not for web
Published 11:00 pm Sunday, December 31, 2000
- Stethoscope with red heart on brown wooden table
WASHINGTON — It is bad enough to be sick, but worse still to stay that way for months and years on end. And some of the worst agony is reserved for the people with mystery ailments — or those who believe themselves to be suffering from a disease such as chronic Lyme, which most doctors doubt exists.
This ought to make for awful reading, but somehow “The Deep Places,” a memoir of chronic Lyme from New York Times columnist Ross Douthat, manages to be both winning and haunting. Douthat is willing to show himself desperate as well as dauntless, and scrupulously covers the arguments for the nonexistence of chronic Lyme disease, at least as an active bacterial infection that can be treated with antibiotics. Though he also marshals compelling counterarguments to the doctors, many readers will no doubt conclude, along with reviewer Freddie deBoer, that while admiring Douthat’s prose, and courage, “I still don’t believe in chronic Lyme.”
I understand deBoer’s skepticism, and his fear that Douthat’s story will encourage others to pursue quack cures for an imaginary ailment. I cannot swear chronic Lyme is real. But my propensity to doubt is tempered by my journey into mysterious chronic illness.
When the attacks began, I was a basically healthy woman in her mid-30s — too sedentary, and taking drugs for congenital hypertension, yet nonetheless basically well. They came mildly at first, with a kind of choking sensation in my throat, followed by dizzy spells that I put down to low blood sugar. But the attacks gradually became more frequent, and much worse: waves of nausea, dimming vision, a roaring in my ears, followed by mild mental confusion and a tendency to keel over.
I told a lot of lies in that era, because I couldn’t bear to confess to a psychosomatic ailment. And medically speaking, there was apparently nothing wrong with me.
I mentioned my symptoms tentatively, to a few doctors, and was convinced that I just needed to exercise or possibly was having panic attacks.
I believed them because it seemed to fit: I was constitutionally anxious and unhealthily torpid. My symptoms did sound like another of those maddeningly subjective illnesses : chronic fatigue syndrome, fibromyalgia and, yes, chronic Lyme. I’d always been skeptical of those diagnoses, and even after I got sick, I frequently exhorted myself to stop malingering and be normal.
This didn’t work at all. The longer it went on, the more afraid to move I became, until by the end, I was reclusive and living in semi-recline.
And then a startling accident: About five years into this, I switched jobs, and insurance. I went to Kaiser Permanente for an intake checkup. As I recall, my blood pressure was a little high, so the nurse told me to rest a minute, then took it again. It was 80/40.
Suddenly there were a lot of people in the room. “Do you feel dizzy?” someone asked.
“Why, yes, I do,” I said, and realized I was in the early stages of an attack. They ordered a gurney to rush me downstairs where they could run an IV.
For the first time, I was less worried than the medical professionals; I knew eventually it would go away if I lay down. They didn’t relax until the IV pushed my blood pressure back to normal. Eventually, a doctor came in and together we traced my attacks back to around the time a second blood pressure medicine was added to my regimen. I stopped taking that medicine, and my mysterious ailment went away.
When an acquaintance recently mentioned their skepticism about chronic Lyme, I reminded them about my attacks. “But those were real,” they said. “You could see it on the machine.”
Which is true, and also my point: You could see it on the machine, but it was a blind stroke of luck that anyone ever did. If they hadn’t, wouldn’t I still be taking that medicine?
Nonetheless, I understand why doctors prefer hard, objective criteria to the subjective reports of patients. Psychosomatic diseases exist, and treating them as if they were physical does more harm than good. I sympathize with critics who worry that Douthat’s story, which ends with an almost-cure, might encourage others toward futile treatments. Douthat seems to share some of that fear.
Yet I, like Douthat, also know the peril of deferring to doctors who want to treat only what they can measure. The world contains many quite real ailments that are hard to objectively ascertain. Many diseases also mimic other conditions.
That does not, of course, prove that chronic Lyme is real. But neither does the absence of clear evidence provide evidence of absence. Given the uncertainties, it seems to me far better to risk false hope than to too meekly accept a counsel of despair.