Is There a Doctor in the House? Confined to his home for a decade, Doug Lindsay is certain he knows what ails him, and he thinks he knows the cure.

Doug Lindsay knows a thing or two about adrenal glands. A few years back the University City native bought a few batches of pig adrenal glands. He has successfully persuaded a veterinarian to dissect the adrenals of a freshly deceased cat and looked into enticing an adventuresome surgeon to have a go at a human cadaver's pair.

The adrenal glands Lindsay fixates upon most, though, are his own.

Perched one apiece atop the kidneys, human adrenal glands are generally no bigger than the tip of a pinky finger. But the hormones they produce play a vital role in regulating metabolism and in triggering the body's "fight or flight" response in states of distress.

Doug Lindsay never finished college but has presented his scientific findings at a medical conference.
Jennifer Silverberg
Doug Lindsay never finished college but has presented his scientific findings at a medical conference.
Lindsay’s mother in the early 1970s, about a decade before she got sick.
Courtesy Jeanne Carmack
Lindsay’s mother in the early 1970s, about a decade before she got sick.

Lindsay suspects his adrenals produce too much epinephrine (known more commonly as adrenaline), and that he's hypersensitive to the oversupply. He wants to correct the problem by doing away with the region at the center of each gland, the medulla.

The conventional wisdom in surgical circles is that excising a person's adrenal medullae is a dicey proposition at best. Lindsay is convinced it's doable.

He demonstrates on a shelled egg.

"Apparently the surgeon will be cutting into the gland like this, and opening it to the degree he can," the 32-year-old explains, slicing through the hard-boiled orb's white exterior with a paring knife. "From what I'm told, the medulla is frail and crumbles — kind of like this yolk — so they'll go in there with something flat, maybe a little hard, and start scooping it out."

Here Lindsay switches to a teaspoon.

"Their goal is to get it all, so I think they'll use an electrosurgical tool and burn what's left to make sure any of the yolk — the medulla — left in there is dead. Then they'll literally sew this back up" — he guides the white egg halves back together — "and then eventually they'll do the other gland."

With that Lindsay strides from kitchen to living room in the Ladue ranch home where his Aunt Jeanne and Uncle Terry Carmack live and where he occasionally receives visitors. He projects a clean-cut visage, having long ago traded shaggy, tawny locks for a neat crop. He completes the look with wire-rimmed glasses, creased khakis and button-downs. His gait is slow and deliberate. The compactness of the floor plan here makes it easier for him to move about, if only for minutes at a time. And it's here that he keeps his reclining wheelchair, an elaborate, six-foot-long contraption that allows him to converse nearly eye to eye.

Ensconced in the chair, the De Smet Jesuit High School graduate launches into a lecture on de-medullation in animals, illustrating his points via a 363-page computer file that contains his medical records along with numerous scientific texts, including a lone article that chronicles the long-ago de-medullations of two Danes.

The document essentially comprises the sales pitch to surgeons Lindsay hopes might treat him with this innovative surgery.

It has been ten years since Lindsay came down with a mysterious illness. Of its numerous symptoms, the most debilitating is known as orthostatic intolerance. Translated into plain English: When he's in an upright position, Lindsay's blood pressure drops and his heart rate soars. He sweats and becomes lightheaded. If he sits or stands for too long, he risks a heart attack or stroke.

Healthy, Lindsay was known as a hell of a dancer. He liked to write and play banjo. He was a storyteller. He liked the rush of a speeding car.

Sick, the guy who never had trouble finding an audience couldn't get doctors to listen to him.

While his friends went about their twenties marrying, completing the seminary, hanging a shingle as J.D. and Ph.D., Lindsay hit the books from bed. He became a self-taught student of medicine, trying to puzzle out what ailed him.

His symptoms were consistent with Chronic Fatigue Syndrome (CFS), a frustrating condition with no known cause or cure, shared by as many as 4 million Americans. But Lindsay ultimately confirmed he suffers from something rarer: a dysautonomia, or breakdown in the autonomic nervous system, which regulates bodily basics such as blood pressure and metabolism. The spectrum of dysautonomic diseases is broad, and the cause for Lindsay's particular dysfunction remains unknown. It could be CFS, or an autoimmune virus, or any number of things.

Such as a problem with his adrenal glands.

Doctors say the earlier a person is given an accurate label for a malady, the better the chances of adequate treatment and ultimate recovery. Tell that to the estimated 25 million Americans who are afflicted with what the medical community calls "orphan diseases." Medical science has identified more than 6,000 such conditions, each of which affects fewer than 200,000 people. Many more still await discovery and a full workup in the medical literature.

Because the mysteries can be so confounding, the specialists few and the resources limited, it can take years to pin down and treat an undiagnosed ailment. Patients are expected to be — well, patient, while science slogs through the riddles.

As Mary Dunkle, spokeswoman for the Connecticut-based National Organization for Rare Disorders, puts it: "Many people will never get a diagnosis."

Next Page »