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This dropout was bedridden for 11 years. Then he invented surgery and healed himself



Doug Lindsay was 21 and graduated from Rockhurst University, a Jesuit college in Kansas City, Missouri, when his world collapsed. After his first day at school, the biology major collapsed on the dining table at home. It was 1999. The symptoms soon became intense and untreatable. His heart was racing, he was feeling weak and he often became dizzy. Lindsay was only able to walk for about 50 feet and not stand for more than a few minutes. "Even lying on the floor did not feel low enough," he said. The former high school athlete had been dreaming Instead, he spent the next eleven years in a hospital bed in his living room in St. Louis, which was plagued by a mysterious illness. The doctors were at a loss. Treatments did not help. And Lindsay finally realized that he had to do it himself if he wanted his life back. His journey has since astonished medical professionals. "He has done something extraordinary," said John Novack, spokesman for Inspire, a social network for rare and healthcare professionals, patients with chronic conditions. When people hear Lindsay's story, Novack often says, "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 1

8 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 got the same suffering and got so weak that she could not live anymore. As a teenager, Lindsay wondered if his body was also a ticking time bomb. Eventually, in 1999, the alarm went off. "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. From autumn 1999, Lindsay was 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 realized that he needed to find out for himself, he'd found a 2200-page endocrinology textbook near a trash can in college, hoping to find out what his mother's condition was. In it, he found an important body that discussed how adrenal gland disease might reflect thyroid disorders. He focused on his adrenal glands, which are located on the kidneys on both sides of the lower abdomen. Lindsay suggested that there might be a whole class of autonomic nervous system disorders that go beyond the established categories of most endocrinologists or neurologists. He made cash for a computer, had it brought to him by an old roommate, and got to work. The National Dysautonomic Research Foundation website was pleased to see an entire organization dedicated to researching the nature of the disorder that was affecting it his family was plagued. He asked the foundation to send him literature on emerging research in this field. For none of the illnesses did the foundation investigate 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 accept a rare case and spend many hours with him to analyze it. The Best Place To find this person, he attended the annual American Autonomic Society conference, attended by scientists from around the world who were concerned with nervous system disorders. In 2002, at the meeting of the group in Hilton Head, South, he gave a talk about his illness 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 and presented himself 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. 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. "You did not patronize me. They treated me like a scientist, "said Lindsay." 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 Lindsay said after his presentation, "Lindsay was on the right path." Lindsay recently had a medical ally, his first innovation being the reuse of a drug. "At the beginning of 2004, one of Lindsay's friends rented one from Alabama-Birmingham SUV, loaded a mattress in the back and drove him flat 500 miles to Birmingham Lindsay guessed that his body was producing too much adrenaline, he knew a drug called Levophed, which was approved by the US Food and Drug Administration is approved for increasing blood pressure in some critically ill patients, Levophed is basically an injection of Noradrena lin, which counteracts the symptoms caused by excessive adrenaline. It had not happened before, but Lindsay convinced Coghlan to re-use the drug so he could live with a 24-hour norepinephrine drop for the next six years. Lindsay spent "every second of the day" with an infusion. It stabilized his condition and allowed him to be active throughout the house for a short time. "I was no longer in danger of losing everything," Lindsay said. Apart from doctor visits, a high school meeting, and a few weddings, Lindsay's autonomic dysfunction kept him largely confined to the house he grew up in, well over twenty. Why was he so sick, he wondered? Something threw too much adrenaline into his blood. Coghlan told him he might have an adrenal tumor. But three scans of his adrenal glands were all negative. Discouraged but not deterred, Lindsay did the only thing he could do: he dove back into the medical literature. And he found a treasure. Later he diagnosed a disorder that doctors did not do. Lindsay guessed that there was something in his adrenal gland that looked like a tumor but was not. A fourth scan in 2006 showed that his adrenal glands were "bright," said Lindsay, an abnormality consistent with his new theory. Coghlan called Lindsay and said, "We found it!" Diagnosis: Bilateral medullary adrenal hyperplasia. In layman's terms, this means that the medulla or inner regions of its adrenal glands have been enlarged and behave like tumors. His adrenals produced far too much adrenaline. Experts in the field doubted the diagnosis. But Coghlan risked his professional reputation. When Lindsay was more concerned with medical literature, he found only 32 cases of bilateral medullary adrenal hyperplasia. And he opted for a simple solution: if he could cut out the medulla of his adrenal glands – like cutting into a hard-boiled egg and removing the egg yolk – his health would improve. Chris Bauer, Lindsay's personal physician, calls his suffering "an atypical representation of a rare disease". "They do not really write textbooks based on that," 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 from 1980 from a scientist at Georgia State University, which he summarized as follows: "They slice the adrenal gland of the rat with a razor blade and squeeze it together to allow the medulla how a pimple pops out. "Then he realized that another version of the adrenal medulla removal had taken place at Harvard. Renowned Professor Walter Bradford Cannon had the surgery performed on cats in 1926. Lindsay found records that the operation was also performed on dogs. He created a 363-page PDF file that suggested a very first adrenal medullary removal. Then he spent the next 18 days of months of work finding a surgeon to oversee the unorthodox procedure. The pioneering work for a new operation is also a compulsory exercise for ethical and financial reasons. Surgeons could risk losing their license through an undetected operation, especially if complications occur. And insurance companies tend not to compensate patients for standard procedures. Knowing many physicians in this field, Lindsay was cautious when he came up with the idea that could save his life Alabama-Birmingham. In September 2010, Lindsday 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. As he stood 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. A 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. By early 2014, he broke away from some of his physicians. Coghlan, his champion, lived just long enough to watch Lindsay's remarkable recovery. He died in 2015. Now he helps other rare disease patients. Lindsay had found a way to save herself. But his mother was too sensitive to be taken to another facility, much less to endure the operation her son had performed. She died in 2016. That year, 16 years after he had originally expected to start his career, she could not see him running across the field to graduate in biology from Rockhurst University. 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 about at the age of 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 at Trader Joe's, I do not have the physical ability for it," Lindsay said. "But I can travel and talk and walk, and I can try to change the world." Doctors turn to him to help them identify and treat rare diseases like his own. and I do not know those answers, "said Dr. Lawrence Chu, who relied on Lindsay when a rare disease patient came to him." Doug was the consultant. "Lindsay has degrees at medical schools, including Stanford and Harvard, and He is also working on a case study to be published in The British Medical Journal, which aims to bring other patients with difficult-to-treat diseases on the path to wholeness with his gift for solving difficult-to-treat conditions. " got help from people, "he said," and now I have to help people. "

Doug Lindsay was 21 years old and began his senior year at Rockhurst University, a Jesuit college in Kansas City, Missouri, when his world collapsed home on the dining 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 a professor of biochemistry or author of The Simpsons.

Instead, he spent the next eleven years mostly in a hospital bed in his living room in St. Louis, plagued by a mysterious illness.

Doctors were at a loss. Treatments did not help. And 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, Inspire spokesman, a social health 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 care, Lindsay said.

Lindsay's aunt also developed the same disease that became so weak that she became unable to tie her own shoes.

As a teenager, Lindsay wondered if his body was also a ticking time bomb.

Eventually, in 1999, the alarm went off.

"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 approximately 22 hours a day.

"When I was up, it was because I ate or went to the bathroom," he said.

Lindsay entered 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.

At that time, Lindsay realized that he needed to find out for himself.

During his study, 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 adrenal glands, 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.

He made cash for a computer, got it from an old college roommate, and got to work.

Lindsay soon stumbled across the website of the National Dysautonomic Research Foundation, and was pleased that an entire organization was 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 long hours parsing it out.

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 gave a presentation 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.

Some of the scientists disagreed with Lindsay's hypotheses about his condition. 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 off-road vehicle and loaded a mattress in the back, driving it flat, 500 miles to Birmingham.

Lindsay suspected that 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 persuaded 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.

Still a highlight apart from the doctor's visits Reunion at school and a few weddings meant that Lindsay's autonomic dysfunction limited him largely to the house where he had grown up well beyond his twenties.

Why was he so sick, 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 dove back into the medical literature.

And he found a treasure. [19659013] He later diagnosed a disorder that doctors did not believe could exist

Lindsay suspected that there was something in his adrenal gland that looked like a tumor but was not.

A fourth scan in 2006 showed his adrenal glands. "bright," said Lindsay, an abnormality consistent with his new theory.

Coghlan called Lindsay and said, "We found it!" Diagnosis: bilateral adrenal hyperplasia.

Laymen say that the medulla or inner regions of his adrenal glands were enlarged and how tumors worked. His adrenals produced far too much adrenaline.

Professionals doubted the diagnosis. But Coghlan risked his professional reputation.

When Lindsay was more concerned with medical literature, he found only 32 recorded cases of bilateral medullary adrenal hyperplasia.

And he focused on what seemed like a simple solution: if he could cut out the medulla of his adrenal glands – like cutting into a hard-boiled egg and removing 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 major track came in 2008. He found a study conducted in 1980 by a Georgia State University scientist that he summed up as: "They cut up the rat's adrenal gland with a razor blade and squeeze it together so that the marrow pops out like a pimple. "

He then 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 suggesting a very first medullectomy of the human adrenal glands.

Then, for the next 18 months, he worked to find a surgeon to oversee the unorthodox procedure.

The pioneering work for a new operation is also a high-wire act 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 many physicians 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, Lindsday 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 stood 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, much less endure her son's operation 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 at the age of 21, but he's not far from the target. He uses his experience for a new career as a medical consultant.

"I could not be a deputy manager at Trader Joe's, I do not have the physical ability to do that," Lindsay said. "But I can travel and talk and 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'm a professor at Stanford University and I do not know those 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 for solving difficult-to-treat problems, he wants to bring other patients with difficult-to-treat diseases on their way towards wholeness.

"I got help from people," he said, "and now I have to help people."


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