Elise’s Story: PANS/PANDAS treatment after a 15+ year diagnostic delay

Elise shared the story below on her PANS/PANDAS journey at the IOCDF Conference in 2024 as part of the panel “PANS & PANDAS: What is it, What to Look For, & How to Support,” which included a lecture by Sheilah Gauch, LICSW, M.Ed, and a personal story by Abby Gauch.

Elise is ASPIRE’s Lead Adult Volunteer. She hosts ChitChat groups for the adult PANS/PANDAS community and contributes to programs.

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Many in the OCD community can relate to parts of my story but have not been taught enough about PANS/PANDAS to see it through that lens. I hope that by sharing, people will see that PANS/PANDAS is playing a bigger role than we are taught. This will help people reach comprehensive healing, not just symptom management.

Up until 2019, I had no idea PANS/PANDAS even existed. However, it had been wreaking havoc on my life for over a decade, just under other names. Basically all of the credit had gone to “classic” OCD.

 

When I look back on my OCD onset and progression, I have a new understanding of what was going on. Our first record of my OCD was repeatedly asking my first-grade teacher if I had a fever. At this level, though, the OCD still felt minor.

My OCD became all-consuming basically overnight 3.5 years later. I woke up with a life-altering fear of throwing up, also known as emetophobia. I told my parents I would not eat so I could not get sick. For weeks after that, my life just felt wrong. I had this constant unsettling feeling that led me to stick to my mother’s side. I would cry if she left the house to go around the block to get coffee.

When you really look at my onset, I had an array of different symptoms, and all are found in the PANS PANDAS criteria.

 

My mom brought me to multiple therapists until we found one that I responded to. He did not practice formal ERP, but he definitely encouraged me to do exposures. Between my knockoff ERP and the fact that brain inflammation can naturally decrease over time, I was feeling amazing. I had discovered a new, braver, calmer version of myself. After a few months in treatment, I switched from weekly appointments to check-ins when needed. I needed it pretty soon after. A few months later, I again had a random day where my OCD jumped in severity from mild to all-consuming. The theme this time was suicidal OCD. I went back to therapy, it gradually subsided, but not completely back to baseline, or how I felt before the flare. But enough that I was back out of therapy, and 8th grade was a great year.

This flare pattern would repeat throughout my life. I would continue having these times where the OCD was manageable one day and incapacitating for the next few weeks/months. Sometimes the themes would change: OCD focusing on suicide, harm, health, and existentialism. Sometimes, new symptoms came with it. I would randomly feel like I couldn’t breathe,  not be able to sleep, and physically struggle to swallow food. Everything felt wrong. Just being alive was too anxiety-provoking. They all would slowly decrease in severity but take pieces of me with them. I was gradually becoming more miserable as a baseline. Suicidal ideation became a regular part of my life, growing in intensity and frequency as the years went on. It went from white-knuckling my flares to white-knuckling my everyday life.

All my symptoms, both mental and physical, were always attributed to my OCD. As I got older, though, I had more physical symptoms, like heart palpitations, hypoglycemia, and low blood pressure. These are not PANS symptoms, but they are symptoms of common comorbidities for people with PANS that I developed: Hashimoto’s Thyroiditis, Dysautonomia, and Chronic Fatigue Syndrome.

When you treat PANS with only psychological interventions, you don’t treat what is biologically causing the immune response attacking your brain in the first place. Neither are you resetting the immune system back to normal. And when whatever is causing the PANS goes unchecked and your immune system continues malfunctioning, other parts of the body can get caught in it. So not only had I slowly been losing my mind, but then I slowly began losing my body.

The first time I learned of PANS/PANDAS was in the 2019 OCD conference program booklet. I was 22. I remember seeing something about OCD, strep, and autoimmunity. I had been diagnosed with an autoimmune condition recently, so it caught my eye. But, I had never in my life tested positive for strep, so I assumed that could not be me. I didn’t go to the talk.

As my life went on without comprehensive treatment, my day-to-day functioning truly plunged to depths I never could have imagined. My OCD became out of control, my depression was Extremely Severe, I was physically exhausted, and I basically stopped leaving the house. I had OCD, Depression, Hashimoto’s, Dysautonomia, and Chronic Fatigue Syndrome.

Somehow, I kept looking for answers. Everyone told me not to. My family, therapists, friends, and doctors all said it was my history with OCD and that there was nothing else wrong with me.

I saw countless doctors from over seven specialties. I was in therapy for YEARS. I did DBT x3. I tried two different ERP therapists.  I did an intensive outpatient program for severe depression. It all helped a little, but not enough.

When I started my OCD merch business, the ocdopus, I started following some PANS/PANDAS advocates. I continued to wonder if I could have this.

A few things still kept me from pursuing the diagnosis:

1. Lack of understanding and awareness: In the OCD community, I had only ever heard it talked about as “that thing with OCD & Strep” only happens in a small percentage of cases; it’s rare. What were the chances I had that?  Even if I somehow did, what difference would it make now? My onset would have been over a decade ago; the damage was probably already done. And nobody ever talked about PANS/PANDAS in adults, only children.
2.  I felt like my symptoms didn’t match what I saw online from other advocates, like seizures, rages I didn’t remember, and hallucinations. I was also quite a few years older than all of them. I have since learned that PANS/PANDAS, ironically, is not so black and white.
3. I was worried these were compulsions. I always felt so guilty pursuing diagnoses for medical symptoms that I was “giving in” to the OCD. Health OCD was always a big part of my OCD; it was my first theme.
4. It was hard to find providers at all, nearly impossible to find ones that treated adults, and if they did, they usually did not take insurance and would be thousands of dollars in consultation and testing fees. And my family was not helping me financially, so I was on my own

And then one day, a PANS/PANDAS advocate shared an Instagram story that changed the course of my life.

 

She shared a list of illnesses and said that if you had any of these, there was a chance you could have untreated PANS/PANDAS. Not just one, but every single diagnosis I had ever gotten was on it, mental AND physical. OCD, Depression, Hashimoto’s, Dysautonomia, and Chronic Fatigue Syndrome. Was it not a separate issue that had been too late to catch, was it the same issue just running around my body?

At this point, I didn’t really feel I had a lot to live for. I could barely work part-time, I had no physical energy for anything, and anything left went to OCD. I had tried so many interventions and had nothing left to give. I read a book about someone with Lyme disease once who said that Lyme treatment was their suicide carrot. It was their bargaining chip to themselves. “If this does not work, I can kill myself, but I can’t kill myself until I try it.”

PANS PANDAS treatment was my suicide carrot. It was what kept me going.

 

I had no ideas left to pursue after years of trying. But I bit the bullet and paid for the consult. How could this be anything but a dead end? Everything else had been.

I was diagnosed with PANS/PANDAS in January 2022 at the age of 25. I started treatment at 26, I’m now almost 28. Comparing my quality of life now to before,  I don’t know how I made it to now. All of my conditions have improved since pursuing it. They’re not gone, but when I’m not flaring, my life actually feels good. I thought the only way I’d ever say that again was if I was lying.

I spent most of my life getting one prong of treatment: psychotherapy. Adding the other two treatment prongs, the immunomodulation, and the antimicrobial treatment, is what made my care complete. I wasn’t recovering without them. I use and benefit from all three prongs.

So what I hope you take away from my story is that PANS/PANDAS:

• Can present in a lot of ways
• Can happen in adults
• Affects OCD recovery
• Untreated can cause complications
• Start the diagnostic/treatment process as early as possible
• Can be treated, even 15+ years later
• NEEDS to be talked about more

I love the OCD community and have been part of it for years. But we drop the ball here. We’re a community dedicated to treating and understanding OCD; we need to talk more about a known cause of it. I encourage anyone who feels stuck in their illness or relating to any part of this story to consider PANS/PANDAS and how that could be affecting your OCD recovery and more.

If my body can bounce back with proper treatment after 15 years, that is something I want anyone of any age with OCD to know.