Proof of progress

I did not realize how important it would be when I started, but for over a year now I’ve been keeping a daily diary of how I felt. At first it was fairly vague and subjective — overall wellbeing, whether I napped, sometimes a symptom that particularly stood out (such as headache or back pain). About 7 months ago, I met another Lyme patient who also tracked her symptoms, and she shared the chart she used with me. I’ve been using it ever since to track about 40 possible symptoms, only missing about 3 days a month. It takes 1 or 2 minutes a night to fill out. I show it to my doctor who sometimes notes trends (symptoms I had all month). I look at it when I’m asked to remember how I felt in the last week and my memory fails me. I sometimes stare at a month’s worth of X and / marks hoping to see a pattern….

Number of pain symptoms per day decreases over time

Number of pain related symptoms per day decreases over time

number of nerve related symptoms per day decreases over time

Number of nerve related symptoms per day decreases over time

And then last saturday I woke up with this obsessive urge to do something new with the data. It took all day, but I entered every data point into a spreadsheet. Then, with the help of a colleague who understand statistics, I identified a valid test of my progress. I divided the symptoms into categories (immune, nerve, emotion, movement, fatigue, cognitive, and pain) and tested each category as well as the whole for progress.

The results were surprising and gratifying. Most objective is the number of symptoms that were “active” in each category (or total). Between August 2008 and January 2009, I found a significant decrease in the number of nerve related symptoms and pain related symptoms. A trend (looks like a slow decrease) in cognitive symptoms and fatigue symptoms. And a slight increase in immune symptoms (could be a sign that my body’s doing the right thing though — i.e. before lyme I only got night sweats when I was successfully fighting something, maybe that’s still true). Everything else held steady.

I have a lot more analysis to do — for example, I ran a quick test confirming that my symptoms increase slightly when I have my period. I plan on exploring what symptoms usually clump together. My colleague will help me to create a set of tests I can run monthly to get a quick sense of whether the change is positive or negative.

But in the meantime, this data set gave me some hope … and a lot of motivation to keep up the logging. Considering the small time commitment, the payoff is huge — this tells me it’s worth continuing the antibiotics. It could be evidence if the insurance company every gives me trouble. If more of us do this, maybe we can start to create an aggregate picture of how Lyme plays out. And it lets me share something concrete with the many individuals who are helping me without visible signs of what is happening.

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