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The Missouri man, bedridden for 11 years, invented surgery and healed himself



ST. LOUIS – Doug Lindsay was 21 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 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 could walk only about 50 feet at a time and could not stand for more than a few minutes.

I do not feel it's low enough, "he said.

The former college athlete had dreamed of becoming biochemistry professor or perhaps also writer for "The Simpsons".

Instead, he spent the next 1

1 years mostly in a hospital bed in his living room in St. Louis, which was 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.

Since then, his journey has astounded medical professionals.

"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 often says, "I can do something similar for my child." 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 condition that had stolen her son's 20s.

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 to further specialize, said Lindsay.

Lindsay's aunt got the same suffering and became so weak that she could not tie her own shoes.

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

At last, on this day in 1999, the alarm went off.

"When I called my mother that evening to tell her I had to get out of college, we both knew," he said.

The family curse had struck.

Since the fall of 1999, Lindsay has been bedridden for about 22 hours a day.

"When I was on it was because I ate or went to the hospital bath," he said.

Lindsay engaged in 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 moment, Lindsay realized that he needed to find out about his predicament.

During his studies, he had found a 2200-page endocrinology textbook near a garbage bin, hoping to see what his mother's condition was.

In this book, he found an important passage in which he talked about how adrenal disease could reflect thyroid disorders.

He focused on his adrenals, which sit on the kidneys on both sides of the lower abdomen.

Lindsay suspected that a whole class of autonomic people is ancient. Nervous system disorders could exist beyond the established categories that most endocrinologists or neurologists knew about.

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

Li ndsay soon stumbled upon the National Dysautonomic Research Foundation's website, 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 studied by the foundation matched Lindsay's symptom pattern. But he came closer.

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 long hours with him to analyze it.

The best place to find him This person, he argued, attended 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 at the group's meeting in Hilton Head, South Carolina.

In order to get there, Lindsay bought a number of airline tickets so that he could lie on several seats with the help of friends during the flight.

Lindsay came to the conference He was sitting in a wheelchair wearing a suit and tie, introducing himself as a Jesuit-trained scientist.

He tried to be like a doctoral student or a young colleague to the scholars in the audience, not like a patient.

] He was just a scientist living 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 from 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.

At the beginning of 2004, one of Lindsay's friends rented an off-road vehicle, loaded a mattress in the back and drove it lying 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.

Levophed is basically an injection of norepinephrine, which counteracts the symptoms caused by excessive adrenaline.

] It had never been done before, but Lindsay convinced Coghlan to reuse the drug so he could live on a 24/7 norepinephrine drip for the next six years.

Lindsay spent "every second of every 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 in danger of losing everything," Lindsay said.

Apart from the doctor's visits, it was nonetheless a highlight. Reunion at school and a couple of weddings meant that Lindsay's autonomic dysfunction limited him largely to the house where he grew up.

Why was he so ill, he wondered? Something too much adrenaline poured into his blood.

Coghlan told him he might have an adrenal tumor. But three scans of his adrenal glands were negative.

Lindsay was discouraged but not deterred. He did the only thing he could do: he dived back into medical literature.

And he found a treasure.

Lindsay suspected that something in his adrenal gland was like a tumor, but not one.

A fourth scan in 2006 showed that his adrenal glands "shine brightly," said Lindsay, an abnormality that agrees with his new theory. [19659002] Coghlan called Lindsay and said, "We found it."

Diagnosis: Bilateral medullary adrenal hyperplasia.

In layman's terms, this means that the medullas or inner regions of his adrenal glands have been enlarged and behave 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."

Lindsay finally came to a brave conclusion.

"If there is no operation, I will make one," he decided. His first big lead came in 2008. He found a study done in 1980 by a Georgia State University scientist, which he summarized as follows: "The rat's adrenal gland is cut open with a razor blade and squeezed together, leaving the rat Medulla like a popping out.

He then noted that another version of adrenal gland extraction had been performed at Harvard.

Renowned Professor Walter Bradford Cannon had performed the surgery on cats in 1926. Lindsay found records that the surgery on dogs was performed well.

He created a 363-page PDF file that suggested a very first human adrenal graft removal.

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

The pioneer of a new surgery is also a high-wire act for ethical and financial reasons. [19659] 002] Surgeons may lose their license by performing an unproven surgery, especially if complications occur.

And insurance companies tend not to compensate patients for non-standard procedures.

Because many of the physicians in this field knew their way around, on the other hand, Lindsay was cautious about where he came up with the idea that could save his life.

Finally, 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 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 the beginning of 2014, he withdrew some of his medications.

Coghlan, his champion, lived just long enough to see Lindsay's remarkable recovery. He died in 2015.

Against all odds, Lindsay had found a way to save himself.

But his mother was too sensitive to be transferred to another facility, much less to endure the operation for which her son had done 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 and now I have to help people," he said.

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