Orcinus, March 14, 2009
Last summer’s church shooting in Knoxville, TN hit close to home for me. As a Unitarian Universalist — and a liberal — the idea that the right wing’s eliminationist rage toward the left would end up in the death of two members of my own tribe wasn’t unexpected; but it was a gutpunch, and a moment of awakening.
The shooter, Terry Sedlacek, had struggled for years with long-term, chronic Lyme disease, contracted after being bitten by a tick some years ago. Though this description of his symptoms seems extreme even among Lyme patients, his struggle to get treatment is an infuriatingly common one. The media debate over the role this disease may have played in the shooting has tapped into one of the most furious and tragic medical debates in modern medicine. On one hand: there are doctors on TV claiming that it’s entirely possible that Lyme can create the kind of psychiatric problems that would lead to this kind of catastrophe. On the other are doctors saying that it’s impossible — Lyme is a relatively benign bacterial infection that’s easily treated with a few weeks of antibiotics.
What you’re seeing here is the public version of a medical furor that’s been raging more privately for over 20 years, with a million or two patients caught in between. The stakes are incredibly high. Doctors caught on the wrong side commonly lose their licenses. Patients caught in the crossfire commonly lose their lives.
Lyme and Me
I came by my own ringside seat at these festivities courtesy of a tick bite incurred, probably on a hiking trail somewhere in the Sierra, in the late summer of 1984. I don’t remember the bite. I never saw the tell-tale bulls-eye rash (I’m a country kid — I got bit all the time by one noxious thing or another) that one of the warring camps insists must be present for a Lyme diagnosis to be accurate. But I do know that I went to bed one day in October of that year, and was never the same afterward — and that I’ve been struggling with devastating bouts of exhaustion, body pain, and brain fog ever since.
Over the years, various doctors pinned assorted diagnoses on these symptoms, all of which promised exactly zero hope for a cure. Occasionally, one would recommend a symptomatic treatment that would alleviate some of the pain, or forestall at least some of the damage; and through the years, these little wins added up to a decade of gradual recovery that allowed me to reclaim at least some of my life. It wasn’t enough to keep me from having to abandon my career; but at least the pain wasn’t constant, and the neuropathies weren’t crippling — which is more than many Lymies can say. Eventually, in 2005, I lucked into an experimental pilot study for a treatment that alleviated the neurological and cognitive issues to the point where I could actually go to grad school. And blog. And, at least virtually, begin to rejoin the human race. It wasn’t a cure; but it was something much more like a life, and I took it for all it was worth.
But it wasn’t until a year ago this past week — nearly 24 years and a dozen or so doctors after my first collapse — that I finally got a firm diagnosis of Lyme disease. Last August, after returning home from the convention in Denver, I started the difficult and demanding high-dose multi-layered antibiotic treatment. The average case of chronic Lyme takes two to five years of treatment to cure. At this late date, though, the odds are only about 70% that I’ll ever be able to shake it. Still, six months in, my joints work again. I can exercise and travel without having to pay it back with weeks in bed. And my mind grows sharper by the day. The drugs are working — and every day I’m better is a day of grace I never thought I’d see.
Two Definitions of Lyme
The treatment takes so long because Lyme is the most cunningly persistent bacterium known to science. In its native state, it’s a spirochete — a cousin to syphilis. But if you hit it with penicillin, it will convert in a matter of minutes into an intracellular form that’s more like a mycoplasma, which will only respond to a macrolide antibiotic like azithromiycin or Biaxin. Or, just for fun, it will roll up into a hard cyst form that can hide, dormant, in the macrophages of cells, and then emerge to re-infect the host years on down the road. This well-armored third form responds — only very reluctantly — to Flagyl and a couple of the TB drugs. Curing the disease means taking large doses of several classes of antibiotics together for months at a time — either orally, or through an IV — so the germ will have nowhere to hide. And all the while, we also need to be carefully watching for and mitigating the drugs’ own very real consequences to the body.
To complicate matters further, the ticks that deliver Lyme usually deliver other diseases, too: babesiosis (a form of malaria), ehrlichiosis, mycoplasma, and others that also must be found and treated for a full cure to happen. Though these are nominally “deer ticks,” entomologists have found Lyme-bearing ticks on birds, dogs, rodents, horses, and many other animals. Last week’s chimp attack is also being blamed on a form of Lyme psychosis. It’s probably true that veterinarians have a better handle on this disease than the doctors who treat humans do.
And here’s where the medical battle rages. Infectious disease specialists– represented by the Infectious Disease Society of American (ISDA) — have for decades held to the firm position that Lyme is a spirochete that can be killed with a 28-day course of doxycycline. If you’re still sick when the month is over, whatever you have isn’t Lyme (and, in practice, is generally assumed to be psychosomatic). And this is true, as far as it goes: if you’re lucky enough to catch the disease in the first few months after you’re bit — or you’ve got one of the many strains that’s amenable to this treatment — a short course of doxy usually does do the trick.
However, once some strains of Lyme get dispersed and embedded in the body’s tissues, the standard treatment won’t touch them. Worse: the standard Lyme tests won’t, either, so the results will likely come back negative. The shady politics of how the approved Lyme tests were developed would take a whole separate post to explain; but suffice to say that they’re only 70% accurate on their best day, which would make them patently unacceptable as a diagnostic tool were it any other disease. Far more accurate and sensitive tests are available, but insurance companies won’t cover the $400 fee.
That’s because the IDSA panel doesn’t approve of these tests (even though the “controversial” proteins it tests for — the only ones common to all Lyme strains — are the same proteins some of these same doctors once tried to build a Lyme vaccine on). It also doesn’t accept Lyme’s shapeshifting nature; the existence of a chronic form of resistant Lyme that requires long-term treatment; the importance of seeking out and treating co-infections; or the neurological and cognitive issues it can cause. All of these facts are well-documented by the peer-reviewed science; but IDSA’s Lyme panel has actually purged new members who brought these studies up for consideration.
All this is part of the background for the dueling doctor interviews we’re seeing on TV this week.
The Great Divide
Why would ostensibly caring doctors be so resistant to accepting new and better data? As always, follow the money. The IDSA’s minimalist view of Lyme is greatly favored by insurance companies, who really don’t want to be on the hook for expensive testing or more than a month of treatment. On a broader note: they’re absolutely terrified (with good reason) that Lyme could turn out to be another huge budget-busting epidemic like AIDS, and want to do everything they can to make sure they’re not stuck with the bills for it. To that end, they’ve made sure that the ISDA’s Lyme experts have been richly rewarded with grants, consulting fees, and so on for aggressively defending the narrowest possible case definition and the most limited treatment standards. For their part, IDSA’s Lyme group has held up their end of the deal so reliably that last May, they became the first medical standards board in the history of American medicine to be successfully sued (by the attorney general of Connecticut, no less) for corruption.
On the other side of this preposterous debate are the Lyme patients and the clinicians who are successfully treating them — and that large and growing body of peer-reviewed research (much of it published in major journals) that the IDSA stubbornly refuses to even consider. This side is also being joined by psychiatrists, rheumatologists, and neurologists who have tended to patients ravaged by Lyme; a new generation of genetics researchers who are getting a handle how Lyme does those Houdini-like invisibility and shapeshifting tricks; and the aforementioned veterinarians, whose experience with Lyme doesn’t correlate at all with the ISDA’s picture of the disease. Doctors in this camp are gathered under the banner of the Infectious Lyme and Associated Diseases Society (ILADS).
The doctors who join this side of the battle do so knowing their licenses are on the line. Testing for and treating long-term Lyme is a risky business: scores of them have been put out of business by either IDSA or the insurance companies, and the rate of attack is accelerating. As a result, people with chronic Lyme are losing what few options they do have, and end up traveling hundreds or even thousands of miles for treatment. (I was diagnosed by Canada’s leading Lyme expert — who gave me the news on a Tuesday, and retired that same Friday because the provincial medical board was coming after him. My successful treatment is being managed by a doctor in Seattle who protects himself in part by refusing to take insurance.) While the doctors, researchers, and insurers rage, upwards of two million Americans with Lyme are going largely undiagnosed and untreated — unless they can pony up the six-figure sums needed to find a doctor willing to treat them, and then finance their own cures.
In the meantime, there are gathering bits of early research to suggest that Lyme may also play a role in triggering other illnesses as diverse as autism, Alzheimer’s, Parkinson’s, and ALS. If any of this proves true, the results of our crippled management of Lyme may ultimately touch many, many more of us.
Blame it on The Gipper
As you can tell by now, this issue is a political and medical snake pit. But the thing that I’ve found most striking about it is that Lyme patients aren’t the only ones caught in it. You can find almost identical battles raging — with insurers and “official” medical groups lined up on one side, and persecuted heretic doctors and their grateful patients lined up on the other — among the MS, autism, chronic fatigue syndrome, and Gulf War syndrome communities. In fact, almost every chronic disease that’s emerged or spread since the early 80s has ended up re-creating this exact split. You have to wonder: Why? What’s going on here?
A few perspicacious science journalists think they’ve got an answer. The problem, they say, started back in 1980, when Ronald Reagan changed the rules governing how scientists (and the entities they work for) profit from their work. Where scientists used to gain fame and fortune by publishing and sharing their work in conferences and journals — and were thus rewarded for furthering general knowledge — the new rules encouraged them to hoard their discoveries as trade secrets; and then leverage their patents and their seats on medical boards to write the disease definitions, mandate approved treatments, and completely control the scientific discourse in order to maximize the profits they made.
The upshot — in all these cases — is that when a new disease is discovered, a small cadre of researchers rushes in to lock down the disease’s definition, patent its treatment, and control the flow of information around it as soon as they can manage it. From that point, any further discussion of the issue is off-limits; and any new discoveries or treatments not controlled by this cadre are discouraged by means both subtle and brutal. So instead of ongoing scientific give-and-take that leads to increasingly better information and treatment over time, the entire research conversation stalls at a very early stage — and can stay stalled for decades. In the meantime, patients and clinicians are shut out of the discussion and left to work out practical treatments and new theories on their own, often in defiance of well-funded opposition that’s staked its careers and fortunes on preventing any challenges to their established theory.
Horror and Hope
The Lyme community is watching this week’s events with an odd mixture of horror and hope. On one hand, the last thing we need is for America to think that the very real neurologicial problems that come with the Lyme package make us a danger to society. It’s important to understand that there are over 100 strains of Lyme in the US, only a few of which lead to chronic Lyme and even fewer of which create anything like the kind of psychosis that afflicted Terry Sedlacek. (One of the reasons diagnosis and treatment are so hard is that the various strains all manifest and respond to the drugs differently.) It’s even more important that people realize that Sedlacek might never have gotten to this place if the American medical system were structurally capable of integrating and deploying everything we know now about Lyme, instead of staying willfully stuck in the definitions first laid down in the late 1980s.
He deserved better diagnosis, better treatment, better doctors, better information. So do I. So does everyone infected with Lyme. The fact that we can’t get it is just one more national failure that can be laid directly at the feet of short-sighted conservative policies, and the belief that an unfettered market can never do harm.
On the other hand, we’re beyond grateful that public awareness of the Lyme debacle has been growing. Over the past year, we’ve seen the publication of noted science writer Pamela Weintraub’s excellent Cure Unknown, the definitive book to date on the Lyme epidemic and political travesty surrounding it; the release of Under Our Skin, an award-winning documentary on Lyme that’s being shown to full houses around the country (the film clips above are excerpts from this movie); and serious interest from Oprah’s Dr. Oz and other media celebrities in doing shows on Lyme.
Given all this, there’s hope we’re finally beginning the long-deferred conversation about how America deals with its gathering epidemic of emergent chronic illnesses, and give the victims of Lyme and other orphaned diseases the treatment and research attention they deserve. In the face of a precipitous environmental decline that seems likely to make emergent chronic illnesses one of the biggest dangers to American health and security in the coming century, our very survival may someday come down to how effectively we can fix what’s broken here.
It’s tragic — but, unfortunately, very typically American — that it took another church shooting to get us here. But now that we’re here, let’s not let the chance to have a serious discussion about our deranged medical research system — perverted, as everything else was, by the right wing’s euphoria for free-market fundamentalism — get away from us. There are tens of millions of chronically ill Americans who are counting on us to get it right this time — and it shouldn’t take the death of innocent people to make us aware of the shameful way they’re living, and dying, in our midst.
Update: Can Lyme really make someone homicidal? Pam Weintraub gives a great summary of Lyme’s potential psychiatric and neurological effects here.