Getting Out of Jail: Remission

Let's talk remission! I have started using this word in the last couple blogs, but it is time to focus a bit more closely and what it means and how we experience it. First, let's do the time-honored thing and define our term. Wikipedia offers this definition for medicine:

• the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity

Very technical and, I'm sure, accurate. I also like this one, though, and it somehow captures the feel of remission better than the medical definition:

• In penology, "remission" refers to the reduction of a prison sentence.

I think that's how we picture it, right, when we are praying for remission? We want a get out of jail free card for a few weeks or months... we want to be set free from the invisible chains we all feel dragging us down... we want to be able to go where we want and do what we want without our silent keepers denying us access to the life we remember. We want this to take 2 years instead of ten.

I also like the jail metaphor because once you've been in the big house, you know perfectly well you could land back there unless you are careful. You've been to confinement hell, and it is always with you in some respects; it shapes who you are.

Poetry aside, the medical definition means there is no disease activity. Ummm... this is a problematic definition for us, isn't it? How many of us spent years quietly gestating this stuff without having any idea we were doing it? Spirochytes are nature's sneaks: they can be having a field day proliferating without you feeling a thing.

So what I think we really mean is an absence of symptoms. Maybe our blood work also looks better.

I'm guessing that this definition probably comes mostly from the cancer world. There, it can be a lot easier to track the disease's activity: you can watch the tumor grow (or not) and the medical community has become fairly sophisticated about knowing how to tell when a body is disease free versus when it is disease quiet.

For us, the medical community hasn't even figured out how to diagnose us with something consistently measurable, let alone tell if it is gone or just dormant. Particularly if you rely on antibody tests as a measure of lyme*, you are going to have a very hard time distinguishing remission from a good month from a cure.

All this adds up to: I think remission for us probably means we feel good for an extended period of time without taking handfuls of pills, spending hours each week rifing or doing some other aggressive treatment. You might be doing "maintenance" (an occasional round of herbs or monthly rife session) but I think what we mean by remission is having our lives back for a long enough period of time that we can relax.

So how many of us get this desired state of being? Here's the numbers for people answering the question, "Since you’ve been in treatment, have you ever experienced a period of remission?"

There's good news here! Most people get periods of remission. In spite of what it seems when you are in the grind of treatment, the majority of us will experience relief at some point.

Of course, there's the flip side. It's a wee bit depressing to see that 45.7% of those in treatment for 2-5 years are sure they've never had a period of remission, and even more so that 14.3% of people treating for 1-2 decades and 11.1% for over 2 decades answer no. They say beating this thing is a marathon, not a sprint, and surely these numbers validate that perspective.

(We aren't of course, seeing survey responses from a lot of people who have beat lyme completely and stopped tracking what is happening online with regard to lyme, and therefore never knew about this survey. If I redo this, I'm going to make more efforts to connect with this crowd. Anyway, as always, have some perspective as you look at this.)

So for how long do people experience symptom free living when it does come their way?

First off, there's a couple things in here that made me do a double take (and perhaps you, too). A few people have reported a longer remission period than they've been in treatment. My first thought was that maybe someone got diagnosed fast, it went into remission easily and they are still there.

But... that didn't make much sense to me on second thought. Why fill out a survey on chronic lyme if you aren't sure it is chronic? (Feel free to answer that if it was you!)

My next thought (which I'm guessing might be more on the mark) was that a handful of us had other diagnoses that incidentally had some treatments that did us some good. In my case, I got lucky to be working with a Doctor of Chinese Medicine while I had a fibromyalgia diagnosis, and her treatments were definitely helping.

So someone might consider themselves to have been in remission from a scenario like that, but not be thinking of themselves as explicitly treating for lyme? Maybe.

Guess three: someone hit the wrong button. Simple human error. Who knows.

Anyway, looking past the details that are confusing, let's look at the numbers. Here's what I note:

• Remission can last anywhere from months to decades. 
• The longer people have stayed at it, the more likely they are to get a break at some point.

And I wondered if, when you've been in treatment for a while, what you label "in remission" and what you label "cured" is fuzzy. What I mean is this: if I'd had a remission for 5 years or more (as 37.5% of the really long term treatment folks report) I'd probably just call myself cured during those years.

But perhaps when you are really an old hand, wisdom prevails and you know there's no sure thing with this disease. Or perhaps cynicism sets in, and you no longer quite believe in a full recovery. (There are those who would say that what I call cynicism is actually wisdom... that however is a debate for another time.)

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*I say this because the body often continues making antibodies beyond the immediate threat... that's the theory behind immunizations.

** This is probably in part because Chinese medicine uses a whole different paradigm for diagnosing things... what we called "fibromyalgia" in western speak we had a completely different label for in Chinese medicine speak, and it may well include what we call "lyme" in western speak. Did that make sense?