My Lyme's Story

Photo by Kate Nesi

I've been very reluctant to talk about my first experience with Lyme's Disease.

But we need more positive stories out there about recovery. And if you can relate to my story — you need to know that there's life beyond Lyme's. So here it goes:

I was in my mid-twenties and had been misdiagnosed with a handful of different conditions for over a year before I received proper treatment. At my first appointment with the new doctor who treated me, he looked me in the eye and said "You're lucky to have gotten here when you did. Another couple of weeks without treatment and you may have been dead." Yup, I was that bad.

At my worst, I couldn't remember my phone number or names of family members. All I could do was lie in bed and sleep. It took all my strength to walk ten feet to the bathroom. It was challenging to do the most mundane things, like counting without losing track, being able to read and understand, or recalling even the most simplest of words. My quest for health took me to numerous specialists: neurologists, cardiologist, psychologist, infectious disease specialists, ophthalmologists, endocrinologist. I was poked and prodded more times than I can count. I had MRI's of my brain, GI scans of my gut, and even a spinal tap. My patient folder had expanded into two full files by the time my treatment was finished.

After two years of being sick and out of work, I had been stripped of my former self and wading in incredible debt. Not exactly what every 20-something dreams of. 

On top of that I was incredibly lonely and depressed. Most of my friends and even family couldn't empathize with what I was going through because to them I looked healthy. They couldn't relate because they couldn't see it. And back then I didn't have the option of finding a community of support online. 

I'd lost everything during those years: my health, my job, my money, my friends. My dignity, self esteem, and personal power.


Rebuilding my health and life wasn't easy. I made a lot of mistakes along the way. But slowly and steadily I managed to reclaim my position in the game of life, and after a while I felt somewhat like a normal human being again.

Despite some lingering issues and some battle scars, I was so happy to be alive and light-years away from those days on the couch. Life returned to normal again and I was pretty darn happy about it. I went back to work, fell in love and got married — even started a family. I chose to forge ahead and never look back, to put that awful chapter of my life behind me. I wasn't going back — no way, no how.

But then I was diagnosed and treated again in the fall of 2014.

And it was a completely different experience.

Again it took a long time to diagnose but mostly because it never even crossed my mind that I could have Lyme's again. My symptoms were so mild compared to the first time.

I was practicing self-care, cooking homemade meals, and buying organic foods whenever possible. I'd also been avoiding gluten, dairy, soy, and egg in my diet for almost two years.

My change in diet had removed inflammation, which made it easier for my body to fight the Lyme's. I wasn't overloaded with a long list of symptoms and it was easy to see exactly how the Lyme's was affecting me. My symptoms, treatment, and recovery were a walk in the park compared to my first experience with Lyme's. And I couldn't be more grateful.

And the self-care practices kept my head above water. I was able to avoid feeling overwhelmed and confused, and was better able to selectively choose what ideas and treatments resonated with me. Instead of things spiraling out of control, I remained in charge of my health and my life.

Treatment and recovery only took a few months, but the lessons I've learned will last me a lifetime.

That's why I'm sharing my Lyme's story.

I wholeheartedly believe in the power of food as medicine. I believe in the body's ability to heal itself. And I also believe in the power of belief — and how a little positive thinking can work miracles in your recovery.

The world needs more positive stories about Lyme's — let's make you one of them.