Homehttps://server7.kproxy.com/servlet/redirect.srv/sruj/smyrwpoii/p2/Healthhttps://server7.kproxy.com/servlet/redirect.srv/sruj/smyrwpoii/p2/This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself
This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself
After his first day of classes, the biology major collapsed at home on the dining room table, the room spinning around him
It was 1999. The symptoms soon became intense and untreatable. His heart would race, he felt weak and he often got dizzy. Lindsay could walk about 50 feet at a time and could not stand for more than a few minutes.
"Even lying on the floor did not feel like it was low enough," he said.
The former high school track athlete dreamed of becoming a biochemistry professor or maybe a writer for "The Simpsons . "
Instead, he would spend the next 11 years mostly confined to a hospital bed in his living room in St. Louis. Louis, hamstrung by a mysterious ailment.
Doctors were baffled. Treatments did not help. And Lindsay eventually realized that if he wanted his life back, he would have to do it himself
"He did something extraordinary," said John Novack, spokesman for Inspire, a healthcare social network for rare and chronic-disease patients. When people listen to Lindsay's story, Novack said, they often say, "I can do something similar for my kid."
His mother was a living prophecy
By the time Lindsay was 18 months old, his mother was so weak she could no longer pick him up. She managed to pick him up one more time that year, when he was choking on a jawbreaker. She saved his life
In other words, she was too frail. She lived for decades, mostly bedridden with the same condition that stole her son's twenties. After years of tests, she decided her condition was related to her thyroid, but she was too sick to travel to the Mayo Clinic to get more specialized care, Lindsay said.
Lindsay's aunt also developed the same ailment, growing so weak she could not tie her own shoes
As a teenager watching his family members sidelined from life, Lindsay wondered whether his body was a ticking time bomb ,
Finally, that day in 1999, the alarm went off
"When I called my mom that night to tell her I needed to drop out of college, we both knew, he said.
"If I Was Up, it was because I was eating or going to the bathroom, "he said.
Lindsay was immersed in medical research, determined to find a way out. He saw specialists from endocrinology, neurology, internal medicine and other specialties. When one doctor was out of ideas, Lindsay referred to a psychiatrist.
That's when Lindsay realized he would have figured his trouble out on his own.
While in college he had picked up a 2,200-page endocrinology textbook near a garbage can, hoping to use it to figure out what condition his mom had. In it, he found an important passage discussing how adrenal disorders could mirror thyroid disorders. ” data-src-mini=”//cdn.cnn.com/cnnnext/dam/assets/190430194456-04-doug-lindsay-4-small-169.jpg” data-src-xsmall=”//cdn.cnn.com/cnnnext/dam/assets/190430194456-04-doug-lindsay-4-medium-plus-169.jpg” data-src-small=”http://cdn.cnn.com/cnnnext/dam/assets/190430194456-04-doug-lindsay-4-large-169.jpg” data-src-medium=”//cdn.cnn.com/cnnnext/dam/assets/190430194456-04-doug-lindsay-4-exlarge-169.jpg” data-src-large=”//cdn.cnn.com/cnnnext/dam/assets/190430194456-04-doug-lindsay-4-super-169.jpg” data-src-full16x9=”//cdn.cnn.com/cnnnext/dam/assets/190430194456-04-doug-lindsay-4-full-169.jpg” data-src-mini1x1=”//cdn.cnn.com/cnnnext/dam/assets/190430194456-04-doug-lindsay-4-small-11.jpg” data-demand-load=”not-loaded” data-eq-pts=”mini: 0, xsmall: 221, small: 308, medium: 461, large: 781″ src=”data:image/gif;base64,R0lGODlhEAAJAJEAAAAAAP///////wAAACH5BAEAAAIALAAAAAAQAAkAAAIKlI+py+0Po5yUFQA7″/>
He lived in his adrenal glands, sitting atop the kidneys on either
Using a stash of aging medical textbooks, Lindsay hypothesized that a whole class of autonomic nervous system disorders could exist beyond established categories of what most endocrinologists or neurologists knew about.
He cobbled together for a computer, had an old college roommate bring it over, and got to work.
Lindsay soon stumbled on the website for the National Dysautonomic Research Foundation, delighted that an entire organization was dedicated to investigating the type of disorder plaguing him and his family.
Lindsay's pattern of symptoms has not been studied. But he was getting closer
He convinced a researcher who believed in him
Lindsay soon decided he needed a partner – not just a physician but a scientist curious enough to take on a rare case
The best place to find that person, he reasoned, was at the American Autonomic Society's annual conference attended by scientists from around the world who focused on nervous system disorders
In 2002, he gave a presentation about his illness at the group's meeting in Hilton Head, South Carolina. Lindsay had a lot of trouble with her, and he was able to put her on a number of seats during the flight
] Lindsay arrived at the conference in a wheelchair, wearing a suit and tie, and presented himself as a Jesuit-trained scientist.
He was just a scientist living an experiment in his own body. During his talk, Lindsay argued that a certain drug might help him.
Several of the scientists disagreed with Lindsay's hypotheses about his ailment. But that was not unexpected. He did not even have a bachelor's degree and he was telling doctors from Harvard University, the National Institutes of Health and the Cleveland Clinic, their medical training told them was impossible
"They did not patronize me. like a scientist, "Lindsay said. "I was entering a world of science and I could not have been a student because I was at home."
Dr. Cecil Coghlan, a medical professor at the University of Alabama-Birmingham, approached Lindsay after his presentation. Lindsay had a medical ally
His first innovation was repurposing a drug
In early 2004, one of Lindsay's friends rented an SUV, loaded and mattress in the back and drove him, lying flat, 500 miles to Birmingham
Lindsay suspected his body was producing too much adrenaline. He knew about a drug called Levophed, which is approved by the US Food and Drug Administration to raise blood pressure in some critically ill patients. Levophed is basically an injection of noradrenaline, which counteracts the symptoms caused by excess adrenaline.
It was not done before, but Lindsay convinced Coghlan to repurpose the drug so he could live on a 24/7 noradrenaline drip for the next six years.
Lindsay spent "every second of every day" hooked up to an IV. It stabilized his condition and allowed him to be active for short periods of time around the house.
"I was no longer at risk of losing everything," Lindsay said.
Lindsay's autonomic dysfunction kept him mostly confined to the house he grew up well beyond his twenties.
Why was he so sick, he wondered? Something was dumping too much adrenaline into his blood.
Coghlan told him he might have an adrenal tumor.
Discouraged but not deterred, Lindsay did the only thing he could do: He dove back into the medical literature.
And he came up with a treasure
Later he diagnosed a disorder doctors did not believe could exist
Lindsay suspected there might be something in his adrenal gland that acted like a tumor , but was not one
A fourth scan in 2006 showed his adrenals "glowing brightly," said Lindsay, an abnormality consistent with his new theory.
Coghlan called Lindsay and said, "We found it!" The diagnosis: bilateral adrenal medullary hyperplasia
In layman's terms, it means the medullas, or the inner regions of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing too much adrenaline
Experts in the field questioned the diagnosis.
As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia
And he fixed on what looked like a simple solution: If he could cut out the medullas of his adrenal glands – sort of like slicing into a hard-boiled egg and removing the yolk – his health would improve
Dr. Chris Bauer, Lindsay's personal physician, calls his ailment and "atypical presentation of a rare disease."
"They do not really write textbooks based on that," Bauer said. "We were all learning with Doug as we went along."
Then he pioneered a new surgery
Lindsay finally came to a bold conclusion. "
His first big lead came in 2008. He found a 1980 study from a scientist at Georgia State University, which he summed up as: "You slice the rat's adrenal gland with a razor blade and squeeze it out so the medulla pops out like a pimple."
Then he found that another version of adrenal medulla extraction had been done at Harvard. Renowned Professor Walter Bradford Cannon had performed the surgery on cats in 1926. Lindsay found records of the surgery being done on dogs as well
He built a 363-page PDF which proposed a first-ever human adrenal medullectomy
Then he spent the next 18 months working to find a surgeon who would oversee the unorthodox procedure.
Pioneering a new surgery is a high-wire act for ethical and financial reasons as well. Surgeons could risk losing their license by performing a unproven operation, especially if complications arose.
As many of the doctors in that special field knew each other, Lindsay was careful where he pitched the idea that might save his life.
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 after the procedure, Lindsay could sit upright for three hours. By Christmas Eve, he had the strength to walk a mile to the church.
But progress was slow. In 2012, he underwent a second surgery at Washington University in St. Petersburg. Louis to remove the medulla from his remaining adrenal gland.
A year later, he was well enough to fly with friends to the Bahamas. It was the first time in his life that the Midwesterner had seen the ocean.
Coghlan, his champion, lived just long enough to see Lindsay's remarkable recovery. He died in 2015.
Now he's helping other rare-disease patients
Against the odds, Lindsay had found a way to save himself.
But his mother was too delicate to be moved to another facility, let alone endure the surgery her son pioneered. She died in 2016.
Lindsay is a bachelor's degree in biology, 196 years old
Lindsay is now 41 years old.
"You can not recapture the past," Lindsay said.
Today he still lives in his childhood home in St. Louis. He needs to take nine medications per day, and his health is far from perfect, but he has his life back.
He's not exactly the biology professor he dreamed of being at 21, but he's not far off the mark. He is leveraging his experience into a new career as a medical consultant.
"I could not be an assistant manager at Trader Joe's." I do not have the physical ability for that, "Lindsay said. "
Lindsay now regularly speaks
Lindsay now regularly speaks
Lindsay now regularly speaks at healthcare conferences. " I have got help from people, " he says, " and now I have to help people "” data-src-mini=”//cdn.cnn.com/cnnnext/dam/assets/190718122319-08-doug-lindsay-small-169.jpg” data-src-xsmall=”//cdn.cnn.com/cnnnext/dam/assets/190718122319-08-doug-lindsay-medium-plus-169.jpg” data-src-small=”http://cdn.cnn.com/cnnnext/dam/assets/190718122319-08-doug-lindsay-large-169.jpg” data-src-medium=”//cdn.cnn.com/cnnnext/dam/assets/190718122319-08-doug-lindsay-exlarge-169.jpg” data-src-large=”//cdn.cnn.com/cnnnext/dam/assets/190718122319-08-doug-lindsay-super-169.jpg” data-src-full16x9=”//cdn.cnn.com/cnnnext/dam/assets/190718122319-08-doug-lindsay-full-169.jpg” data-src-mini1x1=”//cdn.cnn.com/cnnnext/dam/assets/190718122319-08-doug-lindsay-small-11.jpg” data-demand-load=”not-loaded” data-eq-pts=”mini: 0, xsmall: 221, small: 308, medium: 461, large: 781″ src=”data:image/gif;base64,R0lGODlhEAAJAJEAAAAAAP///////wAAACH5BAEAAAIALAAAAAAQAAkAAAIKlI+py+0Po5yUFQA7″/>
"I'm a full professor at Stanford, and I do not know these answers, "said Dr. Lawrence Chu, who found himself leaning on Lindsay when a rare disease patient came to him. "
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
With his gift for solving intractable problems, he hopes to help guide other patients with hard-to-treat illnesses
"I got help from people," he said, "and now I have to help people."