A mysterious illness left college student Doug Lindsay debilitated for years. He couldn’t move – at least not enough to finish school, forcing him to quit. At the time, his autonomic nervous system disorder left medical experts baffled. They just couldn’t figure out what Doug was suffering from. Their confusion and lack of consensus only fueled Doug’s desire to figure out what was going on with his body.
His disorder – which attacks your heart rate, blood pressure, metabolism, and digestion – left him bedridden for 11 years. He decided to find an explanation, with or without help from the experts. While he was barely able to move, Doug was determined to find some answers, and he ultimately wound up shocking the medical world. It took him many years, but Doug finally found out what was wrong with him. He even invented the very surgery that ended up saving his life. How many of us can say that about ourselves?
Doug Lindsay was born and raised in Missouri. As it turns out, the boy came from a family in which his illness was hereditary. He recalls his mother and aunt having the same illness as he would eventually get. At the time, it was deemed incurable because the specifics were vague, and the illness was unknown.
When Doug was 18 months old, his mother could no longer carry him. When he turned four, his mother, who was already bedridden by then, managed to save her son from choking on his food. But that day was sadly one of the few times that she wasn’t physically limited and, in fact, able to move. For the rest of his life, Doug would try to find the cause of her problems.
After many tests, his mother chalked it up to a severe thyroid issue. But she wasn’t physically able to go to the Mayo Clinic, the highly regarded clinic for physicians in Rochester, Minnesota. Then, before he reached his teen years, he watched as his aunt developed the very same illness. It got to the point that she couldn’t even tie her own shoes anymore.
The only thing the family knew, after hearing from medical professionals, was that this was a disorder of the nervous system. What exactly was the disorder? They didn’t know. It was up to Doug, who was obviously fearful of developing the disease himself, to take the next steps in solving the mystery. Ultimately, Doug himself became an experiment in the process.
In 1999, 21-year-old Doug started his senior year at Rockhurst University in Kansas City, Missouri, and was looking forward to completing his biology degree. He had just finished a summer program where he researched biochemistry at the University of Kansas. The biology major’s first day back went smoothly, that is until he got home that evening.
At home, Doug experienced something that would ultimately dictate the rest of his life. He remembers feeling his heartbeat spike out of control, and he got very dizzy. The room was spinning, and the disorienting sensation only picked up in intensity. Helpless to stop this episode, Doug was hoping this sudden and mysterious attack would abruptly end in the same way that it suddenly appeared.
But it only got worse and worse. His legs buckled, and he collapsed onto the table of his dining room. The illness came out of nowhere. Before college, during his years in high school, Doug was very active and athletic, running track for sport. Even over the first few years of college, his health was relatively normal and steady.
While he did have his family illness on the back of his mind for his entire life, the illness nonetheless came at a very unexpected moment in his life. Doug, who feared this day would come, knew that he had to tell his mother. On the phone with his mother, Doug told her that he has to drop out of college…
Doug’s dizzy spells returned frequently, leaving him feeling incredibly weak. He ended up having to tell his mom that he won’t be able to finish college because he can’t walk for more than 50 feet before he collapses. Sooner than later, he was bedridden for an average of 22 hours each day. Devastating, yes. But Doug didn’t let his illness stop him from doing what he wanted.
To lose control of your functions and collapse is frightening enough for anyone. But Doug’s family illness served as a kind of preparation for the very likely event that he would also get the disease. The mysterious illness clearly caught up with him, and it meant that his muscles were constantly aching and cramping, and his heartbeat would race incredibly fast.
In Doug’s own words, you could place a piece of paper on his chest, and you would see it flutter. Unfortunately, the disease was about to take a turn for the worse. As his physical condition continued to deteriorate, the small movements he had once taken for granted suddenly became nearly impossible. Even something as simple as changing a light bulb meant that he had to rest afterward.
Simply lifting his limbs became a challenging activity. And walking was now out of the question. He could make it to about 50 paces before needing to sit down and recover. And if he tried to walk further, after a minute or two, he found that he wasn’t even able to stand.
When he spoke to his mother on the phone that day, telling her that he has no choice but to drop out of college, his mother couldn’t say that she was surprised. They both realized right then that her dear son had not escaped their “family curse.” But, by no means whatsoever, did this mean that Doug’s story was over.
In fact, it had just begun. At first, doctors told Doug that he might have mononucleosis. But, after months of being confined to his bed, he wasn’t getting better. If he did have mono, time passing would coincide with his recovery. But, sadly, that wasn’t the case here. His doctors were seeing that Doug could only get up to try and feed himself or use the bathroom.
The fact that the doctors couldn’t pinpoint the source of his illness came as no surprise – to him nor his mother. For her whole life, she was given diagnosis after diagnosis. In the end, she never got a name for the disease. Doug dropped out of school, just as he said he would.
His dreams of becoming a professor of biochemistry, and his far fantasy of being a writer for The Simpsons, were, at this point, at best, a vision. No treatments were working, and he was left to spend his days in hospital beds or in his living room. Most people would spiral into a depression, but Doug had hope. The way he saw it – it was in his hands to figure out a way to survive.
Doug went on a journey of medical discovery, and it started by visiting all kinds of doctors who would continuously tell him that they didn’t know what was wrong with him. Even worse – that they couldn’t help. These weren’t just medical students or general practitioners – they were expert doctors in the fields of neurology, internal medicine, and endocrinology (the branch of physiology and medicine concerned with endocrine glands and hormones).
Endocrinology proved to be the most important area of medicine in Doug’s case. The endocrine system deals glands in the body that secrete hormones to organs like the liver, kidney, and heart. Those hormones help us sleep, grow, reproduce, and more. What was also an important part of Doug and his family’s story was the fact that his mother knew that the illness had “something” to do with the thyroid gland.
Before his mysterious illness reared its ugly head, Doug found an old endocrinology textbook that someone left haphazardly next to a trash can. A curious young man, he used it to try and learn something about his mother’s condition. Now that he was in bed for almost the entire day, he was doing more than just browsing the pages.
He spent his time spent on bed rest to read its 2,200 pages and essentially understand what was happening to his (and his mother’s) body. While his mother was told that she had a “thyroid problem,” Doug found something particularly interesting in the book. He found a passage that described how an adrenal disorder could trick us into thinking it was actually a thyroid disorder.
Had all those doctors been wrong about what part of the body was spinning out of control? Doug was determined to find out. The body’s adrenal glands, by the way, are located above the kidneys and produce vital hormones that keep the body functioning properly. So the former biology major started to study these glands at length.
He then started to read more and more old medical textbooks. His aim was simple: figure out what the problem was. The already bright and knowledgeable man became an expert of sorts during the months and years being bedridden. The immense wealth of knowledge that he gained during this period led Doug to come up with his own hypothesis.
Doug believed that there was an entire field of diseases affecting the autonomic nervous system that somehow fell through the cracks, basically challenging the current categories used by neurologists and endocrinologists. Doug pushed forward with his own research, and soon enough, it came time to take his conclusions and put them into action.
The autonomic nervous system governs the body’s digestion, metabolism, heart rate, and blood pressure. So, a disorder of such a system would, in effect, attack those functions. Doug’s theory – that his illness was actually a matter of the autonomic nervous system – was unheard of. What else was unheard of? A patient presenting his own theory to medical experts. Doug Lindsay was about to make waves in the medical world…
Doug bought a computer (which was delivered to him by a former college roommate) so that he could upgrade his search from old school textbooks to the World Wide Web. Through his own medical research, Doug found the website for the National Dysautonomia Research Foundation. He was glad to see that there a foundation existed for the purpose of uncovering more information about this mysterious condition that was literally crippling him and his family.
Doug finally found a place that could help him, and so he contacted the foundation, asking them for further literature could help him find the most cutting-edge findings regarding his and his family’s condition. The possibility was exciting, of course. This was the farthest he had gone through the course of his research.
But, there was a major setback that Doug had to get over first. Despite finding an organization that was dedicated to conditions similar to his, none of the anomalies the organization researched happened to match his own symptoms. But Doug wasn’t a quitter. But an opportunity was about to present itself.
Doug realized that although he made it this far on his own with his own findings, it was time to get help from an outside source. He needed to find a partner in the scientific community to help him try and solve this mystery. To go further, he would need a scientific researcher rather than an actual doctor. But where would you find such an individual?
First, Doug placed himself in the heart of the medical research world. In 2002, after meticulously studying for three years, he went to a conference at the American Autonomic Society in Hilton Head, South Carolina. He didn’t go alone; his friends sat in the front row to show their support and courage as Doug made a presentation, speaking about all of the research he has been doing.
Getting there from St. Louis wasn’t easy, but he was fortunate enough to have his friends there to help him. But Doug was aware that he wasn’t an expert. Heck, he didn’t even graduate college. He had his fears of how he would be received at such a conference filled with researchers, scientists, and doctors from around the world.
The conference was focused on nervous system disorders and was a pretty big deal. Doug rolled into the American Autonomic Society’s annual conference in a wheelchair. He was dressed in a suit and tie, and as he interacted with the scholars there, he acted as though he were a fellow graduate student in their field. Little did they know that he was actually a patient.
The presentation Doug gave about his research didn’t lead to any condescending attitudes (despite his worries). The scholars didn’t write him off just because he wasn’t a college grad. Almost all of them trusted his hypothesis and were open to begin the process of curing this strange and debilitating illness.
Doug explained his findings by delivering a proper presentation, stating his belief that he knew there would be a specific drug that could help him. And his words didn’t fall on deaf ears. Someone was intrigued. The scientific partner that Doug was looking for turned out to be Dr. H. Cecil Coghlan, a medical professor who taught at the University of Alabama-Birmingham.
Eighteen months after his presentation, Doug crossed paths with Dr. Coghlan, who said he thought the young man was on to something. That’s when they decided to get to work. Doug, something of a junior scientist, used his own body as the basis of their field of work.
Early in 2004, it came time to meet up with Dr. Coghlan in Alabama. Again, Doug had to rely on his generous friends. One of his friends rented an SUV, put a mattress in the backseat, and took Doug on the 500-mile drive from St. Louis to Birmingham. After heading to Birmingham, he learned something about his body.
He thought that his body was producing too much adrenaline. An excess of the hormone can cause your body to give out. He took his new hypothesis to Dr. Coghlan, proposing to use his own body as an experiment. He suggested that he take the drug Levophed, which causes the body’s adrenaline to decrease after an injection.
The drug’s main purpose is to raise blood pressure for very sick patients. Doug was basically changing the use of and reason for the drug, which meant that he was being put on an IV drip (because he was bedridden). This drug trial lasted for a few years, and during that time, he found himself being able to leave his bed for short bouts.
Doug was finally able to go to reunions and weddings, but he was required to take the drip 24/7. But that wasn’t the “cure” they were looking for. Still very curious, Dr. Coghlan thought it might be a tumor in Doug’s adrenal gland. The tests, however, were negative.
Doug’s mysterious illness left him immobilized for most of his 20s. Once again, Doug offered another theory. Scans of his adrenal glands revealed that there was no adrenal tumor causing an excess of adrenaline. So, Doug thought: what if there was something that was acting as a tumor? The answer Doug was looking for came in 2006.
After getting the fourth scan for any possible adrenal tumors, doctors said the glands indeed looked irregular. His adrenals glowed strangely in the imaging. Dr. Coghlan was ecstatic, declaring they finally found what was ailing him! Dr. Coghlan then told him that it wasn’t a tumor – that Doug was right! Something really was masquerading as the adrenal gland after all.
Finally, the big ugly monster was given a name. The diagnosis: bilateral adrenal medullary hyperplasia. To get technical for a moment: the medullas, inside of Doug’s adrenals, were inflamed, acting as tumors would. Doug was right all along – there was something masquerading in his body as something else.
Yes, it was the adrenal gland that was the problem, and it was the adrenaline that his body was producing that created the illness. The adrenal gland was producing way too much adrenaline, making it seem like the glands were tumors. As it turns out, there had been only 32 recorded cases of this condition… ever.
Doug and Coghlan now stood behind their diagnosis and decided together on what to do next.
Doug wanted to know which surgery could help him. Doug proposed cutting off his medulla, which was completely unheard of as no one has ever done that before. But the limited information, involving past studies on cats and dogs, didn’t really explain how the surgery was performed. Then, Doug found an article from 1923, written by Nobel Prize-winning Argentinean physiologist Bernardo Houssay.
And the good news – he gave instructions on how to do the surgery. “They don’t really write textbooks based on that. We were all learning with Doug as we went along,” Dr. Chris Bauer, Lindsay’s personal physician, said. Doug was on his way to finding a possible cure.
Doug wrote a 363-page document exploring the possibility of the world’s first surgery to remove the medulla from a human adrenal gland. He found helpful excerpts of a Georgia State University scientist from 1980, involving examples of cutting out a rat’s adrenal gland to take out the medulla. The year 2008 was filled with the problem of finding the right surgeon.
Unlike most of his research that Doug did all by himself, surgery was going to involve the work of someone else. He needed a surgeon who was willing to carry out the procedure. That alone was incredibly risky. Apparently, the surgery had been attempted, but it was performed as an experiment. By 2010, he found a willing surgeon.
Botching the surgery would mean a few things: draining money, ruining the surgeon’s ethics and reputation, and, most importantly, risking Doug’s life. But with time, patience, and perseverance, Doug finally found the right surgeon. The surgeon was from the University of Alabama-Birmingham, and in September 2010, Doug returned there for the procedure.
In his eyes, it was now or never. In the end, the surgeon successfully managed to take out the medulla from Doug’s adrenals. Doug Lindsay became the first human experiment and the first to successfully have his medulla removed, on record. For those who are interested, another surgeon described the procedure and described it simply like taking the peanut butter out of a peanut butter and jelly sandwich — it was incredibly risky and difficult.
Just three weeks later, Doug could already feel the effects. And they were miraculous: he could sit unaided for three hours and even walk a mile! On Christmas Eve no less, Doug walked a mile in the snow. Inside a local church he knew from his childhood, he stood during Midnight Mass, his face full of tears (and mine as I write this).
But his road to recovery wasn’t over yet. He still needed another surgery. In 2012 at Washington University, he underwent another surgery to completely cure him of his disorder. One of the medullas that they removed wasn’t enough; they needed to remove the other medulla, which was still bad. With both medullas removed, he would finally be able to live normally again.
Freed from the grip that his mysterious illness had on him in for over a decade, Doug’s health continued to improve dramatically. Within a year, he was able to fly and went on a vacation with his friends in the Bahamas. And while his motor skills still prevented him from fully enjoying a hammock, he was able to triumphantly stroll the beach.
After getting off some of his medication in 2014, he was no longer dependent on meds for his disorder. I know what you’re thinking – what about Doug’s mother? Shouldn’t she also get the miraculous surgery? Sadly, she was too frail to undergo surgery and passed away in 2016. Dr. Coghlan, who witnessed Doug’s journey, also passed away, but in 2015.
In 2015, Doug got to walk the stage at Rockhurst after finally completing his bachelor’s degree, 16 years after he originally planned to. While he is still on medications and his health is not perfect, his road to recovery has been nothing short of miraculous. And the best part – aside from being able to live normally – is that he managed to make it happen with his own mind and determination.
Tragically, Doug’s mother didn’t get to see him walk across that stage. Doug is now 41 years old and essentially starting his life. Many of his friends are now married with kids already in grade school. As Doug put it: “You can’t recapture the past.” Today, he still lives in his childhood home in St. Louis.
He needs to take nine medications each day, but he has his life back. The man who once wanted to be a biology professor is now a medical consultant. He wants to use his knowledge to help others. Aside from being a personal medical consultant for those with rare diseases, he’s also a speaker.
“I couldn’t be an assistant manager at Trader Joe’s. I don’t have the physical ability for that,” he said. “But I can travel and give speeches and go for walks. And I can try to change the world.” He now regularly speaks at healthcare conferences. “I got help from people, and now I have to help people.”
If you’re a fan of TED, you can see him tell his story and the disorder itself on the TED stage. Doug also goes to medical schools and is apparently working on a case study that is supposed to be published in the British Medical Journal. Remember the quote from his physician? That his illness wasn’t being taught in books?
Well, it goes to show that even those who have mastered almost all there is to know about the human body still have a thing or two to learn. Amazingly, Doug has doctors coming to him to locate and find diseases and disorders that aren’t known to them. “I’m a full professor at Stanford, and I don’t know these answers,” said Dr. Lawrence Chu.
Chu found himself leaning on Doug Lindsay when it came to a rare disease patient that came to him. “Doug was the expert consultant.” Doug has spoken at Stanford and Harvard, among other prestigious schools. With his gift for solving difficult problems, Doug hopes to help steer patients with hard-to-treat diseases on a new path toward recovery and wholeness in general.
“I got help from people,” he said, “and now I have to help people.” Beyond his physical triumphs are the victories such as these. It only took him 16 years to figure out his own anomaly, but better late than never, right? All the power to him. If only his mother and aunt were around to witness it.