincedthat you can get a hundred
percent and I'm sure you know,know that there are cases where
(52:43):
you can.
For me, physically it'sexhausting.
I work multiple jobs throughoutthe school year because
healthcare is extremelyexpensive and that's where all
of my savings went.
But I'm pretty happy and, quitefrankly, I got my grades back
from my first semester and I waslike I did, pretty happy and,
quite frankly, I got my gradesback from my first semester and
(53:04):
I was like I did pretty well.
I was a little disappointedbecause I thought I could have
done a tiny bit better, but youknow, to put it in perspective,
there were times at that pointit was like a little over two
years prior that I could barelystring together three sentences
or three words to make asentence.
I think that that's a testamentto how far I've come.
(53:27):
I'm not entirely better, but Iam significantly improved.
My mom at first she was hopinglike, oh well, you can be on
IVIG for a little bit and thenyou can just kind of go live
your life.
That's kind of what I washoping as well.
Like, I would rather not get aninfusion once a month for the
(53:47):
rest of my life, but if itallows me to, if it allows me to
do what I want to do, to beyourself, yeah.
If it allows me to live andpursue a career that I want to
pursue, at one point any job wasso far-fetched for me the
ability to hold down literallyany job it seemed so impossible
(54:11):
that I would have been thrilledto have anything.
If it allows me to maintainsome semblance of independence,
then I'll do it, because theoption is IVIG or go back to the
way I was.
And I know that there are othertreatments out there, but given
my Bartonella, they're notreally an option for me because
they're immunosuppressive.
Speaker 1 (54:33):
Well, you're a trooper, Thank you what?
Maybe we'll end with any advicethat you would like to give to
other people, other young peoplein similar kinds of situations.
Speaker 3 (54:48):
Your intuition is probably correct.
If you don't think you'remaking up your symptoms, you're
not making up your symptoms.
And so, within your limits,within financial, physical,
whatever sort of limits you mayhave you should pursue answers.
You should never take I thinkit's just anxiety as a blanket
(55:12):
explanation, because that's notsomething.
Anxiety doesn't do that.
In my experience it canmanifest as physical symptoms,
but to the extent that it didwith me, it doesn't turn your
skin green.
It doesn't give you like rashesthat only respond to
antibiotics, it you know thatsort of thing.
(55:35):
It doesn't make your tonsilsswollen and full of swollen and
full of tonsil stones.
Like it.
It doesn't.
It doesn't do that sort ofthing.
It doesn't give you patches,like swollen patches on your
back, like it does.
It doesn't do that sort ofstuff.
Also, do your research.
There's a certain connotationwith do your research.
(55:55):
And I'm not saying thatconnotation, I'm saying like,
read your medical journals,reach out to people, reach out
to organizations, if you seesomething, if someone suggests a
diagnosis to you.
Because that's how it startedwith me.
This infectious disease doctorsaid yeah, I've heard of things
with strep that cause these likepost-infectious
neuropsychiatric things, and hewas unfortunately limited
(56:19):
because he was within a hospitalsystem that doesn't really
support pans, pandas, and also Ididn't have a positive strep
test.
So at that point, because I'dprobably because I'd been on so
many antibiotics for so longresearch at you.
(56:39):
You should, and you should seekothers who are knowledgeable in
whatever diagnosis you orsymptoms you have or you may
think you have.
Speaker 1 (56:53):
Yeah, great advice.
Thank you, great advice.
Thank you so much, jen, forsharing your story.
It's been a long journey we getsome sense of in just this
short podcast, and I admire yourperseverance and your tenacity
in knowing that something wasnot right and seeking treatment
(57:16):
for it.
Thank you, thank you very much,thank you.
Speaker 2 (57:20):
This concludes Episode 14 of Untangling Pandas
and Pants.
Thank you very much, Thank you.
This concludes Episode 14 ofUntangling Pandas and Pans.
Thank you for listening.
For more information aboutPandas and Pans and the Alex
Manful Fund, please visitthealexmanfulfundorg.
(57:42):
The content in this podcast isnot a substitute for
professional medical advice,diagnosis or treatment.
Always seek the advice of yourphysician or other qualified
healthcare provider with anyquestions you may have regarding
a medical condition.
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