Incredible Story Of Closed Mindedness - Man Figures Out His Diagnosis And Treatment Despite Doctors

yerrag

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Now we all here have a chance to be consultants to doctors as well. The extent of how I overcome a really hopeless medical condition would determine how much valued I am as a consultant. So guys, keep working on yourself! We will all be behind each other.
 

Tarmander

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What a great story.

I have a female doctor who is awesome. Talks to me for a half hour about my theories and corrects me when I am off base in some fundamental way. Sometimes she gets all "I want to stick with the science on this one," in a condescending tone. Ehh, I figure a little ego repair is fine and I let it pass.

I recommend a female doctor to those who want to work with someone. They are more flexible and more willing to go along if you seem to know what you are doing.
 

haidut

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This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself — CNN

This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself

Updated 11:40 AM EDT July 27, 2019

Doug Lindsay was 21 and starting his senior year at Rockhurst University, a Jesuit college in Kansas City, Missouri, when his world imploded.

After his first day of classes, the biology major collapsed at home on the dining room table, the room spinning around him.

It was 1999. The symptoms soon became intense and untreatable. His heart would race, he felt weak and he frequently got dizzy. Lindsay could walk only about 50 feet at a time and couldn't stand for more than a few minutes.

"Even lying on the floor didn't feel like it was low enough," he said.

The former high school track athlete had dreamed of becoming a biochemistry professor or maybe a writer for "The Simpsons."

Instead, he would spend the next 11 years mostly confined to a hospital bed in his living room in St. Louis, hamstrung by a mysterious ailment.

Doctors were baffled. Treatments didn't help. And Lindsay eventually realized that if he wanted his life back, he would have to do it himself.

His journey since has amazed medical professionals.

"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."

His mother was a living prophecy

Whatever was wrong with him ran in the family.

By the time Lindsay was 18 months old, his mother was so weak she could no longer pick him up.

By the time he was 4 she could no longer walk. She did manage to pick him up one more time that year, when he was choking on a jawbreaker. She saved his life.

Otherwise, she was too frail. She lived for decades, mostly bedridden with the same condition that stole her son's twenties. After years of tests, she determined her condition was related to her thyroid, but she was too sick to travel to the Mayo Clinic to get more specialized care, Lindsay said.

Lindsay's aunt also developed the same ailment, growing so feeble she couldn't tie her own shoes.

As a teenager, watching his family members sidelined from life, Lindsay wondered whether his body was a ticking time bomb, too.

Finally, that day in 1999, the alarm went off.

"When I called my mom that night to tell her I needed to drop out (of college), we both knew," he said. The family curse had struck.

He found answers in discarded medical textbooks

From the fall of 1999 onward, Lindsay was bedridden about 22 hours a day.

"If I was up, it was because I was eating or going to the bathroom," he said.

Lindsay immersed himself in medical research, determined to find a way out. He saw specialists from endocrinology, neurology, internal medicine and other specialties. When one doctor was out of ideas, he referred Lindsay to a psychiatrist.

That's when Lindsay he realized he'd have to figure his predicament out on his own.

While in college he had picked up a 2,200-page endocrinology textbook near a garbage can, hoping to use it to figure out what condition his mom had. In it, he found an important passage discussing how adrenal disorders could mirror thyroid disorders.

He zeroed in on his adrenal glands, which sit atop the kidneys on either side of the lower abdomen.

Using a stash of aging medical textbooks, Lindsay hypothesized that a whole class of autonomic nervous-system disorders could exist beyond the established categories of what most endocrinologists or neurologists knew about.

He cobbled together cash for a computer, had an old college roommate bring it over, and got to work.

Lindsay soon stumbled on the website for the National Dysautonomic Research Foundation, delighted that an entire organization was dedicated to researching the type of disorder plaguing him and his family. He asked the foundation to send him literature about emerging research in the field.

None of the diseases the foundation was examining fit Lindsay's pattern of symptoms. But he was getting closer.

He convinced a researcher who believed in him

Lindsay soon decided he needed a partner -- not just a physician but a scientist curious enough to take on a rare case and spend long hours with him parsing it out.

The best place to find that person, he reasoned, was at the American Autonomic Society's annual conference, attended by scientists from around the world who focused on nervous system disorders.

In 2002, he give a presentation about his disease at the group's meeting in Hilton Head, South Carolina. To get there, Lindsay bought a row of airline tickets so that, with the help of friends, he could lay across several seats during the flight.

Lindsay arrived at the conference in a wheelchair, wearing a suit and tie, and presented himself as a Jesuit-trained scientist. He tried to comport himself like a grad student or a junior colleague to the scholars in the audience, not like a patient.

He was just a scientist living an experiment in his own body. During his talk, Lindsay argued that a certain drug might help him.

Several of the scientists disagreed with Lindsay's hypotheses about his ailment. But that wasn't unexpected. 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.

"They didn't patronize me. They treated me like a scientist," Lindsay said. "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."

Dr. H. Cecil Coghlan, a medical professor at the University of Alabama-Birmingham, approached Lindsay after his presentation. Coghlan said he thought Lindsay was on to something.

At last, Lindsay had a medical ally.

His first innovation was repurposing a drug

In early 2004, one of Lindsay's friends rented an SUV, loaded a mattress in the back and drove him, lying flat, 500 miles to Birmingham.

Lindsay suspected his body was producing too much adrenaline. He knew of a drug called Levophed, which is approved by the US Food and Drug Administration to raise blood pressure in some critically ill patients. Levophed is basically an injection of noradrenaline, which counters the symptoms created by excess adrenaline.

It hadn't been done before, but Lindsay convinced Coghlan to repurpose the drug so he could live on a 24/7 noradrenaline drip for the next six years.

Lindsay spent "every second of every day" hooked up to an IV. It stabilized his condition and allowed him to be active for short periods of time around the house.

"I was no longer at risk of losing everything," Lindsay said.

Still, other than doctors' visits, a high school reunion and a few weddings, Lindsay's autonomic dysfunction kept him mostly confined to the house he grew up in well beyond his twenties.

Why was he so sick, he wondered? Something was dumping way too much adrenaline into his blood.

Coghlan told him he might have an adrenal tumor. But three scans of his adrenal glands all came back negative.

Discouraged but not deterred, Lindsay did the only thing he could do: He dove back into the medical literature.

And he came up with a treasure.

Later he diagnosed a disorder doctors didn't believe could exist

Lindsay suspected there might be something in his adrenal gland that acted like a tumor, but wasn't one.

A fourth scan in 2006 showed his adrenals "glowing brightly," Lindsay said, an abnormality consistent with his new theory.

Coghlan called Lindsay and said, "We found it!" The diagnosis: bilateral adrenal medullary hyperplasia.

In layman's terms, it means the medullas, or inner regions, of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing way too much adrenaline.

Experts in the field doubted the diagnosis. But Coghlan put his professional reputation on the line to back it.

As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia.

And he fixed on what seemed like a simple solution: If he could cut out the medullas of his adrenal glands -- sort of like slicing into a hard-boiled egg and removing the yolk -- his health would improve.

Dr. Chris Bauer, Lindsay's personal physician, calls his ailment an "atypical presentation of a rare disease."

"They don't really write textbooks based on that," Bauer said. "We were were all learning with Doug as we went along."

Then he pioneered a new surgery

Lindsay finally came to a bold conclusion. "If there isn't a surgery," he decided, "I'm going to make one."

His first big lead came in 2008. He found a 1980 study from a scientist at Georgia State University, which he summed up as: "You slice the rat's adrenal gland with a razor blade and squeeze it so the medulla pops out like a pimple."

Then he found that another version of the adrenal medulla extraction had been done at Harvard. Renowned professor Walter Bradford Cannon had performed the surgery on cats in 1926. Lindsay found records of the surgery being done on dogs as well.

He built a 363-page PDF which proposed a first-ever human adrenal medullectomy.

Then he spent the next 18 months working to find a surgeon who would oversee the unorthodox procedure.

Pioneering a new surgery is a high-wire act for ethical and financial reasons as well. Surgeons could risk losing their license by performing an unproven operation, especially if complications arose. And insurance companies tend to not reimburse patients for non-standard procedures.

Because many of the doctors in that specialized field knew each other, Lindsay was careful where he pitched the idea that might save his life.

Eventually he recruited a surgeon from the University of Alabama-Birmingham. In September 2010 Lindsday 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 Eve, he had the strength to walk a mile to church.

As he stood in the back of the church during midnight Mass, it finally felt like hope was winning.

But progress was slow. In 2012, he underwent a second surgery at Washington University in St. Louis to remove the medulla from his remaining adrenal gland.

A year later, he was well enough to fly with friends to the Bahamas. It was the first time in his life the Midwesterner had seen the ocean.

By early 2014, he was coming off some of his meds.

Coghlan, his champion, lived just long enough to see Lindsay's remarkable recovery. He died in 2015.

Now he's helping other rare-disease patients

Against the odds, Lindsay had found a way to save himself.

But his mother was too delicate to be moved to another facility, let alone endure the surgery her son pioneered. She died in 2016.

She didn't get to see him walk across the stage to graduate that year from Rockhurst University with a bachelor's degree in biology, 16 years after he originally expected to begin his career.

Lindsay is now 41 years old. Many of the friends with whom he planned to graduate are now married, with kids in grade school.

"You can't recapture the past," Lindsay said.

Today he still lives in his childhood home in St. Louis. He needs to take nine medications per day, and his health is far from perfect, but he has his life back.

He's not exactly the biology professor he dreamed of being at 21, but he's not far off the mark. He's leveraging his experience into a new career as 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."

Doctors are turning to him to help them identify and treat rare diseases like his own.

"I'm a full professor at Stanford, and I don't know these answers," said Dr. Lawrence Chu, who found himself leaning on Lindsay when a rare disease patient came to him. "Doug was the expert consultant."

Lindsay has spoken at medical schools, including Stanford and Harvard, and at a growing list of medical conferences. And he's working on a case study to be published in the British Medical Journal.

With his gift for solving intractable problems, he hopes to help steer other patients with hard-to-treat diseases on a path toward wholeness.

"I got help from people," he said, "and now I have to help people."

© 2019 Cable News Network, Inc. A WarnerMedia Company. All Rights Reserved.

Amazing story, thanks! Btw, very similar issues like the ones he is having are being successfully treated with clonidine. When used chronically, clonidine can downregulate adrenaline synthesis (unless there is a tumor producing it) and there is no need for surgery. Adrenal surgeries are really dangerous. They have high failure rates and can often lead to really nasty conditions like Nelson syndrome due to damaging some of the steroid-producing layers when removing the medula.
Nelson's syndrome - Wikipedia

But in any event, I am glad he pushed through and eventually "escaped" his predicament. This can have powerful effects on removing "learned helplessness", which was probably responsible for his fatigue and lethargy.
 
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Amazing story, thanks! Btw, very similar issues like the ones he is having are being successfully treated with clonidine - a drug known as noradrenergic agonist. So, it acts similar to noradrenaline and I noticed that the guy was treating himself with noradrenaline injections. When used chronically, clonidine can downregulate adrenaline synthesis (unless there is a tumor producing it) and there is no need for surgery. Adrenal surgeries are really dangerous. They have high failure rates and can often lead to really nasty conditions like Nelson syndrome due to damaging some of the steroid-producing layers when removing the medula.
Nelson's syndrome - Wikipedia

But in any event, I am glad he pushed through and eventually "escaped" his predicament. This can have powerful effects on removing "learned helplessness", which was probably responsible for his fatigue and lethargy.

Wow. Excellent points. Thanks.
 

LucyL

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I think this story is more about medicine under capitalism then about the close mindedness of individuals. If you spent 1/3 if your life studying for a professional licensure I doubt you would be willing to put your license on the line no matter how altruistic you may or not be. the scientists could act in an innovative way because they had less to lose. It’s unfortunate doctors don’t get that kind of ability under their practice standards.
"professional licensure" does not equal medicine under capitalism. It is medicine under government - eg facism.
 

LUH 3417

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"professional licensure" does not equal medicine under capitalism. It is medicine under government - eg facism.
My point is: would you risk a half a million dollar investment and 1/3 of your life dedicated to education for a single patients bizarre adrenal problem? Now answer that question thinking about your real or imagined spouse, children, and their future...no one is going to give up everything they worked for to test a surgery for a sickly patient.
Are you saying that if we lived in a purely capitalistic society doctors would not be required to attain professional licensure?
 

Inspired

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My point is: would you risk a half a million dollar investment and 1/3 of your life dedicated to education for a single patients bizarre adrenal problem? Now answer that question thinking about your real or imagined spouse, children, and their future...no one is going to give up everything they worked for to test a surgery for a sickly patient.
Are you saying that if we lived in a purely capitalistic society doctors would not be required to attain professional licensure?
1. Doctors can cover their tracks, or justify nearly any treatment.
2. Medical boards and regulators rarely punish doctors etc.
3. Doctors have malpractice insurance which covers errors etc.

Long story short, to lose your license........you have to be abusing drugs, sleeping with patients, and be consistently making extreme medical errors.
 

Inspired

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Going back to the topic, most doctors don't have the balls to do anything different because they are basic level "body mechanics", who are usually outdated, usually have lost their lust for practice long ago, and have normal problems like any other person.

If you want problem solving, you've got to find an expert in their prime. And the more you can be their peer, and talk in their language, the better. If you can do that, even the most egotistical ones eventually have to recognize that you know your ***t, and they should listen. They still may be too gutless to do what you want them to do in the end though.
 

LUH 3417

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1. Doctors can cover their tracks, or justify nearly any treatment.
2. Medical boards and regulators rarely punish doctors etc.
3. Doctors have malpractice insurance which covers errors etc.

Long story short, to lose your license........you have to be abusing drugs, sleeping with patients, and be consistently making extreme medical errors.
Idk from personal experience but there are stories all over the internet about doctors licenses being questioned because of their low prescriptive rate. You can lose your license over improper charting and a few wrong words.
 

lampofred

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Many doctors are in massive debt from having to pay for med school, and spending hours/days/weeks with just one patient on likely non-productive discussions really takes away money from several additional patients they could've seen in that time. Plus doctors tend to be the ones who are most into eating PUFA, exercising, avoiding tobacco, so they are trying to help you while living in a zombie-like state of consciousness themselves. Many doctors I've shook hands with have had cold hands. So I don't think it's about having balls. The whole system needs changing.
 

Inspired

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Idk from personal experience but there are stories all over the internet about doctors licenses being questioned because of their low prescriptive rate. You can lose your license over improper charting and a few wrong words.
No.
 

Inspired

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Many doctors are in massive debt from having to pay for med school, and spending hours/days/weeks with just one patient on likely non-productive discussions really takes away money from several additional patients they could've seen in that time. Plus doctors tend to be the ones who are most into eating PUFA, exercising, avoiding tobacco, so they are trying to help you while living in a zombie-like state of consciousness themselves. Many doctors I've shook hands with have had cold hands. So I don't think it's about having balls. The whole system needs changing.

Most doctors hate their patients anyway. Most patients don't understand anything. The doctor knows the patients don't follow instructions most of the time.
The doctor knows that the body and mind are very good at healing etc, and if given time, the person may get better on their own. The doctor also knows that treatments don't often work and aren't even supported by good evidence.

There's a lot to be unmotivated about.
 

Inspired

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Adding onto what I said, in this situation, the doctors probably didn't even believe him. Probably thought he was malingering. Probably thought his whole family were crazy etc.
 

LUH 3417

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Ok, I know a doctor who is facing a law suit because a patient refused a genetic test and the patient’s children ended up with a genetically inherited life threatening disorder and the doctor did not chart the words “patient refuses genetic testing” on her chart so that is being used as evidence of negligence. Her license is under scrutiny in addition to having to face a law suit EVEN THOUGH she asked the patient if she wanted to take the test and the patient said NO. The doctor is now responsible because she did not chart a few sentences regarding the exchange correctly.
 
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1. Doctors can cover their tracks, or justify nearly any treatment.
2. Medical boards and regulators rarely punish doctors etc.
3. Doctors have malpractice insurance which covers errors etc.

Long story short, to lose your license........you have to be abusing drugs, sleeping with patients, and be consistently making extreme medical errors.

Hi, so could you please explain how do you know? Genuinely interested.
 
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There is a certain “standard of care” and if you are a doctor and dare practice something outside this, you are in huge trouble if your patient goes south.

Doctors have no real freedom to practice as they see fit. It is a travesty.
 

Inspired

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Ok, I know a doctor who is facing a law suit because a patient refused a genetic test and the patient’s children ended up with a genetically inherited life threatening disorder and the doctor did not chart the words “patient refuses genetic testing” on her chart so that is being used as evidence of negligence. Her license is under scrutiny in addition to having to face a law suit EVEN THOUGH she asked the patient if she wanted to take the test and the patient said NO. The doctor is now responsible because she did not chart a few sentences regarding the exchange correctly.

Her license is unlikely to be under scrutiny, but the plaintiff's attorneys will encourage those fears/beliefs.

Without having more details, it would be a waste of time to speculate beyond that it will be the typical legal process: offers of settlement, stall until plaintiff is desperate for settlement, or goes to trial or arbitration etc where there will be discussion over who said what.

The doctor's insurance malpractice company takes over now, and plays that game. Most likely, patient takes settlement and it's over.
 

haidut

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Probably thought he was malingering

And/or doing something behind their backs he was not telling them about. Like abusing drugs, steroids, etc. There is a special term they use for a category of patients. They call them HONDAs - Hypertensive, Obese, Non-compliant, DiAbetics. I have heard from doctors that they have similar acronyms for mentally ill and generally defiant patients who are known to be "difficult" and as such are labelled from the moment they set foot in the office. Doctors even warn each other when referring such patient across several specialists. This is expressly forbidden by several federal (and many state) laws but there it is in full display.
 

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