Ticked Off: Installment I of my Lyme Disease Journey

My friends know that I have been severely incapacitated by Lyme's Disease since winter of 2006. Because I have several new readers, and I've never been able to write about my illness in-depth, I'm going to do a series of posts describing my experience of the past two and a half years, culminating in a post about why I abandoned my old blog when I was able to start writing again.

Onset and Pre-Diagnosis

In December 2006 my forearms started to hurt me during and after typing. Since I was working as a journalist, I assumed I had developed carpal tunnel syndrome, so I took a week's vacation from work that December, during which I kept my personal typing to a bare minimum. When discomfort persisted, I made an appointment with the head of arm and hand orthopedic medicine at a major medical center. After a cursory exam, the doctor concluded that I had some nerve irritation and prescribed occupational and physical therapy with a hand specialist.

By February 2007, I started getting pins-and-needles sensations in my arms, similar to the ones you get when your feet fall asleep. Not comfortable! By March, when I touched a button, such as pressing a button in an elevator, an electric shock would travel from my hand and into my upper arm. At my doctor's suggestion, I took two weeks off work in March and refrained from typing while I got a crash-course of occupational therapy (OT). In spite of the rest and the therapy, my pain worsened. I took various medications and had some fancy wrist braces made, but the pain persisted. and My occupational therapy got increasingly painful, and I began to doubt the competency of my occupational/physical therapist (OT/PT; these are not the same field, but she is dually licensed). I asked the orthopedist for a referral to a new PT, whom I saw in March 2007. She was just out of school, which perhaps made her humble enough to acknowledge that something was gravely wrong with me that she couldn't fix. She asked an OT colleague of hers, whom she held in high esteem, to evaluate me.

This OT took the time to do what the orthopedist should have done but didn't: she had me perform simple tasks to assess the neurological function of my body, such as holding my arm above my head and seeing how long it took for my hand to go numb. It's supposed to take minutes, and it took my hand about 8 seconds. "This is not an orthopedic problem," she said as she shook her head. "This is a neurological problem. A big one. And you need to see a neurologist tomorrow."

This is a good time to diverge for a minute and talk about the pitfalls of what traditional, Western medicine has become. I think there was a bygone time when people were looked at as whole human beings, with interconnected parts and systems working in harmony to function, heal, and thrive. I am not knowledgeable about the history of medicine, but somewhere, somehow, we lost our way. Medicine became more and more specialized, which means our bodies got broken down into more and more "distinct" parts; so much so that now the adjective "holistic" (whole-listic) usually refers to complementary medicine, when really all medicine should be whole-listic. So when I saw the orthopedist, he only thought of my arms in the orthopedic context and neglected to do a very basic exam that would have tipped him off that I was at the wrong specialist's office. This will probably be the kernel of another post, because it needs exploring further.

Back to the sickness. Unfortunately for my close friend, she had a traumatic brain injury and was able to refer me to a neurologist who could see me quickly. He's a jerk, but he's also a brilliant diagnostician, thank God. He began the diagnostic process with neurology's favorite toy, the electromyograph (EMG), which is a nerve conduction test. Unfortunately, I knew what I was in for because I had one of these in 2004 (remember this in a few paragraphs). The exam is comprised of two parts. In the first, the surface EMG, the technician takes a little wand and administers electric shocks to your body; the patient is hooked up to electrodes, and the EMG machine transmits and captures nerve conduction data. The shocks feels like someone is taking a rubber band and repeatedly smacking it, hard, on your skin. That's the good part.

The intramuscular part of the exam involves inserting the longest needles I've ever seen into your muscles. They have to be long to get deep in your tissue. It hurts when they're inserted, but the real torture begins when the test administrator tells you to flex your muscle with the needle in it. My doctor was doing this on all my cervical vertebrae, and I ordered him to stop before he finished because I couldn't take it anymore. I was sore for two days afterwards.

The EMG showed some significant nerve damage, so my doctor ordered a battery of laboratory tests, and sent me for an MRI of my cervical spine. At this time, because of the excruciating pain in my arms and neck, I could not: drive a car, chop vegetables, push a grocery cart, open a jar, turn on the computer, open the door to an office building, use my fingers to hit an elevator button, write, type, or wash my own hair because I couldn't lift my hands above my shoulders. David, bless his heart, washed my hair for two months. I was so tired that I slept all day, which I guess is good since I couldn't do anything other than watch TV. I couldn't read laying down because my arms weren't strong enough to hold anything in the air. Simultaneously, I was bedeviled by random pins-and-needles feelings and the sensation of my arms being electrocuted. It was torture.

The only thing worse than the pain was not knowing what was causing it.

Stay tuned for the next installment about my diagnosis and beginning treatment.