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