Healing with an Open Mind

In the last blog, we looked at treatments that people have tried and our satisfaction levels with those treatments. The bottom line with lyme seems to me to be that nothing works for everyone, and there are a growing number of potentially effective treatments that people are trying.

So what determines which protocols people try? I think this is a combination of science, culture and faith. For some people, it's all the same: they have faith in the science that our mainstream culture says is true. For others, it can be hard to tell why we are open to one thing and not another, and for us, that probably means the three categories are not so closely aligned.

Our mainstream culture around medicine leans heavily on allopathic* (conventional, western... call it what you will) methods. Most medical schools train mostly or soley in allopathic methods, and most research done in the US is on pharmaceuticals that are the child of western allopathic medicine.

In India, you might be given Ayurvedic medicine, or in France, a homeopathic remedy; here, you get allopathic unless you seek something else out. This a matter of culture, not science. Ayurveda has 5,000 years of trial and error behind it, for instance; a much longer track record than allopathic medicine has. For those interested, this article offers a glimpse into the complexities of our medical culture wars.

Science, for most people in the US, is equated directly with those studies that some governmental agency has evaluated and dubbed "true" or ones that have made it into a select handful of medical journals that are peer reviewed. While there is a softer meaning of science that is more about "being scientific" (paying attention to the actual effects of something and evaluating it objectively) it is the harder meaning of science that most people rely on.

The uphill challenge in this set up for lyme patients is two fold. First, chronic lyme can be considered to be an emerging illness. There aren't too many "peers" available to review studies who even believe our condition exists nor are they always even handed. The worst example of the politics of the peer review system is the well-known debacle with the Infectious Disease Society of America (IDSA).

Secondly, the most common treatment that US doctors offer is antibiotics. They help a lot of people, but they don't help everyone (see my last blog "Prayers for Silver Bullet Unanswered"). And taking only antibiotics can cause a lot of problems in our systems, from out of control yeast to encysting of bugs, giving the false impression of being healed.

A lot of the alternatives (that either don't have these nasty side effects or are needed as partners in a balanced protocol) are simply not being studied with the same enthusiasm as the patentable (and therefore potentially high dollar) pharmaceuticals are. There's little economic incentive, for instance, in studying garlic as a healing herb when I can grow it myself and make my own medicine.

I'm going to wander out on a limb here and say that trusting only in what science (as defined above) currently has validated is likely to lead to not getting well.

Finally, the third factor in what people choose is faith. Faith essentially means believing that your protocol will be beneficial for you; at the very least, it means thinking it is possible that it will help (being neutral about it). A lack of faith undermines what might otherwise be a powerful healing modality for you.

When a medical practitioner talks you into something that you have reservations about, they ignore the fact that what you believe actually matters more than what they believe. Of course, if you have faith in your doctor, they can be same thing. Thus, the importance of choosing a doctor you trust.

Now lest you think that science is all that should matter, it would be good to look at what science says about faith. Believing in your treatment is huge. This interview about the placebo and nocebo effects is a very good summary of the implications for all of us on our healing journeys.

After listening to this interview, and contemplating it for a while, I've come to the conclusion that the worst thing one lyme patient can do to another is to say to them, "Your protocol won't work." Undermining a person's faith in what they are doing means narrowing the field for what can work for them, and reducing the likelihood that it will indeed work.

In the end, who cares if it was science or faith that pulled someone through? What's really important is that people get well.

I'll use myself as an example of how these three things interact. I grew up in a family of doctors and scientists and basically held a firm belief in the power of science from a young age. I love a good study, and am deeply grateful for the folks who are doing good science out there.

I've also spent my whole adult life exploring alternative culture: natural foods, intentional community, spirituality sans religion, those sorts of things have been the water in which I've swum. While I have my share of mainstream indoctrination that tells me antibiotics are very powerful and useful medicine, I also take them with a grain of salt and have come to believe that they are overused. And the strong bias in my alternative circles is toward herbal medicine and to practices that explore the mind-body-spirit connection.

Which brings me to faith. I'm wired at a personality level to explore. I have faith, more than anything else, in the mystery of life: if you follow your intuition and trust in the messages of your own body (even if these things are illogical and have never been studied) then these are the best compasses you can have.

So the messages for me from science, culture and faith are not all saying the same things. Basically, I came into my lyme journey with an openness to try and consider damn near anything, studied well or not, and wanting to see what they do in my body before drawing any conclusions. I didn't want to like antibiotics, and I've had to grudgingly admit that they've done me some good. (Surrendering our cultural programming--mainstream or otherwise--can be another one of those steps a lot of us need to take to get well.)

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So this brings us to today's data from the survey. I was curious about what people have actually been willing to try out, and how enthusiastic people were about those things. Here's the chart d'jour:

When I look at this, I get very interested in the gaps. Some things are tried at a higher percentage rate than there are people enthusiastic** about them. Other things are tried very infrequently, in spite of having a decent enthusiasm rating.

Antibiotics and herbals are taken the most frequently, and they also come in with the highest ratings. I was surprised to see the gap on antibiotics: 95% of us have tried them, yet they only garner enthusiasm in 2/3 of us. You'd think from how they are talked up, that number would be higher. I was also surprised to see homeopathics coming in third in how many people have tried them. It seems like most people still think of homeopathics as psuedo-science, and yet half of us have given them a try for lyme. Trippy.

At the other end of the "tried it" spectrum, both rife machines and IV vitamin C have decent enthusiasm rating, and yet they are tried very infrequently, only 15% and 16% respectively. This really brings questions of cultural influence and faith to the forefront for me. Why aren't these things tried more often? I think looking at our biases can be really helpful. What stops you from having an open mind?

For folks who can't find a lyme literate doctor, or can't afford regular doctor's visit, it seems like there are some good options here for trying that have decent enthusiasm ratings (remember this is enthusiasm, a step above "it did something for me.") Please note: I'm not recommending flying solo if you have options; I'm also unwilling to damn people without options to a death sentence.

You can do most of our list on your own if you really have to: herbals, infrared saunas, rifing, vitamin C/salt***, homeopathics, essential oils and colloidal silver. And the first four of those have a better than 50% enthusiasm rating from our survey participants.

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In the end, does any of this really matter, or am I just deep into philosophizing today?

I compared the data from different groups of lyme patients in order to get a sense of whether being open to trying more things actually makes a difference. As always, I want to see this with a larger group, but based on this initial survey, here's something interesting.

People with the worst reported outcomes have tried an average of 2.75 of ten treatments.
People with the best recorded outcomes have tried an average of 3.7 of ten treatments.

So, yes, I do think being open minded matters.

My advice: if you don't see noticeable improvement from something within, say, 6 months... try something else (or something additional). And if you are able to approach lyme from multiple angles simultaneously (say, antibiotics, herbs and an infrared sauna) I believe you have a better shot at getting well.

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Notes:

* I want to acknowledge that this link is not coming from what many folks would consider an unbiased source. I searched around for one that just had even handed definitions of the different ways of approaching medicine, and it was really hard to find one. This is as close as I got in a half hour search that also mentioned chronic illnesses.

What it brings home for me is how much healing is really caught up in controversy in this country. I can't even find a link to something truly unbiased!

** The percentage here is based on people who had tried this treatment method. I chose to go with only the two highest ratings on this one. What I was really curious about is who was excited about their protocols. Rating something "somewhat helpful" is a little like damning with faint praise, and so I left those responses out.

So you should read this really as being about enthusiasm... those things you might recommend to a sick friend. You are unlikely to tell a friend, "Hey try this! It was somewhat helpful for me!" You see the difference?

*** Of these things listed as potential home remedies, the vitamin C/salt protocol is one that I am not confident of the safety of. Please look into all of these. Saunas also have to be done with care that you don't get dehydrated, some of the risks of antibiotics are discussed in an earlier blog ("Damage Reports") and every protocol listed has caused herxes that are potentially dangerous, and certainly uncomfortable.