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?

At the Core

So far we've explored how treatment effectiveness, our enthusiasm for our treatments and what people have tried. Today, we look at a different angle on treatment options: what do people currently consider to be the core of their protocols.

This is different from what we were looking at in the last couple blogs because it is less about what we've tried out and more about what we are relying on, based on whatever level of experience we (and our doctors) bring to this.

We'll also look at a couple of the specific protocols we surveyed about to see how those are working for people.


Here's the data from the survey:

Now, I could spin these results in a myriad of ways. Here's a few:

• People who try more things get better at a higher rate (I spun one of my other blogs in just that way, remember? See how the purple line pokes out further on most things?) In other words, integrative medicine is the way to go, and the more angles you hit lyme from, the better off you'll be.

• People who get well are the ones for whom either antibiotics and/or herbs work well. (Given that there is lots of purple on both of those.)

• Given that the best outcome patients only rarely ventured outside this list of 6 things as their cores, if you are going to get well, you'll probably find it here. (This analysis is especially suspect: just because I surveyed about them doesn't mean they are all that special. If I'd asked, say, about hyperbaric chambers, they'd probably have a similar response to some of the stuff here.)

• In general, you are fortunate if you have access to antibiotics (a doctor who will prescribe them) and they work for you. Almost 80% of people doing well have them as a core, while only 62% of the worst outcome people do.

• The biggest gap between worst and best outcome patients is in the use of herbs. Therefore, herbs must be a key thing for getting well.

(Side note: see how much fun it is, playing with statistics? I could write a whole blog on how tempting it has been to spin data to fit my own preconceived notions biases. As a general media literacy rule, always be wary of how people spin data! Look at the graphs closely and see if you see a different interpretation.)

Unfortunately, I have no way of knowing which of those spins is actually true; or perhaps a better way to say it is that each of those spins is probably true for some people and not true for others.

I do find it interesting, though, that antibiotics are only core for about 70% of us. I regularly hear people on our support lists express surprise that there are non-antibiotic options out there, or that people are trying anything else. And here's some concrete numbers to say, yes there are other options, and not everyone is primarily focused on antibiotics as their core... in fact a significant minority are looking elsewhere for healing, a chunk of whom are doing really well.

Beyond that, this is one of those blogs where I invite you to pick your own spin. You've seen a LOT of data from me, and probably have looked at other people's as well. What do you think is going on?

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Now, I worried a little bit that there might be a built in problem here that related to time. We all know that chronic lyme cases don't resolve overnight, and it seems like the first thing that almost everyone tries is antibiotics. We also know that a lot of folks in this survey are relatively new to the treatment game (just over half of the people in this pool have been treating for 2 years of less).

So maybe people are doing best with higher doses of antibiotics just because they are on them longer? Or maybe people give up on certain protocols, or we put faith in different things depending on the time we've been in treatment?

(I actually fully expected that second thing to be true, that we'd see a drift away from antibiotics and toward more alternative things as people decided the first thing their doctors tried wasn't going to work for them. There's those biases rearing their ugly heads, eh?)

So I ran these numbers about treatments for longer and shorter term patients, and here's what that looks like:

If you can see something here you'd call statistically significant, I'll eat my hat. When you take into account that the sample sizes for rife machines and essential oils are pretty small, I don't see any significant differences here at all. So the differences we see in core protocols don't appear to be because people tend to gravitate toward one end of the antibiotics-alternatives spectrum over time.

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I also wondered if the variations were more about who we see (or don't) than anything else. Here's the breakdown, based on what type of practitioner support we have:

Now this is interesting! Here we do see significant differences (and in the next blog we'll look at lyme treatment success rates among different types of practitioners). The bottom line is that MD's are far more reliant on antibiotics as the core for treatment than ND's and OD's.

And people who are either essentially self-treating or relying on less knowledgeable doctors (which in some cases is functionally the same thing) are more likely to try a variety of options. This is probably in part because most non-LL practitioners won't prescribe antibiotics for the long term, and so they are forced into looking at other things.

However, some people are in this category voluntarily; they are choosing (either based on philosophy or giving up on professionals) to do it alone, in spite of the fact that it reduces their treatment options by eliminating access to long term (or any) prescription drugs.

Most interesting, perhaps, is how many therapies have a high enthusiasm rating (see my "Healing with an Open Mind" blog) and are not being used by lyme literate doctors, and especially MD's. This isn't that surprising  because MD's (like every other group of humans in the world) tend to rely on what they know, and antibiotics are one of their primary tools in their practices in general.

This information can be particularly helpful if you are in the process of choosing a lyme literate practitioner (and are either fortunate enough to live somewhere that gives you options, or are going to have to travel no matter what). Considering what your own preferred approach would be to healing, it is a good idea to choose a practitioner who is going to support hat basic mode.

As a very general statement, here's what I mean. Fan of antibiotics? Look for an MD. Interested in herbs and other alternatives? Look to the DO and ND doctors for that. Of course, you always want to ask about how that specific doctor approaches it, and these are generalities. Still, they look pretty significant to me, and knowledge, as they say, is power.

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OK, I want to go down a side street before we close today. I had asked survey questions about two particular protocols (and of course since starting this process a couple months ago, have come into awareness about many others I could have asked about... next time!)

I had meant to include this with the last blog, but spaced it out. (You know how that goes). Here's the info about those two protocols.

 I've included the info about antibiotics and herbals next to these specific protocols because these are basically subsets of the larger categories: Marshall uses antibiotics as the main bug killer (in conjunction with other things) and Cowden is an herbal protocol.

It looks like both protocols perform as well as their larger categories, but they don't generate more enthusiasm. It isn't surprising to see them tried less, as there are any number of variations on the theme of antibiotic and herbal protocols.

I don't think this reflects the same kind of belief biases I was discussing in the last blog so much as there being a plethora of choices within each other larger categories.