Breaking the Bank to Heal the Body

Let's talk money!

So how much does a nice long case of lyme set you back? And are some protocols more expensive than others? That's the question today as we open our section of the survey on finances.

I asked people in the survey to give me ballpark numbers of how much they think their protocol costs each month. This was a bit tricky for some, because many people with insurance never see the details of their actual bills, or if they do, these numbers are skewed because insurance companies are charged less for many treatments than self-pay patients would be.

The bottom line in this example is a procedure that would cost someone who pays out of pocket $1,500. The insurance company would pay $400 for the same procedure... that's right, the uninsured pay over 3X for the same procedure as the insurance companies do.

Thus, it is very hard to get a sense of what the "true cost" of any procedure would be. It is also incredible how biased the system is against poor (but not quite poor enough to be on government assistance) people, who are the least likely to have insurance coverage and are paying the largest bills.

This also means that self-pay patients have some wiggle room (heck, I'd actually call it a right) built into the system to be able to negotiate your medical bills. Many hospitals now have a sliding scale payment structure for their clients, which does some of the "negotiation" for you. Here's a website with handy tips on negotiating bills.

Finally, this is a great website by a doctor who is trying to bring all of this to light. He shares what he struggles with in making decisions about how to relate to both patients and the insurance industry, as well as explains coherently the basic way all of this is set up.
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Given the unsettled nature of what medical procedures "really" cost, we have a bit of an apples and oranges issue with the question of asking people to estimate their medical expenses. For instance, the self pay people probably have a better handle on what their things cost (since they are forced to actually read and pay the bills directly) but they are also going to report the rates as inflated compared to someone who reads detailed insurance bill reports.

Still, I did ask, and this is what the survey yielded:

According to this website, "Health care costs for people with a chronic condition average $6,032 annually - five times higher than for those without such a condition." That's just a little over $500/month, and presumably includes everything.

Hmm... just our treatment protocols alone seem to put us into that ballpark 38.5% of the time, with 25.8% of us spending at least twice that much. That's not counting testing, practitioner appointments and emergency room visits (such a weirdly polite word for what that is, isn't it? "Visit" hardly seems appropriate to describe the experience of going to the ER with lyme.)

More to come in later blogs about other expenses. But for now, let's just note that chronic lyme is a depressingly expensive habit, even among chronic illnesses.

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Keeping in mind that we also probably have a lot of overlap in our non-core protocol elements (how many people do you know with chronic lyme who aren't taking probiotics, for instance?) there is a noticeable difference in the average cost of our protocols.

Here's what people reported:

The general summary here is that antibiotics are the most expensive way to treat lyme, and rifing is the least expensive. Now there are of course plenty of nuances here. Rifing (and the runner up in the least expensive category, energy healing) is unlikely to be covered by insurance, where antibiotics are the most likely. And who pays makes a big difference to how affordable things feel.

(And yes, I say that even knowing that a lot of people get turned down for long term antibiotics. I still think they are more likely to be covered than anything else on this list. Ever tried talking your insurance company into covering your shaman's fees? Or purchase of a rife machine? Unlikely.)

Second, there's a huge difference in cost between an antibiotic protocol that only uses oral doxycicline (a cheap pharmaceutical if ever there was one) and IV antibiotics.

Finally, it is unclear to me if all of the rifers spread out the cost of their machines over what they expect to be the lifetime of their treatment or just ignored that when reporting the monthly total. It is only a fair comparison if the cost of the machine (and electricity) are factored into this somehow.

Still, for those without insurance, this will be a good data point to consider as you sort through what is possible for you.

I think what most of us would ideally like is to have our health care costs be manageable, have choices in what types of medicine we have, a minimum of administrative hassles, and assurance that we won't be dropped because our circumstances have changed.

THAT would be the health care plan I imagine we could all get behind. Unfortunately, for most of us, we don't even get one of these, let alone all four.


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Let's look at one more chart for the day in order to reasonably compare protocol costs. I'll give you the doctor expense totals in the next blog, but I wondered if there was a cost discrepancy by protocol in doctor visit expenses. Here's the chart that sated that scrap of curiosity:

There are a handful of people spending over $1,000/mo on practitioner expenses in each treatment protocol category, though the least for the folks using rife machines and homeopathics. Almost all the rifers, in fact, spend less than $500/month.

So again, rifing looks to be the least expensive way to treat chronic lyme disease, which validates one of Bryan Rosner's main points in his books on treating lyme: that rifing is a financially accessible approach to treatment.

There's more, of course, than money involved in our treatment decisions, but it also isn't a factor we can afford (pun intended) to ignore. Hopefully these bits of information will help.

Optimism, Osteopaths and Homeopathics

I was about to walk away from the optimism/pessimism topic, when a couple more ways to sort the data tickled my fancy. I wondered if it mattered what protocols people were using, and what type of practitioner someone was working with. So today's blog is utterly about scratching my curiosity itch.

Knowing (as always) that we need bigger sample sizes, please take this one with the usual grain of salt. However, I was floored by a couple of these patterns and it seems very unlikely that it is all fluke and no substance.

Here's the numbers, when we sort optimism levels by practitioner type.

Patients of DO's call themselves optimistic in 75% of cases, compared with 46.3% of the general response population. That's a big difference. Only 3.6% are somewhat pessimistic, and none of them report being very pessimistic. In fact, across the board DO patients are the highest ranked in optimism and lowest in pessimism.

ND's look better than average as well, but not nearly so good.

Now, we know from a few blogs back that DO's are doing as well with their patients as the other categories; there isn't some night and day difference in success rates that would account for this. Somehow, though, DO's are doing a better job of instilling (or sustaining) optimism in their patients.

The least optimistic are those without lyme literate support. Again, we don't have the breakdown on who within this category is working with non-lyme literate practitioner support and who is really flying solo. But it does seem like this isn't a good emotional place for a lot of people.

It makes me want to ask how many are in this category because they've given up completely (in which case, it would make sense that someone wold not have a practitioner, and be very pessimistic about recovery.)

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Now let's see if the difference shows up in different treatment protocols. We'll use just 5 core protocols for this, for the sake of simplicity.

I went back to the raw numbers for this (rather than the percentages you see) and did a little fancy math, weighting the answers in a rough way as follows:

Very Optimistic              2.0
Somewhat Optimistic    1.0
Somewhat Pessimistic  -1.0
Very Pessimistic           -2.0

...and then taking the average rating. Here's what I got as my kind of "gestalt summary" of people's answers:

Homeopathics:        +.95
Herbs:                     +.88
Energy healing:      +.88
Antibiotics:            +.47
Rife:                       +.15

First of all, note that nothing tops 1. There isn't anything that can be said to be really inspiring a high level of optimism in people. We should pause on that for a moment...

Have I mentioned that the medical community still has some work to do on helping us find real, consistent cures?

Now within that context, there are some things that I found interesting here.

First, the three that often get called "unscientific" in a derogatory way are not clumped together (I'm lumping energy healing, homeopathics and rifing in that group). It isn't just about studies.

Does rifing rate low because it ends up being a last ditch effort of the hopeless and downtrodden when everything else has failed? Or does it mean that rifing just isn't clearly helping for enough people to boost the overall confidence rating? (But then why keep doing it as a core treatment?)

I also wonder what it means that antibiotics are not apparently inspiring the level of confidence in people that you'd expect, given a culture that holds them up as the answer.

Meanwhile, homeopathics look relatively good in this rating system, with herbs and energy healing close on their heals. Does this mean that generally optimistic people gravitate toward them? Or that they are really working well for people and contributing to people's optimism?

My more cynical and science-based friends would say that this just confirms that people who like "magical thinking" (represented by homeopathics and energy healing) are hopeless polyannas. They might be right (but then why is it not happening with rifing, too?) but I'm more interested in actually getting more info about what is going on that philosophizing.

And really, we could be asking those chicken and egg questions at every step with these questions. My commitment is this: we'll find out more.

Optimism in the Face of Chronic Illness

Having a chronic illness is really hard. In addition to the physical symptoms, there is the utter relentlessness of it all: you don't know when (or if) it will end, treatment is more crap shoot than sure thing and we are left feeling like the subjects of a science experiment (often with not particularly well versed scientists in charge.)

It's enough to challenge the sunniest of dispositions, and most of us struggle--to some degree-- with depression on top of everything else.

And yet, optimism matters.  This is from the Positive Psychology UK website:

 Research has shown that optimism is correlated with many positive life outcomes including increased life expectancy, general health, better mental health, increased success in sports and work, greater recovery rates from heart operations and better coping strategies when faced with adversity.

Sounds like something we could all use a big fat dose of, doesn't it? And yet while health is included on this list in a couple ways, it doesn't say anything about how hard it is to sustain optimism in the face of long term pain and decreased capacity.

We talked in an earlier blog about the power of belief in healing. Optimism and pessimism are a kind of "meta-beliefs" that underpin everything else. If you fundamentally believe that you will get well, that is like psychic grease on your wheels.

So how are we doing in the optimism department anyway? Here's the survey results from that question:

So first off, I'm amazed at all of you! In spite of everything, 46.3% of us have sustained optimism, and 25.9% haven't yet slipped into pessimism. This community shows remarkable emotional reserves.

I started to pull out the data on how much improvement people have experienced cross-tabbed with their answers to this question, and realized that there was way to serious of a chicken and egg problem with this one: Of course you'd be very optimistic about full recovery if you are most of the way there! But maybe some of those folks did start out optimistic and it has been a factor in their getting there... ugh.

Same goes for length of infection: do we report being more pessimistic the longer we've had the infection--which we do-- because we started out that way, the length of it has worn us down or because all the optimists got well and moved on?

What I need to do instead is the study that tracks people over 5 years and asks them this question every year... I'm working on it! I want to know if optimism really does help us, if it speeds our recovery, etc.


Hope for the hopeless?

Here's an interesting study that talks about how pessimism might actually be helpful... in the short run.

Norem and Cantor (1989) highlight defensive pessimism as a coping style, which focuses around a specific context.  They looked at academic performance.  The defensive pessimist in this context is one who anticipates and worries about a poor result despite a prior good track record.  This is perceived as self protective and thus defensive in two ways, either acting as a buffer if it turns out to be right, or acting as a spur into action.

The result is that defensive pessimists tend to perform as well as academic optimists. Interestingly however, this is not true over the long term.  After 3 years the defensive pessimists were no longer performing as well as the optimists, and moreover were reporting less life satisfaction and more psychopathological symptoms.

I imagine that a lot of us adopt pessimism as a coping mechanism in our situation as well. And while this might be fine in the short term, I imagine the same basic pattern of it losing its usefulness would apply to health issues as well (though if someone knows of some data to the contrary, please post!)

So assuming that optimism would be a better option in the long run, what can someone do if they find themselves (oh so easily) drawn into feeling pessimistic?

There is a whole field within psychology called positive psychology which looks at how to be healthy, rather than focusing on pathologizing. Optimism is one of the many topics studied a lot within this field, and the ABCDE method around learning to be more optimistic (or at least less pessimistic) is one interesting piece of work to come of it.

ABDCE follows a kind of classic cognitive therapy modely, for those familiar with psychology. Here's what it stands for:

A = adversity (something isn't the way you'd like it to be)
B = beliefs you automatically have when it occurs
C = consequences of the belief (what happens in your life when you buy into those beliefs)
D = dispute your routine belief – using facts and logic
E = energizing affect of disputing a belief successfully

The E is the desired outcome of this process: if you pay attention to how you feel, you are likely to get an energy boost from getting out from under your prior negativity on the topic. (Tired in the afternoon? Maybe try a dose of ABCDE.)

The link above gives a lot more detail on this process.

There are many other ways to shift out of habitual pessimism. A good talk with a friend who makes you laugh, spiritual practice, taking a walk and shifting perspectives, and reading stories of those who have kicked lyme in its big fat rear end are just a few other possibilities. What works for you is going to be highly individualized.


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I have a particular take on optimism that comes out of my years of work in ecological activism, and that I articulate in detail in my book, Passion as Big as a Planet. I think sometimes optimism gets confused with a kind of ungrounded pollyanna-ism, an essential denial of the way things are.

For me optimism is the ability to look at things as they are (such as, "I have a debilitating chronic illness that is hard to treat") and hold to a knowing that all things change, and this thing will change for the better. Or, barring positive change, that we will be fundamentally OK regardless.

Pessimism seems to me to be a lack of imaginination: this is how things are, and I don't see any reason to believe it will be different. To some extent, this is utterly logical: you haven't seen yourself get well, you have no reason to believe it will change, it is what it is. In fact, more pessimistic folks often see themselves as realists, and bristle if you tell them they are being self-defeating.

My opinion is that neither pollyanna-ism nor pessimism will help us get well. The first won't look things straight on (and if you won't look at it, you can't strategize intelligently) and the second is unlikely to help us find creative solutions because you simply aren't geared toward looking for them if you don't believe it will matter.

For me, optimism is the middle ground that requires us to have one foot in how it is, and one foot in possibility.

The big thing for me is not what is true or even likely; it is what is going to help the most in the long run. Whatever you can do to cultivate optimism will be a move in the right direction.

Herx So Good?

Let's talk herxing. Herxing happens when a bunch of nasties die off in your system and you go into temporary toxic overload. Not everyone seems to herx, but it is a very common occurrence on the road to recovery.

The best way to deal with a herx once you are in it, is by detoxing. The link I've provided above has a nice list of ways to detox, as does this website. Here's a quick detox 101.

Detoxing basically means doing something that removes toxins from your system. Sweating is one of the body's ways of detoxing-- a lot comes out of our pores. And the liver and kidneys both have roles in detox in our bodies. 

Lyme produces a lot of neurotoxins (which give us a lot of our symptoms). We all also have some load of toxins--from non-organic foods, pollutants in the water, air and soil, skin care products and make up, gas fumes when we fill our cars, etc. Modern life is a kind of toxic soup that we all swim in to a greater or lesser degree. All of these contribute to our toxin load. So regular detox is helpful for everyone-- but it is essential for us because we have this extra load form lyme.

When we kill off a bunch of bugs, the die off produces another whole batch of toxins in our system--the more effective the pathogen killers, the bigger the load. So as we start killing off the bugs, if our cleansing channels aren't functional, we are going to get MUCH sicker... you can have horrifiherxes that last for weeks. 

Think of your body's cleansing channels like a pipe-- you can only have so much gunk moving through the pipe at once before it backs up into your system and really makes you feel awful. Nice cleaned out pipes means the stuff can flow through and out easily-- less herxing, and probably faster healing as our bodies can focus on healing rather than herxing.

My sense is that people who knew about detoxing and were doing it prior to getting sick tend to have an easier time with the healing process. (This is purely anecdotal on my part; next time I'll actually survey about this and see if I am indeed right. But for now, take that statement in the same light as "a friend who has talked to a bunch of people thinks...") 

That is, if your pipes are relatively clean at the start, you are likely to herx less and less severely. (Mama's don't let your babies grow up without regular cleansing. I'm serious.)

One of the big questions that arose for me in looking at today's data was whether or not those who believe herxing is not necessary are more likely to be in the category of folks who were already cleansing regularly... for them (us, actually; I'm in the super minority category of "not necessary but you get well faster" category) maybe it doesn't feel so necessary.

So here's what we think about this herxing thing:

Most people are in the probably and yes category. As this is the dominant attitude I see expressed on the support groups list, there's no surprise there. In fact, I was a little surprised that there weren't more people in those two first categories. Fully 1/3 of us aren't sure what to think. And a minority, 13.5% aren't sold on the "must herx to get well" thing.

So I wondered about influences on our opinions, and there was one potential influence that I had survey information about, so I'll share that here. That influence is our choice of medical practitioners.

 

It isn't surprising to me that the folks without lyme literate support are the least sure how they feel about this topic. They are also the most likely to say herxing is a sign of pushing too hard.

So that makes me wonder if philosophy on herxing might be part of what moves people away from working with doctors at all... or if the folks in this category who have a doctor who isn't lyme literate might be getting the message to back down on treatment if it makes them seem more sick, not realizing that it means things are starting to move.

As we noted in an earlier blog, this category clearly needs to be broken out into "have doctor who isn't LL" and "patients flying solo".  I'll be very curious to see how those two groups differ on this question in the future.

It is also interesting to note that patients with the most conventionally trained doctors believe most strongly in herxing being necessary. In my mind (biased though it is) this fits my sense of western medicine being more harsh than natural medicine. From a school of thought that brings us chemo, radiation and elective surgery, I'm not particularly surprised to see herxing being more thoroughly embraced.

Finally, I found it interesting that patients of the more holistically trained doctors (please note that I get it I'm shamelessly generalizing here, and I know training isn't everything) are the least likely to be "not sure". And I'm not sure what this means. Do these docs explain things more thoroughly? Have stronger opinions themselves? Do people who have thought things through more thoroughly gravitate toward them and come ready to make opinions of their own? 

Again, more questions than answers...

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One more chart for the day. Remembering that the sample sizes for some of these bars are going to be quite small, and so this should be considered all preliminary conclusions, here's the info matching attitudes about herxing up with progress patients are making.

It appears that beliefs about herxing are another one of those categories where there isn't a "right answer" in order to get well. The numbers are a bit higher in the "you heal faster" and "no" categories, but there is also a strong showing of the "necessary evil" folks. With a larger survey and some better questions, I hope we can get more clarity on this one.

One more question that arises for me. I wonder about there only being "yes" and "probably" folks in the "not treating" category. We need to know a lot more about why someone would be identifying as having chronic lyme, but not treating. This makes me wonder if fear of herxing might be one of those factors. 

If it does turn out to be a factor, we ought to be careful about how much we play up the hardships of herxing with folks newer on this journey... or how much we cling to the idea of herxing being necessary. Because surely not getting treated at all is the worst possible thing folks could be doing for themselves.

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So what's the point of today's blog? I guess I'd like to encourage folks to recognize that "herx needed" is not the only way to view this. Discuss on your lists and among your support groups, consider why we think it is necessary or not, and try to learn more from each other about the underlying beliefs we are generating and perpetuating as a community, and how they might be affecting us all in our treatment journeys.

A Profound Loss of Faith

Chronic lyme disease affects us in a myriad of ways, not the least of which is our life philosophy. Some of us become more cynical; some more peaceful as we get better in touch with what is important; some find strength we didn't know we had and feel like we are better people for it; some get more spiritual, and some less.

These changes are likely to be ones that will be with us, to some degree, for the rest of our lives. Lyme is leaving indelible stamps on each one of us.

What we almost all end up confronting at some point are our ideas about healing. There are all sorts of spectrums we could lay out around healing: from "the body will heal itself" to "the body is a machine like a car and needs a mechanic"; from "only natural options" to "bring on the pharmaceuticals"; from "I'll do it myself" to "I want a professional to tell me what to do"; from despair inducing pessimism to sparking optimism.

The spectrums play out for each of us in very tangible decisions. Natural healing fans struggle with whether or not to take antibiotics. Unquestioned faith in pharmaceuticals bumps up against the reality of years of antibiotics not gettin' it done. Faith, hope and deep-seated beliefs are tested relentlessly with this disease.

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The series of survey questions that I was personally most interested in are the ones we start looking at today. I asked people to characterize their philosophy on medicine before they became ill and after, their levels of optimism for making a full recovery, and what they believe about herxing.

Most of you know I'm not a doctor, nor a sociologist. My background is very deep, however, in consciousness work and group dynamics, and those both end up looking an awful lot at people's beliefs. So this human mind stuff is completely up my alley, and I'm very interested in hearing people's responses to these next few blogs in particular.

On to the questions!

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Among the many layers of crisis that lyme has the potential to create at a cultural level, none may be more far reaching than the profound loss of faith it is causing in conventional medicine. Here's what our survey yielded on these questions.

That's 47.4 percentages point of difference in the "before" and "now" rating for the style of medicine that is the foundation of the US healthcare system. I've been thinking of this being a little analogous to those polls on the president's approval ratings. How would you interpret it if the prez dropped 50 points in approval ratings?

This looks to me like a profound loss of faith in our mainstream medical system. And we can't vote it out of office.


Where Do They Go?

I wondered where the people who once had a lot of confidence in the conventional medical system went, and so I ran these numbers separately:

Only 14.5% of those who originally reported a lot of faith in conventional medicine have stuck with it, and 24% now feel lost and confused. (That is probably the worst possible outcome. It's hard to get well with confusion as your emotional foundation.)

The big gains (in both charts, representing everyone surveyed and only those who reported faith in the conventional medical approach prior to getting sick) are in people's movement toward embracing integrative medicine.

Integrative medicine is the both/and position. It values allopathic medicine for the things it is good at, but also embraces what are referred to as "alternatives" (which means pretty much everything else.)

My sense is that if the medical profession really started taking chronic lyme seriously, it would force us to re-evaluate some foundational assumptions we make about how healing works. And I think THAT is one reason why it is being embraced so slowly.

Medical schools just aren't teaching the thinking and skills of integrative medicine, venturing outside of the allopathic box is firmly outside the comfort zone of many medical practitioners and it is such a foundational thing that I think a lot of people simply can't do it.

If you are wondering what I mean, let's take an example--with apologies to my readers outside the US-- that is easy for us to access in an election year: staunch republicans and democrats. Ever notice how hard it is to have a calm and reasonable conversation across those lines? That's because there are deep-seated, long-standing, foundational beliefs that cause everything to look a certain way: everything gets filtered through the lenses the person has in place, and there is very little real consideration of the content of what others are saying.

It's like if you bring up the economy, an automatic tape starts running, crowding out any real potential to actually examine the issues. We are on our "it's X's fault" or "I'm not a socialist" or "corporations are evil" soap boxes and we don't even hear what the other person is saying. Same for health care, or the environment. Don't even think about bringing up abortion... we all know where that goes.

Brains shut off, emotions ramp up and never the twain shall meet. That's how beliefs you are invested in work. It is part habit, part laziness and part entrenched thought patterns... with very little encouragement for not sliding right into the familiar grooves.

Medical philosophy is very much like that, especially for the people who have years of training, and sometimes even deeper ego needs, that are driving how they approach the topic. Imagine having been a doctor for 30 years and suddenly having your basic approach questioned. Your livelihood is tied up with it, and often your ego, too.

There has been very little motivation for getting out of those ruts. And now chronic illnesses (of all sorts) are bumping up against the limits and blind spots of allopathic medicine, and while some people (both medical professionals and laypeople) are getting out of those long-held beliefs about healing to get a wider perspective, most are still responding with the intelligence of a political ad in an election year.

I've come to see the IDSA (Infectious Disease Society of America) as the big dogs protecting the gates of allopathic medicine with regard to lyme. Admitting the existence of chronic lyme and the need for treatment beyond short runs of antibiotics opens some very large doors that end up questioning the current state of profession they are all deeply invested in.

It's hugely threatening. And they are responding as if threatened. (Go figure.) If it wasn't the IDSA, it would be someone else. They are just playing a role.

As we push for the system to start embracing our illness as real, complex and increasingly common, keep in mind the level of change we are asking for. Paradigms don't shift easily, the releasing of indoctrination can be very painful for a lot of people, and this one could be huge.

"Lyme Literacy" is really just the tip of the iceberg, and if you get curious about where that tip leads, it is a whole different way of doing healing. We are not talking minor shifts here.

I have a lot of compassion and respect for those traditionally trained doctors who are making this shift. I have even more compassion for those who haven't yet figured out they are going to have to, and are going to get pushed into it. It's not going to be fun for them. And still, we need to keep pushing because our lives (and the lives of a lot of others) literally depend on the system changing.

And hey, where I see it landing us after that transition is over is a pretty great place: more choices, more respect for a wider range of trainings, medical practitioners who just understand more about health and healing, and less competition between healing philosophies. And that adds up to more healing and less stress for the patients.

That, to me, is the inevitable future of medicine. Listen to me: inevitable. I'm such an optimist. But that really is where I think things are headed.

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I've gotten out of this habit, but for this blog, it seems more important to give you my own answers. I started out in the natural healing camp and have ended up seeing integrative medicine (even *gasp* pharmaceuticals like pain killers) as being necessary for a large chunk of people to get well.

Wine to Water: Lyme Diet

We joke in our household about there being a time called "Beer:30" that is, half past good time for a beer. None of us are complete lushes, but we do like a good glass of wine or beer... or two. Alas, lyme has a way of disrupting many a happy family ritual, and this is one of them.

One of the best things you can do for your body when you have lyme is to start thinking of all time as "Water:30"-- that is, replace your alcohol and soda consumption with increased water intake. So sayeth the patients on today's focus question about dietary changes: what you eat is important, but what you drink actually tops the list of helpful changes.

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As much as any other blog I've written, this one made it painfully clear to me that I started this project leading a little too much with my own curiosity and impatience. I now look at the list of what I surveyed about and it seems woefully inadequate, and a little quirky.

I've learned a lot more in the past couple months about dietary changes people make, and feel like the list I surveyed on could have been at least twice the length it was. I can also see that my curiosity got the better of me: having tried mangosteen juice myself, for instance, I wanted to know if others liked it! Never mind that it hardly ever comes in in our dietary conversations. And my friend Halliday loves aloe juice, so it made the list.

But dairy is missing, as is soy (hmmm... two things I would personally struggle to let go of... interesting, eh? Sigh... humans are so predictable, aren't we?)

So lesson learned: craft the next survey more carefully and with more input from others... and take this one with another grain of salt. (Which fortunately, many of us think is a good idea, according to the second chart, below.)

So here's our charts! First the chart of surveyed items that we've tried eliminating, and then the chart of things we've added or increased our intake of.

So it seems like eliminating alcohol, fast foods and sugar are the core dietary changes to start with. (And while alcohol has occasionally been cited as medically helpful, surely fast foods and sugar are not good for anyone: see Supersize Me if in doubt about this.)

It is interesting to me that eliminating all grains comes out with a higher rating among those who have tried it than either of the subsets (gluten and wheat). This is a pretty radical dietary shift--more so than just eliminating wheat for sure, since it means no baked goods at all--and yet a lot of folks so it has been very helpful to them. Food for thought...

So this looks like: drink a lot of water, eat organic veggies and experiment with having them raw, fermented and juiced. Learn to really love vegetables. While even this advice is not winning universal approval, it seems like a fine place to start if you are new to figuring out what to eat on your diet. (Put more baldly and including advice from above: no Big Macs, yes carrot juice!)

I asked about both adding and removing two items that have fans in either direction: meat and fermented foods. Meat bottoms out both lists, though a few more people said it was helpful to eliminate it than to add it. 

One interesting new piece of research has found a new tick borne meat allergy. This be a symptom of a strain of lyme itself, or simply another tick borne condition ala our coinfections, or a symptom of one of our already known coinfections. I offer those possibilities, because it is clearly not universal to all of us with lyme. Folks who have this emerging condition are surely going to end up in the "eliminate meat" camp. 

It would be interesting to know if folks with lyme but not this allergy benefit more from meat being added (or increased) in their diets. I don't have a way of discerning that from the data collected here, though (in fact wasn't even aware of the meat allergy at the time I put this survey together a mere 2 1/2 months ago). So another question for later.

I'm one of the folks who believe that adding meat helped me a lot in my early days of healing, and we eat some a couple times a week now. Meat is an interesting one since some people start out their lyme journey as vegans and some as 2X/day meat consumers, and everything in between. 

I find myself curious if (again for non-allergic folks) a "meat in moderation" diet might be a good thing, and wish I'd framed these questions a bit differently. What we have here is probably confused data: a former vegetarian would have talked about adding meat and then offered their assessment of whether that helped or not, while someone else might have reduced their consumption and assessed that, but we are talking about a very similar actual consumption level of meat.

Fermented foods were interesting as well because they had an almost identical rating on the eliminate list and the add list. While this is true for everything here to some degree, it seems especially true with these numbers that you'll need to try it out for yourself and see what happens.

I'm imagining it would be important to have the fermented foods be "live" (as opposed to, say,  canned saurkraut, which will have had it's life snuffed in the canning process). Live fermented foods can provide a lot of happy probiotics and also act as a digestive aid for some folks; however, just like we don't let our probiotics sit in the sun and expect them to still work, canning our ferments is going to axe a lot of benefits.

So, obviously a lot more to ask about in the future... in the meantime, bon apetite!

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.

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?

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.

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.

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.