A mysterious illness had left college student Doug Lindsay debilitated for years, limiting his mobility and forcing him to quit school. Yet when medical experts remained stumped, it only serve to strengthen his resolve to try to find an explanation. While still barely able to move, he set out to find some answers, and would ultimately end up shocking the medical world.
1. On The Right Track
It was the beginning of 21-year-old Doug Lindsay’s senior year of college. He had just finished a summer program researching biochemistry at the University of Kansas. It was 1999, and Doug had come back to his own school, a Jesuit college called Rockhurst University in Kansas City, Missouri.
The biology major’s first day of classes, which he figured would be the last one of his undergraduate career, went off without a hitch. But when classes were done for the day and he returned home for the evening, something happened to Doug that would ultimately dictate the course of the rest of his life.
2. A Sudden Shift
It seemed to come out of nowhere. Before university, during his time as a student at De Smet Jesuit High School, Doug had been very physically active and athletic, running track for sport. Over the past few years of college, his health had been relatively normal. Yet after his first day of classes, he got home and felt the room begin to spin.
The disorienting sensation picked up in intensity. Helpless to stop this bizarre episode, the sudden and mysterious symptoms got worse and worse. At last, his heart racing and terribly dizzy, Doug’s legs buckled and he outright collapsed onto the table of his dining room.
3. Declining Health
To lose control of one’s functions and collapse would have been frightening for anyone. But if he had thought this strange turn of events affecting his health was to be a fluke occurrence, Doug was about to proven gravely wrong. The dizzy spells returned to him repeatedly, and they left him feeling incredibly weak.
The mysterious illness left his muscles constantly aching and cramping, and his heartbeat raced so fast that, in Doug’s own words, you could put a piece of paper on his chest and it would begin to flutter. And it was about to take a turn for the worse.
4. Losing Functions
As Doug’s physical condition continued to deteriorate, small actions and movements which he had once taken for granted became nearly impossible. Even menial tasks such as changing a light bulb meant he had to take a rest afterwards, just because lifting his limbs like that was so challenging.
It even got to the point where walking was difficult. He could go but 50 paces at a time before needing to sit down and recover from the exertion. After trying to walk farther, within a matter of minutes, he found he wasn’t able to stand. And yet, although his condition was baffling, it was not entirely unexpected.
5. A Family Tragedy
For as long as Doug could remember, his mother had been sick. When Doug was an 18-month-old baby, a mysterious illness had left her tragically incapacitated. Sadly, she couldn’t even lift her own child. When Doug had reached the age of four, his mom couldn’t walk anymore.
6. Time Of Reckoning
All throughout his teenage years, Doug had watched his family members suffer from a nameless condition that appeared to be genetically transmitted. As he grew up, he silently wondered when his day would come, and whether their mysterious illness would affect him as well.
Now, in 1999, he had the answer: his body had caught up with him. He called his mom, instantly understanding what was happening to him, as he had seen similar symptoms before and was all too familiar with them. He told his mother he knew he would have to drop out of school. They realized he had not escaped their “family curse,” but his story was far from over.
7. Total Mystery
Doctors told Doug he might have mono, but after months confined to his own bed, for upwards of 22 hours a day, he wasn’t getting better. He could only get up to try and feed himself, or to use the bathroom. The fact that doctors couldn’t pinpoint the source of his condition was not a surprise either: his mother had also not been given a name for her condition, though she knew it had to do with her thyroid.
She was too ill to travel to see a specialist and receive care at the Mayo Clinic. Doug had seen what the apparently inherent condition had done to his mother and aunt. He was determined to try to find out how to change his fate.
8. Hopes Dashed
He had dropped out of school just one year shy of completing his biology degree. Doug’s dreams of becoming a professor of biochemistry, or even his fantasy of writing for The Simpsons were, at this point, at best a mirage. No treatment seemed to be taking effect, and he was restricted to the hospital bed in his living room.
It would have been understandable if he had slipped into a deep depression. But it dawned on Doug that despite what one might think, it was all in his own hands to figure out a way to survive. The key fell almost literally into those same hands.
9. Starting To Study
Before the onset of his mysterious illness, Doug had found an old endocrinology textbook, left haphazardly by a trash can. He had once used it to try and gain better insight into his mother’s health condition, and now, he used his time spent on bedrest to pore over its 2,200 pages and understand what was happening to his own body.
His mom had been told she had a thyroid problem, but Doug found something interesting in the book: a passage of text described how an adrenal disorder could masquerade as a thyroid disorder. Had the doctors all been wrong about what part of the body had gone haywire?
10. New Category
The body’s adrenal glands are located just over the kidneys and produce vital hormones that help the body with important functions. So Doug, the former biology major, studied these glands at length. He gathered more and more old medical textbooks. With the immense wealth of knowledge he was able to gather over months and even years of study, Doug created a hypothesis.
He theorized that there was an entire field of disorders affecting the autonomic nervous system, that fell through the cracks, defying the categories used by neurologists and endocrinologists. He pushed forward with his research — and it was time to level up, take his conclusions, and put a plan into action.
11. Doug’s Theory
The autonomic nervous system governs the body’s digestion, metabolism, heart rate, and blood pressure, and so a disorder of the system was bound to attack those functions. Doug’s theory was unheard of. Nobody in the scientific community had considered that his mysterious illness could be connected to his autonomic nervous system, yet still remained without a scientific category of its own.
Since when had a patient suffering from an illness produced and pushed forward a theory that medical experts hadn’t heard of? Whether or not they were ready to hear from him, Doug was about to make waves in the medical world.
12. Upgrading The Quest
Doug saved up his money and bought a computer, which was delivered to him by one of his former college roommates. Now, he could upgrade his search from textbooks to the World Wide Web. Through his medical research, Doug landed upon the website for the National Dysautonomia Research Foundation.
It made him incredibly glad. He felt encouraged to see there was a foundation that existed for the purpose of uncovering more about the mysterious condition that was crippling him and his family. Perhaps they could shed more light on what had taken control over his life and left him imprisoned in his bed.
13. Stumbling Block
Doug contacted the foundation, asking for further literature that might help him better understand the most cutting-edge findings in the field of medical research about his and his family’s condition. The possibility was exhilarating. This was the farthest he had been able to get through the course of his research, but he stumbled into a major setback.
Despite having found an organization dedicated to conditions similar to his, none of the medical anomalies the organization researched matched his own symptoms. He was back on the drawing board. But Doug wasn’t about to call it quits. He would have to continue forging his own path — and the opportunity was about to present itself.
14. Reaching Out
In order to best pinpoint his condition’s cause, Doug realized that although he had made it this far on his own merits and with his own scientific findings, it was time to get help of a different kind. He had to find a partner from within the scientific community to help him try and solve the case of his mysterious illness.
He’d passed through any number of doctors and other assorted medical specialists, and had dived head first into his own research. But to get somewhere, he would now have to find a scientific researcher rather than a doctor. Where would he go about finding one such individual?
15. Taking The Plunge
First, Doug had to make inroads, and he placed himself front and center into the heart of the medical research world. In 2002, after three years suffering from his mysterious illness, he went to a meeting of the American Autonomic Society in Hilton Head, South Carolina.
Getting there from St. Louis was a challenge, but he was fortunate enough to have friends who would travel with him to prop him up. He purchased a whole row of seats on the flights so he could lay across them, supported by his friends. But he wasn’t an expert, nor did he even have a degree. How would they receive him?
16. At The Conference
Doug rolled into the American Autonomic Society conference in a wheelchair. He had dressed himself in suit and tie, and for anyone who asked, he introduced himself as a scientist, Jesuit-trained — which wasn’t a lie. As he interacted with the scholars present, he acted as though he were a graduate student in their field, although he was in fact a patient.
Doug was a junior scientist whose own body happened to be the basis of their field of work. He explained his findings by delivering a presentation, and said he felt that there was a specific drug that could aid him. And his words had not fallen on deaf ears. Someone was intrigued.
17. Finding His Ally
Thankfully, Doug was well-received at the conference. He was pleased to see that the scholars were willing to listen and not condescend to him. Even though he wasn’t a grad student, they understood how there was no way he could have gone to grad school, confined to his own home, and they waived that requirement for entering the dialogue with them.
While he felt he had returned from the conference empty-handed, 18 months later, Doug’s path crossed that of Dr. H. Cecil Coghlan from the University of Alabama-Birmingham. He felt Doug had struck a nerve, and he was on his side. It was time to link up forces.
18. An Unorthodox Proposal
Early in 2004, it was time to meet up with Dr. Coghlan in Alabama. Once again, Doug relied on his generous friends: one of them took a rented SUV, put a mattress for Doug in the backseat, and took him for the 500 mile drive from St. Louis to Birmingham. According to Doug’s hunch, his body was producing too much adrenaline.
He had heard about a USFDA-approved drug called levophed, which could counter the symptoms. He asked Dr. Coghlan to do something unprecedented: to experiment on his system with the drug, and turn it into a drip he could live on. How would his body react?
19. The Experiment
Dr. Coghlan used his medical expertise to modify the medication for Doug. Sure enough, after being on a constant IV-drip all day every day, Doug’s system slowly but surely began to respond. He could get up just a bit more, and the medication finally allowed him to be slightly more active around the house.
He was even able to attend several weddings and a high school reunion, rather than just the usual rounds of doctors’ visits. And while he still had not regained full mobility, he refused to give up just yet. He was on the cusp of an unbelievable discovery.
20. Identifying The Source
Doug’s mysterious illness had left him immobilized for most of his 20s. But his research would be his own savior: once again, he offered a brilliant theory. Scans of his adrenal glands showed there was no adrenal tumor causing his excess adrenaline. Doug thought: what if something was acting like a tumor, even if it wasn’t?
The answer came in 2006. On a fourth scan of his adrenals, they glowed strangely — and Dr. Coghlan was elated, declaring they had found what was ailing him! The medullas, the inside of his adrenals, were inflamed, acting as tumors would. Now, how would they solve the problem?
21. How To Operate
The diagnosis had a name: bilateral adrenal medullary hyperplasia. There were only 32 recorded cases of this condition ever, according to Doug’s own research. Everyone was learning about the condition as Doug pushed forward with his learning, as though he was writing his own textbook, despite being a college dropout.
Doug wanted to know what surgery could help save him, but he discovered that past studies on cats and dogs didn’t explain how the surgery was performed. Then, at long last, he found an article from 1923, written by Nobel Prize winning Argentinean physiologist Bernardo Houssay, giving instructions! He had come this far through his own discoveries, but he would need one last helping hand.
22. Almost There
He had found a possible cure, and he had even drawn up a document 363 pages long that explored the possibility of the first surgery to remove the medulla from a human adrenal gland. Of course, Doug couldn’t do this alone. He needed a surgeon willing to carry out the procedure, and that was incredibly risky.
It hadn’t been tried, and was essentially an experiment. Botching it would mean draining money, destroying the surgeon’s ethics and reputation, and risking Doug’s life. He finally found the right surgeon at the University of Alabama-Birmingham — and in September 2010, returned there for the procedure. It was now or never.
23. A Medical Miracle
In Alabama, the surgeon successfully managed to take out the medulla from one of Doug’s adrenals. A fellow surgeon described the procedure as being like taking the peanut butter out of a peanut butter and jelly sandwich — incredibly precarious and difficult. Yet the effects were miraculous: just three weeks later, Doug could sit unaided for three hours.
On Christmas Eve, he walked, not just out of the house, but a mile, in the snow. In a local church he had known from his childhood, he stood in the back during Midnight Mass, his face full of tears. He was certain it was a miracle. But that wasn’t all that would change for him.
24. Triumphant Holiday
In 2012, at the Barnes-Jewish Hospital by Washington University in St. Louis, Doug underwent the second surgery to take the harmful medulla, acting like a tumor, out of his second adrenal gland. Freed of much of the grip his mysterious illness had kept him in for over a decade, his health continued to improve drastically.
A year later, he was able to fly, and took the opportunity to vacation with friends in the Bahamas. And while his motor skills still found it difficult to deal with a hammock, he could at long last triumphantly stroll on the beach. So what’s next for the scholar?
25. Giving Back
Sadly, Doug’s mother was too frail to undergo a similar surgery, and passed away in 2016. Dr. Coghlan, who had given him hope when he had but a spark, lived long enough to see the miraculous treatment work, passing away in 2015. That year, Doug walked the stage at Rockhurst, completing his bachelor’s degree, 16 years after he should have.
While he’s still on medications and his health is far from perfect, his journey to recovery has been nothing short of miraculous, spurred by the power of his own mind and determination. He once had wanted to be a biology professor — now he’s a medical consultant, and that’s not too far off. He wants to use his knowledge to help others however he can.
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