Our Experience with Lyme Disease

I wanted to share our recent experience regarding Lyme disease solely for educational purposes and to spread awareness to parents/guardians and my friends!

These are images of the body rash, oral ulcers and Erythema-Migrans (seen as the red streak down my daughter's face) that my daughter experienced from Lyme disease. For those that are unfamiliar with Lyme Disease, it is an inflammatory disease that is caused by bacteria transmitted by ticks.

My daughter Lily, age 3, recently experienced an array of symptoms over a weeks time that included a high fever of 103/104 daily, an intermittent red blotchy rash, an episode of hot and itchy hives, stomach pain, vomiting, oral ulcers and extreme fatigue. We were directed to the emergency room by her pediatric office. We brought her to the ER and spent a total of 24 hours there over a three day period undergoing endless tests, lab work, exams and sharing medical history and current symptoms over and over to various providers and nurses.

At the time of our first ER visit, Lily was experiencing a mild grade fever, oral ulcers, stomach pain, vomiting and a blotchy faint red rash with undefined borders. Her lab work returned nearly normal except for a slightly elevated white blood cell count and a CRP of 15 (the bodies inflammatory response also known as C-Reactive Protein) This puzzled the providers leading to further questions...and a broader range of potential diagnoses.

Throughout our stay I requested a tick panel as at-least five of my family members have contracted Lyme disease and I nearly lost my dad to undiagnosed Lyme disease last year. Unfortunately my request was denied and we were sent home with a diagnosis of a viral infection and potential autoimmune disorder of either Behcet's Disease or PFAPA. We made it about 10 hours at home before Lily was complaining of neck pain, her rash and oral ulcers were notably worse, she was lethargic and her temperature was significantly elevated. A second trip to the ER was made. Another round of labs and tests. Her white blood cell count remained essentially the same, but her inflammatory response jumped 15 points indicating her body was clearly fighting something. Again, all other labs were normal. Several doctors and nurses collected further information, completed exams and discussed each potential diagnosis. Lily during her second visit to the ER had a very distinct red streak down the right side of her face, blotchy red rash with dusky centers, fatigue, fever, oral ulcers and vomiting. The providers ruled out leukemia, stomach cancer, MIS-C, urinary tract infection, salmonella, E-Coli, COVID and rheumatoid arthritis. We made multiple more requests for a tick panel. A tick panel was finally ordered, but unfortunately takes 24-72 hours to result. Again, we were sent home with nearly the same diagnosis of a viral infection, possible underlying autoimmune disorder and it was recommended that we follow up to rule out Kawasaki disease (an inflammatory disease that causes inflammation in the walls of blood vessels.) We left the ER concerned and uneasy about the lack of a confident diagnosis.

Lily managed alright through the following day, but with worsening symptoms. This time with a very distinct rash, high fever, fatigue, continued oral ulcers and now a much more bold and very distinct red streak down the right side of her face. I couldn't settle with the information we had received from the hospital so I collected photos and symptoms and called the on-call provider associated with my daughter's pediatric office. My intention was to express what we'd experienced at the hospital and my continued concerns regarding my daughter's unresolved symptoms. The provider reviewed the photos and symptoms and immediately diagnosed her with Disseminated Lyme Disease (meaning it had spread throughout her body.) The provider ordered antibiotics and Lily had her first dose within 30 minutes of the phone call. Within 12 hours, Lily began to recover. Three Days after her diagnosis of Lyme, we received a phone call from the hospital confirming that the tick panel came back positive for Lyme disease. Now, 5 days later, she's nearly 100% better with a very good chance of being Lyme free and not suffering any long term effects.

Unfortunately, this is not my first experience with being denied a tick panel. It took me 8 months, several doctors and three ER trips to get a tick panel completed for my dad. By the end of the 8 months, my dad was unable to eat, walk or care for himself and became completely dependent of care. Days before his diagnosis of Lyme disease, end of life care was discussed and pursued. Terrifyingly, this could have been my three year old daughter.

The purpose of this post is not to disrespect the hospital or staff of which we received care, it is however, intended to bring awareness to three major points. First, it is to bring awareness to parents with young children who's symptoms may not present clinically as Lyme disease. Second, to bring awareness to what Lyme disease may look like in a young child and the very real possibility of misdiagnosis of a disease with a similar presentation and third, it's a huge cry to ADVOCATE FOR YOUR CHILDREN.

Maine is one of the leading states if not THE leading state in the country for the number of Lyme disease diagnoses. It blows me away that it isn't standard for tick panels to be completed for unknown illnesses. It's especially mind boggling to me how many times my husband and I had to request a tick panel before it was ordered. Please, please advocate for your children...

Also! If you're a Maine resident, check your children for ticks, every square inch of them. They can be the size of a pen point and I clearly and heartbreakingly missed one. Lyme can be debilitating and reeks havoc on tiny systems like my daughter. I wouldn't wish this experience on anyone! Please be aware and proactive!

Sincerely, A Concerned Mom

FYI: I've learned that the well known bullseye rash is not always present and the streak down my daughter's face is actually the indication of the tick bite.