Libby Gerhardt: Plasmapheresis at Hoxworth helps young woman overcome rare diagnosis
From an outsider's perspective, 21-year-old Libby Gerhardt appears to have her life all figured out. A senior at Mount Saint Joseph University with an infectious smile and beaming personality, Libby is studying graphic design and already has a job lined up after graduation. In her spare time, she does freelance design work and enjoys playing soccer and spending time with friends and family. By all accounts, she is successful, happy, and her future is full of promise.
However, there was a time when Libby's life was nearly derailed by a rare condition called PANDAS. It is thanks to the therapeutic apheresis program at Hoxworth Blood Center, not to mention her sheer determination, that she is doing as well as she is today.
Libby's diagnosis and struggle with PANDAS came completely out of the blue; as she puts it, "I lived a completely normal and healthy life until my freshman year of high school." Libby grew up in Oakley and went to The Seven Hills School from Pre-K though high school, and lived a ordinary, happy life until she was fourteen years old.
"I was fourteen years old when I developed PANDAS," Libby recalls. "I went to my older sister's 17th birthday party with her and her friend at Habachi Grill in Hyde Park. I used to eat seafood all of the time but had not had it in several years; one of my sister's friends convinced to have a bite of her shrimp and immediately my tongue became very itchy, my chest felt extremely heavy and it became very difficult to breathe."
With her throat getting tighter and breathing getting more difficult, Libby knew she needed medical attention. "My mom picked me up and sped to the emergency room. While in the car my eyes were closing and my tongue was so swollen it could no longer fit inside my mouth."
Libby ended up in the emergency room at Jewish Hospital, where doctors immediately recognized the severity of her allergic reaction and administered treatment--but had trouble getting her to breathe independently. "They could not get me to breathe on my own, even after intubating me, and said they were going to have to transfer me to Cincinnati Children's Hospital Medical Center because they could not get me to breathe on my own," she says.
"Finally around one in the morning, I was able to breathe. I went home that night and had trouble sleeping, not knowing that overnight my whole life was about to change."
The day following her severe allergic reaction, Libby was suddenly plagued with symptoms resembling those of Obsessive-Compulsive Disorder (OCD). "I felt the need to touch things, tap things, repeat things. I had no idea what was going on, but it was very distressful and I could not fight the urge," Libby recalls. "My mom and I thought maybe it was my ADHD meds giving me tics. We went to the doctor where they lowered my dose but that seemed to do nothing. It was only getting worse."
This started some of the most difficult, painful years of Libby's life to date--her OCD symptoms, as well as her personality changes, had completely upended her day-to-day life, leaving her feeling helpless and numb.
"lt was as if I had become a completely different person overnight," Libby says. "I was trapped inside my own mind. It would take two hours to brush my teeth or sometimes three to get inside of the house. I could no longer go to school, and it was too hard to use the restroom or leave my room so I began urinating in cups and living them around the house."
Her symptoms persisted for years, despite repeated doctors' visits, treatment protocols, and exercises in therapy. Her entire personality had changed--going from bubbly and active to irritable and hopeless. "It was a battle for four years, not truly knowing what was going on," she remembers. "I was working so hard and nothing was changing."
Finally, the term PANDAS was mentioned. "My psychiatrist and therapist mentioned to my mom that this was not just OCD, but something called PANDAS."
Dr. Jeffrey Papiernik, the Assistant Medical Director at Hoxworth Blood Center, explains, "PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Libby actually has a more inclusive diagnosis called PANS (pediatric acute-onset neuropsychiatric syndrome), with the difference being that PANS is triggered by other infectious agents (not just strep) or other non-infectious triggers. In Libby's case, the trigger seems to be a food allergy to shellfish."
"With these diseases, the most likely explanation is that infectious or other environmental triggers create a misdirected immune system," he continues. "In the case of PANDAS, for example, when the body amounts an immune response to, say, a strep throat infection, the antibodies created against the bacteria can sometimes cross-react with the person's own tissues. Specifically, these antibodies enter the brain and react with dopamine receptors in an area termed the basal ganglia. The basal ganglia are associated with a variety of functions including control of voluntary movements, procedural learning, eye movements, cognition and emotion, and routine behaviors or 'habits.' So you can imagine how antibodies binding to areas in this part of the brain can create issues for these patients, including movement disorders such as obsessive compulsive disorder.''
On the recommendation of her doctors, Libby and her mother traveled to a clinic specializing in PANDAS in Cleveland, Ohio. "The doctor there asked lot of questions and told us it was not PANDAS, but just to make sure he did blood tests," she says.
A few weeks later, Libby's mother received a call from the physician in Cleveland. "He told her that he would have bet his next paycheck that I did not have PANDAS, but he said my blood result were 'screaming PANDAS," Libby remembers. "A normal person's Strep levels are around 150, but mine were 950. The results showed that I had had step, Lyme disease, mono and the allergic reaction on top of it. He said my immune system had collapsed on itself."
After so many years of battling her symptoms, Libby says it was an incredible relief to finally have a diagnosis-and to start a course of action to treat her condition. First, courses of heavy antibiotics were administered, and Libby continued to visit different doctors for consultations and treatment. One allergist was skeptical of the diagnosis, but "he did a responsive test to my immune system and gave me a pneumonia vaccine to see how my system would react," Libby says. "My immune system could not handle the vaccine and became paralyzed. My symptoms were through the roof; I could not go to school or do anything." Her reaction confirmed that PANDAS caused her symptoms.
It was soon after this confirmation that Libby and her family were referred to Hoxworth Blood Center, where she met Dr. Medlin and Sue Pinkard--but Libby admits she was doubtful at first.
"Sue Pinkard told my mom that everything was going to be okay, and they were going get us through this--but I had been to so many doctors who did not help that I did not believe them at all," she says. "And when I told Dr. Medlin about my symptoms, he said 'What? You have OCD symptoms? That is crazy!' I was skeptical that they could help me at all."
"But the next day when I came back to receive plasmapheresis, he knew all about PANDAS; he had done his own research to understand and help me," she continued. "I knew that these doctors and nurses cared."
Dr. Papiernik notes that plasmapheresis can help reduce the symptoms of PANDAS or PANS "because antibodies reside at least partially in our blood stream. In plasma exchange, the patient's blood is removed and centrifuged so that it becomes divided up into various components like red cells, white cells, and plasma," he says. "The plasma component containing the problematic antibodies is removed, discarded, and replaced with either donated plasma or a derivative called albumin. Over time and after a number of plasma exchange treatments, the levels of the causative antibody fall and symptoms improve."
Libby went through seven rounds of plasmapheresis at Hoxworth, and the results were astounding.
"Within two weeks, I was myself again. It was unbelievable," she says. "I had never felt relief until then. All of my symptoms were almost completely gone."
Plasmapheresis has changed Libby's life, though she does have to come back for more treatments about once or twice a year, or if she gets sick or experiences an allergic reactionabout six months after her initial treatment, an allergic reaction caused her symptoms to return, requiring another round of plasmapheresis treatments to reset her immune system. But she has no issues with coming back to Hoxworth for plasmapheresis, and credits Hoxworth with changing her life.
"I have had PANDAS for seven years now, and the only thing that truly is able to get me through my hardest times is Hoxworth and plasmapheresis," Libby says. "I have been receiving therapeutic apheresis less and less because I have learned how to take care of myself, but I do need it whenever I get sick and cannot push through it. But everyone at Hoxworth so friendly and kind that I do not mind coming back for treatment, especially with the relief and hope it gives me."
Looking at Libby now, it is hard to believe that PANDAS had once made her feel so hopeless. As she approaches graduation, she looks forward to her future in graphic design and continues to lead an active, healthy lifestyle that PANDAS once made so difficult--and she believes that Hoxworth played a key role in giving her life back.
"My future is much brighter and I am much more hopeful because of therapeutic apheresis," Libby says. "It truly has saved my life and given me relief no medicine ever has. I am able to live a normal life because of it, and be who I am instead of who PANDAS turns me into."
"I am passionate about sharing my story and helping others," she finishes. "It is so important that more people know about this diagnosis and how it can be helped. Plasmapheresis, and Hoxworth, has completely changed my life and I want my story to be told so it can change others' lives and so they know that they are not alone."