“There are times when just more doctoring isn’t going to solve it, and I’ve lived through that.” (APB Interview)
Doug Lindsay grew up with a mother who suffered from a severe mystery illness. Both she and her sister experienced debilitating fatigue and weakness for decades, bouncing from doctor to doctor without any indication of what was wrong. Some suggested a thyroid condition was to blame, but treatments never seemed to make a difference.
Because of this, the thought of being overtaken by the same mystery illness was always in the back of Lindsay’s mind. As a freshman in Rockhurst University in Kansas City, his fears came to pass.
“I was a homebound disabled college dropout.” (TedX Talk)
Within weeks of beginning his studies in biology, Lindsay fell sick. Initially diagnosed with mono, he experienced dizziness, weakness, and heart palpitations. It soon became clear to his doctor that mono wasn’t to blame, but Lindsay already suspected this was the case because of his mother and aunt’s experiences.
By his third year of university, 1999, Lindsay was forced to drop out of school, and was confined by weakness to his bed. He spent nearly 22 hours lying down. He was exhausted by walks to the bathroom, by sitting up in bed, and even by digesting certain foods. (APB Interview)
Doctors couldn’t find the cause of his symptoms. One physician even referred Lindsay to a psychiatrist, thinking his symptoms were simply psychosomatic. (CNN)
Finding His Own Answers
So, Lindsay decided to take matters into his own hands. He cracked open an old endocrinology textbook he had found discarded on campus, and read as much as he could when he had the strength, searching for answers.
A theory began to form. Lindsay theorized that there was a previously unresearched class of autonomic nervous-system disorders that was causing him, his mother’s, and his aunt’s illnesses.
He began reaching out to endocrinology scientists and attended the American Autonomic Society’s annual conference in 2002. He pooled together enough money to book a row of airplane seats so he could lie down. Dressed in a suit and sitting in a wheelchair, Lindsay presented his take on his mystery illness to the country’s brightest endocrinologists.
“I was entering into a world of science I couldn’t participate in because I was at home and couldn’t be a grad student,” Lindsay recalls. (CNN)
A Little Help from a New Friend
While most of the audience members were skeptical, one medical professor approached Lindsay after his presentation. Dr. H. Cecil Coghlan of the University of Alabama-Birmingham believed Lindsay was on the brink of something big. He agreed to partner with him to research his illness and find a suitable treatment.
Two years later, Lindsay left his home town and traveled on a mattress in the back of a rented SUV to begin work with Dr. Coghlan in Birmingham. (CNN)
The pair hypothesized that Lindsay’s endocrine system was producing too much adrenaline. They put him on a drug called Levophed, which counteracts the effects of adrenaline. For the next six years, Lindsay took Levophed using an IV, every single day. The drug enabled him to be much more active than before, but still not at healthy levels.
Lindsay and Coghlan continued to search for answers. They looked for an adrenal tumor, but couldn’t find one. Then in 2006, a new scan revealed something abnormal about his adrenal glands.
“We Found It!”
Coghlan called Lindsay and said, “We found it!” Lindsay was diagnosed with bilateral adrenal medullary hyperplasia, one of only 32 documented cases. (CNN) The innermost layer of his adrenal glands was enlarged and causing an excess production of adrenaline.
The problem was, there was no known cure for the condition. Nevertheless, Lindsay persisted.
In 2008, he stumbled across a study from 1980, in which scientists from Georgia State University were able to successfully remove the adrenal medullas from rats. In time, Lindsay was able to design and propose the first human adrenal medullectomy.
He spent 18 months carefully looking for a surgeon who would be willing to perform his experimental procedure. In September of 2010, Lindsay finally got his surgery- the operation he himself researched and planned.
Within three weeks, he had the strength to sit up for 3 hours; within months, he was able to walk a mile!
In 2012, Lindsay repeated the surgery on his other adrenal gland, and by 2014 he was well enough to stop taking some of his medications. Lindsay walked across the stage with his (finally) completed biology degree in 2016, only a short time after his mother passed away.
Finding Answers for Other Mystery Illnesses
Today, Doug Lindsay wants to pay forward the support he received from Dr. Coghlan, his surgeons, his friends, and his family.
“I’m setting up shop as a personal medical consultant. I can work with a very small number of people, but pour hundreds of hours of effort and sophistication into trying to help people who are trapped in the medical system to get answers.”(APB Interview)
You can explore Doug Lindsay’s medical consultant services on his website, here.
“In medicine, straightforward cases are usually straightforward, and what usually works… usually works. But what if it hasn’t for you? No patient wants to be an “interesting case.” You can struggle in the system for years – or for the rest of your life.
“Shifting diagnoses, scores of doctor visits, years of poor health, and then a pivotal question: IF YOU ARE STILL SICK, WHAT IS THE MEDICAL SYSTEM’S PLAN B?
“When I realized they didn’t have one for me or my family, I made one for us. I researched our conditions and collaborated with doctors and scientists. I figured out our problems involved the autonomic nervous system and the adrenal glands, and then I figured out what to do about it for each of us.” (DougLindsay.net)
Watch Dough Lindsay’s TEDX Talk
Disclaimer: This information is not intended to be a substitute for professional medical advice, diagnosis or treatment and is for information only. Always seek the advice of your physician or other qualified health provider with any questions about your medical condition and/or current medication. Do not disregard professional medical advice or delay seeking advice or treatment because of something you have read here.
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