Doug Lindsay was 21 years old and was starting her final year at Rockhurst University, a Jesuit University in Kansas City, Missouri, when her world imploded.
After his first day of classes, the biology major collapsed at home on the dining room table, the room revolving around him.
It was in 1999. The symptoms quickly became intense and incurable. His heart was pounding, he felt weak and he often felt dizzy. Lindsay could only walk about 50 feet at a time and could not stand more than a few minutes.
"Even lying on the floor, I did not think it was low enough," he said.
The former junior track athlete dreamed of becoming a biochemistry professor or maybe a writer for "The Simpsons".
Instead, he would spend the next eleven years mainly in a hospital bed in his salon in St. Louis, blocked by a mysterious illness.
The doctors were confused. The treatments did not help. Lindsay finally realized that if he wanted to regain his life, he should do it himself.
Her career since has amazed health professionals.
"He has done something extraordinary," said John Novack, spokesperson for Inspire, a social healthcare network aimed at patients with rare diseases and chronic diseases. When people hear Lindsay's story, says Novack, they often say, "I can do something similar for my child."
His mother was a living prophecy
All that did not go home ran in the family.
At the age of 18 months, Lindsay was so weak that her mother was unable to hug him.
At the age of 4, she could not walk anymore. She managed to pick him up again that year, while he was choking on a headache. She saved his life.
Otherwise, she was too fragile. She lived for decades, mostly bedridden, with the same illness that stole her son's twenty years. After years of testing, she determined that her condition was related to her thyroid, but she was too sick to go to the Mayo Clinic for more specialized care, Lindsay said.
Lindsay's aunt also developed the same discomfort, becoming so weak that she could no longer tie her own shoes.
As a teenager, Lindsay wondered if her body was also a time bomb.
That day in 1999, the alarm went off.
"When I called my mother that night to tell her that I had to quit my studies, we both knew that," he said. The family curse had struck.
He found answers in abandoned medical textbooks
As of the fall of 1999, Lindsay was bedridden about 22 hours a day.
"If I was standing up, it's because I was eating or going to the bathroom," he said.
Lindsay plunges into medical research, determined to find a way out. He has met specialists in endocrinology, neurology, internal medicine and other specialties. When a doctor was running out of ideas, he sent Lindsay to a psychiatrist.
That's when Lindsay realized that he should find his own solution.
In college, he found near the bin a 2-page endocrinology textbook, hoping to use it to determine his mother's health. There he finds an important passage explaining how adrenal disorders might reflect thyroid disorders.
He focused on his adrenal glands, which rest on the kidneys on either side of the lower abdomen.
Using a pool of aging medical textbooks, Lindsay hypothesized that a whole class of autonomic nervous system disorders could exist beyond the established categories of what most endocrinologists or neurologists knew.
He concocted money for a computer, he was brought in by an old college mate and went to work.
Lindsay quickly came across the website of the National Dysautonomic Research Foundation, delighted that an entire organization is dedicated to researching the type of disorder that rages between him and his family. He asked the foundation to send him documentation on emerging research in the field.
None of the diseases examined by the foundation matched Lindsay's symptom structure. But he was getting closer.
He convinced a researcher who believed in him
Lindsay quickly decided that she needed a partner – not just a doctor, but a scientist curious enough to tackle a rare case and spend long hours with him analyzing it.
The best place to find this person, he explained, was at the annual conference of the American Autonomic Society, which was attended by scientists from around the world who focused on nervous system disorders.
In 2002, he gives a presentation his illness at the group meeting in Hilton Head, South Carolina. To make it happen, Lindsay bought a row of airline tickets so that she could have several seats with the help of friends during the flight.
Lindsay arrived at the wheelchair conference, dressed in a suit and a tie, and introduced herself as a scientist trained by Jesuits. He has tried to behave like a graduate student or junior colleague among public scholars, not as a patient.
He was just a scientist living an experience in his own body. During her interview, Lindsay explained that a drug could help her.
Several scientists disagreed with Lindsay's assumptions about her illness. But it was not unexpected. He did not even have a license and told doctors at Harvard University, the National Institutes of Health and the Cleveland Clinic that their medical training was telling them they were impossible.
"They did not sponsor me. They treated me like a scientist, "Lindsay said. "I was entering a scientific world that I could not attend because I was at home and I could not be a graduate student."
Dr. H. Cecil Coghlan, Professor of Medicine at the University of Alabama in Birmingham, spoke to Lindsay after his presentation. Coghlan said that he thought Lindsay was on something.
Lindsay finally had a medical ally.
His first innovation was the reuse of a drug
In early 2004, one of Lindsay's friends rented a sport utility vehicle, loaded a mattress at the back and drove it flat, 500 miles from Birmingham.
Lindsay suspected that her body was producing too much adrenaline. He knew of a drug called Levophed, approved by the US Food and Drug Administration to raise blood pressure in some critically ill patients. Levophed is essentially a norepinephrine injection, which neutralizes the symptoms created by an excess of adrenaline.
This had not been done before, but Lindsay convinced Coghlan to reuse the drug so that he could live with a norepinephrine infusion 24 hours a day, seven days a week, for the next six years.
Lindsay spent "every second of every day" in IV mode. This stabilized him and allowed him to be active for short periods around the house.
"I could not lose everything," said Lindsay.
Nevertheless, aside from the doctor's visits, a high school reunion, and a few weddings, Lindsay's self-dysfunction had confined him to the home in which he had grown well beyond his twenties.
Why was he so sick, he wondered? Something spilled too much adrenaline into his blood.
Coghlan told him that he could have an adrenal tumor. But three scans of his adrenal glands are all negative.
Discouraged but not discouraged, Lindsay did what he could do: he plunged back into the medical literature.
And he came with a treasure.
Later, he diagnosed a disorder that doctors did not believe could exist.
Lindsay suspected that there might be something in her adrenal gland that was acting like a tumor, but it was not one.
A fourth sweep in 2006 showed that his adrenal glands "shone," said Lindsay, an anomaly consistent with his new theory.
Coghlan called Lindsay and said, "We found it!" The diagnosis: bilateral hyperplasia of the adrenal medulla.
In simple terms, this means that the medulla or inner regions of her adrenal glands have been enlarged and act as tumors. His adrenal glands produced far too much adrenaline.
Experts in the field have doubted the diagnosis. But Coghlan put his professional reputation at stake to support him.
As Lindsay deepened his medical literature, he found only 32 people registered. bilateral hyperplasia of the adrenal medulla.
And he stared at what seemed like a simple solution: if he could cut the medulla from his adrenal glands – much like slicing into a hard-boiled egg and removing the yolk – his health would improve.
Dr. Chris Bauer, Lindsay's personal physician, calls his illness "an 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."
Then he launched a new surgery
Lindsay has finally come to a bold conclusion. "If there is no operation," he decided, "I will make one."
His first big advance was in 2008. He discovered a study done in 1980 by a scientist from Georgia State University, which he sums up: "
Then he discovered that another version of the adrenal medulla extraction had been performed at Harvard. Renowned professor, Walter Bradford Cannon, had performed the operation on cats in 1926. Lindsay discovered records of the operation performed on dogs.
He created a PDF of 363 pages proposing a first adrenal human medullectomy.
He then spent 18 months searching for a surgeon who would oversee the unorthodox procedure.
Pioneering a new surgery is a highly qualified act for ethical and financial reasons. Surgeons may lose their license by performing an unproven operation, especially in case of complications. And insurance companies tend not to reimburse patients for non-standard procedures.
Because many doctors in this specialized field knew each other, Lindsay was very careful about the idea that it could save her life.
Eventually, he recruited a surgeon from the University of Alabama in Birmingham. In September 2010, Lindsay went to the university hospital where the doctor managed to extract one of his adrenal medulla.
Three A few weeks after the procedure, Lindsay could stand for three hours. On Christmas Eve, he had the strength to walk to the church.
As he stood at the back of the church during midnight mass, hope was finally won.
But progress was slow. In 2012, he underwent a second operation at Washington University in St. Louis to remove the medullary bulb from his remaining adrenal gland.
A year later, he was good enough to go with friends in the Bahamas. It was the first time in his life that the Midwest had seen the ocean.
In early 2014, he stopped taking certain medications.
Coghlan, his champion, lived just long enough to see Lindsay's remarkable recovery. He died in 2015.
He is now helping other patients with rare diseases
Against all odds, Lindsay had found a way to escape.
But his mother was too delicate to be transferred to another institution, much less to undergo the operation of which his son was the pioneer. She died in 2016.
She was not able to see him cross the stage to earn his Bachelor's degree in Biology from Rockhurst University that year, 16 years after the start of his career.
Lindsay is now 41 years old. Many of the friends he was planning to graduate with are now married and have children in elementary school.
"You can not reclaim the past," said Lindsay.
Today, he still lives in the house of his childhood in St. Louis. He has to take nine medications a day and his health is far from perfect, but he has found life again.
He is not exactly the biology teacher he dreamed of being 21, but he is not far from reality. He leverages his experience to embark on a new career as a medical consultant.
"I could not be assistant manager at Trader Joe's. I do not have the physical capacity for that, "Lindsay said. "But I can travel, give speeches and go for walks. And I can try to change the world. "
Doctors are turning to him for help in identifying and treating rare diseases like his.
"I'm a tenured professor at Stanford and I do not know those answers," said Dr. Lawrence Chu, who found himself leaning on Lindsay when a patient with a rare illness spoke to him. "Doug was the expert consultant."
Lindsay has spoken at medical schools, including Stanford and Harvard, as well as a growing number of medical conferences. And he is working on a case study to be published in the British Medical Journal.
With his gift for resolving intractable problems, he hopes to help other patients with difficult-to-treat conditions find the way to wholeness.
"People have helped me," he said, "and now I have to help people."