It’s 1999 in Kansas City, Missouri, and Doug Lindsay is a college student embarking on his senior year. But after just one day of classes, he collapses – the start of a mysterious illness that will change the course of his life for good. And for the next 11 years, he struggles to overcome a disorder that nobody can explain.
Before long, Lindsay’s mysterious affliction had taken away his ability to walk or stand for more than a short period of time. In fact, it derailed his entire adult life. Rendered bedridden, he depended on doctors to find a cure – but none of them had any idea what was wrong.
For more than a decade, Lindsay puzzled the medical professionals that tried to get to the bottom of his condition. Then, he decided to turn sleuth on his own body. Eventually, his own research and determination would put him on the road to recovery – and here we tell his incredible story.
Born in Texas, Lindsay spent time with his family in Tennessee before settling in the Missouri city of St. Louis. And as a child, he showed no signs of the debilitating illness that would come to rule his life. His mother Barbara told the Riverfront Times in 2010, “[Lindsay] was walking by the age of ten months and couldn’t wait to get out. His first words were ‘shoes on,’ because he knew that meant he was leaving!”
Then as the years passed, Lindsay grew into a young man with varied interests. Along with a love for writing and music, he soon developed a reputation as an incredible dancer too. And according to those who knew him, he particularly enjoyed the thrill associated with fast cars. All in all, the young man seemed to have a life of possibilities before him.
When Lindsay wasn’t dreaming of becoming a writer for The Simpsons, he talked of pursuing a career in biochemistry. And at first, he seemed on track for a brilliant future. After graduating high school, he traveled to Kansas City, MO, where he began attending the Jesuit college Rockhurst University.
At college, Lindsay continued to win friends and admirers. However, he never lost sight of his goals. And in 1999 the biology major began a summer job at the University of Kansas biochemistry department in Lawrence, MO. But in June that year while he was there, the mysterious illness reared its head for the first time.
By that time, Lindsay was 20 years old. And at first, he began suffering from a fever and mysterious aches. Moreover, his days became a battle against extreme exhaustion – while he spent his nights drenched in sweat. Eventually, he returned to St. Louis to consult his doctor about the problem.
At first, Lindsay’s doctor believed that the problem was mononucleosis, otherwise known as the kissing disease. And after a brief period of rest, the young man began to feel better. However, once he returned to his job at the University of Kansas, the affliction hit him once more. In fact, his condition meant he had to quit after just three days.
“Walking to and from the lab made me so lightheaded and sick that I had to lie in a lump for an hour in the car before driving back to my room to go lie in a lump there,” Lindsay told the Riverfront Times. And so, he returned to St. Louis once more, hoping to recover from the illness in time to tackle his senior year.
Although Lindsay managed to return to college, it didn’t last long. In fact, he was able to attend classes for just one day before collapsing on the table in his dining room. Defeated, the young man returned home, where his condition only got worse. He explained, “Two weeks after that, it was really bad.”
By this time, Lindsay was experiencing extreme pain – an ordeal that he likened to having “cheese graters” pulled across his tendons. Meanwhile, he would often suffer from sudden bursts of lightheadedness, typically accompanied by an accelerated heartbeat and sweating. In fact, the young man struggled to stand upright for any length of time.
“I was like a doll without strings,” Lindsay recalled. “The room would be spinning. My heart would be pounding. If you put a piece of paper on my chest, you could see it fluttering.” And before long, the active, social young man had become a shadow of his former self. Now, something as simple as taking a shower left him completely exhausted.
But what could have caused such a dramatic change? Well, by this time, Lindsay had become convinced that he did not have mononucleosis. And when a test couldn’t confirm this diagnosis, he then looked into other explanations. But even though he visited a number of specialists, none of them could get to the root of his condition.
According to one specialist, Lindsay was showing symptoms of multiple sclerosis. However, this diagnosis proved incorrect. Meanwhile, others argued that the young man was simply recovering from mononucleosis – a process that can take as long as five years. At a loss, he turned to everything from acupuncture to nutrition, in an attempt to ease his suffering.
By this time, Lindsay was confined to his bed for around 22 hours every day. And as his condition continued to stump doctors, he turned to his past for answers. Apparently, both his mother and his aunt, Jeanne Carmack, had also suffered from mysterious illnesses that first appeared when they were young women.
First, Carmack fell ill, struck with intense fatigue and pain that left her bedridden for years. Eventually, she grew so weak that even tying her shoelaces was an impossible task. Then, her 30-year-old sister began suffering from a similar affliction – a condition that grew so bad she was unable to lift her 18-month-old son.
Within two-and-a-half years, Lindsay’s mother had lost the ability to walk. And by the time that her son was in high school, she was unable to set foot outside her house. Consequently, both sisters consulted a number of doctors. But nobody could tell them exactly what was wrong – beyond a vague diagnosis of a thyroid condition.
As they grew older, the two women’s lives went in very different directions. While Carmack’s condition ultimately subsided to the point where she could live a normal life, Lindsay’s mother required nursing care for the rest of her days. But for Lindsay himself, at just 21 years old, he had no way of knowing which of these fates awaited him. So, he set about finding a solution.
Keen to learn more about his condition, Lindsay began doing his own research. And soon, he began suspecting that the problem lay with his nervous system – specifically his adrenal glands. Sitting above each kidney, these tiny organs produce adrenaline and regulate the body’s response to stress.
Armed with this knowledge, Lindsay decided that it was time to get serious. And so, he produced an academic report detailing his condition that he brought with him to all his appointments. However, the physicians that he saw still did not take his ideas seriously. In fact, one even suggested that a psychiatrist could help.
Eventually, Lindsay was forced to return to his own research. And with the help of the National Dysautonomic Research Foundation, which studies disorders of the nervous system, he began to build a clearer picture of his condition. However, he realized that even this organization was not currently studying any diseases that were exactly like his.
By 2002 Lindsay had decided that he needed a scientific partner to help him with his research. And so, he gathered a group of supportive friends together and made plans to travel to the annual meeting of the American Autonomic Society in South Carolina. Amazingly, he was able to make it there by buying up multiple airline seats and lying prone throughout the flight.
In order to be taken seriously, Lindsay knew that he would have to present himself as credible. And so, he took on the guise of a trained scientist, giving a presentation about his condition while dressed in a suit and tie. And although many of those watching disagreed with his conclusions, he found that he was finally treated with respect.
In fact, Lindsay – who had not even managed to finish his bachelor’s degree – was able to hold his own in front of experienced doctors from institutions such as Harvard University. He told CNN in 2019, “They didn’t patronize me. They treated me like a scientist.” Afterwards, a University of Alabama medical professor named Dr. H. Cecil Coghlan approached the young man.
With a background in dysautonomia, Coghlan was keen to explore Lindsay’s condition. And in 2004 the young man lay in the back of an SUV while a friend drove him 500 miles across the country to Birmingham, AL. There, he undertook something known as the tilt-table test – an assessment that soon confirmed his suspicions.
According to Coghlan, Lindsay was indeed suffering from dysautonomia – a disorder which affects the autonomic nervous system. In layman’s terms, this means that the process by which his body regulates things such as heart rate and stress response was not working properly. And apparently, this could explain why he was experiencing what is known as orthostatic intolerance.
Essentially, orthostatic intolerance means that Lindsay’s body could not handle being in an upright position for extended periods of time. And if forced to do so, he would experience a soaring heart rate alongside plummeting blood pressure. In fact, Coghlan found that his patient began to exhibit these symptoms after just seven minutes.
But even though Coghlan could confirm Lindsay’s dysautonomia, he couldn’t be sure what was causing the condition. However, the young man still suspected that his adrenal glands were to blame. And so, he proposed an experimental treatment plan using an existing drug known as Levophed.
Typically, Levophed – which helps to transmit adrenaline across the body – is used to increase blood pressure in cardiac arrest patients. However, Lindsay believed that he could use the drug to slow down the activity in his adrenal glands. Amazingly, Coghlan agreed, and arranged for his patient to have the substance administered for 24 hours a day via a drip.
Despite the skepticism of Coghlan’s colleagues, Lindsay believed that the treatment worked. And even though he spent the next six years constantly attached to a Levophed drip, he claimed that it eased his condition. He told the Riverfront Times, “I am so much better than I was. It’s been a miracle.”
But while Lindsay was apparently better than he was before, he was far from cured. And even though he could attend a few social events like weddings and a high school reunion, he still remained largely confined to his family home. However, he continued to explore his condition, reserving one of his three beds for academic research.
For Lindsay, the puzzle of the issues surrounding his adrenal glands remained. And even though Coghlan had suspected that a tumor might be to blame, doctors could find nothing in his scans. Then, in 2006 another test showed up an anomaly. And after so many years, the young man finally had a diagnosis.
Apparently, Lindsay’s condition was caused by bilateral adrenal medullary hyperplasia. For its part, this rare disorder affects the middle sections, or medullas, of the adrenal glands. Having grown to an unusual size, they were mimicking the effects of tumors, causing the organs to send out an overdose of adrenaline.
Finally armed with a diagnosis, Lindsay theorized that he needed to remove the medullas completely from his adrenal glands. However, such a surgery had never been done before. Nevertheless, he persevered, determined to develop his own cure. And in 2008, he uncovered a 28-year-old study discussing a similar procedure in rats.
From there, Lindsay was able to trace the experimental procedure all the way back to 1926. That year, Harvard professor Walter Bradford Cannon had successfully extracted the medulla from the adrenal glands of a number of cats. Elsewhere, the determined patient discovered evidence that a similar surgery had been conducted on dogs.
Enthused, Lindsay put together an extensive document proposing himself as a subject for the first human adrenal medulla extraction. But with Coghlan approaching retirement, it took him 18 months to track down a specialist willing to perform the procedure. Eventually, he found one at the same institution where he had first received his diagnosis.
In September 2010 Lindsay arrived at the University of Alabama to undergo the procedure. By cutting into the patient’s adrenal gland, the surgeon was able to scoop out the medulla before sewing the organ back together. And within just three weeks, Lindsay was able to spend hours in an upright position. Two months later, he was strong enough to walk for a whole mile.
Buoyed by the success of the first surgery, Lindsay underwent the same procedure on his second adrenal gland in 2012. And amazingly, he was able to fly all the way to the Bahamas just a year later – seeing the ocean for the first time. Now, he has reduced the amount of medication that he relies on and is able to live something approaching a normal life.
Although he has missed out on many of the milestones that his contemporaries have hit, Lindsay is making up for lost time. And in 2016 he finally graduated from Rockhurst University, his biology degree officially cementing his amazing journey. Today, he works as a medical consultant and a motivational speaker who uses his story to inspire others. He told CNN, “I got help from people – and now I have to help people.”