Lyme disease is multi-faceted because the lyme spirochete can attack different systems in the body. Typically, the longer someone is infected, the further it progresses, though there is no guarantee as to the order in which different types of symptoms will occur. In my case, because there was no known tick bite or acute onset of symptoms, we were not sure how long I’d been sick, though we knew it had been at least 11 months by the time the diagnosis came through. This meant that I was either in the early disseminated or late disseminated stage. A key difference in those stages is whether or not there is neural involvement or heart arrhythmia).
Also, we weren’t sure exactly which symptoms I did or did not have because many of them are quite subtle. For example, I am naturally a klutz, and a slow increase in klutziness was not immediately obvious to us. On the other hand, the week I knocked over 2 water glasses a night at dinner multiple nights in a row, we started to wonder if perhaps I was more clumsy than usual. Similarly, my memory has been bad, on and off, since my first child was keeping me up at night, multiple times per night, at 3 months of age (almost 4 years ago). Was it worse? I can’t really remember, as the joke goes.
In the end, all three of the doctors I saw, including doctors from both sides of the lyme wars, agreed that I might have neural involvement (luckily, I had no heart arrhythmia). The symptoms that seemed to concern them included: my right pupil was a little slow to dilate; I had had facial paralysis; we (my husband and I) thought I was more clumsy than usual; my hearing was worse than usual; I had occasional headaches; the reflexes in my ankles were more jittery than normal; a reflex in my elbows was unresponsive; we thought my memory was worse than usual; I had had sharp shooting pains in my arm. Some of these things (such as my right pupil) may have existed before the lyme, others (such as my clumsiness and hearing) are highly subjective, and none of the doctors sat down and explained exactly which symptoms were most important in their diagnosis. So I don’t know exactly why they came to the conclusion they did. However, they all agreed, and the suggested treatment in cases with neural involvement is IV antibiotics (this is something doctors on both sides of the lyme wars tend to agree on). Thus, the day after I saw the third doctor, I headed to the hospital to have a PIC line put in.