Doug Lindsay, who was diagnosed with an extremely rare nervous system disorder cured himself through self-study and surgery after being told he would be bedridden for 11 years.
In 1999, Doug Lindsay was 21 and starting his senior year at Rockhurst University, a Jesuit college in Kansas City, Missouri, when he was diagnosed with a rare disorder that ran in his family. Lindsay remarked that he was a biology major and that he collapsed at home on the dining table, to the entire room spinning around him, right after his first day of classes. "Even lying on the floor didn't feel like it was low enough," he said.
Lindsay told CNN in an exclusive report that his dream was to become a biochemistry professor or maybe a writer for The Simpsons. But all that went to ruin when the doctors informed him that he would have to spend the next 11 years of his life confined to a hospital bed in his living room in St. Louis, due to the nature of his mysterious ailment. Apparently, they couldn't make sense of his condition and none of their treatments helped. As his life began to slowly unfurl for the worse before his eyes, Lindsay decided that he needed to take matters into his own hands if he was to save his life. "He did something extraordinary," said John Novack, spokesman for Inspire, a healthcare social network for rare and chronic-disease patients. When people hear Lindsay's story, Novack said, they often say, "I can do something similar for my kid."
I am so impressed and uplifted by this story— Lyme Disease Advocate (@AdvocatLyme) July 28, 2019
Very similar is happening in the Lyme Disease 🌎. So many of us have been written off by healthcare & referred to psychology. Many of us have spent 1000s of hrs studying med lit to survive after being left to die@PHAC_GC @CPHO_Canada
Amazing story that underscores how we must self-advocate when it comes to our health and wellness. No-one cares for us as much as we do.— Pat Curry (@CatPurry) July 27, 2019
Before Lindsay cured himself, he acknowledged that this was the same medical condition that ran in his family. His mother had it and it reflected on her general well being throughout his childhood. Due to the condition, she was so weak and frail that she wasn't even strong enough to lift her baby boy. Lindsay's mom was mostly bedridden with the same condition that he suffered from in his twenties.
So, from October 1999, Lindsay had been administered to the bed for at least 22 hours a day. Determined to find a solution, he immersed himself deeply in all sorts of medical research. He saw specialists from endocrinology, neurology, internal medicine, and other specialties. As he studied various endocrinology and nervous-system related medical books, he slowly hypothesized that a whole class of autonomic nervous-system disorders could exist beyond the established categories of what most endocrinologists or neurologists knew about.
If U R a grad student doing diagnostics U MUST read this well written piece of news by Ryan Prior. If U R a scientist or faculty U MUST as well. We R called 2 FUEL our solving problem creativity w/tenacity, curiosity & audacity as Doug Lindsay did #science https://t.co/yAdtdEzc1V— Francisco (@ochoa_corona) July 27, 2019
I was amazed by the story of Doug Lindsay who cured himself of a terrible ailment. That shows what the power of courage and determination can do.— One Artifact (@One_Artifact) July 29, 2019
In order for him to find the cure to his rare condition, Lindsay felt that he needed a real scientist to help him out. He decided to attend the American Autonomic Society's annual conference in 2002 attended by scientists from around the world who focused on nervous system disorders. He arrived at the venue as a professional and a medical student/graduate, not as a terminally ill patient, where he then gave a presentation about his disease. During his talk, Lindsay argued that a certain drug might help him, but several of the scientists disagreed with Lindsay's understanding of his ailment. But that didn't come as a surprise as he didn't even have a bachelor's degree and he was telling doctors from Harvard University, the National Institutes of Health and the Cleveland Clinic something their medical training told them was impossible.
However, Lindsay was in luck as Dr. H. Cecil Coghlan, a medical professor at the University of Alabama-Birmingham, approached him after his presentation. Coghlan said he thought Lindsay was definitely on to something and agreed to help him out. In 2004, Lindsay convinced Coghlan to repurpose the drug called Levophed, which is basically an injection of noradrenaline. The drug counters the symptoms created by excess adrenaline, which Lindsay thought his body was producing.
Pretty incredible story. Doug Lindsay was bed-ridden for 11 years; travels to medical conference & gives presentation to doctors about his condition; teams-up with a doctor from @uabmedicine and together they find a cure for his extremely rare diseasehttps://t.co/vhFbEyfny5— Drew (@scog) July 27, 2019
So for the next 6 years, Lindsay spent every second hooked up to an IV. Apparently, it stabilized his condition and allowed him to be active for short periods of time around the house. The first three scans of his adrenal glands all came back negative. They had the fourth scan in 2006 which showed his adrenals "glowing brightly". The diagnosis was 'bilateral adrenal medullary hyperplasia'". What that meant was that his medullas, or the inner regions of his adrenal glands, were enlarged and acted like tumors. This was the reason his glands were producing too much adrenaline. According to all the medical literature that Lindsay had sunk deep into, there were only 32 recorded cases of this 'bilateral adrenal medullary hyperplasia'.
A Rare Disorder and a Rare Student of Biology Collide leading to an important medical breakthrough.— Delia O' Riordan (@Delia1donegal) July 28, 2019
Doug Lindsay identified the source of his and his mother’s rare and disabling condition and discovered a surgical treatment!https://t.co/Op6WWdIANm
Dr. Chris Bauer, Lindsay's personal physician, called his ailment an 'atypical presentation of a rare disease'. "They don't really write textbooks based on that," Bauer said. "We were all learning with Doug as we went along.". After the diagnosis of his bilateral adrenal medullary hyperplasia, Lindsay decided that he was going to have to invent a brand new surgery if he was going to cure himself. He finally came to a bold conclusion that, "If there isn't a surgery, I'm going to make one."
When Doug Lindsay found himself bedridden and doctors had no answers, he took it upon himself to research and invent a successful treatment for his ailment.— HTFITP (@HTFITP_HQ) July 28, 2019
But first, he had to get doctors and researchers to stop treating him like a patient:https://t.co/YRBff4KX1o by @r_prior
In 2008, he found an old study from a scientist at Georgia State University, who summed up the procedure as, "You slice the rat's adrenal gland with a razor blade and squeeze it so the medulla pops out like a pimple." His big day arrived in September 2010, where he recruited a surgeon from the University of Alabama-Birmingham. Lindsay went to the university hospital, where the doctor successfully extracted one of his adrenal medullas. Three weeks after the procedure, Lindsay could sit upright for three hours. By Christmas of the same year, he had the strength to walk a mile to church. In 2012, he underwent a second surgery at Washington University in St. Louis to remove the medulla from his remaining adrenal gland, and by 2014, he had managed to come off most of his meds.
A very inspiring Tedx Talk by Doug Lindsay. Rings a bell? Yes, he invented a new surgery to cure his own unknown illness. He was forced to drop-out from college, but chose to write his own fate.https://t.co/qc6v6cgwxs— Koushambi Mitra (@KoushambiMitra) July 27, 2019
Lindsay is now 41 years old still lives in his childhood home in St. Louis. "You can't recapture the past," Lindsay said. He needs to take nine medications per day, and his health is far from perfect, but he has his life back. He is now a medical consultant. "I couldn't be an assistant manager at Trader Joe's. I don't have the physical ability for that," Lindsay said. "But I can travel and give speeches and go for walks. And I can try to change the world." Lindsay has spoken at medical schools, including Stanford and Harvard, and at a growing list of medical conferences. "I got help from people," he said, "and now I have to help people." He's currently working on a case study to be published in the British Medical Journal.
The guy who cured himself.#DougLindsay— Dimpy Bora (@bora_dimpy) July 28, 2019
“He didn't even have a bachelor's degree and he was telling doctors from Harvard University, the National Institutes of Health and the Cleveland Clinic something their medical training told them was impossible.” https://t.co/h9Ixs5vn90