Stress and Spirochytes

Let's talk stress. It will come as no shock to anyone who frequents this blog for me to say that having an illness like Chronic Lyme Disease is incredibly stressful. (Of course one could argue that there isn't another disease quite like chronic lyme, and we'll get to some of that in a minute).

There is, of course, more than one relationship between stress and illness. The American Psychological Association has made a recent study* of how stress contributes to chronic illnesses... and found that a lot of people are in a fair amount of denial about just how much stress is affecting their own health.

Here's a quote from that article:

While 9 in 10 adults believe that stress can contribute to the development of major illnesses, such as heart disease, depression and obesity, a sizeable minority still think that stress has only a slight or no impact on their own physical health (31 percent) and mental health (36 percent). When considered alongside the finding that only 29 percent of adults believe they are doing an excellent or very good job at managing or reducing stress, APA warns that this disconnect is cause for concern.

What this raises for me, when combined with today's numbers from our survey, is how much the stress of our illness might in fact be a factor in delaying our recoveries, and if we are really taking the psychological aspects of our illnesses seriously enough.

It's fine to blame it all on "bugs in our brain" (and believe me, I do this myself on a regular basis) but what if the stress of the social, political, spiritual and financial aspects of the illness are playing their own independent role in keeping those bugs happy? If it is a factor, the bugs are being well fed, because we are one stressed out bunch of monkeys.

Here's the avergae rating of ten different stress factors among chronic lyme patients:

Here's the actual phrasing of the question and answers on this one, and how they translate into the ratings system:

What factors cause you stress related to your illness? (Please indicate how stressful.)

0 = not stressful
1 = a little stress
2 = some stress
3 = significant stress
4 = extremely stressful

What is most notable to me is that none of these answers come out with particularly low ratings. The lowest one on average (family and friends disbelieving your diagnosis) is still well over a 2. What other disease can you think of where the average stress level from that is this high?

Can you imagine coming home from the doctor's office and saying to your family, "Well, I have high blood pressure (or cancer, of liver disease, or whatever)." And them saying, "I don't believe you"? Doesn't it just seem bizarre?

Certainly there are people that this hasn't happened to (in our case, 59 of the 333 people who made a response to that particular question say this hasn't been a source for stress for them at all, so we can infer that for at least some of them, that's because it hasn't happened) but....

Wait a minute! That means that at least 274 of 333 people have had this happen to them? What?!? That's 82.3% of respondents. And that, my friends, is insane.

OK, I know that Fibromyalgia and Myalgic Encephalomyelitis (aka chronic fatigue) patients deal with this, too, and we aren't the only ones. But the difference I see between these two things is that fibro and ME are both still in the "we don't know what causes this" category, where lyme isn't. (Please note: I'm not excusing the behavior of people who give fibro and ME patients a hard time, I'm just saying that it should be easier with lyme because the scientists have articulated a cause.)

Lyme is clearly caused by a pathogen: a cute spirally little thing that makes you horribly ill. It's not a mystery illness, and for some portion of us, we actually have positive test results confirming the presence of our little spiral friends. 

But in fact, in terms of stress, having positive bloodwork hardly helps at all for this one. The average stress rating among all respondents on this item was 2.26, which is just barely higher than the 2.22 among those who have positive bloodwork. Apparently people feel free to disbelieve you even with tangible, medically-based proof.

I keep coming back to: what exactly is there to not believe in? What does it mean to "not believe in" an illness? As if this is a matter of faith and not science, or that one has a life philosophy that can't admit the truth of some very basic biology. Really? (And even with fibro and ME, I find myself wondering why it is so hard to believe in an illness that science simply hasn't caught up with yet. Just because your dogma doesn't get it yet doesn't mean it isn't real.)

OK, so I'm getting stressed just writing about it. Sheesh. Time to move on.



Not Being Able to Contribute

OK, so here's one of the things I love about this community. Our #1 stress factor (with a 3.32 rating) is that we can't work and otherwise contribute like we used to be able to. We were active, engaged people for the most part before we got this illness, and the loss of our active selves is the worst thing for us.

We might hate the politics (which earned a 2.82 stress rating) and have deep frustrations with the medical community and the lack of good care (2.75) and be up to our necks in bureaucratic hassles (2.52) but the thing that bums us out the most--even above the symptoms themselves--is our own lack of being able to contribute and be active.

OK, maybe my protestant work ethic roots are showing here, but I find this impressive.



The Fatigue of Fatigue (and other symptoms)

Another interesting piece is around treatment fatigue. I know people who have literally been whacking at this beast for decades (though the more common story is measured in years). With a stress rating of 2.90, this one is close to the top of the list.

Among respondents who have been treating for 1-2 years, treatment fatigue rates a 3.03, for those treating 2-5 years, it is 3.00, and for those treating 5-10 years, it is 3.09. In other words, this gets old fast (even folks in treatment for less than a year rated this one at 2.47) and it doesn't seem to get much better over time.

I do, however, find it curious that it doesn't get significantly worse. You'd think 5 years would be notably different than 1-2 years, and even more so after a decade.

Perhaps all this means is that if you are wired to feel impatient with something like this (and most of us are, even if we are generally patient people) one year is probably long enough to dump you into that state, even if some folks do manage to significantly dodge this bullet. Of course, it also might look different if I had surveyed the same group of people multiple times over a long period of time... which I hope to do at some point.

Here's how this question breaks down:

Even though the average totals are very similar in the 1-2 year, 2-5 year and 5-10 year subgroups, you can see the trend for increasing levels of stress over time... if you just look at the "some stress" plus "significant stress" plus "extremely stressful" categories.

I find it interesting, though, that at least 5.9% of people in each category report little to no stress about treatment fatigue. There is a resilience imbedded in this answer that I find myself very curious about... how does one NOT have major stress about this over time?

So I went poking around. How about meditators? Nope, they have an identical rating of 2.90 to the general survey population on this one. Yoga practitioners? Nope, they come in at 2.84. People who report that having a spiritual practice or belief is helpful? 2.91. Good family support? 2.91. Good social support? 2.92. Competent medical care? 2.91. (It's actually a little weird how consistent this is.)

OK, how about people optimistic about their recovery? Here's the only real difference I found, and even this may not be significant. They come in at 2.71.

Now, obviously, I've only honed in on one of the ten stress factors I surveyed about. I could run through a similar process with any of them and might find some other interesting patterns, and might find other things to comment on.

But the fact that optimism (which is an internally generated, state of mind kind of thing) seems to be a bigger factor than what someone does (like meditation yoga) or has (good family or social support) leads me to think it may simply be a matter of who someone is at a personality or basic programming level. I look forward to leaning into that question more in later studies.

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*As an interesting side note, that APA article contains a few paragraphs about caregivers of ill people and the incredible stress they are under. Might be a good thing for us all to be aware of, as our close companions also suffer, albeit indirectly from lyme.

Lyme: a Hidden Epidemic?

 Epidemic definition: affecting or tending to affect an atypically large number of individuals within a population, community, or region at the same time.

In today's blog, we'll circle back around to the first two questions on our survey for one more quick pass, talking more about the misdiagnoses that plague us... and how "plague" might indeed be an appropriate word for the situation.
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Of the people responding to the survey 87% have a chronic lyme or Multiple Chronic Infectious Disease Syndrome* (MCIDS) diagnosis. The other 13% say that they don't have this formal diagnosis, but strongly suspect they have it.

One of the strange and mortifying things about this disease is how many people are essentially forced into self-diagnosing. Many medical practitioners are still holding the perspective that lyme can't become chronic (that it either is handled easily by a single run with a single antibiotic, or-- worse in the myth department-- it simply goes away on its own). In this environment, people who have little tolerance for being told that it is all in their heads frequently go looking for a more satisfying answer.

I'm all in favor of folks being independent in their thinking about health and healing (and in fact, once penned a pieced called, "I am my own primary health care provider" which will be a blog here are some point) but these numbers point to something much more ominous: many people are being abandoned by the medical system we all rely on, and left to their own devices in an area where we could really use some help. This isn't the common cold: this is an illness frequently cited to be the most complicated one currently known, and it can kill us, slowly and painfully.

The people represented in the "strongly suspect" category can be seen as place holders for all those among us who can't get to a knowledgeable doctor, don't have the money or insurance coverage to see a specialist, or have an already high mistrust level of the medical establishment and are essentially on their own or operating with peer support.

Unfortunately, finding a doctor may not be much of an improvement, as we saw in the blog from July 5th.

The danger of misdiagnosis is that lyme gets harder to treat the longer we have it. Years can go by whacking at the beast with the wrong diagnosis while the bugs in our blood just get more and more established. And the longer they hang out in your system, the more chances they have to settle in to tissues--they literally become entrenched, burrowing their little spiral bodies into just about any organ. (According to Stephen Buhner in his book Healing Lyme, they favor collagenous tissues, which include joints, the brain and heart, and skin, and--just to add to the creep out factor-- they actually have an easier time moving through these tissues than blood. Don't think about that too much.)

And if it is true that many of these other illnesses are actually undiagnosed lyme, the growing concerns about a lyme epidemic may be spot on. Just for giggles, here's the stats on the numbers of just five illnesses named in the misdiagnosis question on our survey, and just within the US:

Fibromyalgia: an estimated 3-8 million cases
Chronic Fatigue Syndrome: 800,000 cases**
Multiple Sclerosis: 400,000 cases
ALS: 30,000 at a time (most ALS patients die within 2 years of diagnosis, so this one is more of a rolling statistic)
Alzheimer's: up to 5 million

That's a heck of a lot of people who could probably use a really good lyme disease test. (Oh, wait... we don't have one of those, do we? But that's a topic for another blog.) In fact, even taking the low end of the fibro numbers, that is 9,230,000 people, or nearly 3% of the US population. (Can you imagine the kind of havoc it would create to have 1 in 33 people walking around with lyme rage? Or worse, not being able to walk around with it?) Would those numbers qualify as an epidemic?

This level of misdiagnosis of lyme cases goes a long way to explaining the discrepancy between the CDC's official diagnosis number (22,500 new cases in 2010, and another 7,500 they are willing to call "probable")* and the estimates that the real number is probably much higher than that: in the ballpark of 250,000-300,000 cases per year.

It is absolutely essential that we figure out how many of these other diseases might be manifestations of lyme. 

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I want to close with a personal anecdote. There have been any number of painful things for me personally as I've learned more about lyme, but none harder than my changing perspective on the death of Fred Lanphear. Fred was one of my favorite elders in the world. About the same time my own health was doing the slow slide downward, Fred was dying of ALS. And right around the time I was diagnosed and started my own steep learning curve abut lyme, he died.

I'm not someone who does regret much, but part of me aches every time I think that it is possible, if we'd known more and the politics of this disease weren't so ugly, that Fred might have gotten a different diagnosis and still be with us. And maybe, if I'd learned more sooner, I could have played a role in that.

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Transparency: my own answers to these questions are that I do have an MCIDS diagnosis. Prior to this diagnosis, I was also tossed into the fibromyalgia bin.


*This is also being called MSIDS, Multi-Systemic Infective Disease Syndrome. Fortunately for those who are aurally oriented, they are pronounced the same way. Unfortunately for us readers, we now have 2 acronyms floating around for the same thing. Bleck.
** As an interesting side note, check out the two "myths" about CFS at the bottom of the page. Sound familiar?
 *** It is also partly explained by a disjunct between the CDC's purpose and what our doctors need to be paying attention to: "The CDCP criteria was developed only for surveillance; it was never meant for diagnosis," according to Dr. Ray Jones. "Lyme is a clinical diagnosis.The test evidence may be used to support a clinical diagnosis, but it doesn't prove one has Lyme. About 50 percent of patients I've seen have been seronegative for Lyme but meet all the clinical criteria." Quoted from: Goldberg, B. & Trivieri, Jr., L. Chronic Fatigue, Fibromyalgia & LymeDisease, 2^nd Edition. (Berkeley, California: Celestial Arts, 2004), P. 389