ST. Luis – Doug Lindsey is 21 years old and begins his senior year at Rockhurst University, a Jesuit college in Kansas City, Missouri, when his world collapsed. The room was spinning around him.
It was in 1999. Symptoms soon became intense and incurable. His heart was racing, feeling weak, and often dazzling.
Lindsay could only walk about 50 feet at a time and could not stand for more than a few minutes.
The former high school athlete has dreamed of becoming a professor of biochemistry or perhaps a writer for Simpsons.
Instead, he will spend the next 11 years mostly on a hospital bed in his living room in St. Louis, crippled by a mysterious disease.
The doctors were confused. Treatment did not help. Lindsey eventually realized that if he wanted to get his life back, he would have to do it alone.
His journey has been amazed by medical specialists since then.
"He did something unusual," said John Novak, a spokeswoman for Inspire, a health 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 that for my child."
When Lindsey was 1
When he was four years old, he could not walk anymore. She managed to take it once more this year when she choked with her pocket. She saved his life.
Otherwise she was too fragile. She has lived for decades, mostly nailed to the bed with the same condition that she stole her son's 20 years.
Lindsey's aunt has also developed the same illness, growing so weak that she could not tie her own shoes.
As a teenager, looking at his family members left behind, Lindsay wondered if his body was
Finally, that day in 1999, the alarm went off.
"When I called my mother that night to tell her I had to leave (from college), we both knew,"
The family curse struck.
Since the fall of 1999, Lindsay has been on bed for about 22 hours a day.
Lindsay plunged into medical research, determined to find a way out.
He saw specialists in endocrinology, neurology, internal diseases and other specialties.
When a doctor came out of ideas, he directed Lindsay to a psychiatrist.
Then Lindsey realized he would have to figure out his difficulty
While in college, he took an 2200-page endocrinology textbook near a garbage bin, hoping to use it to understand what condition his mother had.
Here he found an important passage that discussed how adrenal disturbances can reflect thyroid abnormalities.
He has been targeting his adrenal glands, sitting at the top of the kidneys on both sides of the lower abdomen. nervous system disorders could exist beyond established categories for what most endocrinologists or neurologists knew.
He picked up cash for a computer, had an old college roommate and had to work.
ndsay soon came to the website of the National Dysautonomic Research Foundation, a pleasure that an entire organization is devoted to studying the type of disorder torturing him and his family.
None of the diseases the Foundation has tested have met the symptoms of Lindsay.
Soon Lindsey decided he needed a partner – not just a doctor, but a scientist curious enough to take up a rare case and spend hours with him analyzing it.
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 presented a presentation on his illness meeting group at Hilton Head, South Carolina.
In order 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 presented himself as a Jesuit-trained scholar.
He tried to adapt as a student or junior colleague to scholars from the audience, not as a patient.
He was just a scientist to live an experiment in his own body. During the conversation, Lindsey says a drug can help him. Some scientists did not agree with Lindsay's hypotheses about his illness. But that was not unexpected.
He did not even have a bachelor's degree, and he told doctors from Harvard University, the National Institute of Health and Clinic in Cleveland, that their medical training 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 medical professor at the University of Alabama-Birmingham, turned to Lindsay after his presentation. Coglan said he thought Lindsey was something.
Lindsay finally had a medical ally.
At the beginning of 2004, one of Lindsay's friends hired a jeep, loaded a mattress in the back and drove him down. 500 miles to Birmingham.
Lindsey suspected his body was producing too much adrenaline. He knew about a medicine called Levophed, which was approved by the American Food and Drug Administration to increase blood pressure in some critically ill patients.
Levophed is a major injection of noradrenaline that counteracts the symptoms caused by excess adrenaline. This was not done before, but Lindsay convinces Coglang to redirect the drug so that he can live a 24/7 norepinephrine drop over the next six years.
Lindsay spent "every second of every day" attached to IV. He stabilized his condition and allowed him to be active for short periods of time around the house.
"I was no longer at risk of losing everything," Lindsay said.
However, in addition to the doctors' visits, high School Gathering and several weddings, Lindsey's autonomic dysfunction held him predominantly in the house where he grew up much more than the 1920s. Something ejected too much adrenaline into his blood.
Coglang told him he might have an adrenal tumor. But three scans of his adrenal glands returned negative.
Lindy, but not forbidden, Lindsay did the only thing he could do: He returned to the medical literature.
And he came with a treasure. Lindsay suspected there might be something in her adrenal gland that acts as a tumor, but she was not. 19659002] Coglan called Lindsay and said, "We found him." tumors. His adrenal glands produced too much adrenaline
Experts in the area doubted the diagnosis. But Coghlan put his professional reputation on the line to support her
As Lindsey goes into more medical literature, he finds only 32 recorded cases of bilateral adrenal medullary hyperplasia. it seemed just a solution: if he could cut the medulla of his adrenal glands – like cutting a hard-boiled egg and removing yolk – his health would improve. Chris Bauer, Lindsay's personal physician, calls his illness "an atypical presentation of a rare disease."
"They really do not write textbooks on this basis," says Bauer. "We were, we all learned with Doug as we walked together."
Lindsay finally came to a bold conclusion.
"If there is no surgery, I will do one," he decided. His first major experience came in 2008. He opens a 1980 study by a college scientist at Georgia State University, which sums up: "Cut the rat adrenal gland with a razor blade and squeeze it to pop up the medulla like
After he found another version of Harvard adrenaline extraction.
The famous Professor Walter Bradford Cannon performed the cat surgery in 1926. Lindsay has found records of the operation performed on dogs like
He built a 363-page PDF file that offered the first human adrenal medullectomy.
He then spent the next 18 months to find a surgeon to monitor the unorthodox procedure. Surgery is high on ethical and financial grounds 002] Surgeons may risk losing their license by performing an unproven operation, especially if complications arise.
And insurance companies usually do not reimburse patients for non-standard procedures. another, Lindsey is careful when he puts the idea that can save his life.
He eventually hired 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 adolescent medulls. Three weeks after the procedure, Lindsey could stand up for three hours. On the eve of Christmas, he had the power to walk a kilometer to the church. In 2012, he went through a second surgery 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 its life, the Midwest has seen the ocean.
At the beginning of 2014, he was out of some of his medications.
Coglane, his champion, lived long enough to see Lindsey's remarkable restoration. He dies in 2015.
On the contrary, Lindsey has found a way to save himself.
But his mother is too delicate to be moved to another facility, let alone survive the operation her son has done. She died in 2016. She failed to see him go on stage to graduate this year from Rockhurst University with a Bachelor of Science degree in Biology, 16 years after he was originally expected to start her career.
now 41 years old. Many of the friends he was planning to finish with are now married with primary school children.
"You can not conquer the past," Lindsay said.
Today, he still lives in his childhood home in St. Louis. He has to take nine medications a day, and his health is far from perfection, but he has his life back. He uses his experience in a new career as a medical consultant.
"I could not be an Assistant Manager at Trader Joe. I have no physical abilities for that, "Lindsey said. "But I can travel and talk and walk. I can try to change the world. "
Doctors turn to him to help them identify and treat rare diseases like his.
– said Dr. Lawrence Chu, who came to Lindsey when a patient with a rare illness came to him. "Doug was an expert consultant."
Lindsay speaks in medical schools, including Stanford and Harvard, and in a growing list of medical conferences. Works on a case study to be published in the British Medical Journal.
With his gift of solving difficult problems, he hopes to help other patients with difficult to treat diseases on the path to integrity.
"I got help from people and now I have to help people," he said.