The fevers started in January 2017. At first, we thought it was just a viral infection, but the fevers kept raging. The doctors thought it was strep, viral, and so on until blood work was done and the outcome was mono. But it was not mono, it was something much worse, it was Lyme’s disease, that became systemic and neurological.
For eight straight months, my son James was sick; physically, he was lethargic, tired, had constant fevers, body aches, headaches, loss of appetite and more. After months of seeing doctors, incorrect diagnoses and multiple blood tests, it was finally identified that James had Lyme’s disease. In having found no tick or hallmark bullseye, it was not easy to diagnose him, as testing for Lyme happens when one or the other is observed. James started 21 days of antibiotics which seemed to help, but within a few months, James was sick again. This time was different. Physically, he began to have some of the same symptoms, but it was his neurological issues that took hold. James developed severe anxiety and depression. At the time, we had no idea it was because of Lyme’s disease. We thought we were past that since he took medicine and his fevers were gone. The counselor at school recommended we see a therapist immediately.
At first, James did not respond well to therapy and we made no progress. There were always toys about during therapy, which helped James open up from time to time. When there was a pad of paper and some crayons at the session the journey began that would heal my son. After about a month of James coloring during his session, his therapist recommended we see an Art Therapist because she felt James would respond better if he could visually express what was happening to him. Upon her recommendation, we began seeing a- Board Certified, Registered Art Therapist (ATR-BC) who was also an LCAT (Licensed Creative Arts Therapist). The first few sessions were very similar with a singular focus on James drawing. Honestly, what he created frightened me. His drawings were scary and dark. I had no idea what he was conveying, but his Art Therapist did. In time, a few more art mediums were introduced, such as paint and collage. Each session and medium helped James express experiences and feelings he could not put in words.
After three months of sessions, we met with his therapist, who said James was experiencing obsessive-compulsive disorders disordered eating, Agoraphobia, and Dermatillomania. At this meeting, she had asked if a Lyme Specialist treated James, which was not the case. James’s pediatrician diagnosed and treated him. Our therapist had a history of seeing Lyme patients with similar comorbidities and she suggested we take James to a specialist. Being from an upstate New York community, when I sought references for someone within my network it became evident that many friends and colleagues had similar neurological issues with their own Lyme diagnosis. We were able to identify a specialist quickly.
Immediately James’s specialist ran more tests. James had not only Neuropsychiatric Lyme Borreliosis but also multiple other tick-borne co-infections: Anaplasmosis, Babesiosis, Bartonella, and Rickettsia. We were in shock. A comprehensive treatment plan of antibiotics, probiotics, diet change, and continued art therapy saved my son. James was on antibiotics for over six months. It was through his therapy that James came back to us. After a few months of treatment, while attending a session, James shared some of his art and what he was communicating. One-piece was his body eating him and another was him being trapped in a pit, a collage of images chaotically scattered. His expressions in art therapy show despair, pain, and fear, which was heartbreaking to see as a parent. This was the first time he was comfortable talking about what was happening to him. Several times I attended similar sessions where James used his art to start communication, and we were able to meaningfully connect.
While no longer in treatment, James still uses art to reduce and manage stress and communicate with us from time to time. Lyme Disease traumatizes the person infected, and those who have to watch someone they love suffer from mystifying symptoms. I often wonder if I should have found an art therapist to help me with the trauma I experienced vicariously from my son’s illness, not to mention all the other “stuff” of life. While we were on a Lyme journey with James and there were always uncertainties, we learned one thing for sure. Art therapy works and knowing that brings such comfort.
LeeAnn Mandrillo, MPA
Executive Director, Art Therapy Credentials Board