Lyme disease: It only takes one bite

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I’m a strong, well-trained former pro athlete. How could an opponent as tiny as a tick defeat me?

Because Lyme disease is real. I’ve battled it for decades.

The pernicious, insidious disease — hard to identify and treat — destroys one muscle at a time.

Due to shame and fear of losing my job, I hid my illness, never divulging my controversial diagnosis. But now, with what I know firsthand about its devastating effects, I would be remiss to ignore its existence. (May is National Lyme Disease Awareness Month, when Lyme educators speak out on how to prevent it and other tickborne diseases. I echo the call.)

The tickborne bacterial infection is most frequently found in the northeastern, Midwestern and mid-Atlantic states. Minnesotans are especially vulnerable to this “hidden epidemic.” But it is now prevalent worldwide. It has become a global health problem due to climate change and environmental practices.

Lyme, known as the “great imitator,” can be misdiagnosed as other illnesses. To further complicate matters, Lyme’s many co-infections, such as bartonella, babesia and ehrlichia, are equally difficult to diagnose and treat.

Decades ago, I was diagnosed with chronic Lyme caused by the tickborne parasite Borrelia burgdorferi, which is most common in the United States. Other kinds of ticks carry other types of bacteria with other co-infections.

I tried every treatment — supplements, antibiotics, antivirals, antifungals and anti-parasite medicines — in attempts to eradicate the bacteria in its’ many forms.

After years, I finally located doctors who believed my bizarre symptoms despite of the lack of accurate testing. Lyme remains primarily a clinical diagnosis. Doctors, at risk of losing their medical license, willingly tried treatments that helped.

For years, my immunologist worked to reinforce my immune system. A Lyme-literate doctor in Wisconsin prescribed different long-term antibiotics.

If Lyme is identified right away, it can be successfully treated. But not everyone is as lucky as my brother-in-law in Minnesota, whose tick bite left the telltale bulls-eye rash. Immediate antibiotic treatment wiped out his Lyme.

Many celebrities — writers, athletes, musicians like Justin Bieber and Avril Lavigne, and actors like Alec Baldwin and Yolanda Hadid — have shared their Lyme battle to promote awareness.

“[Lyme] is very dangerous because you have a very short window to catch it and then treat it and then even when you treat it, you could still very well be left with effects, which is what happened to me,” Shania Twain told CBC news. “It’s a debilitating disease and extremely dangerous. You can’t play around with it, so you’ve got to check yourself for ticks.”

Unfortunately, ticks can be as invisible as tiny as grains of sand. I had no signs until it was too late.

At times, my body turns to cement, my head fills with cotton. Electric shock sensations and stabbing pains shoot down my torso. My muscles twitch, my limbs spasm. Excruciating headaches knock me to my knees. My mind muddles.

The medical community’s skepticism only exacerbates patient shame. The best prevention: Don’t get bit. But if you do, keep searching for answers.

The immune response to the Lyme bacteria may cause chronic inflammation. Recent studies show long-haul COVID-19 has similar effects on the central nervous system.

Am I cured? Doubtful. But I’ve learned to make peace with my undependable body.

At times of profound exhaustion, I slip into a twilight zone of semiconsciousness, suspended between life and death in a never-world.

I don’t dwell on it. I won’t let Lyme define me. I am not my illness. As an athlete, I fight on. I still enjoy the great outdoors, but with greater vigilance.

I will fight on. Others, without financial stability and strong support networks, struggle in despair.

You can help. Stay aware. Someone in your entourage suffers in silence. Someone you love needs a hug.