The Taboo Topic of Dr. Effectiveness

Today we look at one of the touchiest subjects I know of in the lyme community: our doctors and their success rates. So many people struggle for such a long time to even find a doctor who will listen to them, take their illness seriously and treat it with compassion and diligence.

As a result of this, we are often fiercely loyal to the people who helps us. I think this is not only very understandable, it is also appropriate and healthy. Lyme literate professionals deserve our support!

So this loyalty is appropriate. Up to a point.

Where it can cross the line into not being healthy is when loyalty to a practitioner or a protocol, general approach or specific product feeds into judging or attacking other people's (sometimes equally loyally held) practitioner, approach, protocol or product. When we go there, we are ill serving the community as a whole, and not incidentally, creating unneeded stress for ourselves.

So it is within that context that I invite you to look at today's blog information. With an open mind and heart, consider that there may be many paths to healing.

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As a reminder, here's the chart form the last blog about how different types of practitioners tend to approach healing lyme.

As we can see, there are variations in how groups of practitioners approach healing lyme. Today's question is, are there also differences in how successful they are?

Here's the chart that is probably going to get me in trouble. I have, in fact, been nervous for several days about publishing this one, and hope people will talk to me about it if they find this distressing.

I hear an awful lot on our lyme support groups about how critical it is to find a lyme literate medical practitioner, and indeed many of us--myself included-- are very grateful for the support that our lyme literate professionals provide. However, this chart flies in the face of a few pieces of strongly held beliefs: one on the part of the mainstream of the lyme community and one of mine.

So here's the scoop: there appears to me to be no statistically significant difference between having a lyme literate doctor or not, nor between the different types of practitioners. If there is any difference in the self-reporting, albeit slight, it is this: patients who on average report the best outcomes are the ones who don't have a lyme literate doctor. (I can hear the screaming already.)


The other piece of dogma being upset by this is mine. I'm such a natural healing girl, and I really wanted to see the DO's and ND's doing spectacularly better than any other group. And they aren't.

When you add up the numbers for folks in the final three categories, here's the totals:

No Lyme Literate Practitioner:  33.8%
Lyme Literate MD's:                  29.2%
Lyme Literate ND's and DO's:   30.2%
Lyme Literate NP's:                    28.6%

There may be a large enough margin of error to this study that the 5 point spread we see here mean nothing beyond the apparent fact that you can indeed get well without a lyme iterate doctor. I also think this means (when combined with the first chart) that a wide range of approaches can get you well (and, for that matter, can fail to get you well.)

Part of the reason I've been nervous about publishing this is that I have on occasion said on our lists... as cautiously and respectfully as I can... that I think people can get well without a doctor. Until I ran the numbers, this was more a sense that I ad than it was based on any statistics.

And the response I often get back to that is fear. We have been taught very well to think that healing knowledge is the sole territory of professionals (with often a very narrow of "professional" at that, with lots of other people, such as herbalists and homeopaths, labeled "quacks"). Certainly we (the laypeople) can't possibly know, or learn, how to heal ourselves.

In the dominant cultural paradigm, it is, in fact, foolish at best and downright dangerous to think otherwise.

I think this is indoctrination, that it has a very strong hold on a lot of us and is reinforced by living in a litigious society. (I myself have been nursing a fear that just publishing this blog will make be vulnerable to being sued.) And yet, I'm not going to not publish these numbers out of fear: doing that feels to me like caving in to that indoctrination.

Part of what makes me think this indoctrination is in play is that 15.4% of people without a lyme literate doctor are not treating. It makes sense: if you are constantly hearing the message that you need a lyme literate practitioner, it is very easy to internalize that to mean, "well, then I might as well not even try."

And that is dangerous. (It is also unintentionally classist: it puts at greatest risk those people who can least afford access to specialty care, and/or whose cultural background makes them the least likely to be confident that they can educate themselves and take things into their own hands.)

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In publishing this information, I'm concerned about the impact this might have on people who are very invested in their doctors. I am absolutely not interested in undermining anyone's confidence in their practitioners. And I am absolutely interested in offering real hope to people who can't find, afford or stomach a doctor.

Now here's today's grains of salt about the numbers for people without a lyme literate practitioner. Someone without lyme literate support (either their doctor or a support group of knowledgeable friends) may think they are cured, when actually they are in remission, or have chased the bugs into cyst form, and are still very sick.

However, I don't think it is fair to consider all of these responses to be ignorance-based, given how well educated many of my fellow patients seem to be. And the truth is, even doctors can make those same mistakes in evaluating someone's condition.

I think it is also good to note that a lot of folks reporting that they've gotten worse may very well be experiencing lots of herxing that makes them feel crappier, but is a sign that bugs are dying off. So I don't want to make too much of the fact that the gotten worse count is lower for the folks without a lyme literate doctor: it may just mean they aren't treating aggressively enough. On the other hand, it also may mean that they are using gentler methods that don't promote huge herxes... and which may or may not be actually healing them.

Still, I don't think everything in the category of no lyme literate support can be explained away, and I was very, very surprised at these numbers. As always, I want a bigger sample size and I want to break this question down further: how many are truly flying solo and how many have a primary care physician who is working with them but is not lyme literate?

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More than any other blog I've written, I want to encourage people to use this information gently with each other, and to have it be a source for hope and not despair or regret for any decision you have may made in the best interest of your own health.