Doug Lindsay was 21 years old and graduated from Rockhurst University, a Jesuit college in Kansas City, Missouri, when his world imploded.
After completing his first day of classes, the biology major collapsed at home in the dining room table, the room revolving around him.
It was 1999. The symptoms soon became intense and untreatable. His heart was racing, he was feeling weak and he often became dizzy. Lindsay could walk only about 50 feet at a time and could not stand for more than a few minutes.
"Even lying on the floor did not feel low enough," he said.
The first high school athlete had dreamed of becoming biochemistry professor or perhaps writer for "The Simpsons".
Instead, he spent the next 1
Doctors were baffled. Treatments did not help. Lindsay finally realized he had to do it himself if he wanted his life back.
His journey has since astonished physicians.
"He has done something extraordinary," said John Novack, spokesman for Inspire, a healthcare social network for patients with rare and chronic diseases. When people hear Lindsay's story, Novack said, they often say, "I can do something similar for my child."
His mother was a living prophecy.
Whatever was wrong with him ran in the family.
When Lindsay was 18 months old, his mother was so weak that she could not pick him up.
When he was 4 years old, she could not walk anymore. She managed to pick him up again this year when he was suffocating on a jawbreaker. She saved his life.
Otherwise she was too frail. She lived for decades, mostly bedridden, with the same illness that had stolen her son's twenty. After years of testing, she found that her condition was related to her thyroid, but she was too ill to travel to the Mayo Clinic for a more specialized treatment, Lindsay said.
Lindsay's aunt also developed the same illness and became so weak that she contracted her. As a teenager, Lindsay wondered if his body was also a ticking time bomb.
On this day in 1999, the alarm went off.
19659002] "When I called my mother that evening to tell her that I had to drop out of college, we both knew," he said. The family curse had hit.
He found answers in discarded medical textbooks.
Since the fall of 1999, Lindsay has been bedridden for about 22 hours a day.
"When I was up, it was because I ate or went to the bathroom," he said.
Lindsay went into medical research and was determined to find a way out. He saw specialists in endocrinology, neurology, internal medicine and other specialties. When a doctor had no more ideas, he referred Lindsay to a psychiatrist.
When Lindsay noticed that he had to find out for himself.
During his studies, he had read 2,200 pages of endocrinology textbook near a garbage bin, hoping to find out what condition his mother had. In it he found an important point in which he discussed how adrenal gland disease might reflect thyroid disorders.
He focused on his adrenals, which sit on the kidneys on both sides of the lower abdomen.
Lindsay hypothesized that a whole class of autonomic nervous system disorders might exist that go beyond the established categories of most endocrinologists or neurologists.
got down to work.
Lindsay soon stumbled across the website of the National Dysautonomic Research Foundation and was pleased that an entire organization was dedicated to exploring the nature of the disorder that plagued him and his family. He asked the foundation to send him literature on emerging research in this field.
None of the diseases that the foundation examined fit Lindsay's symptom patterns. But he came closer.
He convinced a researcher who believed in him.
Lindsay soon decided that he needed a partner – not just a doctor, but a scientist who was curious enough to engage in a rare case and spend many hours with him.
The best place to find this person was the annual American Autonomic Society conference, attended by scientists from around the world who were concerned with nervous system disorders.
In 2002, he delivered a lecture about his illness while meeting the group in Hilton Head, South Carolina. To get there, Lindsay bought a number of plane tickets so that he could lie on several seats with the help of friends during the flight.
Lindsay came to the conference wearing a suit and tie in a wheelchair, presenting herself as a Jesuit-trained scientist. He tried to behave like a student or a young colleague to the scholars in the audience, not like a patient.
He was just a scientist who lived an experiment in his own body. During his presentation, Lindsay argued that a particular drug might help him.
Several scientists disagreed with Lindsay's hypotheses about his condition. But that was not unexpected. He did not even have a bachelor's degree and told doctors at Harvard University, the National Institutes of Health, and the Cleveland Clinic that their medical education was impossible.
"They did not patronize me. They treated me like a scientist, "Lindsay said. "I entered a world of science that I could not attend because I was at home and could not be a doctoral student."
Dr. H. Cecil Coghlan, professor of medicine at the University of Alabama-Birmingham, addressed Lindsay after his presentation. Coghlan said he believed Lindsay was on the right track.
Lindsay finally had a medical ally.
His first innovation was the reuse of a drug.
In early 2004, one of Lindsay's friends rented an SUV and loaded a mattress in the back, driving him flat, 500 miles to Birmingham.
Lindsay suspected his 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. Basically, Levophed is an injection of norepinephrine, which counteracts the symptoms of excessive epinephrine.
It had not been done before, but Lindsay convinced Coghlan to reuse the drug so he could live with a 24-hour norepinephrine drop for the next day. Six years.
Lindsay spent "every second of the day" connecting to an IV. It stabilized his condition and allowed him to be active in the house for a short time.
"I was no longer in danger of losing everything," Lindsay said.
Apart from the doctor's visits, it was still a highlight The school reunion and a few weddings led to Lindsay's autonomic dysfunction largely confining him to the house where he had grown up well beyond his twenties.
Why was he so ill, he wondered? Something too much adrenaline poured into his blood.
Coghlan told him he might have an adrenal tumor. However, three scans of his adrenal glands were all negative.
Although discouraged, Lindsay was not deterred from doing the only thing he could do. He dived into the medical literature.
And he found a treasure.
] Later he diagnosed a disorder that doctors did not believe could exist.
Lindsay guessed that something in his adrenal gland behaved like a tumor, but that was none.
A fourth scan in 2006 showed his adrenal glands. "Bright brilliant," said Lindsay, an abnormality that agrees with his new theory.
Coghlan called Lindsay and said, "We found it! "Diagnosis: bilateral medullary adrenal hyperplasia.
In lay form, it means the medulla. or inner regions of his adrenal glands were enlarged and appeared like tumors. His adrenals produced far too much adrenaline.
Professionals doubted the diagnosis. But Coghlan put his professional reputation at risk to underpin this.
When Lindsay was more concerned with medical literature, he found only 32 cases of bilateral medullary adrenal hyperplasia.
And he pinpointed what It seemed to be a simple solution: if he could cut out the adrenal medulla – cut into a hard-boiled egg and remove the yolk – his health would improve.
Dr. Chris Bauer, Lindsay's personal physician, calls his suffering "an atypical representation of a rare disease".
"They do not really write textbooks based on it," Bauer said. "We all learned with Doug when we went on."
Then he pioneered a new operation
Lindsay finally came to a brave conclusion. "If there is no operation," he decided, "I'll make one."
His first big lead came in 2008. He found a study done in 1980 by a Georgia State University scientist he summed up as: "They slice the adrenal gland of the rat with a razor blade and squeeze it together the marrow pops out like a pimple. "
Then he discovered that another version of the adrenal medulla extraction had been performed at Harvard. The renowned professor Walter Bradford Cannon had carried out the operation on cats in 1926. Lindsay found records that the operation was also performed on dogs.
He created a 363-page PDF file in which a first medullectomy of the human adrenals was proposed.
He then worked for the next 18 months to find a surgeon to oversee the unorthodox procedure.
The pioneering work for a new operation is also a duty exercise for ethical and financial reasons. Surgeons could risk losing their license through an undetected operation, especially if complications occur. And insurance companies tend to pay patients no compensation for non-standard procedures.
Knowing a lot of doctors in this field, Lindsay was careful when he came up with the idea that could save his life.
Finally, he hired 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 cortices.
Three weeks after the procedure, Lindsay was able to sit upright for three hours. Until Christmas Eve, he had the strength to walk a mile to church.
When he was standing in the back of the church during midnight mass, it finally felt like hope was winning.
But the progress was slow. In 2012, he underwent a second operation at Washington University in St. Louis to remove the medulla from his remaining adrenal gland.
One year later he was good enough to fly with friends to the Bahamas. It was the first time in his life that the Midwest saw the ocean.
Until early 2014, he broke away from some of his medications.
Coghlan, his champion, lived just long enough to see Lindsay's remarkable recovery. He died in 2015.
Now he helps other rare disease patients.
Against all odds, Lindsay had found a way to save himself.
But his mother was too sensitive to be taken to another facility, let alone endure her son's surgery pioneering work. She died in 2016.
She could not see him walk across the stage to graduate this year from Rockhurst University with a bachelor's degree in biology, 16 years after he had originally expected his career to start.
Lindsay is now 41 years old. Many of the friends he wanted to graduate with are now married and have children in elementary school.
"You can not recapture the past," Lindsay said.
Today he still lives in his parents' home in St. Louis. He has to take nine medications a day and his health is far from perfect, but he has his life back.
He's not exactly the biology professor he dreamed of to be at 21, but he's not far off. He uses his experience for a new career as a medical consultant.
"I could not be a deputy manager with Trader Joe. I do not have the physical ability for that, "Lindsay said. "But I can travel and talk and go for a walk. And I can try to change the world. "
Doctors turn to him to help them identify and treat rare diseases like his own.
"I am a professor at Stanford University and do not know these answers," Dr. Lawrence Chu, who relied on Lindsay when a rare disease patient came to him. "Doug was the Distributor."
Lindsay has spoken at medical schools, including Stanford and Harvard, and on a growing list of medical conferences. And he is working on a case study to be published in the British Medical Journal.
With his gift to solve difficult-to-treat problems, he wants to bring other patients with difficult-to-treat diseases on their way to wholeness.
"I got help from people," he said, "and now I have to help people."