Lynn’s Lyme Story
Why do you sleep all the time? Get up and move and you will feel better. They said it time and time again. They still do. The fatigue is just part of my journey to figuring out what invaded and altered my body.
I still have the medical record where a pediatrician treated me for a bug bite at 10 years old. I grew up in a wooded, rural area where kids ran barefoot and were covered in bug bites all year. There were certainly ticks. In the 1970s, it wasn’t common to apply bug repellent to protect yourself in your own backyard.
Some time in college, the fatigue took control. By my 20s, I would regularly sleep at least 13-14 hours at a time. I began showing arthritis symptoms in my hands, had months-long infections of all kinds, and shooting nerve pain started along the side of my face and head. No doctor could put all the symptoms together. When I progressed later in my 30s, it was suggested that I had a connective tissue disorder and I was given medications to relieve symptoms. Treatment was just temporary.
By the time I turned 40, my knees started to buckle, were inflamed, and always hurting. My lower back would lock, my jaws throbbed and I spent hours a day in physical therapy with little relief. I was struggling with my mental health as I battled nonstop pain and fatigue while trying to work and raise two children. Every day, I felt like I was falling apart.
At only 45 years old, I needed a knee joint replacement and that surgery pulled to the forefront every symptom I had ever had, all at once. The combination and misery finally proved to doctors that something more was wrong. The diagnosis was Lupus, the classic label often misused instead of Lyme Disease. Just like Lyme, there is no cure and you treat the symptoms. The medication given was a bucket full of prescription pills to take each morning and night. I was functioning, but not like I needed or wanted to.
When a friend suggested I be tested for Lyme Disease, I initially resisted. I had a label but something told me it wasn’t the right one. I was now starting to watch my son develop symptoms mimicking mine, so we needed to address his illness, too. When we both submitted and took the Igenex tests, I was astonished, relieved and sad all at once. We finally had a name, some answers and some options. Thankfully, we found a Lyme Literate Doctor who could help.
Today, at age 54, I am feeling pretty good. I have made lifestyle changes and discovered medications and supplements that are working for my body right now. Only this year did I discover the Illinois Lyme Association. Knowing that there are so many other patients like me is so helpful. I have met and talked with others who finally understand the frustrations of the Lyme battle. I see the great work that ILA is doing in our state to educate the public and represent Lyme patients and it gives me hope. Illinois is a leader in Lyme awareness and I am starting to contribute volunteer time to helping ILA further their goal. I don’t want another family to have to battle alone or struggle to find a diagnosis, treatment or resources.