How I Got Lyme (and Why It Doesn't Matter)

Hi everyone,

After reading my entire blog, my friend Dixie (name has been changed) asked me a really great question: How did you get Lyme Disease? That's a great question, one that I have never explicitly shared before now. The closest I have gotten to this topic was in this post.

In the last year or so, I have had a handful of conversations with Lyme sufferers about their point of contraction. Some people know exactly when they were bit, particularly because they found a tick and a subsequent bulls eye rash on their body. Other Lyme sufferers struggle to remember that one moment when the Lyme entered their body. They rack their brains to remember any and all movements, travels, and symptoms, sometimes going back 30 or 40 years, which usually indicates they have had Lyme as far back as early childhood. As they relate their ongoing search for the truth, these sufferers often hold a pained look on their faces. This teaches me that the search for truth - the whole story - is inevitably relentless and painful.

My story tends to fall in the middle. I have never seen a tick or a bulls eye rash on me, but my symptoms did appear immediately after I arrived home from the East Coast. On June 2, 2006, I traveled to a friend's wedding that was held an hour outside of Philadelphia. The landscape was rural and wooded. The reception was held outdoors in a large, grassy, wet field underneath a white tent. I spent Friday afternoon there helping to set up the tables and then spent the following day there to attend the wedding reception. I have a few pictures from that weekend. One photograph shows me standing next to an old military truck and smiling in a purple sleeveless, knee-length dress. At that time, I had barely heard of Lyme Disease; I certainly had never heard that I should search my body for ticks.

On Sunday of that weekend, I flew to Chicago. I had moved away nine months earlier and wanted to combine my East Coast trip with a quick stopover to visit with some friends there. I flew home to Portland on Monday night. During that flight, I remember having a humongous headache, but I attributed that to not eating enough for dinner and the screaming kid kicking my seat the entire way home. The next morning - three days after the wedding - I began to feel dizzy. Sitting or lying down did not help. I attributed this to jet lag, even though I rarely get jet lag. I felt dizzy for six days and remember telling a friend that following Sunday that I must be coming down with a flu bug.

The next day, I realized everything had changed. Shortly after coming back to work after lunch, a dull, narrow sensation began to move from my left foot, up my left leg, into my left side, through my left arm and hand, and up into my neck, face and back. It took about 15 minutes for it to do this. Within the hour, I was limping and noticeably walking slower. Within a few weeks, I was hardly walking. I could not drive. I did not work a full week's of work since then. In fact, I lost my job because I could not work full-time. I lost most of my muscle strength - picking up a pencil was difficult. At one point, I could no longer do involuntary muscle movements, which was one of the scariest things I have ever experienced. I felt exhausted every day, all day. I could barely think. I lived in a foggy cloud. All I knew was that I was losing control of my life, that one day I was fine, and the next, I was different. People who knew me could see the physical and mental deterioration, too, but they had no solutions for me. Even now, three and a half years later, this experience is difficult to think about.

I did not attribute my journey to the East Coast to the problem until a naturopath diagnosed me with Lyme Disease in August 2006. As Lyme diagnoses go, I am quite lucky to have gotten a diagnosis just ten weeks in. Many months later, I realized that the removal of my wisdom teeth in May 2006 probably contributed to my weakened immune system, even though I had no complications with this surgery. So, when I traveled to Philadelphia a month later and got bit, it was like walking into a trap. I had no idea.

Many Lyme sufferers have relayed similar stories of going to the dentist and subsequently experiencing symptoms. The removal of wisdom teeth and mercury fillings are the top two symptom-inducers. About half the people I have spoken with had experienced no Lyme symptoms prior to their dentistry procedure. The other half had already had symptoms, though the dentistry procedures ended up increasing the intensity of the symptoms. This is not to say that dentists give us Lyme, but I think these kinds of procedures can either stir up or make us more susceptible to the possibility of contracting the disease.

Sometimes I wonder when I actually got Lyme. I have lived in or traveled to the south shores of New Jersey, various places along the East Coast, Chicago, Michigan, the woods in Ohio, the rainforest in Costa Rica, everywhere up and down the West Coast, and even the Caucasus Mountains in Central Asia. Did I get Lyme in one of these places?

Sometimes I get a particular symptom that I have not had before (or don't remember having), which triggers an experience from my younger years. Yesterday, I wrote about the struggle to wake up from a nap. Though I rarely took naps in college, I remember once or twice having a similar struggle to wake up from naps. Was this Lyme, or was it merely exhaustion from attending college?

When I was six years old, my mom got Guillan-Barre ("Gee-yawn Bar-ay"), which has symptoms that are similar to Lyme, except that GB is a virus and, with proper intervention, begins to heal after three weeks. (Lyme is a bacteria and only gets worse without proper intervention, or sometimes even with it...) My mom once told me that she wonders if what she had wasn't actually Lyme. If that is the case, did I somehow contract it from her, or are our illnesses (past and present) merely a coincidence?

I could pick apart my entire story and spend boundless energy on deciphering the truth. But the thing is, the tick fell off a long time ago, the wedding reception is just a memory, and I am sick. Dwelling on the past, the what-was, isn't going to change that. Instead, I prefer to dwell on my recovery. I prefer to dwell on my alternative future. I prefer to dream. And I prefer not to settle for mediocrity. Rather than picking apart my life, I would like to start picking it all up and making it whole again.

A.