My name is Kyra Dugan. I’m 23 now, and five years ago, I would never have been able to guess what was about to happen. Life as I knew it changed suddenly, drastically, in less than a week’s time, and no one saw it coming.
In 2018, I went to a summer camp in Tennessee for a week, and when I came home, I was experiencing mania, psychosis, extreme insomnia, OCD behaviors, non-stop rapid talking, and I was in a euphoric state. I was presented with these and many more concerning symptoms, so unlike me, my parents and friends who saw me during this time said I was a completely different person. The Kyra they knew simply was not there. I was taken to the ER shortly after returning home due to these startling symptoms and behaviors, as something was definitely seriously wrong…..unfortunately, it would take my family till 2021 to get a correct diagnosis.
The scariest thing during that time was not being able to realize anything was wrong. I thought I was having the time of my life at this camp. I knew I was having trouble sleeping and ear and teeth pain. But I attributed it to the stress of a new place and experience. I remember feeling faint, thinking I would pass out during a soccer game, which was unlike me. I remember noticing how I seemed to rapidly be losing weight, as the clothes I had brought were starting to be loose and baggy when they had fit fine only days before. I ended up losing 10 pounds in a week without trying, coming home looking like skin and bones instead of the healthy, athletic girl I had left as.
I now know my Autoimmune Basal Ganglia Encephalitis was triggered while at camp. Mold mycotoxins and mycoplasma pneumonia were the likely triggers, as were later shown in blood and urine test analysis. My Cunningham Panel through Moleculera Labs also resulted in off-the-charts elevated anti-neuronal brain antibodies in my brain (specifically the anti-tubulin and anti-dopamine 1 and 2). A case study is currently in process due to these extreme results.
The Panel (see picture) showed my brain was under attack by my body, causing a life-threatening situation and all the disturbing symptoms and altered behaviors I was experiencing. It proved I did not have a mental or psychiatric illness, like bipolar, which I kept getting misdiagnosed with since this all started.
It took well over 50 different doctors, Mayo Clinic, 2 ER visits, 2- two week stays in a psychiatric hospital, appointments with psychiatrists, endocrinologists, a hepatologist, well over 100 blood draws, CT scans, MRIs, EEG, EKG, x-rays, a lumbar spine puncture, etc. giving no solid answers. I was labeled bi-polar multiple times, but the meds given only made me too fatigued and weak to get up off the couch, emotionless-taking away my will to live and if I was left on them, likely would have led to suicidal thoughts, as the medications took away any feelings or purpose to live, leaving me in a very depressed and hopeless state. While all the symptoms during a flare were very dangerous and scary, the aftermath was as difficult in its own way. There was a time when I did not want to live, and my parents had to keep an eye on me, as I was in a state of such deep depression from the trauma of all I had been through and the medications prescribed, leaving me in a very fragile mental state. This illness seemed to wreck me to the core, taking everything from me, even myself, because when the flares happened, most of the time, I was not even aware of myself or able to control what I was saying or the behaviors I was exhibiting.
Hope came when my family finally heard of PANS/PANDAS and saw all the symptoms matched what I had been experiencing, even the dilated eyes and OCD that would make me clean my face till it bled. We had infection lab tests, and many came back high and actively elevated, including Mycoplasma Pneumonia, HHV 6, Coxsackie virus, Cytomegalovirus …. and my ANA (Antinuclear Antibody), a blood marker of autoimmunity and inflammation was also very elevated.
While searching for a PANS/PANDAS specialist, I started on antibiotics. After beginning treatment with a doctor experienced in treating PANS with a full-body approach, I started to see immediate improvements. Within 6 months of being treated by my functional medicine doctor, focusing on addressing infections, inflammation, immune modulation, and environmental toxins like mold, my ANA came back negative, meaning my autoimmunity was gone! Besides that, I was sleeping again and starting to get my energy back. And for the first time in years, I felt I could breathe freely and stop living in fear of when I would have the next flare. Instead, I was able to dream about what I wanted to do when I was better and as I healed. I decided it was time to start sharing my story, first by blogging and then on a podcast interview. I am working on writing my story as a book to help others because I do not want anyone to go through what I did. If my story and what I went through could help another person get correctly diagnosed and treated sooner, avoiding the traumatic experience of being put in a psychiatric hospital alone when so sick, I will continue to share and advocate for that next person. I will be the person for someone else; I wish someone could have been for me.
I know it was not one thing that helped me on my journey of healing from PANS; it was a combination of an experienced PANS doctor, testing, supplements, nutrition, counseling, exercise, prescriptions, support from family, friends and my dog, and addressing the inflammation, infections, mold and modulating the immune system.
From Low-dose Naltrexone taken to modulate my immune system, charcoal, and other binders to rid my body of mycotoxins, curcumin, fish oil, and vitamin D to help my body lower inflammation, glutathione, magnesium, TUDCA, PEA, and countless other supplements and minerals to restore my body and brain to proper function. It took a personalized and tailored approach by a functional medicine doctor specialized in treating PANS/PANDAS to know the tests needed and then interpret the results to know what my body needed to heal. While my journey to healing has not been a quick fix, the correct diagnosis and treatment by the right doctor made all the difference, and I started to finally heal.
I encourage those who have PANS/PANDAS to not give up and keep going one day at a time because there is hope for healing and people, doctors, and organizations (like ASPIRE!) that really do care and want to help you. Knowing about this illness and how it can suddenly or gradually present with so many bizarre symptoms gives you an advantage I wish I had. Awareness is powerful in changing the outcomes of healing. But even if it has taken you years to find answers as it did me, there is still much hope to heal, and I am living proof of that. As are so many others. You will get through this, and you don’t have to be ashamed or embarrassed by what you have been through. You will have a story you can only tell, and trust me, by sharing it, you will help others.
A quote that has been inspirational to me is this, “Walk until the darkness is a memory, and you become the sun on the next traveler’s horizon.” And that is what I hope to do, by sharing my story with PANS/Autoimmune Encephalitis/BGE, to shine a light on this illness so people are aware of PANS/PANDAS and can know how to treat and heal from it. Throughout the dark times of my illness, I learned that no matter where life takes you, your light is worth shining and fighting for! Believe it!
No one should have to go through what I went through before they get answers and the correct diagnosis and treatment. From the traumatic experience of being put in a psychiatric hospital alone two times after just turning 19 to the weeks where I could hardly force myself to sleep a few hours no matter what medications were prescribed, NO ONE should have to go through this.
There were many times along the way when I felt like giving up, like my life was not worth fighting for. I was confused and scared; nothing seemed to be helping, and I was getting worse. I am thankful to have parents who advocated for me when I couldn’t and who fought to find answers, paying more money than I can count to find answers to help bring me back. If there is strength, I learned from fighting this illness, it is the tenacity and resilience needed to take one day at a time. I truly believe that brighter days are on the horizon because, with the correct diagnosis, doctor, and treatment, they really are!
Thank you for taking the time to read my story!
If you want to hear more from me:
I told my story on the Learning to Slay the Beasts podcast: Episode #146, ‘Shining A Light on PANS/PANDAS with Kyra Dugan.
Visit my blog, Shine a Light on PANS/PANDAS.
4 comments to There is HOPE for Healing
Amy
July 11, 2024Agreed, no one should be misdiagnosed in the present age. Thanks for sharing Kyra
Kyra Dugan
July 15, 2024You’re welcome and agree!!!
Kyra Dugan
July 15, 2024Thank you so much Gabriella and Aspire, for sharing my story with PANS/AE and all that you are doing and have done to help raise awareness for these conditions and help for others like me! You are heroes in my eyes and this website is a wealth of information to help those with these conditions who need answers and direction. I can’t say thank you enough!
Gabriella True
July 17, 2024Kyra!!
We couldn’t raise awareness without people like you sharing your story! All the PANS Patients and families are the heroes!! Thank you so much for being part of the efforts to raise hope and understanding.