My son's Lyme disease was finally diagnosed thanks to my gut instinct
We live in New England, where ticks and cases of Lyme disease unfortunately are a part of life. In fact, my son contracted Lyme last summer. Fortunately then, we caught it right away and got him started on a short course of medication. However, this summer, when he came down with a mysterious illness, my concerns about Lyme were brushed off until I finally found a doctor willing to listen to me. And what do you know: My son has Lyme disease. Again.
A little over a month ago, we found a tick on the back of my son's leg. Not super surprising, as we love being outdoors and going for hikes, but we always end our days with a tick check. Due to him having had Lyme disease the previous summer, I opted to be on the cautious side and took the tick to our nearest lab to be tested. It came back a week later negative for Lyme.
About a week after that, my son broke out in a rash. It was a bit circular in nature, but it was nowhere near his leg; it was circling his armpit. It didn't seem to bother him all that much, so I just kept an eye on it. Then, more symptoms started appearing. He was tired all the time even though he was getting enough sleep. I chalked it up to spending full and busy days outside at camp. His arm hurt and sometimes tingled, but we told him it was probably growing pains or a pulled muscle. Then the rash kept growing. I took him to his primary care provider and explained everything. Toward the end of my description I asked, "Could it be Lyme?" Because once I laid out all the symptoms together, it was awfully indicative of Lyme. But the doctor brushed it off, saying the tick we tested was negative and that the rash was probably a fungus and the arm pain a result of overactive playing.
Something inside me didn't feel super confident in that, but I tried to let it go. And I did, until a week later when he came home from spending time at my parents' house and the rash had spread down the entirety of the right side of his torso, was fully flushed and incredibly hot to the touch. His primary care provider was on vacation, but we were able to see another doctor. Again I brought up the possibility of Lyme, but this doctor was even quicker to dismiss me, saying it was most likely a viral infection and would work its way out of his system.
I quickly became frustrated as I observed his rash daily. My son was growing frustrated with me and my anxiety. I knew something wasn't right, but two doctors had already brushed off my concerns, and what if I was catastrophizing it due to my slight hypochondria? But I kept pushing and got him in to see a dermatologist. Because if this was fungal, then at least we could get a cream out of it. The doctor immediately ruled out fungal, and after listening to my concerns and synopsis of all the symptoms and previous diagnoses, he strongly urged us to get his blood tested for Lyme. He thought that, despite our careful screening, we might have missed another tick that caused this.
I was happy my concerns were finally being taken seriously. A week after getting his blood drawn, we got the results, and it was abundantly clear that my son does indeed have Lyme disease and will need a longer/stronger course of medicines than if we had found this earlier. This is certainly not a case where I feel any joy over being right. In fact, I feel frustrated, defeated and very, very angry.
My husband is a pharmacist, and I understand that people self-diagnosing or treating themselves can lead to disastrous results at times. But I wasn't trying to prove I knew better than the doctors — I just wanted my gut intuition to be taken seriously and for my son to get better, and instead I got brushed off.
As parents, we are the ones who are with our kids the most. We are the ones trained to pick up on changes in behavior or something like skin issues. While I may not know all the whys or hows, I know enough to trust my instinct and be my child's advocate. If this situation taught me anything, it's to listen to that little voice that tosses up the red flags and to push until all questions are answered.