Making It Easier: Supportive Therapies

Wouldn't it be nice if lyme could be dealt with simply by killing the spirochyte form of the little buggers? That's challenging enough, given that their reproductive cycle is much longer than you average bacteria (measured in weeks rather than hours). But then we pile on top of it all the complications, and we find ourselves popping a dozen different pills.

So today's blog focuses on supplemental or supportive therapies. What we do to regain balance in our systems, cleanse ourselves, and tend to our emotions and spiritual needs.

In a way, I feel on much more solid ground offering these patient evaluations than I did with the treatment evaluations. Treatment is a very slow process with lyme. On the other hand, we can tell almost immediately if these things are giving us relief: we detox and the herx headache eases off (or not); we walk out of a therapy session and feel lighter (or not); we take a walk and have a wee bit more energy (or not); we sit in the infrared sauna and feel our pain go down a couple notches (or not).

I'm going to give you two different groupings for this, as I think this will make it easier for our lyme brains to absorb the information. The first is for the physical supports, things like massage, fasting and dietary changes. The second is for the emotional or spiritual support such as therapy, meditation and support groups. Recognizing that the dichotomy is a bit false, I've put yoga and energy healing on both charts.

For both charts, I'm using the same ratings system I used for the pathogen killing techniques. People were asked to rate the things they had tried as "not helpful" (which received 0 points) "somewhat helpful" (1 point) "helpful" (2 points) and "very helpful" (3 points) and then I averaged those numbers together. So something that everyone who tried it found very helpful would have a "perfect" score of 3.

Here's our two charts:

One piece of information that doesn't appear on the above chart was a big surprise for me: nearly 29% of patients report not having tried detoxing. It seems like "detox, detox, detox" is one of the main mantras of this movement. So I did a little more looking into those folks, curious to see how different it might be.

After a quick look through my various charts, it seems there aren't really many differences. People not doing cleansing aren't noticeably higher in any particular symptoms, nor are they doing any better or worse overall, nor are they reporting their lives being more or less compromised.

The biggest anomaly I found was that they reported noticeably lower kidney damage numbers: 7.4% of those who haven't tried cleansing report kidney damage, compared with 16.8% of the total numbers surveyed. (And I'm not even going to pretend to have a reasonable speculation for why that would be so.)

And people not doing cleansing were a little more likely to be working with an MD, and less likely to be working with a Naturopath.

I was also interested to see that while cleansing got high marks, the more extreme version of fasting didn't. It still falls in the general helpful range, but our enthusiasm for fasting is not very high. Thus the old adage of "everything in moderation" seems to apply here.

We'll talk in the next blog about specific dietary changes. For now, though, just note that they make a big impact for a lot of us. And infrared sauna technology appears to be a friend for many a lyme patient, with the highest rating overall.

The last thing I want to highlight is that we seem lukewarm about exercise, including the subset of yoga (which always sounds so darn healthy, doesn't it?) I often have the experience of friends asking me if exercise helps (hopeful for inviting me on a walk, or enticing me back to the yoga class I've primarily skipped for the past 8 months.)

I'd say 1.35 is pretty much a perfect gestalt description of my personal enthusiasm for it. I'm sure getting up and moving more is helping keep me out of the bedridden category, but it isn't really making me feel better in the moment as near as I can tell.

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We are not just our bodies. Some days with a chronic illness, we can develop deep doubts about that, as the state of our bodies seems to take over the rest of our lives. And yet, that isn't the whole truth about us. Our spirits, minds and hearts suffer from lyme as well, and healing from lyme is infinitely easier when we also attend to those other parts of ourselves.

Here's what you say about what you've done to help:

The biggest theme I see here is this: nothing replaces peers in how valuable their support is for the chronically ill. Whether it is live (the highest rated choice if you can swing it) online* or through co-counseling or other formalized peer therapy setting, we need friends and people who share our experiences.

Peer counseling also tops the list of various types of therapy. I was very interested to see that the next cluster is all things I'd categorize as non-intellectual modalities. Getting out of our heads and words and into our bodies and breath (in meditation) and non-rational selves (with music and art therapies) appear to be overall more valuable than talk-based therapy.

I wasn't expecting talk therapy to come out at the bottom, though. My husband reminds me occasionally of studies that have been done comparing the effectiveness of someone with a PhD in psychology to someone who is simply a good listener for providing therapeutic benefit, and the surprising results have been that training doesn't necessarily help at all.

(This is good news for lyme patients who are largely financially strapped anyway. Friends are way less expensive than therapy!)

Still, therapy of all kinds appears to be more beneficial than not.

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As with the lists of different options for primary treatment, the overall message here seems to be that different things work well for different people. If you are searching for something to ease your body or soul, and don't have a strong sense internally of which things seem most interesting to try, perhaps starting with the things that have higher patient ratings makes sense.

However, I'm guessing (especially for the emotional and spiritual aspects) that simply trying something will have benefit for most of us. Blessings on your journeys!

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*I think this number is probably artificially high, though I have no way of knowing by how much. Most of the people who took this survey found out about it from online sources, many of them support groups. And I'm assuming that people on these groups are more enthusiastic than average about those groups.