TODAY I FEEL BETTER, more able to think.
One thing I keep thinking about is the so-called Chinese curse ‘May You Live in Interesting Times’.
Which I guess brings us to the controversy over what is being called ‘Chronic Lyme.’ It is a big, messy, awful, debate that has doctors and alternative practitioners and particularly patients in a state of absolute chaos.
It has left us, the hapless patient, having to fend for ourselves; depending on luck and persistence.
On the one side, to the best of my understanding, are many well-meaning, well-educated people who believe that desperately sick patients are being misled and treated with inappropriate medicines, some of which can have terrible side effects. They believe that ‘Lyme’ has become a catch-all for a cluster of badly understood illnesses, at least some of which have their basis in undiagnosed mental illness. These are the double-blind study folks; trained in a scientific method that has taught them to be sceptical of anything that cannot be quantified and verified through testing. They are practicing medicine as they were taught in good medical schools which they studied hard to get into. They are doing their best to help folks without hurting them. (The dark shadows behind them are the insurers in the States, and, sadly, our own government in Canada.)
But they are not our side. Our allegiance is resolute and devoutly loyal; based largely, but not entirely, on our communal experience of having felt really bad before we met them, and feeling much better now. These are the also well-meaning, well-educated, empathetic practitioners who would argue, to the best of my understanding, that the testing is imperfect, the definition of the constellation of infections surrounding ‘Lyme’ too tight, that the variety of microbial infections shorthanded as ‘Lyme’ can be incredibly hard to get to, but must be treated (either with herbs or antibiotics) to avoid a long march of destruction to any number of systems in the body they’ve infected. I don’t think we’d be putting words in their mouth to say these microbial are a moving target, but that the amount of human suffering caused by the medical community’s desire to be cautious is unacceptable.
But maybe we would. And there is the rub. We can only tell you what happened to us. We can only tell you how bad we felt, how much of our life we had compromised, how hard we tried to get it sorted out, and how we feel now. So that is what we will write about here. There are people with Lyme who can’t walk. There are people with Lyme who can’t talk. There were times when all three of us could not think. And there’s nothing that makes you appreciate your ability to think, or the absence of depression, or chronic pain or clear vision, or the ability to get through the day without a nap, than not having had it and getting it back.
There are a million other Lyme stories. They are all over the internet. Many are sadder, lots are more angry, and many have more skeptical things to say about the practitioners they’ve run into. But these ones are ours.