ST. Lewis, Mo. – Doug Lindsey is 21 and starts his year at Rockhurst University, a Jesuit college in Kansas City, when his world is destroyed.
After his first day in class, the biologist collapsed home in the dining room. the table was spinning around him.
It was 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.
"Even if you lay on the floor, it did not feel low enough," he said.
The high school athlete dreamed of becoming a professor of biochemistry or perhaps a writer for Simpsons.
Instead, he will spend the next 1
The doctors were confused. Treatment did not help. Eventually Lindsay realized that if he wanted 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, spokesman for Inspire. a social network for patients with rare and chronic diseases. When people hear Lindsay's story, Novak says, they often say, "I can do something like that for my child."
His mother is a living prophecy.
When Lindsey was 18 months old, his mother was so weak she could not take it anymore.
When he was 4, 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 lived for decades, mostly nailed to the bed, with the same condition in which she had stolen her son's twenties. After years of testing, she found her condition linked to her thyroid gland, but she was too sick to travel to the Mayo Clinic to get more specialized care, Lindsay said.
As a teenager, looking at the members of his family, abandoned by life, Lindsey wondered if his body was also a time bomb.
That day in 1999, the alarm went off. 19659002] "When I called my mother tonight to tell her I had to quit (from college), we both knew," he said.
He found answers in discarded medical textbooks
Since autumn 1999, Lindsay has been in bed for about 22 hours a day. or went to the bathroom, "he said.
Lindsay plunged into medical research, determined to find a way out. He has seen 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 she would have to figure it out for herself.
While in college, he took 2,200 pages of an endocrinology textbook near a trash bin, hoping to use it to find out what his mother had. In it, he discovers an important passage that discusses how adrenal diseases can reflect thyroid abnormalities.
He has been targeting his adrenal glands, sitting on the kidneys on both sides of the lower abdomen. Lindsay assumed that a whole class of vegetative nervous disorders could exist beyond the established categories most endocrinologists or neurologists knew.
He collected cash for a computer, and the old roommate from the college brought him and
Lindsey soon found himself on the website of the National Disability Research Foundation, with the pleasure that an entire organization was devoted to studying the type of disorder , which afflicts him and his family. He asked the Foundation to send him literature on emerging research in the field.
None of the diseases the Foundation has tested have met the symptoms of Lindsay. But he was approaching.
Convince a researcher who believed him
Soon Lindsey decided he needed a partner-not just a doctor, but a scientist curious enough to deal with a rare case and spend hours with him.
The best place to discover this man, he says, 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 at the group meeting in Hilton Head, South Carolina. To get there, Lindsey bought a number of airline tickets, so with the help of his friends he could lie several places in flight.
Lindsey arrived at a wheelchair conference dressed in a suit and a tie, and portrayed himself as a Jesuit trained scientist. He tried to adapt as a student or junior colleague to the scholars of the audience, not as a patient.
He's just a scientist who lives an experiment in his own body. During his conversation, Lindsey claims that a particular medicine can help him.
Some 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 from Harvard University, the National Institute of Health and the Cleveland Clinic 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.
Lindsay finally had a medical ally.
His first innovation was Drug Redirection
At the beginning of 2004, one of Lindsay's friends hired an SUV that loaded a mattress. in the back and drove him, lying 500 miles to Birmingham. Lindsay 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 has not been done before, but Lindsay convinces Coglan to redirect the drug so that he can live a 24/7 Noradrenaline Drop for the next Six Years.
Lindsay spends "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 physician visits, high School Gathering, and several weddings, Lindsey's autonomic dysfunction had kept him in the house where he grew up well after the twenties.
Why was he so sick, he asked? 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. Later he diagnosed a disorder that doctors do not believe it could exist.
Lindsay suspected there might be something in his adrenal gland that acts as a tumor, but it was not. brightly lit, "said Lindsey, the abnormality corresponding to his new theory.
Coglan called Lindsay and said, "We found it!" Diagnosis: double-sided, medullar hyperplasia. or internal regions of the adrenal glands grow and act as 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 all learning with Doug as we walked together." "If there is no operation," he decided, "I will do one."
His first major experience came in 2008. He found a 1980 study by a scientist at Georgia State University, who summed up. "Cut the adrenal gland of a rat with a razor blade and squeeze it to pop up the medulla like a pimple."
Then he discovered that another version of adrenal extraction was made at Harvard. Well-known Professor Walter Bradford Cannon has done the cat surgery in 1926. Lindsay has also found records of the operation on dogs.
He has 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.
The pioneer of new surgery is highly active for ethical and financial reasons. Surgeons could risk losing their license by performing an unproven operation, especially if complications occurred. Insurance companies generally do not reimburse patients for non-standard procedures.
As many doctors in this specialized field know each other, Lindsey was careful when he put the idea that could save his life.
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 medulla
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 medicines.
Coglane, his champion, lived long enough to see Lindsey's remarkable restoration. He died in 2015.
He now helps other patients with rare diseases
On the contrary, Lindsay has found a way to save.
But his mother is too delicate to be moved to another facility, not to mention that. they endure the operation her son has introduced. 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 / she plans to finish are now married with primary school children.
"You can not conquer the past," Lindsay said.
Today, he still lives in his home in his childhood in St. Luis. 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," he said, "and now I have to help people."