Not just anyone can cure their own illness. Understanding how to cure a rare disease is complex, as these illnesses often have unique and poorly understood characteristics. Treatment and diagnosis is difficult: doctors often lack the knowledge and particular expertise when compared to more commonly researched diseases. Doug Lindsay was one of these special people who saw that if he didn’t do anything, he would never be cured. So he took it all into his own hands. He went to the books, conferences, specialists, and eventually he became one of the experts who gave him his solution.
The Onset of Doug Lindsay’s Disease
As originally reported in The Guardian, Doug Lindsay was finishing up his studies at the University of Missouri when he was overcome by illness. He had spent the summer unwell; doctors told him perhaps it was glandular fever. As he returned to school, it further progressed, leaving him dizzy, disoriented, and weak. On the first day of his final year, he collapsed. He called his mother to say he was giving up on university. It was like de-ja-vu; he had watched his mother be crippled by a mysterious, undiagnosed illness throughout childhood. Doug felt he may be going down the same path. At 21, it was a shocking and scary prospect to see his life slip away because of this mystery illness. He realized if nobody could get him a diagnosis, he would need to solve this himself.
Doug Becomes His Own Expert
So he dove into the books. He developed a theory that perhaps it was a type of disorder to do with the nervous system known as dysautonomia. This involved critical functions like heartbeat, blood pressure, and metabolism. He visited relevant specialists and resources he thought could guide the diagnosis. Doug believed that his body was over-producing adrenaline after doctors told him the symptoms; the changes happened too quickly to be a thyroid condition.
In 2002, he had educated himself. The next step was to acquire the help of specialists. Doug wrote a paper that got accepted for presentation at the American Autonomic Society’s annual conference. He traveled to South Carolina in a wheelchair to present his medical situation and his proposed treatment. Here, he met Dr. Coghlan. The doctor was impressed by Doug’s theory and wanted to get involved. They kept in contact and began to come closer to his diagnosis. They called it “primary hyperepinephrinemia.”
They tried different treatments: first, a risky drip that utilized a pre-existing drug. This helped in short chunks but would keep him permanently bound to the IV, far from the most appealing option. They ran tests on the adrenal glands to try to spot tumors or peculiarities and Doug waited in an agony as tests came back negative time after time. Then two years later in 2006 he underwent a nuclear medicine scan which finally revealed something new: his adrenal glands glowed in the scan because they were, as they had suspected, producing a huge surplus of adrenaline.
Doug had his problem; now he had to devise his own solution. So he decided to design his own surgery. He went through research that was very dated, but the sparse info available made it the closest possible. He found a surgery that had been done on animal models that removed the portion of the glands that produce the adrenaline, the inner medullae. It had never been done on humans, but he figured he could adapt it.
In 2010, after searching for a surgeon who would agree to this groundbreaking operation, he finally had the medullectomy. His life began to turn around quickly. He recalls, “Within a few weeks I could sit upright for three hours without the drip. On Christmas Eve I walked the mile to church. I was amazed by the little things I could do. My mother was too ill to have the surgery, but with my drug treatment she lived her last eight years with less pain and in better health.”
While this was significant progress, the journey was not quite over. There were still complications and so he later got his right medulla removed as well. Doug had to mess around to find which concoction of medications would work for him, until finally, in 2013, they found the right balance. With his hormones in check, he stopped being so tired and vacationed for this first time in 14 years.
“I flew with friends to the Bahamas and saw the ocean for the first time. I let sand run through my fingers, and caught lizards as I had done as a boy.”
He describes that while his health is still fragile, it is stable now. Doug has changed his life. He is a medical consultant and speaker inspired by his own project. His personal journey created a surgery that has now been done on other patients, making it not only his own cure, but a cure for others too. He is a Christian and attributes his faith as an essential support through the process. However, Doug says he is still a scientist also.
“Science is the history of people solving mysteries: that sustained me when I was told I was attempting the impossible.”