Man researched and spearheaded surgery to cure his rare disorder

Author Ed Anderson

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Doug Lindsay spearheaded research into his own diagnosisAPB Speakers

In 1999, his senior year at Rockhurst College in Kansas City, Doug Lindsay became very ill. After returning home from classes on the first day, he started to feel dizzy. He sat at the dining room table and passed out.

Progressively things got worse for the young man. The dizzy spells were frequent; his heart raced from even the simplest tasks. His body hurt from standing for just a few minutes, and he could only take about 50 steps before needing to sit down.

It was the same symptoms that had made his mother bedridden. And doctors could not figure out what was going on with the young man or his mom.

Lindsay's dreams of becoming a biochemistry professor or a writer for The Simpsons started to evaporate. He was confined to a hospital bed in the living room of his house for the next 11 years. Doctors and other medical staff worked with him, trying to figure out what was wrong with the young man and why he and his mother could not move.

They were also puzzled over why none of the treatments they tried worked. Every medical theory they came up with proved to be wrong. There was nothing they could do to help the young man or his mother.

One specialist told him that there was nothing wrong with him. It was then suggested that Lindsay see a psychiatrist.

After that advice came, Lindsay decided it was up to him to find out what was going on with his body. And he would need to find a way to treat it.

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Lindsay has come along way from 1999, even giving a Ted Talk in 2018Doug Lindsay

Trial And Error

Lindsay began reading medical textbooks and journals, looking for any lead on what could be ailing him. Instead of finding the answers he wanted, he learned that he was one of the millions of Americans who have a rare disorder that doesn't have a name or treatment.

An answer came from a textbook that he had picked up from a trash can back when he was still in college. In this book, he found a passage that became the key to figuring out the condition and finding the cure.

One passage that stood out to him stated that adrenal disorders could mirror the symptoms of thyroid disorders.

The adrenal glands sit on top of both kidneys and are triangle-shaped. Lindsay zeroed in on the fact that many autonomic nervous-system disorders are unknown. His theory took shape, and the research solidified his belief that he was on the right track.

After getting some money together, he bought a computer. He asked a former college roommate to bring it to him. Once it was in his possession, Lindsay began looking for more information to support his theory.

He found the website for the National Dysautonomic Research Foundation. The fact that there was a foundation with the same basic theory as what he was working on was exciting. Lindsay sent an email asking for emerging research within the field.

None of it matched his symptoms. But he wasn't about to give up.

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Adrenal glands sit on top of the kidneysj4p4n via OpenClipArt

Breakthrough Ally

Newly empowered with the belief that he was right, Lindsay decided that he needed to work with someone. He decided that a typical doctor wouldn't be the right partner for him. Instead, he wanted a physician who was curious enough to take on a rare case and discuss it at length with him.

To find the person he would work with, he traveled to Hilton Head, South Carolina, for the American Autonomic Society's annual conference in 2002. He was a featured speaker and thought it was the ideal way to find someone to work with.

To be comfortable on the plane, he bought a whole row of seats so that he could lay down during the flight.

Lindsay presented himself as a colleague of the doctors and scientists in the audience rather than a patient hoping that someone would take him seriously.

They did. Even though quite a few people who watched the speech disagreed with his theory, Lindsay said he knew that there would be opposition to what he said because he didn't have a bachelor's degree. And many of the people in the audience went to very prestigious schools, where they learned that what was being suggested was wrong.

After Lindsay finished, Dr. H. Cecil Coghlan, a medical professor at the University of Alabama-Birmingham, approached him. There was merit to what he said, and the two men began working together.

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Lindsay invented the surgery that led to his recoveryYouTube Screenshot

Treatments Ahead

With a new ally on his team, Lindsay began working harder to find a possible treatment.

He believed that his body was producing too much adrenaline. A drug, Levophed, was used to raise blood pressure rates. The medicine is an injection of noradrenaline, which counters the symptoms created by excess adrenaline.

Nobody else had used the drug to reduce adrenaline.

In early 2004, Lindsay enlisted his friend to rent an SUV and put a mattress in the back for him. They drove 500 miles to Birmingham. Coghlan agreed to repurpose Levophed and have the young man hooked up to a drip of the drug for the next six years.

The experiment worked. Lindsay was able to be mobile for short periods of time.

Even with the improvement, he was still mostly confined to the house.

They wondered why he was still so ill. His body was producing too much adrenaline, but there was no indication as to why that was happening.

Coghlan suggested there was an adrenal tumor, but three scans showed there was nothing on the adrenal glands. It seemed they were back at square one.

Until Lindsay found a new likely culprit.

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After being bedridden for 11 years, Lindsay underwent the first surgery in 2010Doug Lindsay

Diagnosis Finally

The new theory said that there was something on the adrenal gland that acted like a tumor. Coghlan ordered another scan, this time; it showed his adrenal glands glowing brightly. It confirmed the new theory.

Coghlan called Lindsay and told him that there was a diagnosis. It was a condition called bilateral adrenal medullary hyperplasia—a condition where the adrenal glands are engorged and produce too much adrenaline.

Other experts in the field doubted this diagnosis. There were only 32 cases of bilateral adrenal medullary hyperplasia recorded before this. But Coghlan and Lindsay pushed on. They were finding things and were close to finding a treatment for the young man and his mother.

Lindsay went back to researching and found a possible surgery. It came from a 1980 study done by a scientist at Georgia State University. In that case, the researchers used a razor blade to slice the adrenal glands of a rat and then squeeze it, so the medulla comes out like a pimple.

Renowned Harvard professor Walter Bradford Cannon performed the same surgery on cats in 1926. There are also reports that the procedure was done on dogs as well.

With this new information in hand, Lindsay built a 363 page PDF document. His goal was to find a surgeon willing to perform the surgery on a human, which had never been done before.

It took some time, but eventually, he found a surgeon at the University of Alabama-Birmingham to perform the new surgery. Lindsay underwent surgery in September 2010, 11 years after he first experienced symptoms.

The surgery was successful, but his progress was slow. In 2012, he underwent the procedure again, this time at Washington University in St. Louis.

By 2013, Lindsay was strong enough to fly to the Bahamas. The following year, he was starting to come off his meds.

Coghlan died in 2015, just after seeing Lindsay's turn around.

Lindsay's mother died in 2016, never benefiting from the surgery her son spearheaded.

The man in the center of the story, Doug Lindsay, is now a medical consultant and public speaker. His Ted Talk has been viewed more than 50,000 times.

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Ed Anderson is a true crime and gossip writer from Detroit, Michigan. Ed is the author of several true crime books, most recently Cold Cases From Around The World.

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