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

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

After his first day of classes, the biology major collapsed at home on the dining table, turning the room 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 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 dreamed of becoming a biochemistry professor or perhaps writing for The Simpsons.

Instead, he spent the next 11 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 That he had to do it himself if he wanted his life back.

  Today, Lindsay tells his remarkable story to audiences across the country, including at a TEDx event in St. Louis.

His journey has astounded physicians ever since.

"He has done something extraordinary," said John Novack, Inspire spokesman, a social network in the United States Health Care 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 K ind do. "

His mother was a living prophecy

Whatever was going on 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 developed the same suffering and became so weak that she could no longer tie her own shoes.

  Rockhurst University, Kansas City, where Lindsay studied before forcing him to abandon a mysterious illness in 1999. [19659019] Rockhurst University in Kansas City, where Lindsay was a student before a mysterious illness, forced him to leave in 1999.

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

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.

From autumn 1999, Lindsay was bedridden for about 22 hours a day.

It was because I ate or went to the bathroom, "he said.

Lindsay went into medical research, determined to find a way out, seeing specialists in endocrinology, neurology, internal medicine, and others If a doctor had no more ideas, he referred Lindsay to a psychiatrist.

When Lindsay realized he needed to find out his problem himself.

During his studies, he had a 2200-page endocrinology textbook nearby hoping to find out what happened to his mother in a dumpster, where he found an important passage that discussed how adrenal gland disease might reflect thyroid disorders.

  When he was 19, Lindsay was almost completely bedridden. [19659028] When he was 19 years old, Lindsay was almost completely bedridden.

He focused on his adrenal glands, which are located on the Kidneys sit side of the lower abdomen.

Lindsay suggested that a whole class of autonomic nervous system disorders might exist that go beyond the established categories that most endocrinologists or neurologists knew.

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 a whole 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 pattern. But he came closer.

He convinced a researcher who believed in him.

Lindsay soon decided he needed a partner – not just a doctor, but a scientist curious enough to accept a rare case. The best place to find that person was the annual American conference Autonomic Society, which was 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 Carolina, he gave a lecture about his illness. 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.

  At a research conference, Lindsay tried to convince specialists that he was suffering from a disease that did not occur. 39; t appear in their textbooks.

[19659035] Lindsay came to the conference wearing a suit and tie in a wheelchair and presented 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 suffering. 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 thought Lindsay was on the right track.

Lindsay finally had a medical ally.

His first innovation was the reuse of a drug.

In the beginning of 2004, one of Lindsay's friends rented a SUV loaded a mattress in the back and drove him lying flat 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 "one second of the day" with an IV. It stabilized his condition and allowed him to be active in the house for a short time.

"I was no longer at risk of losing everything," Lindsay said.

  The unique case of Lindsay fell Cecil Coghlan, who specializes in the treatment of disorders of dysautonomia.

Apart from doctor visits, a high school meeting, and a few other weddings, Lindsay's autonomic dysfunction limited him largely to the house where he had grown 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 went back to medical literature.

And he found a treasure.

Later he 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 it was not.

A fourth scan in 2006 showed that his adrenal glands "glowed brightly," Lindsay said, an abnormality that was 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 found that another version of the adrenal medulla extraction had been performed 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 featured a very first human adrenal medullectomy.

He then spent the next 18 months finding a surgeon to oversee the unorthodox procedure.

  With a little help from his friends, Lindsay was able to travel to the University of Pennsylvania Society for Amateur Scientists meeting in Pennsylvania in 2002.

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 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, Lindsday went to the University Hospital, where the doctor successfully extracted one of his adrenal tubes.

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

Despite all doubt, Lindsay had found a way to save himself.

But his mother was too sensitive to be transferred to another facility, let alone to endure the operation her son had performed. 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.

  In 2017, Lindsay told his graduate alma mater, De Smet Jesuit High School in St. Louis, his story.

"You can not reclaim the past," Lindsay said.

Today he still lives in his parents' house 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 from it. 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 abilities for 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.

  Lindsay now speaks regularly at health conferences.

"I am a full professor at Stanford and I do not know those answers," Dr. Lawrence Chu, who relied on Lindsay when he was a rare human 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."

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