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The 3 Little Words That Changed My Life

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It was a routine day in the office on Nov. 12, 2012. People were buzzing around, meetings were in full swing and phones were ringing.

I was working away on my computer when suddenly, my phone rang. I looked at the caller ID to see it was from a private number.

My heart started pounding as I walked away from my desk to answer.

A call from a private number meant it was a doctor, and that kind of call means one thing — there is terrible news on the horizon.

For months, I had been searching for answers for a wide array of symptoms that continued to worsen. Every doctor I saw eventually threw their hands up and suggested I seek psychiatric help.

Through more online research, I found out about this doctor. She was completely self-pay, but she had testimonials from many that she was the only one who could figure out what was happening in their bodies.

As I answered, I heard her voice. And after a quick exchange of pleasantries, she lowered the boom.

“You have Lyme.”

Lyme? I couldn’t believe it.

I am one of the least outdoorsy people you could ever meet. I don’t go hiking, camping or exploring in the woods.

You will find me inside in the comfort of air conditioning at all times.

But the test results were undeniable. My test showed results even the CDC would agree is Lyme.

As I crumpled to the ground, unsure of what to do next, she began to talk about treatments, medications and dietary changes.

But, I heard nothing. I comprehended nothing. I was in a place of utter shock and denial.

At the end of the call, she said, “I’m so sorry we didn’t catch this sooner.”

And as she finished the sentence, she began to choke up.

It was then I knew I was in serious trouble.

For the next nine months, I embarked on a heavy-duty treatment regimen of oral antibiotics, IV antibiotics through a PICC line, and bottles and bottles of supplements.

During that time, I had surgery to remove my gallbladder and discovered an abnormal heart rhythm that required more investigation.

I lost my sense of taste, developed a facial droop from Bell’s Palsy and racked up over $100,000 in medical bills.

And this was all in addition to the symptoms I already had that caused me to seek out medical help.

As my treatment ended, I was certainly feeling better than when we started. But I was nowhere near where I was before the Lyme invaded my body.

My doctor said, “I will consider this a major success if we can get you back to 80% of who you were before.”

That never happened. Thanks to the Lyme invading every part of my body and crossing over the blood-brain barrier, additional conditions and diseases began to take hold.

My medical history grew to include hypothyroidism, adrenal insufficiency, interstitial cystitis, inappropriate sinus tachycardia, postural orthostatic tachycardia syndrome (POTS), migraines with aura and chronic kidney disease.

There were two things all of these conditions have in common:

1. My doctors believe each is a result of having Lyme and …

2. Each one is chronic with no cure

And because it took so long to determine I had Lyme to start treating it, it is now considered chronic as well.

As one of my doctors says, if my body is overwhelmed by anything, including one of the other chronic illnesses I have, the Lyme can come back out to play.

So I live my life on the edge of which symptoms I will deal with each day and when and if the Lyme may come back.

Lyme and the chronic illnesses that followed forced me to miss many family events and everyday life. I have been absent for so many milestones, and my child has never known a world where his mom is well.

It is a devastating disease that is underfunded and in desperate need of better testing and treatment protocols.

One day, I hope to look back and understand the purpose behind these trials and tribulations. And to be able to see those three little words, you have Lyme, were somehow worth the struggle.

Photo credit: kieferpix/Getty Images

Originally published: September 1, 2021
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