Meet Julia Patterson, New MontCo Leader
Finding Hope & Community in PA Lyme
Welcome to Julia Patterson, our new regional leader for PA Lyme - Montgomery County. Julia’s daughter, Rachel, is also serving PA Lyme as co-leader and facilitator for our online Young Adult Lyme Social Group (YALS) – read Rachel’s regional profile.
Julia takes of the reigns for leading the regional support group from Lee Gordon, who served in this role for a number of years and provided a lot of resources to the community before stepping aside. Lee also served on the PA Lyme Board of Directors. Thank you, Lee, for your leadership over the years!
Julia’s (and family’s) Lyme Journey
Julia is no stranger to Lyme disease. Like most with tick-borne infections, she spent years trying to find answers, bouncing between doctors and diagnosis. She also spent years searching for answers as to why her three children had so many elusive symptoms that worsened as they became older.
Growing up in the south, Julia moved to Pennsylvania in 1999. Looking back, she speculates that she likely had a tick bite and was infected with Lyme disease prior to Rachel’s birth in 2001. By 2004, she herself was experiencing severe migraines, crazy anxiety and viral symptoms without being sick. Doctors had no real explanations for her health issues.
A move in 2008 to North Carolina put the family living in a rental while their home was being built, exposing them to mold. Julia and Rachel both had severe pneumonia, and a cat was diagnosed with asthma. No one recollected tick bites, but the boys were in travel soccer with the entire family constantly spending hours on the grass, so the exposure risk was there. “Each of their illnesses seemed to come on suddenly, and I think concussions from sports particularly triggered symptoms in my youngest son,” Julia accounted. “Unfortunately, I think my two youngest were born with congenital Lyme.”
Fast forward to 2016, Julia and family moved back to Pennsylvania with two of the five family members sick, illnesses that continued to progress as each year passed. Rachel had just achieved National Merit Scholar, and the college offers and full ride scholarships had begun but a bout of flu knocked her out of attending school full-time junior year. She was diagnosed with auto-immune encephalitis and the family spent three years trying to get her IVIG, even denied by a leading health system/academic institution all the while being told the seizures weren’t real. Julia had other symptoms as well, written off as stress.
In 2018, mold testing came back positive for their current home, so they embarked on a two-week remediation; however, the mold was already causing illness. Like Rachel, her youngest son started having more health issues in middle school. His fatigue was incredible, and he was given an asthma diagnosis even though the inhalers did not help. He had night terrors and horrible pain in his shins the doctors said were growing pains. “How did I go from having three healthy children who were good students and athletes to this? Rachel was a competitive gymnast who was being trained for college competition until her back pain high school freshman year became unbearable. My youngest son was training in soccer with kids two years his senior and now didn’t have enough energy to make it through practice. My oldest son was offered D1 to play soccer for college now had back pain and was too exhausted to run. They all had personality changes too. My advice to parents: if you see things like this happening in your children’s lives, it’s not normal!”
“In April 2019, I spent more nights in the hospital with Rachel and the youngest than I spent at home,” Julia exasperatedly exclaimed. “Seizures, and syndromes diagnoses. The doctors had no ideas.” Her eldest son seemed healthy, but had developed back pain and exhaustion in college. While her primary care physician would test, the Lyme test always came back negative. Throughout this ordeal, Julia, who was self-employed, had to cancel contracts to care for her children and because her own health continued to deteriorate.
In 2020, Julia caught COVID and “never got better” and was bed bound “If my husband hadn’t been working from home full time, I don’t know how we would have made it”. Then in 2021, she saw two specialists – a podiatrist who saw the signs of tick-borne infection as his daughter was sick from it, and a nutritionist whose husband also had Lyme. They helped Julia recognize the symptoms and find a doctor to properly diagnose her. Finally with a Galaxy test, she received a Lyme positive test, although it was a weak positive due to mold exposure. It took 17 years and more than 26 specialists, including hospitalizations, for Julia to get a Lyme diagnosis. In turn, that diagnosis helped her get Rachel diagnosed as well as her youngest son who by this time had developed the Bartonella stria rash on his back.
Along the journey, Julia wouldn’t rule out the possibility of reinfections, partially due to their exposure risk with the woods in North Carolina, soccer fields and outdoor activities. Currently, Julia and Rachel are treating for mold, and with a hopeful tone Julia said, “We’re getting better.”
When Life Gives you Lemons, You Make Lemonade
One of the reasons Julia feels so much hope for the future is because of her eldest son’s journey. Upon receiving his undergraduate degree in biochemical engineering, he decided to go to medical school. While working as a medical assistant in a mainstream dermatology office, whose practitioners denied Lyme being real, he read the book, “Toxic,” by Neil Nathan, MD. A few months later, Julia saw his book copy highlighted in three different colors. Because the book addressed tick-borne disease from a scientific viewpoint, her son realized he had Lyme, got tested (it came back positive) and started treatment. While he was still on track to attend medical school, he shifted direction to study complementary medicine, with the goal of becoming a functional Lyme Literate Medical Doctor. He received his MS in Integrative Medicine & Health Sciences from Georgetown University and began studying at Drexel University College of Medicine this year where he is spearheading the Integrative Medicine Interest Group and is back to playing soccer.
Supporting the PA Lyme Community
Late last summer (2023), Julia found herself getting better, but still felt isolated. Getting on Facebook, she found Lyme communities that were extraordinarily helpful, one of them being the PA Lyme MontCo Lyme regional group. She felt so much better helping others through the online communities. After attending the Lily Bennet Mini-Golf fundraiser and the Quiet Epidemic screening in Philadelphia, and meeting some of the PA Lyme Board, Julia was inspired to get more involved and connect with others who understood what having Lyme was like. It’s true when they say, the healing power of the community can’t be overstated!
After helping with the 2024 PA Lyme Patient Conference, Julia asked about the MontCo regional group, and she recently took that over as the regional leader. She also is working to become a Certified Dare 2B Tick Aware facilitator to spread awareness and educate others on tick-borne disease prevention. Her husband who supported his family and never gave up on finding a true diagnosis also plans to get certified. Within the Montogomery County region, she has a goal of building a Lyme community that celebrates survivors and provides them with social connection. Julia asserted, “Through our journey in all of this, our mission today is to become a family that supports the Lyme community … each in our own way.”
It’s noteworthy to mention that PA Lyme is also working on a new brochure, Dare to Recognize. This piece will be geared toward parents, teachers and school nurses. Having negotiated tick-borne disease with children and the school system, Julia served as our parent reviewee.
Thank you, Julia, we’re so glad to have you join our PA Lyme team!
EDITOR’S NOTE: The more immersed I get in the PA Lyme Community, the more peoples’ stories resonate with me. While no experience is identical, the familiarities are there to my own journey, and this helps validate my experience. Perhaps some of the experiences in our regional spotlights resonate with you. I hope you take comfort in the fact that you are not alone on this journey. If you need support or resources, please reach out to the regional support group in your area!