A Lyme Disease Journal

All I remember for sure is that by the time Megan and Laura visited on December 7th, I was already so fatigued that I had to go to bed each night around 9 pm or earlier. I also noted that my hair was falling out at a surprising rate. Also around then or before lymph nodes started swelling up each evening, but back to normal each morning. In fact, each evening I felt as if a cold was descending — post-nasal drip, sore throat, etc. This continued on for 6 weeks or more, and then slowly began to get better in the Spring. Though I only remember it lasting 6-8 weeks, I didn’t write “getting back to normal” in my diary until March 16, 2007. During November-January, the fatigue was so bad that I was napping every day, neglecting the household and anything non-essential (such as writing christmas cards) and generally felt exhausted. With Anind’s parents in Europe for this period, there wasn’t time for anything but kids and sleep. Despite this, from when I woke up until about 7pm, I looked and felt pretty normal. In fact, most people who saw me at those times of day had trouble believing I was ill.

During this period, I went to two different doctors. The “traditional” PCP ordered a test for mono and some blood work, and when the mono test came back negative and the blood work was normal, suggested that I just wait it out. He explained that there are several other viruses that cause mono-like symptoms and that he expected this would clear up in it’s own time. A few weeks later when I was still sick. The homeopath/MD gave me immune boosters at first. Then one day I came in around 5pm and she saw the difference from middle of the day — in fact she said something like “you’re look terrible” with surprise. She ordered an X-Ray of my chest (which came back negative) and some blood work (which came back normal) and prescribed antibiotics. She also asked if we had mold in the house (I said no of course not! Little did I know…)

I decided not to take them because I didn’t think I had a sinus infection or anything else that would justify them, just this ongoing fatigue. As it turns out this was a lucky decision — because I had neither (insufficient) antibiotics (for lyme you need much longer treatment than a standard course) nor steroids in the entire year up until my diagnosis finally came through, my prognosis is much better than it would otherwise be.