Living with Lyme Disease: Just Getting a Diagnosis Took Years

Sharon Sullivan: How Lyme Disease Changed My LIfe

It’s been 13 years, and I still struggle with Lyme disease. What a hell of an ordeal it was just getting the proper diagnosis. This New Jersey native had no problem where ticks were rife, but in Florida I was bitten by an infected tick and my life changed.

That’s why Florida ranking ahead of New Jersey in Pest Gnome’s Worst States for Tick-Borne Illnesses (with Florida ranking No. 26 and New Jersey at No. 30) doesn’t surprise me. Even though many reported cases are focused in the Northeast where Lyme was first discovered in the 1970s, the disease has spread to many other parts of the country due to urban sprawl and the growing deer population.

But let me start at the beginning.

At the start of 2011, I was expecting it to be one of the best years of my life. I was having my first baby in March. I was turning 39 in April. I was at one of the highest points in my journalism career.

Then things suddenly took a crazy turn in June. I woke up to this odd rash on my right leg that quickly grew and was hot to the touch. I went to my doctor and he said it was probably a spider bite and nothing to worry about. When I brought up the possibility of it being a tick bite, he said, “No, ticks in Florida don’t carry Lyme disease.”

Then my nightmare really began. I started getting very sick with a fever, chills, headache, and achy joints. The symptoms just got worse with vertigo, eye twitching, ringing in my ear, extreme fatigue, stiff neck, numbness in my hands, sensitivity to bright light, vision issues, nausea, short-term memory problems, and heart palpitations. All are known classic Lyme disease symptoms.

I went back to my doctor, begging him to test me for Lyme. He wouldn’t. Instead, he diagnosed me with postpartum depression. I knew that was a misdiagnosis. No one would believe I was truly sick.

Lyme disease can mimic other illnesses, such as chronic fatigue syndrome, fibromyalgia, multiple sclerosis, arthritis, and even depression. That’s why so many people are misdiagnosed.

I struggled in my daily life. I could barely take care of my 3-month-old son. I was so exhausted driving home from work, I would fall asleep behind the wheel. I lost about 30 pounds because I was nauseous and dizzy all the time. I couldn’t remember simple things, like if I fed the dog, brushed my teeth, or where I put my coffee cup. And my normal active lifestyle of running and lifting weights every day became almost impossible. I pushed through, even though it was severely affecting my family life and work life. I was so scared because I didn’t know what was wrong, and no one could help me.

Finally, after a year, multiple tests (blood tests, brain scans, heart tests, ECG, EEG, spinal tap) and seeing 15 different doctors (all grasping at straws), I tracked down a Lyme-literate doctor in Florida. She spent hours talking with me, read the journal I kept over the past year on my symptoms, and ordered the correct blood test (Western blot).

When the results came back a week later, the doctor called me to say, “Sharon, you have been right that you had Lyme.” I was in tears. Finally, I was diagnosed and could get on the road to recovery to get my life back.

But the road was long. Since it wasn’t detected and treated in the early stages, the infection had entered my bloodstream, and by this time I had chronic neurological Lyme

For almost two years I went through intensive treatment with antibiotics and other alternative medicine options like acupuncture, massage, and Rife machine therapy. I changed my diet, eating mostly gluten free. I also did a lot of detoxes with teas and baths. Recovery was long, but the symptoms were slowly disappearing. Once I got to a place of “remission,” my doctor put me on a regiment of supplements that I still take today and will for the rest of my life.

There is a lot of controversy over diagnosis and treatment of Lyme disease. Everything from which states have infected ticks to how doctors diagnose it to how to treat someone with chronic symptoms.

What made my case so challenging is what makes it so challenging for thousands of other people around the U.S:

  • Many people never see a tick on them. They are so tiny (the size of a poppy seed) and hide in discreet places like your armpits, belly button and scalp.
  • Only 70%to 80% of people infected see a classic bull’s-eye rash.
  • Testing is unreliable. There are a lot of false positives and false negatives.
  • Not all doctors know how to treat patients and not all patients respond the same. It depends on how long a person has been sick, their symptoms, what tick-borne infection they have, if they have co-infections, and the person’s own physical health prior to being infected.

If there were two things I learned from this experience it would be that sometimes you need to trust your gut and be your own advocate when something is wrong, and you are stronger than you think when you are faced with tough challenges.

And my 3-month-old son, who I struggled to take care of while dealing with what turned out to be Lyme disease? Thank God he doesn’t remember that terrible time. Today, he’s a busy teenager, playing soccer and hitting the gym with his mom.

Main Photo Credit: Sharon Sullivan, created using Canva Pro

Sharon Sullivan

Sharon Sullivan, senior managing editor at Pest Gnome, dreads love bugs in Central Florida and recently battled squirrels that ate the wiring of her car, resulting in a shockingly expensive repair bill.