Untreated Lyme disease: 2 years of hell


My doctor holds me down, consoling me, telling me to breathe because he has no idea what’s going on. My face is numb, and it feels like I have the flu. I have trouble breathing. The pain is so bad I start to cry.

A few years ago I noticed a pain radiating down my leg, starting from the small of my back. I had had artificial disc surgery in my spine a couple years prior and thought this new pain was due to scar tissue from the surgery.

Then I went to work one day and lost all feeling in my legs. My arms were tingling and it felt like I had pins and needles everywhere in my body.

I went to the ER, and that night, I became a medical mystery. I had a full body MRI (the first of many) and by the end of the night I had seen at least five neurologists. They chalked it up to my previously damaged spine, gave me some painkillers and sent me on my way.

This sequence of events would continue for another two years. Each time the diagnosis would change, but the end result would stay the same. I saw a neurologist, a neurosurgeon, an orthopedic surgeon, a urologist, a neuro-urologist, a kidney specialist, three different pain doctors and a pain psychologist.

My diagnoses varied from heart disease to polycystic kidney disease to Lupus. I had many different neurologic disorders — fibromyalgia, psychosomatic disorder and my personal favorite, neurosyphilis — according to these doctors.

I had multiple brain MRIs that revealed lesions in my brain; these were due to my high blood pressure, the doctors told me.

I continued to get little headaches that would come, last for a minute and disappear. My legs would lose feeling and everyday it seemed like I was getting weaker.

I would get Bell’s palsy — a syndrome where part of my face would be paralyzed and slump to one side. My body would twitch uncontrollably, and then tighten up to the point where I thought my bones would break. I was told my pain was all in my head, that it wasn’t real.

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by Erik Nivison | CNN Health | August 29, 2013

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