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I've heard people with Lyme disease say that they wouldn't wish it on their worst enemy, so imagine how devastated I was when I found out a tick had infected my best friend.
It all started with a late summer FaceTime call during COVID-19. My friend, we'll call her Julia, wasn't feeling well and had a consistent low grade fever. She'd been tested for COVID-19 and it was negative. As she was describing what sounded like the "summer flu," all my alarm bells went off.
Sometimes my husband jokingly accuses me of thinking every symptom means someone has Lyme disease. But the reason is because people with Lyme have symptoms in every system of the body. But this felt different. This seemed more like an unmistakable case of Lyme disease. She'd recently stayed in a cabin in the woods in an endemic area. And until COVID-19, it was rare to have flu-like symptoms in the summer.
"You should get tested for Lyme disease," I told her.
With acute symptoms and her location, I hoped the doctors would agree to a simple Western blot test, which they did.
A few days later, Julia sent me a text that she was CDC positive for Lyme disease and offered three weeks of doxycycline.
She never saw a tick. She never had a rash. Had she not asked her doctor for the test, it's unlikely she would've gotten one.
Now that she had a positive test, it was time for action. I knew what was ahead of her if we didn't act quickly: debilitating symptoms and possibly a lifetime of multi-systemic illness.
I knew of a LLMD in her area and encouraged her to reach out to her. Unfortunately, because LLMDs sometimes don't take health insurance the bill would've been a whopping eight hundred dollars for a first appointment. Many of us have paid a lot of money for doctor's appointments, but this seemed outrageous for an acute infection. Instead, we turned to the ILADS provider finder. She was able to locate a Lyme Literate Nurse Practitioner and see her the following week.
From what Julia told me, I gathered this LLNP was knowledgeable and thorough. She elongated her course of antibiotics at least another week and looked for signs of co-infections. The LLNP took a conservative, but balanced approach and I felt she was in the hands of someone who actually understood the ramifications and complexities of this illness.
After reflecting on my high level of worry, I started to worry that I was worrying Julia. The reality was, she was in an acute situation, much different from my long term illness that I have had time to adjust to. This was brand new to her and she was seeing through the lens of my jaded, afflicted eyes. I changed my approach to one of reassurance. There was no evidence that anything bad was going to happen to her and she was in the care of a competent medical professional.
Julia reacted well to the antibiotics and didn't have any significant side effects. Her LLNP encouraged her to be diligent and pay attention to her body following the treatment protocol. If she experienced any achy joints, fever, or any other curious symptoms she should follow up right away.
I hate to think about what would've happened without swift action and a positive Western blot test. As the months passed, the bacteria would've found its way into her tissues and the likelihood of a clear diagnosis and treatment path would've become smaller and smaller.
Instead, this early intervention was what she needed to help her immune system beat Lyme disease. I am confident in her full recovery.
For anyone who has Lyme disease, we are used to the frequent calls and questions about tick bites. There is a lot of misinformation about tick bites and Lyme disease and our lived experience is a trusted source. For better or for worse, people often reach out to us first before even talking to a doctor.
Never underestimate the importance of the knowledge you gain from living with this disease. Because Lyme disease is so common in the United States and all over the world, you can help by recognizing symptoms early on and helping people access the right care. You are the first line of defense against this epidemic.
Personally, I can name three people in my relatively small circle of friends and family that have been diagnosed with Lyme disease. This is not counting the hundreds I know from the Lyme community. This is not a rare disease. This is a pervasive epidemic that is only expanding through climate change and lack of recognition.
For those of us with the chronic ramifications of Lyme disease, I am sorry you didn't have an intervention sooner. I'm sorry that even if you had an early intervention it wasn't the one you or your body needed. I'm sorry that this disease exists and that it has negatively impacted your life.
I think of my own experience and how I went undiagnosed for over 20 years after the tick bite. I think about how I went undiagnosed for 10 years after I started having serious symptoms that any LLMD would have easily identified as Lyme. I think about the ordeal I went through in order to land in a doctor's office who mentioned it could be Lyme and sent me to an LLMD. Now, here I am 30 years after the tick bite, still in treatment, still fighting this stealth infection.
"Health is a crown that the healthy wear, but only the sick can see it." - Imam Shafi’ee
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.