Gabby’s Story

Gabby has experienced the debilitating effects of PANS for the past eight years. Like many of us, she knows very well what it’s like to have severe obsessive-compulsive symptoms, brain fog, and much more, which has taken away some of her favorite things to do. However, this hasn’t stopped her from following her dreams, as she is a double major in nursing and psychology with the goal of helping others like her who experience neuroimmune disorders. Gabby is what all PANS/PANDAS survivors dream of becoming: someone who goes after their goals and finds the joy in life even in the face of severe symptoms. She continues down her healing journey with a psychiatrist and integrative medicine specialist, and is determined to continue healing. Read Gabby’s full story below:

What symptoms did you have, and which ones do you continue to experience?

I have always had severe OCD,  balance/coordination issues, severe restrictive eating patterns, tremors, deterioration in handwriting  as well as math skills. Profound brain fog. Extreme sensitivity to light and other visual changes. Changes in urinary patterns, muscle weakness, and sleep disturbances. 

Explain how PANDAS/PANS has influenced your personality and overall life experience. How have these symptoms impacted your life?

PANS has greatly changed my life. From my first attack, I feel I have never been the same. Certain subjects in school used to be much easier for me, and they suddenly became a lot harder to succeed in. I have still managed to thrive academically, but attendance in class is very hard since I frequently experience flare ups. Over the 8 years that I have been dealing with PANS, I have unfortunately had to give up some activities I used to do. I used to be very good at playing the flute, but I had a severe flare in 2022 and I was never able to gain the level of hand-eye-mind coordination needed to go back to playing the flute at a high level. I had my worst flare in 2023 when I had a reactivation of EBV which led to my diagnosis of Chronic EBV. After this flare, my favorite hobby, dance, became much harder, especially tap dancing. I am unable to pick up the choreography as fast as I used to and often get brain fog during practice. Having PANS has greatly altered my stance on life. I try to live every day to the fullest, because I never know when a flare will begin and my functioning will be greatly reduced. 

Walk us through your medical experience. How many times were you misdiagnosed, how long did it take for you to get correctly diagnosed, and how did you navigate all of this while experiencing your symptoms?

I saw my primary care and neurologist for 2 years before I finally saw my current psychiatrist who found mycoplasma pneumonia in my blood work and put the pieces together to diagnose me with PANS. She helped me titrate psychiatric medications and would provide antibiotics when my blood tests indicated it. 4 years later, I came across an integrative medicine specialist in my area who specializes in PANS/PANDAS and more lab testing was done to confirm the diagnosis and more treatments have been provided and I am still currently working with this integrative medicine specialist and my psychiatrist! 

Were you able to receive insurance coverage for your treatment(s)? How hard did you and your family have to fight to get coverage?

Most of my treatment is not covered by insurance. My compounded pharmacy medications usually have a hefty copay of around $100 per monthly supply. My insurance also doesn’t cover my PANS specialist because they are out of network. My specialist is considering IVIG treatments for me, so I am preparing for that insurance battle. 

What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?

My biggest advice to anyone who suffers from PANS/PANDAS is to just keep pushing through. I know it is hard and I feel like giving up a lot, but the flare will eventually get better. It will not be like this forever, better days are ahead :)

What is your dream job and vision for your future?

I am a double major in nursing and psychology. My dream job is to become a nurse practitioner with a concentration in psych and integrative medicine :) I want to help people the way I have been helped. I have a special interest in neuropsychiatric and neuroimmune disorders due to my own experience and I am very passionate about it! 

Can you share any strategies or tools that have helped you manage or alleviate your symptoms?

My absolute go to is my heated blanket! Laying down in a dark room wrapped in a heated blanket makes me feel so much better! I also have an emotional support pet bunny who brings me so much joy :)! 

Were there any particular moments or experiences that made you feel understood or supported during your journey?

Meeting one of my close friends from home who also suffers from PANS/PANDAS, it makes me feel like I’m not alone. 

Have you found any resources or communities (online or in person) that have been helpful to you as someone with PANDAS/PANS?

I am a healthcare and psychology nerd so honestly I love to do my own research! I frequently read scientific journal articles about experimental PANS/PANDAS treatments! 

How do you explain PANDAS/PANS to others who may not be familiar with the condition?

I explain it as feeling like a completely different person. Honestly I usually tell a really long story and explain everything from the beginning hahaha but I explain it as feeling like your brain has turned against you. The OCD and the eating issues make you feel like you are your own worst enemy. The neurological and cognitive symptoms are just added frustration and obstacles that make you feel very defeated. 

Is there any specific moment or turning point in your treatment that gave you hope or made you feel like progress was being made?

A turning point in my treatment was when I was put on low-dose naltrexone (LDN). This medication is very expensive but for me it is very worth it. I feel the effects a lot more when I am not in a flare, but it brought my baseline up quite a bit. 

How do you handle setbacks in your recovery or moments when symptoms flare up again?

I handle flares by immediately going into recovery mode. Yes, I will still try and do my daily tasks and responsibilities, but I will excuse myself from optional events and stressful situations. When I feel the flare coming on I typically begin OTC anti-inflammatory meds like Tylenol or ibuprofen and I try to drink a lot of water. 

How has living with PANDAS/PANS changed the way you view your own health or how you approach overall wellness?

Wellness is a constantly changing state. When I am at baseline- I can focus on more “traditional” aspects of wellness like exercise and eating healthy and practicing self care, but when I am in a flare, wellness basically gets redefined to survival. I view my own health in a “tomorrow is never guaranteed” way, because I genuinely could wake up feeling completely different the next day. I try to be kinder to myself. 

How did PANDAS/PANS affect your relationships with family, friends, and peers? How did they respond to your diagnosis and symptoms?

PANS/PANDAS has had a large impact on my family and other loved ones. It’s very hard for the people in my life to understand what I’m going through and it can make them personally feel upset because they don’t know how to help me. At first my family didn’t understand my diagnosis and would question it a lot. Now they are much more supportive as I have explained it more since I did my own research. I feel like I am more reliant on my friends and family when I am in a flare, and I greatly appreciate all the support they have offered me. 

What do you wish people understood about living with PANDAS/PANS that they might not see from the outside? 

I wish that people who don’t have PANS/PANDAS understood the internal battle that people with these conditions go through. People often say “stop worrying” or “just eat” but they don’t understand that it is not a conscious decision we are making, and that basic everyday tasks like eating and drinking feel impossible. 

What do you want other kids or teens experiencing PANDAS/PANS to know about their journey?

I want other young people who have PANS/PANDAS to know that it doesn’t have to stop you from achieving your goals. While getting to where I am today was not easy in the slightest, it is definitely possible. When I was first officially diagnosed at age 14, I felt like everything was over for me, but that was simply not true. Now, 6 years later, I am extremely high functioning, I have a double major in college with very high grades, I’m in a sorority, and I’m on my college’s dance team! 

Do you have a favorite book, movie, or TV show that helps you escape or relax? 

I really like House MD because it’s a silly show where they solve complex medical issues and I find a lot of comfort in that. 

What’s your go-to comfort food or snack when you need a pick-me-up? 

MCDONALDS 100%!! It always makes me feel better :)

What’s something about yourself that you’re really proud of?  

I’m really proud of myself for coming this far in my journey. I still have frequent, severe flares, but I have found ways to manage it and I am still able to pursue my dreams! 

Do you have a favorite music artist or song that helps you get through tough moments? 

I really like twenty one pilots!

What’s your favorite hobby or activity to do when you’re feeling well?

I like to dance!!