Biology or Behavior?

I am reading an ethnography [1] right now written by a woman who was misdiagnosed with fibromalgia. She discusses the way in which her doctors’ view of her and her symptoms defined (and destroyed) 8 months of her life. In the end, she is “saved” by a doctor who argues for the role of culture, gender, and other similar forces in her symptomatology, points out that some of her symptoms may be side effects of a medication she is taking, and that others are likely caused by her other diagnosis, which is an arthritic disease. The author benefits from this redefinition of her diagnosis and regains much of the lost quality of life caused by the fibromalgia diagnosis.

Although I have only read two chapters so far, I have a number of reactions to this ethnography which I think are relevant to the experience of Lyme disease. First, I want to provide further context for my thoughts by discussing the differing import of “behavior” (and culture) and “biology”in the patient/doctor relationship. Continue reading “Biology or Behavior?”

diagnosis, symptoms

More diagnosis … which stage was I in?

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.

my story, symptoms

Can’t move jaw, hearing problems

In late August in preparation for classes and a big paper deadline, I slept an average of about 5 and a half hours a night, with interruptions, for a 5 day period. This precipitated the worst downslide I had had yet.

First, starting on 8/27, my jaw pained worsened until I was completely unable to open or close my jaw and my lower jaw was jutting forward so far that my overbite had become an underbite. As it happened, I had scheduled an appointment with both my MD/homeopath (on 8/28) and PCP (on 8/29).¬† I believed that by now they would surely want to see me again (in the case of the PCP) and might think it was time to take more directed action to address what was wrong (i.e. run tests). The changes in my body were beginning to scare me. Still, I trusted my doctors. My MD/homeopath listened to my symptoms, and then asked me to open my mouth so she could look at my throat (I also had a cold again). She reacted with surprise when I couldn’t.

Second, my hearing had gotten truly bad, something both my husband and I noticed a few days before the doctors visits. Both she and my PCP sort of laughed it off when I reported this, and in fact my PCP said something like “aren’t you a little young to lose your hearing” and did not mention it again.

This should have been a reminder for me — for the second time since I became ill, one of my doctors was surprised to see how strongly my illness was affecting me. Description alone was not getting the message across. The first time (see my Feb 1, 2007 post), the extent of my fatigue was hidden by my daytime energy. The second time, the extent of my frozen jaw was not understood until, in front of the doctor, I could not open my mouth. Both times, even after they saw something closer to the truth, I left the office reassured that things would continued to work with my doctor to address my condition through naturopathic means. The hypothesis was that a combination of mold, lack of sleep and other stressors was acting on my body. I saw my PCP a few days later, and he assured me that my symptoms were most likely caused by a virus and would probably clear¬† up on their own and suggested I only come back if in a few months I was not better, or if I started to feel significantly worse. Even worse, serious symptoms such as hearing loss seemed to be overlooked if they did not fit the picture of the preferred diagnosis. In all fairness, none of my more serious symptoms were truly debilitating (I was still biking to work most days!) or if they were they cleared up quickly (the jaw was improving 24 hours later, seemingly responding well to the medication I was given, and completely better by 9/2).

Even so, if I could go back in time, it is at this point that I would whisper in my own ear: Your doctors don’t have a true picture of how you feel. They may be overlooking some of your symptoms. They’re investigating the possibility of a serious disease. And you yourself should never just wait out a combination of changes this diverse — hearing loss, frozen jaw, pain, fatigue, immune problems — this is a picture that should be taken seriously. Sadly, I was focused on things that seemed far more important at the time — meeting a paper deadline for a project I cared deeply about, and preparing for a difficult semester in which I would be teaching two classes, one of which was the most time consuming in our department.