Doug Lindsey is 21 years old and starts his senior year at Rockhurst University, Jesuit College in Kansas City, Missouri, when his world is being deployed.
After his first school day, the biology specialty collapsed at home in the dining room table, the room revolved around him.
It was 1999. Symptoms soon became intense and incurable. His heart would wake up, feel weak and often dizzy. Lindsay could only walk 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 former high school athlete has dreamed of becoming a professor of biochemistry or perhaps a writer for the Simpsons.
Instead, he will spend the next 1
The doctors were struck. The treatments did not help. Eventually Lindsey knew that if he wanted his life back, he would have to do it himself.
His journey after astonished medical specialists.
"He did something extraordinary," says John Novak, spokesman for Inspire, a healthcare social network for patients with rare and chronic illnesses. When people hear Lindsey's story, Novak says they often say, "I can do something like this for my child."
His mother was a living prophecy
Whatever it is wrong with him, family.
at the time Lindsay was 18 months old, his mother was so weak he could not take it anymore.
By the age of 4 she could no longer walk. She managed to pick it up one more time that year when he choked with a hammer. She saved his life.
Otherwise she was too fragile. She lived for decades, mostly in bed with the same condition that stole her son's twenties. After years of testing, she found her condition related to her thyroid gland but she was too sick to travel to the Mayo Clinic received more specialized care, Lindsay said.
Lindsay's aunt also developed the same disease, growing so feeble
As a teenager, staring at family life, Lindsay wondered if his body had also turned a time bomb.
That day in 1999, the alarm went off.  "When I called my mother that night to tell her I needed to drop out (from college), we both knew," he said. The curse of the family was struck.
He found answers in discarded textbooks
Since autumn 1999, Lindsay was nailed to a bed about 22 hours a day.
"If I had become, 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 saw specialists in endocrinology, neurology, internal medicine and other specialties. When one doctor had an idea, he turned Lindsey to a psychiatrist.
Then Lindsey knew he'd have to figure out his own trouble.
While in college, he took 2200 pages of an endocrinology textbook near a trash, hoping to use it to understand what his mother had. In it, he found an important passage discussing how adrenal disturbances can reflect thyroid abnormalities.
He gets sore on his adrenal glands, sitting above the kidneys on both sides of the lower abdomen.
Using a stash of aging medicine textbooks, Lindsay assumed that a whole class of autonomic nervous system disorders might exist outside the established categories of what most endocrinologists or neurologists knew.
Collecting cash for a computer, he had an old roommate from college to bring him and
Soon Lindsey came across the National Research Foundation's website, glad that a whole organization was devoted to studying the type of disorder, which struck him and his family. He asked the foundation to send him literature about the new research in the field.
None of the diseases the Foundation was investigating corresponds to the Lindsay Syndrome. But he was approaching.
He convinces a researcher who believes in him
Soon Lindsey decides he needs a partner – not just a doctor, but a scientist curious enough to take up a rare case and spend long hours with him in parsling
The best place to find this man, he thought, was at the annual conference of the American Autonomous Society attended by scientists from all over the world who focused on nervous system disorders.
In 2002, he delivered a presentation on his illness at the group meeting in Hilton Head, South Carolina. To get there, Lindsey bought a number of airplane tickets so that with the help of friends he could lie in several places during the flight.
Lindsey arrived at a wheelchair conference dressed in a suit and a tie and introduced himself as a trained Jesuit scholar. He tried to present himself as a student in the city or a junior colleague of scholars from the audience, not as a patient.
He was just a scientist who experimented in his own body. During his conversation, Lindsey claims that a particular medicine can help him.
Several scientists disagree with Lindsay's hypotheses about his illness. But that was not unexpected. He did not even have a bachelor's degree and told doctors at Harvard University, National Institutes of Health and Clinic in Cleveland that their medical training told them it was impossible.
"They did not patronize me. They treated me as a scientist, "Lindsay said." I was entering a world of science where I could not participate because I was at home and could not be a student. "
Dr. H. Cecil, a professor of medicine at the University of Alabama-Birmingham, turned to Lindsay after his presentation. Coglang said he believed Lindsey was on something.
Lindsay finally has a medical ally.
His first innovation was drug replacement
In early 2004, one of Linz's friends hired an SUV, loaded a mattress
Lindsay suspected his body was producing too much adrenaline. He knew about a drug called Levophed, which was approved by the US Food and Drug Administration to increase blood pressure in some critically ill patients. Levophed is the basis of a noradrenaline injection that counteracts the symptoms caused by excess adrenaline.
It was not done before, but Lindsay convinces Coghlan to change the medicine so he can live a 24/7 drop of noradrenaline for the next six years.
Lindsay spent "every second of every day" related to IV. This stabilizes his condition and allows him to be active for short periods of time around the house.
"I was not risking losing anything anymore," says Lindsey.
However, besides the visits of doctors, there is a high school gathering and several weddings, Lindsay's autonomic dysfunction holds him mostly in the house where he grew up well beyond his twenties.
Why was he so sick? Something threw too much adrenaline into his blood.
Coglan told him he might have a tumor of the adrenal gland. But three scans of his adrenal glands returned negative.
Lindy, but not forbidden, Lindsay did the only thing he could: He went back to the medical literature.
He went out with a treasure.  Later, he diagnosed a disorder that doctors did not believe it could exist.
Lindsey suspected that there might be something in his adrenal gland that acted as a tumor, but it is not.
A fourth scan in 2006 shows his adolescents 'brighter,' Lindsay said, an anomaly corresponding to his new theory.
Coglan called Lindsay and said, "We found it!" Diagnosis: bilateral adrenal medullary hyperplasia.
With regard to laymen, this means the medulla, or internal areas of its adrenal glands were enlarged and acted as tumors. Its adrenal glands produce too much adrenaline.
Experts in the area are in doubt about the diagnosis. But Coglang put his professional reputation on the line to support him.
While Lindsay was deepening in more medical literature, he found only 32 recorded cases of bilateral medullary adrenocortical hyperplasia.
And he determined what seemed like a simple solution: If he could cut off his adrenal glands – like slicing into a hard-boiled egg and removing yolk – his health would improve.
Dr. Chris Bauer, Lindsay's personal physician, calls his illness "an atypical presentation of a rare disease."
"They do not actually write textbooks on this basis," Bauer said. "We all learned with Doug as we continued."
Then he started a new operation
Lindsey finally came to a bold conclusion. "If there is no operation," he decided, "I will do one."
His first major role came in 2008. He opened a 1980 study by a scientist from the Georgian State University, which he summed up. up like: "You cut the rat's adrenal gland with a razor and squeeze it so that the medulla pops out like a pimple."
Then he discovered that Harvard had another version to extract the adrenal medulla. Famous Professor Walter Bradford Cannon has done the cat surgery in 1926. Lindsay opens recordings of the surgery, which is also done to dogs.
He builds a 363-page PDF document that offers first-ever human adrenal medlectomy.
He then spent the next 18 months working to find a surgeon to control the unorthodox procedure.
Pioneering a new operation is also an easy-going act for ethical and financial reasons. Surgeons could risk losing their license by performing an unproven operation, especially if complications arise. And insurance companies are reluctant to reward patients for non-standard procedures.
Since many of the doctors in this specialty area knew Lindsay was careful where he threw the idea that could save his life.
In the end, he is a surgeon from the University of Alabama-Birmingham. In September 2010, Lindsay went to the University Hospital, where the doctor successfully pulled one of his adolescent medulls.
Three weeks after the procedure, Lindsey can sit upright for three hours. By Christmas Eve he has the power to walk a mile to church.
As he stood in the back of the church during a midnight liturgy, he finally felt that 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 the rest of his adrenal gland.
A year later, he was good enough to fly with friends in the Bahamas. For the first time in his life, the Midwest has seen the ocean.
By the beginning of 2014 he was going down some of his medication.
Coglane, his champion, lived long enough to see Lindsey's remarkable restoration. He died in 2015.
Now he helps other patients with rare diseases
Against the backdrop of chances, Lindsay finds a way to save.
But his mother was too delicate to be moved to another establishment, let alone the surgery her son started. She died in 2016.
She could not see him go on stage to graduate at Rockhurst University with a Bachelor of Science degree in Biology, 16 years after she was originally expected to start her career.
Lindsey is now 41 years old. Many of the friends he's planned to graduate with are already married, with children in school.
"You can not regain the past," Lindsay said.
Today he still lives in his childhood home in St. Luis. He has to take nine drugs a day and his health is far from perfect, but he returns his life.
He's not exactly the biology professor he's dreamed of 21, but he's not far from the sign. He uses his experience in a new career as a medical consultant.
"I could not be an assistant manager at Trader Joe & # 39; s. I do not have the physical ability to do that, "Lindsay said. "But I can travel, 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.
" I am a regular Professor at Staphford and I do not know these answers, "said Dr. Lawrence Chu, who proved to be Lindsay speaks to medical schools, including Stanford and Harvard, and on a growing list of medical conferences, and he is working on a case that will be a case study for a patient with a rare illness. will be published in the British Medical Journal.
With its gift for solving unsolvable problems he hopes to help other patients with difficult to treat illnesses on their way to integrity
"I received help from people," he said, "and now I have to help people."