Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
Hello and welcome to Untangling PANDAS & PANS, a podcast about two relatively unknown medical disorders characterized by the sudden and dramatic onset of obsessions and compulsions, vocal or motor tics, or restricted eating behavior -- and a whole host of other symptoms -- following strep or other bacterial or viral infection. Sometimes overnight. I have the privilege of interviewing some of the top researchers and clinicians in the rapidly growing field of Infection-Associated, Immune-Mediated Neuropsychiatric Disorders. That’s a mouthful of words that encompasses the strangely named disorders, PANDAS and PANS.
My name is Dr. Susan Manfull. I am a social psychologist, the Executive Director of The Alex Manfull Fund, and the mother of Alex Manfull, who died at 26 years old due to PANDAS, a neuropsychiatric disorder my husband and I knew next to nothing about, certainly not that our daughter could die from it.
PANDAS is an acronym for “Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.” This disorder, first defined in 1998 at the National Institute of Mental Health, describes the acute and dramatic onset of obsessions and compulsions and/or motor or vocal tics as well as a whole host of neuropsychiatric symptoms in temporal association to a Group A streptococcal infection. PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome, refers to a similar symptom presentation -- with obsessions and compulsions or restricted eating being the cardinal symptoms -- due to a broader category of triggers (typically bacterial or viral infections). Both are thought to stem from a dysregulated immune system, probably leading to an over-production of autoantibodies and concomitant excess brain inflammation, particularly in the basal ganglia.
Symptoms vary from person to person and range in severity from mild to severe, and generally have a relapsing and remitting course. With early recognition and correct treatment, these disorders can be successfully treated. Today, it is no longer viewed as a diagnosis limited to the pediatric population.
Please stay tuned after each episode to listen to a one-minute public service announcement about PANDAS & PANS and The Alex Manfull Fund. To learn more, please visit our website: TheAlexManfullFund.org.
This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
S2 E14: When Everything Changes: Jen's Journey with PANS/PANDAS and the Fight to Be Believed
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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Untangling Pandas and Pans is a podcast about two little-known medical disorders characterized by the sudden and dramatic onset of symptoms such as obsessions and compulsions, vocal or motor tics and restricted eating behaviors, and a whole host of other symptoms following a strep or other bacterial or viral infection. I have the privilege of interviewing some of the top researchers and clinicians in this rapidly growing area, known by various names such as immune-mediated neuropsychiatric disorders, infection-associated neuroimmune disorders and autoimmune encephalitis, or simply pandas and pants. My name is Dr Susan Manful. I am a social psychologist, the executive director of the Alex Manful Fund and the mother of Alex Manful, who died at 26 years old due to pandas, a disorder my husband and I knew next to nothing about, certainly not that our daughter could die from it.
Speaker 2:This is episode 14 of Untangling Pandas and Pans, recorded May 31st 2025.
Speaker 1:Welcome to Untangling Pandas and Pans, a monthly podcast in which we talk about infection-associated immune-mediated neuropsychiatric disorders. Today, my guest is Jen, a 20-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 continuing to work at her job. She tells a story of how she finally came to get a diagnosis and effective treatment that has enabled her to feel like herself again, attend graduate school and pursue a career she has long wanted to follow. She is an inspiration, to say the least.
Speaker 1:I've been very fortunate to talk with Jen on a semi-regular basis since the summer of 2023. Yours, jen, is a very complicated story and I wasn't sure, as I mentioned in our earlier conversation, just where to begin, so I decided to start at what I feel is one of the most important, pivotal points in your story, which was when you were taken out of your place of employment on a stretcher. Out of your place of employment on a stretcher in well, I guess that happened twice, in July 2022 and January 2023. So, if it's okay with you, I think we'll start there and maybe you could tell the listeners a little bit about those two episodes, and then let's start a lot earlier in your life and I think when you were around 10 years old. So can you tell us about those, those exits from your place of employment?
Speaker 3:So the first one was a couple of days after the 4th of July and I had been feeling kind of weird for a while at that point, and more like acutely weird for a while at that point, and I had been brushing it off and brushing it off and then all of a sudden I started having this thing. That was kind of like a panic attack and it felt as if I was going to pass out and throw up at the same time. And so I went into my boss's office no-transcript, are you okay? And it was like her first or second day, you know. I very quickly explained to her the situation and, you know, after a few minutes of it not getting better, I remember they lowered me down onto the floor and they were like okay, well, maybe if you sit down onto the like on the floor it'll be okay. And I was like, okay, I hope so.
Speaker 3:And then I felt my eyes start rolling back in my head and I was having a hard time keeping them open. I felt extremely nauseous, I thought that I was going to throw up and I then I started shaking uncontrollably, trembling. So they called the paramedics and they had, you know, they they lifted me onto a gurney, they strapped me in and they brought me out of the building on a stretcher and then they took me to a hospital, like some hospital nearby, and, um, at the hospital they were like I don't know. They did a chest x-ray, which was kind of weird, and then they didn't have any clear pictures to what they were going to do with me. So I was just there in my work clothes Okay, what next? And then they saw the rash on my chest and they were, and the one doctor was like oh, we're going to test you for Lyme disease. So they drew blood and they left the vial of blood in the exam room that I was in and they never tested it. Ah, interesting.
Speaker 3:Yeah, yeah, they just gave me. They told me that they were going to give me a two week dose of doxycycline and then they gave me a 10 day course of doxycycline and then they were like, 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 me home. That was like the beginning of the end.
Speaker 1:Well, that must have been so frightening.
Speaker 3:Yeah, I had no idea what was happening. I was living far away from my family, like I was still fairly new to you know the city that I was in, and so I didn't really have too many people who I was close enough with to help me out. And one of my friends was like three hours away and she drove up the next day to kind of try taking care of me, and then it became evident that I was like not in good condition at all, and then she drove me back up to her family's house and then my mom picked me up and I spent a few days at home with my family.
Speaker 1:Yeah, and then you felt better and returned to work.
Speaker 3:I told myself I did because I didn't want to be. I don't want to be sick, no one wants to be sick. And then I just, you know, I kept on getting worse and worse and worse. I would try to go to work and I would feel like extremely weak, extremely shaky. My heart rate was all over the. I ended up in the ER again, I guess a week after and when one side of my body went numb and the ER didn't really do much for me. I effectively just sat there shaking for 14 hoursikes until my parents picked me up. That was basically it.
Speaker 1:I did you get a diagnosis for for that trip?
Speaker 3:no, no they said that they did a ct scan. I have no recollection of the ct scan. I I don't't a hundred percent know about what happened there.
Speaker 1:Okay, so fast forward about six months or so. What happened then?
Speaker 3:So I had had an allergic reaction to this breakfast sandwich that I'd eaten for months without really much issue. And, um, yeah, I I started to get hives and stuff and I started having a hard time breathing. And so they called in the paramedics and they again wheeled me out on a gurney from the building, um into a, um, you know, brought me over to the same hospital and they, you know, gave me some IV Benadryl, iv steroids, um, iv Pepsid. Then they observed me for like three, four hours however long they're supposed to observe you after the event and then I went home and then Were you better.
Speaker 1:At that point. Your symptoms had remitted.
Speaker 3:Not really. No, I was just kind of trying to push through it and I was trying to, you know, not look bad and I was doing a really bad job of that. And which is, you know, it's hard when you're very early in your career and you have all of these mysterious symptoms that are very legitimate and very real and they're not being taken seriously by anyone. They're not being taken seriously by anyone and they're not being taken seriously by any member of the medical community that you're seeing. Then you have no one to vouch for you and say to your place of employment and say, like she's not faking, she's actually incredibly ill. But yeah, so actually later that day I, after going home from the hospital, I had a piece of dark chocolate and almonds and then I noticed, over the course of about two minutes, my heart rate went from 80 to 135. And my mouth got incredibly itchy. And my mouth got incredibly itchy, I started having a hard time breathing. So I called my dad, because I would call someone anytime. I felt like I was having an allergic reaction and over the past few months I had started having these feelings and I like these things where I didn't, I wasn't entirely sure if they were allergic reactions or not. This was definitely one.
Speaker 3:And then I called my dad and he was like, well, you're talking to me. I was like, yeah, I'm talking to you, but, like my, my throat is getting increasingly tighter. And he was like, well, do you have your EpiPen? Because I had had my. I had had an EpiPen for a while, just from a previous thing. I went down to the lobby of my apartment and I asked the woman at the front desk. I explained what was happening and I said if I need to use the EpiPen, I need you to call 911. My voice was getting increasingly faint because of the air. Like the air was less and less air was getting through. And then, um, my vision started going black and then this guy was walking in from work. At this point I was like so weak that I couldn't open the EpiPen, which is I think that's a design flaw, I think that's a design flaw in the EpiPens, because that if you have someone who's like too weak to use their own EpiPen, like what's the point?
Speaker 3:But he opened the EpiPen, but he had. He had me stab it. That was my second ambulance ride that day and yeah to the hospital.
Speaker 1:Same hospital.
Speaker 3:A different hospital.
Speaker 1:Different Okay.
Speaker 3: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 like pretty sure I did Um. But then they took my trip taste like 12 hours after the fact and they were like see, your triptase is normal and I'm like your triptase for an acute allergic reaction, from what I know, isn't like you have a certain window of time and you took it outside of the window of time that you're supposed to take it. So of course my triptase is going to be normal. That was fun.
Speaker 1:You were already becoming very knowledgeable about medicine and the practice of medicine.
Speaker 3:It was entirely out of necessity, because when you have as many unexplained symptoms as I did, you have to read medical journals, because you have to know which questions to ask which doctors, and then you have to know which doctors to go to to advocate for yourself, because my primary doctor told me I had anxiety and shingles.
Speaker 1:And shingles. Yes, okay.
Speaker 3:And so I. That didn't sound right. He told me the rash was shingles and you know, maybe some people have shingles. I didn't have shingles because the rash responds. The rash responded to antibiotics.
Speaker 1:You're a little young for shingles too, aren't you?
Speaker 3:A little bit, a little bit.
Speaker 1:So with that, was it at that point that you resigned from your place of employment to try and figure out what was going on with you medically?
Speaker 3:Yes, that was already going to be my last week, oh, okay, it was not something that I wanted to do, but in the end it ended up being, I think, wholly necessary.
Speaker 1:So, as listeners already know, you're doing really well now and doing a lot of 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 were 10 years old, because in our conversations, as I understand it, that's another turning point, and if you could kind of walk us 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, were there any other remarkable illnesses that you had had before that?
Speaker 3:Yeah, when I was a baby, my eardrums burst twice each because of chronic ear infections. Yeah, I was constantly on antibiotics. I remember one time I was like three or four and I saw the antibiotics. You know the flavored stuff that they give kids tastes kind of like candy. I asked my mom when do I get to have that again? And she goes. She looks at, she looks at the thing, she looks at me and she goes. Three weeks, that's how regularly I was getting bacterial infections. Wow, primarily strep, I believe at that point because I wasn't getting ear infections anymore because I had gotten tubes put in my ears a couple of years prior.
Speaker 1:And then there was a lot of strep throat.
Speaker 3:Yes, All throughout I was always on antibiotics for strep and then it got to the point when I was a little bit older middle school, high school when I would get sore throats. That would persist until I took antibiotics. The funny thing was they weren't always positive for strep and so I would just suffer with these really bad sore throats and then eventually I would either have like a sympathetic doctor who's like okay, well, you've had a sore throat for like three months at this point, Like I should probably give you some antibiotics to see if it helps, and lo and behold, every time it helped, Wow. Or occasionally it would probably about 50% of the time it would be positive for strep.
Speaker 1:Okay, so you knew strep well, and when? When you turned 10, you had strep as well as mono. Is that correct?
Speaker 3:Yeah, it was a little bit before I turned 11. Um, and so I had mono and strep and I remember, leading up to it, I started having severe insomnia. When I started feeling funny you know when you're like starting to get sick and you're like I don't really know what's happening I started to get insomnia, like very bad insomnia, especially for a 10 year old. I wouldn't fall asleep until after 11 PM and I would wake up on my own around 5 am and I wouldn't be able to go back to sleep. I had to check the doors that they were locked every night and it was like obsessively and I couldn't get myself to stop that was new new behavior that was incredibly new.
Speaker 3:It was that I had never done that before. Um, and then I started to get really, really anxious. I would see like headlines that are scary for an 11 year old and like, oh no, what if that happens to my? Or for a 10 year old rather. And I'd be like, oh no, what if that happens to my family? And then I started getting really tired and I remember three of my soccer teammates got mono and you know, like you're all sharing water bottles, you drink out of the wrong person's water bottle. One time you get mono. I also got strep. I went to the doctor.
Speaker 3:I remember I was like living on cough drops and my mom, finally, after I guess like a week or a few days, I don't really know she was like okay, something's wrong with her. She took me to the doctor. The doctor said well, you know, it's really only mono like 25% of the time, so like we don't really have to do the blood work. And my mom got mad at him. She's like you're, you're doing the blood work for my kid. Do you see her? She's falling asleep right now. Like you're going to do the blood work. You're something's obviously wrong. And so they did. And I had two, both viruses that cause mono, cytomegalovirus and Epstein-Barr virus. Yeah, and I also had strep. And so they put me on amoxicillin because I wasn't I'm not allergic to amoxicillin.
Speaker 3:A few days later, I remember going downstairs with my um to my mom and dad from my room and that was like a chore because of how tired I was. I was effectively in bed for like three weeks over this time period. I was so tired. I remember lifting up my shirt and showing them my stomach and saying, well, there's something on my stomach Because it was pink spots Took me back to the doctor. Apparently, if you have mono and you take a penicillin-based antibiotic, it'll give you like a rash or something.
Speaker 3:And so they stopped me on the antibiotic. They didn't give me another one. That seems peculiar, very weird. I didn't know that because I was like very out of it. And then I asked my dad relatively recently, and he goes oh yeah, no, they didn't give you another antibiotic. This particular pediatrician's office is affiliated with one of the best hospital systems in the country, genuinely world-renowned and they didn't lace my antibiotic with a different antibiotic. And so after that I got um, I started, uh, wetting the bed. I refused to eat. Mind you, I'd been potty trained by the time I was, you know, when I was about two. So at 10, you know, you start wetting the bed. I refused to eat, I forgot how to hold a pencil, I had a sudden marked decline in math and then, in addition to the OCD anxiety, insomnia wasn't really an issue at that point, because I was so exhausted from the mono that I was sleeping probably like 16 hours a day.
Speaker 1:Oh goodness, yeah, so you had OCD. Just some of your symptoms. You had OCD. You were very tired, I mean extraordinarily tired, not just very tired. This happened. The OCD came on suddenly and you were refusing to eat. Did you have any tics at that point? Because I know you did later in life.
Speaker 3:I don't remember, but I remember, like when I was younger and this is I I'm. This is part of the reason why I'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 younger you would all of a sudden I'd get like a thing where you just kind of move very suddenly and I would have those more frequently during certain periods and then I wouldn't have them for longer periods, if that makes sense. I couldn't really say whether those were ticks, but it's like an involuntary movement, a sudden, involuntary movement.
Speaker 1:Yeah, Did. Did you go back to the doctor with those relatively new and primarily psychiatric symptoms?
Speaker 3:No.
Speaker 1:Okay, so then what happened? You're 10. And what happened between 10 and July 2022?
Speaker 3:July 2022. Yeah, so a few weeks after I um got over the acute sickness of mono I had, I started getting what I now know to be symptoms of neuropathy. So I remember waking up in the middle of the night and it was like most nights and like something would be completely numb and I couldn't move it.
Speaker 1:Something like your foot, your arm.
Speaker 3: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 falling asleep, any core, any correlation with me like sleeping on an arm and falling asleep. Um, and I started to get what I now know to be nerve pain all down the backs of like, from my SI joint all down the backs of my legs into my feet, and it was extremely 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.
Speaker 3:And I was like, well, I guess this happens sometimes, cause I mentioned it to my mom and she's like I guess that happens sometimes and you don't really know these, when you're not familiar at all with nervous system disorders or like autoimmune nervous system disorders, you don't know what to look for, you don't know what symptoms are. And so my entire family was like, 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 not deal with it anymore. You just kind of you just kind of dealt with it. Um yeah, so one thing that my mom did say was that after I'd monounstrapped, my personality changed.
Speaker 1:And what did she mean by that?
Speaker 3: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 all and of course you know we never saw a psychiatrist or a therapist about it. It was just I don't know. You're getting close to puberty.
Speaker 1:I guess this is hormones well because I mean truthfully, each of those things that you've mentioned in and of themselves are within normal uh, behavior and and? And normal responses mean your foot falling asleep. That's normal, but for the length of time and the frequency that that was happening to you, it wasn't normal. I also grew up in a family that thought, oh, this will take care of itself and okay, let's see what happens. And so I understand what you're saying about that, and it's hard to step back and look at everything that was going on with you. But you needed to step back in order to see these.
Speaker 1:What I'll refer to as psychiatric or at least extreme emotional responses were new, new for you. And then the other more physical symptoms that you described also were very new for you. But it's hard to put that all together as one lives their normal life. So as time went on I mean you certainly completed school, went on to college, you were an athlete in college and then you went on and you had a job that took you to multiple places across the country. How was life then? It was hard.
Speaker 3:I throughout high school and college, I felt like I had to work five times as hard as anyone to get similar results. So, for example, in college, the training that I did did not yield the same results for me as it did for my teammates. You know, I know that everyone's built differently and stuff, but I was just exhausted all the time. I did have low ferritin and I do have PCOS.
Speaker 1:What is PCOS for our listeners?
Speaker 3:Ovarian syndrome. It's an auto-inflammatory condition. That's how my endocrinologist described it to me. It's an endocrine disorder where you have an imbalance of your hormones um estrogen, testosterone, progesterone. It impacts your reproductive health. It's like a metabolic thing as well.
Speaker 3:Yes, I had those, but even after fixing them, I just was exhausted all the time and also the other symptoms of like periodically not wanting to eat, the neuropathy, the insomnia, anxiety, ocd, depression. They didn't go away, in fact, after End of 2017, when I had really bad bronchitis that resulted in me turning blue during a competition due to lack of oxygen. After that, I had a pretty bad bout of anxiety, depression, didn't really want to eat, really want to eat. And then, february of 2018, I had, I remember, at one point, the left side I was exercising and the left side of my body went numb, and this was a couple weeks after I had started showing signs of, or experiencing signs of, an infection, probably like some sort of viral infection or something. I don't really know. I remember I got this viral infection symptoms that came on a little bit after I had started experiencing intense, intense muscle spasms, muscle cramps. I had been experiencing like really bad back spasms periodically from the time I was about 14 and also SI joint pain from about the same time. But they would usually resolve and these did not resolve. I remember I went to the athletic trainer and she was working on my calf and she said this is the worst. I've been a trainer for 20 years. This is the worst knot that I've seen, and to the point where they had me get an MRI to make sure that it wasn't something worse than like just a really intense muscle cramp. So having those muscle spasms in retrospect it follows the pattern, a similar pattern to what I experience now right, which is you have intense muscle spasms. Now it's like intense. It's also episodes of like twitching or involuntary movements, kicks, and then you show signs of an infection.
Speaker 3:The only real difference was at the time the neuropathy started the numb every night for a while.
Speaker 3:Oh no, I'm like what if I don't wake up, because I remember my breathing just being very labored. There was also the feeling of being incredibly hungry and then eating two bites of something and feeling incredibly full. That also was something that was a new symptom at the time, just the feeling of pure discomfort rather than just the disgust at the thought of food or sometimes complete apathy at the thought of food. It was like a physical sensation, to the point where if I ate too much, I would start feeling like I was going to throw up and too much was like a few bites of food. And that continued for a while and it got to the point where it was so concerning, not because of the food thing, but because of my foot. My right foot started curling in and I couldn't straighten it. After a few days of that, my mom and dad were like okay, we have to take you to a hospital and we're going to make them do tests on you because, like this is scary.
Speaker 1:And how old were you at that point? Uh, 21.
Speaker 3:So you're out of college? No, no, no, I was. Uh, I was in my junior year.
Speaker 3:Okay, and so I went to the hospital and they did a bunch of tests and they were like they look fine. They did some blood work. They did an EEG because I had something that might I had some sort of episode that might have been a seizure, and then my EEG was fine. And then they, they did an MRI on my brain and that was my first MRI on my brain and they were like, yeah, that looks fine. They did some blood work and I went through when I first got very, very sick in 2022 to try to see if they missed something in the blunt work, to see if anything was flagged. And there were like a couple of little things, but they those are kind of like hard to extrapolate. They were. There was nothing glaring, because I was so desperately trying to search for answers and all my tests were fine, so they sent me home.
Speaker 1:So how did that make you feel so they?
Speaker 3:sent me home, so how did that make you feel?
Speaker 1:I well, I thought it was I was on medication for my PCOS and I thought it was that medication. So you were still trying to make sense out of what could be causing this whole array of symptoms. Yeah, ebbing and flowing yeah.
Speaker 3:And then after several months I think it was like finally June-ish of that year I started to feel kind of okay. Mm-hmm. And I just I remember the numbness took forever to go away and I also had this intense abdominal pain that I have no idea what it is.
Speaker 1:That was new, though. A new symptom.
Speaker 3: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 very different. This wasn't really an ovarian cyst type of pain and I remember I went to a doctor. I went to my primary doctor and he goes well, you strained your abs and I was like I'm not working out right now. How am I, how, how do you suppose I strain my abs? He's like you know, doing core and I was like I I haven't really been working out because I've been, I've had so many of these weird symptoms. He goes, I don't know, and that was it. Yeah.
Speaker 1:You proceeded with your life, graduated from college and, as I said, you had an interesting job that took you around the country, and then you took this other job, in which you were taken out on a stretcher on two separate occasions and that to me seems to be the pivotal point when you really started looking for what in the world was going on more intensely. Am I correct about that?
Speaker 3:going on more intensely. Am I correct about that? Yes, but also after I graduated from college, I had a two-month-long migraine that got so bad that I couldn't move my neck and I ended up going to the ER. They did a spinal tap and everything was fine. So you know they let me go. But I also had again numbness on one side and then it shifted to the other side of my body Also all of those neuropsychiatric symptoms, just generally feeling terrible, in addition to the bottoms of my feet.
Speaker 3:That's when the bottoms of my feet started feeling like I was walking on, like they were made of rocks. It felt as if they weren't splaying. Parts of my feet were not splaying on the ground, and so when that happens it feels as if they're made of stone and you feel a little bit unsteady. I didn't know it was happening and I'd also started having similar things like patches of numbness on my face and my legs. I remember being concerned but not really thinking too much of it. During this time I had multiple UTIs a couple where I was actually peeing out blood and then a couple of strep infections as well. The symptoms I'm able to recall at this point did line up with some form of infection. Typically strep. Typically strep. Yes, at this point it was still typically strep.
Speaker 1:When did you begin to get some answers for this array of symptoms?
Speaker 3:That would be January 2023. Yeah, so that was when I had started seeing this neurologist in December 2022. She was in the, she was in the city that I was in. I had actually gotten a referral to see her in July of 2022 after an ER visit and yeah, so, um I it took a while to get in to see her. Oh, it took that. It took that long. Ah, okay, all right, it took that while to get in to see her. Oh, it took that. It took that long. Ah, okay, all right, it took that long to get in to see a neurologist. Wow, okay, yeah, she is a peripheral neurologist, so she doesn't really deal with the central nervous system. She did a bunch of blood tests. She was like, well, I think it could be this, I think it could be this. She did a perineoplastic panel, which means what?
Speaker 1:Can you explain that to the listeners?
Speaker 3:Yes. So it's this blood panel to see if you have a perineoplastic cancer that can result in autoimmune encephalitis, because basically you have this cancer, your body starts attacking your brain. She thought maybe I had that and it was negative, which is good, but at the time I was a little devastated because it wasn't an answer. So she did an EMG and the EMG had she said, I remember her telling me well, if anything comes back abnormal I'm going to retest you. And so I remember she retested my wrist, this one point on my wrist. It came back normal the second time and again I was a little sad and she also didn't note that thing in the EMG results. But I guess that's within the normal limits. And then she after that came back pretty normal. She did a skin punch biopsy and she asked me which before the EMG. She asked me which side felt worse, and at the time it was my right side. But part of me wonders if it had been my left, would it have yielded different results? Because there is a mismatch sometimes in terms of dexterity between my right and left. But I digress. Then she did the skin punch biopsy and that came back very low, normal, like teetering on, abnormal in terms of a test for small nerve fiber density. So it came back the way she explained it was. This is abnormal for healthy 26 year old female. So, given your response to prednisone, I am going to try you on a prednisone um, on IV prednisone and then, depending how on how you respond to that, we might do, we might start you on IVIG. How you respond to that, we might do, we might start you on IVIG.
Speaker 3:And at the time I was, I was I was simultaneously happy because we finally had concrete evidence that I wasn't making up all of my symptoms and I was a little disappointed because at this point I had started reading about autoimmune encephalitis and PANS, pandas, and I was sad, a little frustrated, because I didn't have a positive antibody Like my ANA was fine, which is crazy because there are healthy people with abnormal ANAs my ANA was fine. I was frustrated because I wanted something to prove that I was not fine, because I've been told by doctors for 15 years at this point that I was fine. You can look at me and you can see that I'm not fine. My mom even noted that I was green, like I was green Fall of 2022, I had green on my face Like I had a greenish tint which I only thought happened in cartoons.
Speaker 1:And this was hardly funny.
Speaker 3:No, no, it was not very funny at all. Um, but yeah, so she also. But this doctor, she, she was pretty good, she actually tried. I give her a ton of credit. She tried and she found something. Part of me speculates that maybe she knew there was some something like neuropsychiatric happening in my central nervous system or like autoimmune happening in my nervous system, rather, and that was part of the reason that she was so willing to try IVIG. But I don't know. I've never had the conversation with her. I don't know.
Speaker 1:So how did you respond to the IVIG?
Speaker 3:So the IVIG getting there was that. That was a journey, because I still wanted an actual answer. I wanted a concrete answer. I was not really happy with what I had so far. I was like there's got to be a better explanation and so I saw additional doctors. The more doctors I saw, the more of them corroborated that IVIG might actually be a good idea, which is at this point. It was crazy to me because I had gone relatively quickly from being told you're fine, it's all anxiety to yeah, you should probably get IVIG by a lot of these doctors. But I wanted to see what else I could find out first. So I saw a cardiologist actually the neurologist who did the skin punch biopsy. She referred me to this cardiologist who did a poor man's tilt table test. He said well, you have POTS and he's like you don't want to do an actual tilt table test because that's going to make you feel terrible. So you meet the criteria for POTS, you have POTS.
Speaker 3:He started me on Minidrine, which I didn't love, but I ended up discontinuing it once my symptoms got more manageable and that was fine. Um, I ended up getting my tonsils taken out because I saw an ENT. And he goes oh, wow, yeah, I'm not saying that you should have your tonsils taken out, but I'm saying that, like you would probably benefit from getting your tonsils taken out, because they were cryptic, they had a bunch of tonsil stones in them, and so before getting my tonsils taken out, to help with the pain and inflammation in my tonsils, he gave me a course of Augmentin as well, which I was actually very thankful for. I saw a doctor in New York who did a blood test for Lyme disease and he found Lyme disease and so he started me on antibiotics for that. And then I also saw another neurologist who was an expert in autoimmune encephalitis.
Speaker 3:She did a bunch of other tests. I was like equivocal for a couple antibodies which I thought was good, until she said, well, you know it's equivocal, you know she's like it's equivocal, it's not like positive. I was like yeah, but it's could be something maybe, and she was like no, it's equivocal, it's not like positive. I was like yeah, but it's could be something maybe, and she was like no, it's equivocal. Um, interesting, and she also did say that she was open to the diagnosis of pans pandas, but she didn't know a lot about it.
Speaker 3:She's located in New York also, um and she, but she wouldn't feel comfortable administering IVIG to me, if that makes sense, because of the potential side effects. And so at this point it's like late summer 2023, and I've started talking to you and you recommended a doctor to basically see for a potential PANS-PANDAS diagnosis. And I saw her and she was really good my first appointment that fall. I saw her and she goes well, you have autoimmune encephalitis or you have PANS-PANDAS. And then I saw her about a month later and she goes that's Pans Pantas.
Speaker 1:Because you showed up with a lot of ticks that day and I don't know what else but.
Speaker 3:So I basically I hadn't slept the night before was like in my twenties when I started developing like a stutter, and that also coincides with all of my other symptoms. So I showed up, I was stuttering, I was twitching, I was, you know, my arm was doing this thing where it like straightens and stiffens out and I can't really move it. She goes that's PANS PANDAS. At this point we were already in the process of getting IVIG. That had started, I believe, in September of 2023, of like actually going through with the process of trying to get insurance to approve it. We finally did. This doctor tried to get it approved for pans pandas and she couldn't with my insurance, and so I ended up getting it approved for polyneuropathy with connective tissue manifestations, auto, like with an autoimmune etiology basically, and that's what I, that's what I believe the ICD-10 codes, um, translate to, and so I got my first dose in December of 2023 and I remember after my the first, like the first day of my first dose, I walked into the hotel that my dad and I were staying at because it was a few hours away from where we lived, that I was getting the IVIG. I felt the carpet under my feet for the first time in years and it was crazy. All of my like, not all of mine. It wasn't all at once, but like a lot of my nerves started waking up and I remember I stopped having to go to the bathroom with such urgency and frequency. Then, a few days after the end of that first dose, I woke up with a terrible, terrible headache in the middle of the night, tried to take Advil for it and I threw up the Advil. So then, a few hours later, or six hours later, because I didn't know how much of the Advil I'd absorbed, I tried taking Tylenol and I threw that up.
Speaker 3:I basically spent the day like throwing up and in a lot of pain, unable to move, crying. My dad was home for, uh, the holidays, 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. And I think she gave, I think she also tried to give me Tylenol. And she comes into my room, the with the Tylenol. There's a bucket, you know, next to my bed. So she gives me the Tylenol and like 15 minutes later I throw up and I'm like sweating and in so much pain and she goes okay.
Speaker 3:Well, we're taking her to the hospital and so I go to the hospital and this hospital it's like a, you know, one of those trauma centers. So, like they know, you know they, um, I remember they, they did do a CT scan. I remember the CT scan, um to make sure that there wasn't like any trauma in my brain. Um, they're like, it's fine. Um, they gave me IV Zofran, iv Toradol and um IV fluids, because I was so dehydrated, because I couldn't keep down anything like I I would take a sip of water and then I'd throw, I'd throw it up, and so they basically just gave me a prescription for Zofran and they were like take, take, you know, advil, take ibuprofen as needed, and you know, just just make sure you're drinking water like you're, otherwise you're okay. And so they sent me home. Um, I suspect that that was probably aseptic meningitis, but 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 as needed.
Speaker 3:My reactions to subsequent infusions got better. My parents and my friends and my boyfriend they all over you know the ensuing year they would at various times just unprompted say, wow, you're doing so much better, you're like your old self. That was validating. And actually the doctor who prescribed the IVIG for the peripheral neuropathy, like for the polyneuropathy, she said during my follow-up appointment with her. She said wow, like you're here, you're, you're mentally here. She said before you were physically here but you were not mentally here and you seem so much better. And that's part of what makes me think. Well, she probably thought that there was some sort of central nervous system thing happening. You know autoimmune thing happening in my central nervous system. But she didn't. That's not her jurisdiction. So she was like trying.
Speaker 1:So I recall distinctly that your voice was so much stronger after a certain point which was really interesting. We didn't Zoom, we talked on the telephone and I remember a little while. And now you're involved. You know you're part of an internship that is very rewarding to you. How do you feel?
Speaker 3:I feel pretty good about it. I am. I still get exhausted because, like if I think, especially if you've gone undiagnosed and untreated for as long as I have, I I'm not entirely convinced that you can get a hundred percent and I'm sure you know, know that there are cases where you can. For me, physically it's exhausting. I work multiple jobs throughout the school year because healthcare is extremely expensive and that's where all of my savings went. But I'm pretty happy and, quite frankly, I got my grades back from my first semester and I was like I did, pretty happy and, quite frankly, I got my grades back from my first semester and I was like I did pretty well. I was a little disappointed because I thought I could have done a tiny bit better, but you know, to put it in perspective, there were times at that point it was like a little over two years prior that I could barely string together three sentences or three words to make a sentence. I think that that's a testament to how far I've come. I'm not entirely better, but I am significantly improved.
Speaker 3:My mom at first she was hoping like, oh well, you can be on IVIG for a little bit and then you can just kind of go live your life. That's kind of what I was hoping as well. Like, I would rather not get an infusion once a month for the rest of my life, but if it allows me to, if it allows me to do what I want to do, to be yourself, yeah. If it allows me to live and pursue a career that I want to pursue, at one point any job was so far-fetched for me the ability to hold down literally any job it seemed so impossible that I would have been thrilled to have anything. If it allows me to maintain some semblance of independence, then I'll do it, because the option is IVIG or go back to the way I was. And I know that there are other treatments out there, but given my Bartonella, they're not really an option for me because they're immunosuppressive.
Speaker 1:Well, you're a trooper, Thank you what? Maybe we'll end with any advice that you would like to give to other people, other young people in similar kinds of situations.
Speaker 3:Your intuition is probably correct. If you don't think you're making up your symptoms, you're not making up your symptoms. And so, within your limits, within financial, physical, whatever sort of limits you may have you should pursue answers. You should never take I think it's just anxiety as a blanket explanation, because that's not something. Anxiety doesn't do that. In my experience it can manifest as physical symptoms, but to the extent that it did with me, it doesn't turn your skin green. It doesn't give you like rashes that only respond to antibiotics, it you know that sort of thing. It doesn't make your tonsils swollen and full of swollen and full of tonsil stones. Like it. It doesn't. It doesn't do that sort of thing. It doesn't give you patches, like swollen patches on your back, like it does. It doesn't do that sort of stuff.
Speaker 3:Also, do your research. There's a certain connotation with do your research. And I'm not saying that connotation, I'm saying like, read your medical journals, reach out to people, reach out to organizations, if you see something, if someone suggests a diagnosis to you. Because that's how it started with me. This infectious disease doctor said yeah, I've heard of things with strep that cause these like post-infectious neuropsychiatric things, and he was unfortunately limited because he was within a hospital system that doesn't really support pans, pandas, and also I didn't have a positive strep test. So at that point, because I'd probably because I'd been on so many antibiotics for so long research at you. You should, and you should seek others who are knowledgeable in whatever diagnosis you or symptoms you have or you may think you have.
Speaker 1:Yeah, great advice. Thank you, great advice. Thank you so much, jen, for sharing your story. It's been a long journey we get some sense of in just this short podcast, and I admire your perseverance and your tenacity in knowing that something was not right and seeking treatment for it. Thank you, thank you very much, thank you.
Speaker 2:This concludes Episode 14 of Untangling Pandas and Pants. Thank you very much, Thank you. This concludes Episode 14 of Untangling Pandas and Pans. Thank you for listening. For more information about Pandas and Pans and the Alex Manful Fund, please visit thealexmanfulfundorg. The content in this podcast is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
