Suffering in Silence with Late-Stage Lyme Disease

I let it go on for three years. I’d feel sick or exhausted and tell myself to suck it up, be a good mom, and complete the tasks on my to-do list. 

But even in the first two years, I battled a bevy of symptoms. 

Symptoms of a weakened immune system like headaches, hair loss, and frequent infections. Flu symptoms like malaise, sore throats, and muscle aches. Neurological symptoms like fatigue, insomnia, and brain fog. Gastrointestinal symptoms like nausea, vomiting, and abdominal cramping. Even neuropsychiatric symptoms like depression, anxiety, and irritability. 

All those little symptoms? I didn’t realize they added up to one big problem. I just kept going. 

Three. 

Long. 

Years.

And I’m not the only one. In fact, far from it. 

Two friends braved the disease for ten years before getting diagnosed with late-stage Lyme. Another was bitten as a child and struggled through her teens before finally being diagnosed as an adult. Through social media, I’ve met people who fought Lyme twenty years—even forty!—before being diagnosed.

Delayed diagnosis happens frequently with Lyme—it’s one reason I launched this website. 

Lyme Disease: The Clue in the Diary

In 2018, blood tests revealed not only that I had Lyme disease, but that I’d probably had it at least a year or two. I felt troubled and . . . elated.

Strange response? Well, let me back up to the beginning of my story.

When I was growing up, I loved reading Nancy drew novels like The Clue in the Diary. Nancy might blow the dust off a musty letter or notebook and use it to solve a mystery.

So, as I prepared to share my Lyme disease journey, I donned my detective’s hat to uncover the truth. You see, I didn’t know when I’d gotten infected. How long had I battled this debilitating disease?

To get to the bottom of it, I gathered my prayer journals, medical records, and Mom’s One Line a Day memory books. I read the entries from May 2015 (when we’d moved to Maryland) through my diagnosis in October 2018. As I read, I took notes and compiled a timeline.

I also researched the three stages of Lyme disease and possible reactions to the tick bite itself. Here’s what I discovered:

First, most people don’t show immediate symptoms from the tick bite. Instead, they develop delayed symptoms from the pathogens the ticks maybe be carrying.

Second, early Lyme disease symptoms usually begin one to two weeks after the tick bite.

Third, disseminated Lyme disease symptoms usually begin one to four months afterward.

Fourth, late-stage Lyme disease symptoms begin weeks, months, or years afterward.

Did My Journey Begin on Sugarloaf Mountain?

On October 26, 2015, our one-year-old climbed 168 steps to the top of Sugarloaf Mountain. Little did I know I was also beginning an arduous climb.

The day after our hike, I got sick. At the time, I thought I had a stomach flu. I’ve since learned  tick secretions can cause “nausea and a general sick feeling.” According to Harvard Medical School, “These symptoms usually go away within 24 to 36 hours….” 

The following day, I started to feel better. Unfortunately, my long-term illness had barely begun. A pathogen inside the tick would introduce me to a disease with symptoms that could last a lifetime.

Early, Disseminated, and Late-Stage Lyme Disease

Two weeks to the day after Sugarloaf, I wrote, “Today I was exhausted and not feeling well….”

As I mentioned above, stage one symptoms usually begin a week or two after the tick bite. That timing matches the onset of my symptoms.

This flu-like illness can include chills, fatigue, fever, headaches, malaise, and sore throat. Some people get the distinct sign of a bull’s-eye rash or another kind of round or oval rash. Unfortunately, though, it may show up in a hard-to-see place like the scalp or underwear area.

During stage two, 8.2 percent of people get Bell’s palsy. (Bell’s palsy is a “sudden weakness in the muscles on one half of the face.”) Others faint or have heart palpitations. My dad had the clear sign of multiplying rashes. Some, though, just experience vaguer symptoms like extreme fatigue and lack of energy.

As I mentioned earlier, stage two symptoms usually begin one to four months after the tick bite. Two months after Sugarloaf, I wrote in my memory book that I wasn’t feeling well. In my prayer journal, I wrote, “Father, please restore my strength and health. Give me the time, strength, and energy to get everything done that you want me to today.”

The following day, I wrote, “I still feel completely worn out. Please breathe life, strength, joy, and encouragement into my mind, soul, and body today.”

Suffering in Silence

As I read through the timeline, I watched my health deteriorate starting in late 2015. Almost as if I were reading about someone else, my heart broke for myself. For so long, I suffered with Lyme in silence. 

After the traumatic birth of her son, my friend Kristina Cowan battled postpartum depression. In When Postpartum Packs a Punch, she writes, “Suffering in silence wasn’t my style.” 

Well, clearly, it was mine, because I suffered in silence far too long. My husband knew more than anyone, but even he didn’t know the extent of what I was battling. 

He always tells me I work too much, so I knew if I told him how badly I really felt, he would make me rest. But between writing, ministry, and caring for our home and children, there was always so much to do! I didn’t feel right about resting—more than was normal—if nothing was wrong with me. 

But something was wrong. Terribly wrong.

Now I’m telling my story, so you and your loved ones won’t suffer in silence. You’ll see what’s going on and demand the help you desperately need. 

Why did it take me so long to realize what was happening? Perhaps because, even as one of my fears was being realized, a long-held dream was coming true. Click here to continue reading my story!