The story of the man who was bedridden for 11 years and managed to find the surgery that cured him

Doug Lindsay He was 21 years old and began his last year at Rockhurst University, a Jesuit University in Kansas City, Missouri, when his world collapsed.

After your first day of school, the biology student collapsed at home on the dining room tablethe room revolved around him.

It was in 1999. The symptoms quickly became intense and intractable. His heart was pounding, he felt weak and he often had his head spinning. Lindsay could only walk 50 meters at a time and could not stay more than a few minutes.

"Even lying on the floor did not feel low enough"He said.

The former athlete, practiced athletics in high school, I had dreamed of being a professor of biochemistry or maybe writer of "The Simpsons".

Instead, he would spend the next 11 years in a hospital bed in his living room in San Luis, affected by a mysterious illness.

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The doctors were baffled. The treatments did not help. And Lindsay finally figured out that if he wanted to get his life back, he should do it himself.

Your case has amazed health professionals.

"He did something extraordinary," he said. John Novack, spokesperson for Inspire, a social health care network for patients with rare and chronic diseases. When people listen to Lindsay's story, says Novack, they often say, "I can do something similar for my son."

His mother was a living prophecy

All that was wrong with him was seen in the family.

When Lindsay was 18 months old, his mother was so weak that he could no longer wear it.

When I was 4 years old I could not walk anymore. She managed to lift him once again that year, while he was stifling with a small toy ball. She saved his life.

She was too fragile. He lived for decades, mostly in bed with the same illness that stole some of his son's youth. After years of testing, it was determined that his condition was related to his thyroidBut she was too sick to go to the Mayo Clinic for more specialized care, Lindsay said.

Lindsay's aunt also developed the same diseasebecoming so weak that he could no longer tie his own shoes.

When I was a teenager, watching family members come out of life, Lindsay wondered if her body was also a time bomb.

Finally, that day, in 1999, the alarm was triggered.

"When I called my mother that night to tell her that I had to leave university (which was university), we both knewHe said The family curse had knocked on the door.

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Answers found in discarded medicine manuals

From the autumn of 1999, Lindsay was in bed about 22 hours a day.

"If I was awake, it was because I was eating or going to the bathroom"He said.

Lindsay plunged into medical research, determined to find a way out. He consulted specialists from endocrinology, neurology, internal medicine and other specialties. When a doctor was running out of ideas, he sent Lindsay back to a psychiatrist.

It was at this point that Lindsay realized that He had to solve his problem alone.

While he was in college, he had collected a 2,200-page endocrinology textbook near a garbage bin, in hopes of using it to discover the health status of his mother. He found an important pbadage that was discussing How Adrenal Disorders May Reflect Thyroid Disorders.

He focused on the adrenal glands, which are in the upper part of the kidneys on both sides of the lower abdomen.

Using a bunch of old textbooks, Lindsay hypothesized that there could be a complete clbad of system disorders. nervous autonomous beyond the categories established and known by the majority of endocrinologists or neurologists.

He collected money for a computer, he had a former clbadmate of the university take it and set to work.

Lindsay quickly visited the website of the National Disautonomy Research Foundation, delighted that an entire organization is dedicated to investigating the type of disorder that tormented him and his family. He asked the foundation to send him documentation on emerging research in the field.

None of the diseases reviewed by the foundation match Lindsay's pattern of symptoms. But it was getting closer.

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He convinced an investigator to believe in him

Lindsay soon decided that he needed a partnerNot only a doctor, but a scientist curious enough to deal with a rare case and spend long hours with him to badyze it.

The best place to find this person, he explained, was at the annual conference of the American Autonomous Society, which was attended by scientists from around the world who focused on disorders of the nervous system.

In 2002, he made a presentation about his illness at the group meeting in Hilton Head, South Carolina. To get there, Lindsay bought a series of plane tickets to be able, with the help of friends, to be in several places during the flight.

Lindsay arrived at the wheelchair conference, dressed in a suit and tie, and He introduced himself as a scientist trained by the Jesuits. He tried to behave like a graduate student or a junior colleague in front of the public academics, not like a patient.

He was just a scientist living an experience in his own body. During his interview, Lindsay argued that a certain drug could help her.

Several scientists disagreed with Lindsay's hypothesis about his illness. But it was not unexpected. I did not even have a bachelor's degree and I was telling doctors at Harvard University, the National Institutes of Health and the Cleveland Clinic that their medical training had told them that it was impossible.

"They ignored me. They've treated me like a scientistSaid Lindsay. "I was entering a scientific world in which I could not participate because I was at home and I could not go to graduate school."

he Dr. H. Cecil Coghlan, a professor of medicine at the University of Alabama-Birmingham, spoke to Lindsay after his presentation. Coghlan said that he thought Lindsay had something.

Finally, Lindsay had a medical ally.

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His first innovation was to rethink the use of a drug

In early 2004, one of Lindsay's friends rented a pickup truck, loaded a mattress at the back and led, landscaped, 800 kilometers from Birmingham.

Lindsay suspected that her body was producing too much adrenaline. I knew a drug called Levophed, approved by the US Food and Drug Administration. to increase blood pressure in some critical patients. Levophed is essentially a norepinephrine injectionwhich neutralizes the symptoms created by an excess of adrenaline.

It had not been done before, but Lindsay convinced Coghlan to reuse the drug for to be able to live with a drop of norepinephrine every day for the next six years.

Lindsay spent "every second of every day" connected to an intravenous system. He stabilized his condition and kept him active at home for short periods.

"He could not lose everythingSaid Lindsay.

However, aside from doctor visits, a high school reunion and some marriages, Lindsay's self-dysfunction kept him essentially confined to the home where he had grown beyond twenty years.

Why was he so sick? He wondered. Something has poured too much adrenaline into his blood.

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

Discouraged but not discouraged, Lindsay did the only thing she could do: back to the medical literature.

And he had a good idea.

He then diagnosed a disorder that doctors might not believe existed.

Lindsay suspected that there might be something in her adrenal gland that was acting like a tumor, but that was not the case.

A fourth exploration 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, it means that the zucchini or the inner regions of your adrenal glands have been enlarged and act like tumors. His adrenal glands produced too much adrenaline.

Experts in the field have doubted the diagnosis. But Coghlan puts its professional reputation on the line to support it.

While Lindsay plunged into more medical literature, found only 32 cases Registered hyperplasia of the bilateral adrenal medulla.

And he looked at what seemed like a simple solution: if he could cut the jellyfish from his adrenal glands, like cutting a boiled egg and removing the yolk your health would improve.

Dr. Chris Bauer, Lindsay's personal physician, calls his illness "atypical presentation of a rare disease"

"They do not really write textbooks based on that"said Bauer. "We were all learning with Doug as we went."

Then he launched a new surgery

Lindsay has finally reached a bold conclusion. "If there is no operation," he decided, "I'll do one.".

His first major breakthrough took place in 2008. He discovered a 1980 study by a scientist from Georgia State University, which was summarized as: grain. "

Then he discovered that another version of the adrenal cord extraction had been performed at Harvard. Renowned professor Walter Bradford Cannon operated on cats in 1926. Lindsay also discovered cases of dog surgery.

He created a PDF of 363 pages offering a first human adrenal medulectomy.

So He spent the next 18 months looking for a surgeon supervise the unorthodox procedure.

Being a pioneer in a new surgery is a far-reaching act, including for ethical and financial reasons. Surgeons may lose their license when they perform an unproven operation, especially in case of complications. And insurance companies tend not to reimburse patients for unconventional procedures.

As many of the doctors in this specialized area knew each other, Lindsay was careful not to think of the idea that could save her life.

Finally, he recruited a surgeon from the University of Alabama in Birmingham. In September 2010, Lindsday went to the University Hospital, where the doctor managed to remove one of his adrenal medulla.

Three weeks after the procedure, Lindsay could stay up for three hours. On Christmas Eve, I had the strength to walk 1.6 kilometers to go to church.

As I stood at the back of the church during midnight mbad, finally, felt the hope was winning.

But progress was slow. In 2012, underwent a second surgery at the University of Washington in St. Louis to remove medulla from the remaining adrenal gland.

A year later, I was good enough to go with friends in the Bahamas. It was the first time in his life that he was seeing the ocean.

Early 2014, I left drugs.

Coghlan, his ally, lived long enough to witness Lindsay's remarkable recovery. He died in 2015.

Now, help other patients with rare diseases

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

But his mother was too delicate to be transferred to another center, let alone to undergo the operation in which his son was a pioneer. She died in 2016.

He did not see him walk on the stage to graduate that year. Rockhurst University After graduating in biology, 16 years later, he was hoping to start 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 recover the past"said Lindsay.

Today, he still lives in his childhood home in San Luis. He has to take nine medications a day and his health is far from perfect, but he has found life again.

It is not exactly the biology professor who dreamed at 21, but he is not far from reality. He benefits from his experience in a new career as a medical consultant.

"I could not be badistant 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 yours.

"I'm a senior professor at Stanford and I do not know those answers," said the doctor. Lawrence Chu, who found 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, and a growing list of medical conferences. And he's working on a case study that will be published in the British Medical Journal.

With his gift of solving intractable problems, he hopes to be able to help other patients with hard-to-treat diseases on the road to integrity.

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