It’s been almost one year since I discovered a bulls eye rash on my youngest daughter’s skin.
Seems like yesterday and a million years ago all at the same time. Funny how life altering events continue to feel that way as time moves along.
When I saw the rash I immediately remembered that I had pulled a tick off her in that exact spot a month prior. I knew what that rash could mean, but I didn’t actually think Lyme Disease could happen to us. This rash just happened to pop up during a very stressful loss in our family. I felt I was coming from a place of so much stress and worry that I was surely overreacting to what was probably a random bug bite. I snapped a quick picture with my phone, then put the whole incident on the back burner.
A few weeks passed by and I noticed our daughter was loosing weight. Loosing it to a point I felt it was more than just a growing ‘up’ phase. I took her into our pediatrician who ordered blood work and I showed him the photo of the rash (by then it was no longer visible on her skin). His response was passive, as he felt Lyme was not present in Idaho, but I insisted on getting her tested. I remember my heart pounding as they took vials of blood from my crying six year old at the children’s hospital. Was I doing the right thing? Was I overreacting?? I was nervous, scared…. but trying to remain optimistic. Over a week later I got a call. She tested positive for Lyme on both the Western Blot and the ELISA test.
Cue the shock. The tears. The feeling of helplessness.
I was told there was no cure. Two weeks of antibiotics and that’s it. No follow up. Nothing. She will always test positive he said. I knew from my limited knowledge that Lyme has the potential to rob you of your quality of life. I had seen it happen, and now the vision of the future for my little first grader looked tainted with lifelong pain and struggle. I was devastated and, quite frankly, pissed off that this was the only answer I was being given.
I was then contacted by a CDC outlet who asked me all sorts of questions, with the main focus being on where we had traveled. I pulled that tick off her after she had been playing outside locally. In Idaho. Yes, we had been to Oregon and California during the summer, but that was four months before the tick and rash…all signs pointed to home. I felt like I wasn’t being heard on many levels and it was so frustrating.
So I wrote a post that I shared on social media. Maybe you read it. Maybe you’re one of the amazing people who shared it, reached out, offered advice or put me into contact with others who have Lyme knowledge.
It was the best move I could of made. The post was shared by a friend, who shared with a friend of a friend who then got in touch with me. A total stranger. A life changer. She was able to connect us with an amazing Lyme Literate Doctor who took Reese in the day after I called (even though they didn’t have any official openings for months!). As soon as we walked in I knew it was the right place for us. We finally had a game plan. We were being heard! Reese has been in treatment with her for 9 months and will continue until tests results yield no traces of Lyme. We have hope.
There is so much more to Lyme than I could even get into in one post. I have read so many books, talked to many people with years of experience, and reached out to Lyme advocates and alliances. Let me just say that learning about it has infuriated me. Lyme is scary, complicated and carries an unfortunate stigma due to its complexity. It’s been dubbed the great ‘imitator’ because its symptoms look like so many other ailments and diseases… Alzheimers, dementia, fibromyalgia, arthritis, IBS just to name a few. It hides in your body and can go through cycles, or remain dormant for years just waiting to emerge. It can leave your bloodstream invading your organs and even cross the blood-brain barrier. For some people with Lyme their lives seem to go on unaffected, but for many it can be absolutely crippling. It’s a scary opponent to face down as a small six year old and a terrifying thing to digest as a parent.
I feel there is going to be a change. The more people who speak out about their experience with Lyme, Avril Lavigne, Shania Twain, Ali Hilfiger, Laura Lynne Jackson…the more attention it’s going to get. I may never be able to reach the kind of audience those big names can, but I can share the signs of Lyme with my friends. I can post preventative reminders on Instagram. I can write this blog. I’m looking for a platform to shout from, and maybe I will just need to build it here, in my little corner of the internet.
If you have a Lyme Disease story you would like to share, or you’re looking for more info on Lyme, or you just need someone to rally with as you fight Lyme, please contact me through Instagram. I would love to talk to you, listen and offer support!