After Doug Lindsay’s first day of senior year classes in 1999, the biology major collapsed at home. The symptoms were intense and untreatable. His heart would race, he felt weak and he frequently got dizzy. Lindsay could walk only about 50 feet and couldn’t stand for more than a few minutes.
The former high school track athlete wanted to become a biochemistry professor, instead, he spent the next 11 years confined to a hospital bed with a mysterious ailment. Doctors were baffled. Whatever was wrong with him ran in the family. By the time Lindsay was 18 months old, his mother was so weak she could no longer pick him up. By the time he was 4 she could no longer walk. Lindsay’s aunt also developed the same ailment.
Lindsay was bedridden 22 hours a day seeing specialists from endocrinology, neurology, internal medicine and other specialties. Then he realized he’d have to figure his predicament out on his own.
He read a 2,200-page endocrinology textbook. In it, he found a passage discussing how adrenal disorders could mirror thyroid disorders. He zeroed in on his adrenal glands. Lindsay hypothesized that a whole class of autonomic nervous-system disorders could exist beyond the knowledge of what most endocrinologists or neurologists knew. He cobbled together cash for a computer and got to work.
Lindsay found the National Dysautonomic Research Foundation but none of the diseases they were examining fit Lindsay’s symptoms. Lindsay decided he needed a physician/scientist partner curious enough to take on a rare case. In 2002, he gave a presentation about his disease at the American Autonomic Society’s global conference. To get there, Lindsay bought a row of airline tickets so, with the help of friends, he could lay across several seats during the flight.
Lindsay, in a wheelchair wearing a suit and tie, presented as a Jesuit-trained scientist. He was telling doctors from Harvard University, the National Institutes of Health and the Cleveland Clinic something their medical training told them was impossible. They didn’t patronize him. Dr. H. Cecil Coghlan, a medical professor at the University of Alabama-Birmingham, said he thought Lindsay was on to something.
In early 2004, one of Lindsay’s friends rented an SUV, loaded a mattress in the back and drove him, lying flat, 500 miles to Birmingham. Lindsay suspected his body was producing too much adrenaline. He knew of a drug called Levophed, which is basically an injection of noradrenaline, which counters the symptoms created by excess adrenaline. It had never been done before, but Lindsay convinced Coghlan to repurpose the drug and he lived on a 24/7 noradrenaline drip for the next six years.
Three scans of his adrenal glands all came back negative. A fourth scan in 2006 showed an abnormality consistent with his new theory. The inner regions of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing way too much adrenaline. They found only 32 recorded cases of bilateral adrenal medullary hyperplasia.
Lindsay determined “if there isn’t a surgery, “I’m going to make one.” He built a 363-page PDF which proposed a first-ever human adrenal medullectomy. He spent 18 months trying to find a surgeon who would oversee the unorthodox procedure. Surgeons could risk losing their license by performing an unproven operation, and insurance companies tend to not reimburse patients for non-standard procedures. Eventually he recruited a surgeon from the University of Alabama-Birmingham. In September 2010 Lindsay went to the university hospital, where the doctor successfully extracted one of his adrenal medullas.
Three weeks later Lindsay could sit upright for three hours. Three months later he had the strength to walk a mile. Progress was slow. Two years later he underwent a second surgery to remove the medulla from his remaining adrenal gland. By early 2014, he was coming off some of his meds. Against the odds, Lindsay had found a way to save himself.
He graduated in 2016 with a bachelor’s degree in biology. Lindsay is now 41 years old. Today he takes nine medications per day, and his health is far from perfect, but he has his life back. He travels, give speeches and goes for walks. Lindsay has spoken at medical schools, including Stanford and Harvard, and at a growing list of medical conferences. And he’s working on a case study to be published in the British Medical Journal.
I studied for a long time to be a doctor, then I discovered that I didn’t have any patience. So, I became a tree surgeon, but I faint at the sight of sap