Mother of infected son wishes to spread word of the dangers of this disease.
According to the Centers for Disease Control, approximately 300,000 people are diagnosed with Lyme Disease each year in the United States. However, Medford resident Libby Majewski has been trying to spread awareness of the impact of the disease at the local level stemming from the 8-year misdiagnosis of her son, Liam.
Majewski first knew something was wrong in 2014 when Liam fell very ill. After going from doctor to doctor, the family was left without definitive answers.
“We suspect he contracted Lyme and other tick-borne infections when he was about 7 years old, but we are not absolutely sure of the exact time,” Majewski said. “We do know he had an onset of symptoms when he was 7.5 years old and going into second grade.”
A lover of the outdoors, Liam took full advantage of living in the Pinelands. A Cub Scout and Boy Scout with Troop 26 for many years, he was often outside camping and hiking, and these activities translated into being bitten by many ticks.
“We would often contact the pediatrician to tell them that we removed a tick, and they would say they would not treat [Liam] unless he became symptomatic over the following couple of weeks,” Majewski said. “As a mom of four kids, it was hard to track that kind of timeline, and he suffered mostly from neurological symptoms which we had no idea could be symptoms of tick-borne illnesses.”
However, even with knowledge of these bites, and after various appointments with top doctors in South Jersey — pediatricians, neurologists, therapists, psychiatrists, psychologists and endocrinologists — none suggested his symptoms were related to his immune system, which is often compromised by Lyme.
Instead, Liam was first diagnosed with ADHD, although Majewski said he never really fit that profile and had many more symptoms than just ADHD. Next, from age 8 to 15, he was diagnosed with multiple neurological issues, and later he was additionally, and still incorrectly, diagnosed with Generalized Anxiety Disorder, OCD tendencies and Severe Mood Disorder/Not Otherwise Specified.
“It was a very long, isolating and confusing process,” Majewski said. “We realized things were getting worse because he was not growing. He was 81 pounds and severely malnourished, a mother’s worst nightmare to be told by an endocrinologist.”
From there, things continued to worsen before they got better. Although Liam never appeared to have the bullseye rash commonly associated with Lyme Disease, his illness was taking over his life. He was at risk of missing his growth spurt, he struggled at home, school and in extracurricular activities and had to miss the 2014–2015 school year.
“After being out of a school, you start to get bored, but between the fatigues and aches I couldn’t do much,” Liam said. “Sitting at home didn’t help much either.”
At this point, Liam could not leave the house. He stopped being able to read and write, and a psychiatrist Liam had been seeing wanted to layer on even more diagnoses. However, the Majewski family instead decided to pursue other doctors in search for more promising answers.
Almost a decade later, it took the family traveling three hours away to Connecticut to Dr. Denis A. Bouboulis, who properly diagnosed Liam. The specialist of the treatment of allergies, asthma and immunology in children and adult relayed to the family he had an autoimmune disorder called Pediatric Autoimmune NeuroPsychiatric Syndrome.
“He took one look at Liam and his history and said ‘This is PANS and it’s triggered by Lyme Disease and other tick-borne infections. He’s going to get better but it will take some time,’” Majewski said.
Since his diagnoses of chronic Lyme, Liam has stopped taking 90 percent off the medication other doctors had given him for the wrong conditions. He has grown before his family’s eyes and is now doing extremely well in school. More than halfway through his junior year, he has started to look at colleges and is considering careers in journalism, film or education. He also works part-time at Medford Leas, is driving and enjoying life with friends.
“People always ask me how I feel or say ‘man that sucks that happened,’ but I try not to dwell on it,” Liam said. “It wasn’t all bad, and because I had time at home, I fell in love with cinema. I try to think about the good stuff.”
While Liam is working his way back to full health, Majewski remains unsettled by the lengthy process it took to receive his diagnoses. She admits she struggled with a lot of anger toward the doctors she trusted her son with for so many years and whom never once thought to look at his immune system.
“When we got the diagnosis of Lyme and other tick-borne illnesses (babesia duncani, Bartonella, Anaplasmosis) I was dumbfounded,” Majewski said. “How could this happen? How was this missed?”
Yet, according to the Lyme Disease Association website, “Lyme is a multisystemic disease, and the Lyme disease bacterium, Borrelia burgdorferi (Bb), may be found in many different organs, although it is often difficult to test for and to culture.” For this reason, misdiagnosis actually occurs quite frequently.
To help spread awareness of her findings since her son’s diagnosis, Majewski has started a Facebook group called “Medford Area Lyme Disease Group,” and has more than 210 members who connect regularly about finding resources for testing and treatment. She explained that since establishing the group, which meets at the Pinelands Branch Library, she has heard from four other local families who have similar struggles to have their children diagnosed and treated. She has also come in contact with a woman in her early 40s who is now severely disabled from Lyme Disease.
“I know of other children just in Medford who have suffered for years with this illness after tick bites with no appropriate testing, diagnosis or treatment,” said Majewski, who moved to the township in 2002.
Furthering her efforts, Majewski has helped organize a presentation featuring Pat Smith, president of the New Jersey-based Lyme Disease Association, Inc. Smith will be speaking at Larchmont Elementary School, located at 301 Larchmont Blvd. in Mt. Laurel, on Monday, March 13, at 7 p.m. to discuss how to families can protect themselves from the local spread of tick-borne diseases.
“It’s been determined that we are in an endemic area. Burlington County has one of the highest rates of reported cases in the state,” Majewski said. “Take that and couple it with the fact that we are in the Pinelands with deer in our backyard and kids playing in lakes, on trails, etc.”
Knowing of the importance of this message in the nearby communities, Majewski wishes to tell her family’s story so another family can potentially avoid having a similar experience. One of the most important things she thinks parents need to know is multiple diagnoses for a child is a red flag that something is going on with their immune system.
She explained local parents should also know ticks transmit bacteria that quickly leaves the bloodstream and goes into organs of the body and the central nervous system. According to Majewski, blood tests from standard labs are unreliable as they are a coin-flip as far as getting a reliable result.
She added primary doctors and pediatricians in the area are unfortunately only relying on the paper in front of them, and when it says a child’s Western Blot is negative, they turn to the parent and say “Your child does not have Lyme.”
For this reason, she suggests those with possible cases of Lyme see a specialist called a Lyme literate medical doctor who is trained by ILADS, and who does not rely on regular labs for Lyme testing. She concluded that Lyme is a clinical diagnosis and patients have to find a doctor who will treat the person and not just the paper in front of them.
