My story ended positively after many challenges but many do not due to the amount of misdiagnosis and lack of understanding around Lyme disease. We must continue to raise awareness and encourage the health arena to think outside of the box.
An excerpt from my book Living Life in the Limelight, depicts the early challenges I experienced and the challenges we initially had with the Lyme diagnosis
“The doctor says you have Lyme Disease,” she told me, as if that was supposed to make perfect sense to me.
“Lime Disease?” I asked, still not believing I’d understood her correctly.
“Lyme Disease, L-Y-M-E,” she explained patiently. “It’s an illness that’s transmitted by ticks and can cause all manner of symptoms, such as the ones you’ve had.”
Truthfully, I didn’t know what to think. It was a known illness after all. Was this something new or was it the reason I’d been so sick all along? Why couldn’t they have diagnosed me a long time ago? I felt a little angry and cheated at that thought. I missed out on a lot through childhood because of this. I had to give up ballet, my dreams of Julliard. I’d shrunk. I even had to give up band. What did it mean that I had something called Lyme Disease? That was the first question I asked.
“It means they know how to treat it now,” Mum answered. “According to the doctor, you’ll need to take two weeks of antibiotics, and you should be cured. There’s a Center of Disease Control standard protocol for treatment which he’s following.”
“That’s it? Two weeks of medicine and I’ll be better?”
It couldn’t be true. Two weeks and I could go on to live a normal life? No more weakness. No more getting sick. I didn’t even need to go to the hospital for it. Would my allergies go away? Just how much of what was wrong with me was the Lyme?
Mum didn’t have all the answers of course, but she did stop me before I got too excited.
“There’s a possibility there could be other problems,” she warned. “The doctor said there are some patients who struggle with chronic Lyme Disease, so we need to be prepared for that possibility. Something strange, he mentioned treating Lyme can be very risky for both the patient and the doctor.”
“What’s that supposed to mean?” I asked.
What I learned about Lyme Disease that afternoon was that it is indeed an illness that is most often carried by ticks. Even though most people associate it with the East Coast region, ticks of all kinds can carry the illness and transmit it from one side of the country to the other. Because of that, Lyme Disease is not limited to a specific geographic region. I also learned that the symptoms of Lyme Disease can mimic the symptoms of other illnesses, such as chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and several psychiatric illnesses like depression, all of which I had been tested for with, of course, negative results. Treatment was supposed to be a simple two-week regimen of a specific type of antibiotic. After that, the patient was supposed to be cured with no further complications. While we didn’t understand what the doctor meant when he said it was risky to treat, we would soon learn.
At that point in time, not much was understood about Lyme Disease, even within the medical community, so it was not so unusual that when all these tests came back negative the doctors were puzzled rather than immediately thinking to run tests for Lyme. Today, the medical community is more informed about this problem, so they are more alert for these kinds of indicators, but it can still be a tricky disease.
When my father came home later that evening, he brought with him the specially compounded doxycycline the doctor had prescribed. As I said before, it’s surprising where dairy products can turn up, even in some of the most often prescribed medications.
As with most antibiotics, it was recommended it be taken after a meal, so we sat down as a family to share a celebratory feast. My boyfriend was even invited to join us as we gave thanks for the food and the answers. We had fresh (crustless) pumpkin pie, modified to remove all dairy of course, for a celebration dessert. It had taken Mum several trials and errors before she finally achieved the recipe that worked, another testament to how hard everyone had worked to keep me alive this far.
I was excited as I shook out the first of the gigantic horse pills. It dropped heavily on my tongue and I took a huge gulp of water to help force it down my throat. Closing my eyes, I envisioned where I would be in two weeks. Back at school, sitting in the cafeteria with my friends, holding hands in the hallways, maybe even jumping around from one walkway to another like the others did. I could get back in the band—I hadn’t really missed all that much time yet. It would even be nice to get back to the familiar routine of classes and homework.
Maybe I’d finally have a chance to experience what it felt like to be young.
For two weeks, I took my antibiotics faithfully, but they weren’t having the effect we expected. My best night was the night we celebrated having an answer. I kept eating and taking my pills, trying to do my homework, but I continued to lose weight even faster than before. It didn’t seem like I had any more flesh left to lose, but my body kept getting slimmer no matter how much I ate. And my energy levels were dropping.
At this point, I had already moved more or less permanently into the sunroom, not having the energy to get off the couch. My periods of waking hours were getting shorter and shorter, and I was barely able to focus on my homework even at my best times.
Of course, my parents noticed I wasn’t getting any better. I could barely sit through a church service and felt bad about the looks my family received from some of the parishioners. Plucking up my strength to get to the car one day, I heard one of the ladies talking with my mother.
“Why don’t you just take her to John Hopkins?” she said, probably trying to be helpful.
“If it were me, I’d take her to Hershey Medical,” another woman chimed in uninvited.
“Have you tried CHOP?” someone else poked in.
As it turned out, no one wanted to treat someone with Lyme Disease. John Hopkins told us there was a six-month waiting list to be treated there. Hershey was non-committal and avoided discussion. Later, they would tell us they couldn’t help us. It seemed treating Lyme Disease was a risk no medical facility wanted to accept, and we still didn’t know quite why.
I’d taken my last antibiotic that early November morning and felt myself drifting away. That was the day my daddy brought his friends from church, the day they prayed for me and the day I told my daddy I loved him, but I was dying….
Read the rest in my book: