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.

Prayers for Silver Bullet Unanswered

What works and what doesn't for treating lyme is probably the single most talked about topic on our support groups. Today, Lyme Voices wades into the fray with our survey results on this question. This will be the first in a series of blogs on the treatment questions.

The number one thing I took away from this is that there is no silver bullet that works for everyone, and everything I surveyed about got a "very helpful" rating from some people. That clears it right up, doesn't it?

The way the ratings work for the charts I'm presenting is that I asked people to rate things they had tried with their sense of how helpful it was for them. Then I calculated the average response using these numbers using this formula:

Not helpful = 0*
Somewhat helpful = 1
Helpful = 2
Very helpful = 3

Thus, if everyone who tried something rated it as "very helpful", it should have a rating of 3. It turns out that everything I asked about falls between a 1 and 2-- overall, somewhat helpful to helpful. If we'd hoped for a resounding "This is it!" response, I'm afraid these results** disappoint.

So, we have a top cluster of antibiotics, infrared saunas and herbal antimicrobials. I don't know with the sample size we had if there is much of a statistically relevant difference between these three. But it seems that these three come strongly recommended by chronic lyme patients.

The second cluster also represents treatments that have a good amount of enthusiasm among the people who have tried them, landing right in between "somewhat helpful" and "helpful": IV vitamin C, vitamin C and salt, rife machines, homeopathics and essential oils.

The last category in this very rough clustering are methods that have clearly helped some people, but the support is more luke warm: colloidal silver and hydrogen peroxide. Both of these were also the only ones of the ten in this chart who had more "unhelpful" ratings than any other answer (among those who had tried it).


What works according to those who are getting well

Now, let's look at the same ten treatments, with the folks that have had the best outcomes next to the general lyme populations' responses. By best outcomes, I mean people who are reporting being 75% better or cured.

First, a little additional background on this crowd. There were 69 people in these categories in our survey; only 19% of the people who answered this particular question***. Of people reporting best outcomes, 57% have been actively treating for at least 2 years. That also means that 43% of these folks have been at it for less than 2 years.

That got me curious about how many of them may actually be experiencing a first remission, and not actually going to hold steady with what they are currently reporting. This, in and of itself, is very good news, and given that so many people (66 to be exact) in our survey report no gains or backsliding since starting to treat, it makes sense to count them as having a good outcome, even if it doesn't last or stay steady.

However, it is different than just looking at the pool of people with both a lot of years under their belts and good outcomes--for that we'll need a much larger survey. Then we could speak more confidently about the effectiveness of treatments over the long haul.

Still, here's what this group says. The order of treatments is similar, but it appears that this population has stronger opinions about things. The rating system is the same.

What we see here is that the top 3 answers land in the helpful to very helpful range for people who are doing the best. Again, antibiotics, herbal antimicrobials and infrared saunas top the list. (Now, does that means that if these three things work for you, you'll do well? Or does it mean something else? Need more data!)

Again, our middle cluster falls right between "somewhat helpful" and "helpful" and includes essential oils, rife machines and vitamin C/salt (which are more highly regarded by this group) and IV vitamin C and homeopathics (which don't show any significant difference among those in this subset).

With our third grouping, colloidal silver and hydrogen peroxide, we see them drop below the somewhat helpful line. As with the full survey group, the most common response among those who had tried these was "unhelpful". My conclusion would be that, while they may help some people, they wouldn't be the first thing I'd gravitate toward.

Next blog, we will look more closely at these numbers and break them down in some different ways. For now, go forth and discuss!


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* I considered making "unhelpful" a negative number. I think if I redo this survey, I'll add another choice, which is "harmful" and that really ought to be what gets the negative rating. "Unhelpful" could either be a neutral or a negative, so it didn't feel right to make it negative.


** The astute reader of my blog will probably have noticed that not everything I surveyed about on this question (which was #12 for those using the questions blog as a reference point) is here in the charts. I decided for reporting to make sure I was doing apples to apples. So the ten I've included here are ones that people are using to kill off our shared pathogen of lyme.

So, I left out: fungal and parasite pharmaceuticals; herbs for support of treatment and cleansing and detox. I've also left out, for now, the two specific protocols I asked about: Marshall and Cowden. We'll circle back around to these other ones in later blogs.

In doing so, I am leaving aside for the moment all the myriad arguments ala: "there's no scientific evidence that this kills pathogens." People are using these ten things for that purposes, regardless of the arguments swirling around them, and thus I'm interested in what patients report.


** I don't think we should conclude from this that only 19% of people can get well or show major gains. A lot of folks who have gotten well are probably not all that focused on lyme any more and thus did not participate in this survey, or even tune into its existence; I feel lucky that a handful of them are still around and did participate!