This Young Man Accurately Diagnosed His Own Disorder But Doctors Did Not Believe His Diagnosis

Doug Lindsay ran track in high school. According to an article published by CNN Health, Doug had big plans as a senior at Rockhurst University in Kansas City where he was a biology major. He wanted to be a biochemistry professor. But his world came crashing down in 1999 when Doug collapsed.

His symptoms were intense and apparently not treatable. He couldn’t stand up for more than a few minutes. He was dizzy, even when lying down, and his heart raced with the slightest movement. He eventually took to bed at his home in St. Louis, Missouri where his mysterious illness kept him confined to his bed for most of the time each day, for the next eleven years.

Doug’s Remarkable Story

Doug’s doctors could not come up with a diagnosis and the few treatments they tried were of no use.

After many disappointments and no progress, Doug realized that if he had any hope of a recovery, he had to come up with the answers himself.

Family History

Doug was finally able to “sort things out”. He realized that his mother may have had the same mysterious illness rather than her suspected thyroid condition. Doug was a young boy when his mother became very weak. She was eventually bedridden when Doug was about four years old.

The doctors diagnosed it as a thyroid condition. When the doctors finally recommended that she be sent to the Mayo Clinic for tests his mother was too ill to travel. Doug’s mother lived for many years but for most of those years, she was bedridden.

Doug’s aunt also had a similar condition, rendering her too weak to accomplish even the most simple everyday tasks.

Bedridden Twenty-Two Hours a Day

For the next eleven years, Doug spent most of his day in bed. His reading material consisted entirely of medical books and medical research.

He was seen by specialists in internal medicine, endocrinology, neurology, and a host of other specialties.

One doctor even suggested that Doug see a psychiatrist. That prompted Doug to again decide that it was up to him to find the answers.

Answers in a Discarded Textbook

Doug remembered that he had found an old endocrinology textbook when he was in college. He kept it hoping to find out more about is mother’s condition.

As he read, one paragraph jumped out at him. It discussed adrenal disorders and how they could appear to be similar to thyroid disorders.

He immediately targeted adrenal glands. He poured through other medical textbooks and began to theorize that there may be a class of disorders existing in the autonomic nervous system that was unknown to neurologists and endocrinologists. The autonomic nervous system controls involuntary actions such as heartbeat and breathing.

From Textbooks to a Computer

Doug managed to buy an old computer from a former college roommate. He located the National Dysautonomic Research Foundation’s website. The Foundation is dedicated to finding answers to the same disorder that has affected Doug, his mother, and his aunt. Doug requested literature from the Foundation that would provide the most up-to-date research in this field.

Most of the updated material did not provide any answers nor did the diseases being studies fit in with Doug’s symptoms. Nevertheless, Doug had the feeling that he was closing in on the mystery.

Doug Found a Partner

Doug decided that he should partner with a scientist who would be dedicated to the long hours that would be required to solve this mystery.

It was a given that Doug could find the right person at the American Autonomic Society’s annual conference. Scientists from all over the world attended this conference.  One of the main topics fof the conference would be disorders of the nervous system.

The conference was held in South Carolina. Doug bought airline tickets for a whole row of seats so that his friends could arrange to have him lay across the seats for the flight. He was invited to give a talk about his illness and he was determined to do so.

Doug’s goal for the conference was to convince the attendees that his disease couldn’t be found in any textbook. Although he arrived and delivered the speech in a wheelchair, he did his best to appear to the audience as a graduate student rather than as a patient.

Doug understood that some of the scientists might not agree with his approach to finding a cure for his disease. After all, he was addressing specialists from some of the most prestigious universities in the country. The scientists, in accordance with their training, considered the theories he espoused to be impossible.

Doug’s big break arrived in the person of Dr. H. Cecil Coghlan who was a medical professor at the University of Alabama-Birmingham and specialized in dysautonomia disorders. Dr. Coghlan told Doug that he believed his theories deserved further consideration.

Too Much Adrenaline

Doug is ever grateful to the friends who helped him along the way. His new theory was that his body produced more than the normal amount of adrenaline. He was also somewhat familiar with the FDA approved drug Levophed. It is administered by an injection of noradrenaline which mitigates the symptoms caused by an overabundance of adrenaline. Doug was determined to present this, in person, to Dr. Coghlan.

In 2004, his journey literally began. One of Doug’s friends rented an SUV. With Doug in the back lying on a mattress they drove 500 miles to Birmingham, Alabama.

Doug managed to convince Dr. Coghlan to repurpose (reprofile) the Levophed.drug with the intent of receiving the drug by IV drip 24/7 for up to six years.

Still Only Halfway There

Doug spent every second of every day receiving the IV drip. It did help to a certain extent. However, other than short visits outside of the house, Doug was still not recovering as he had expected. He again focused on the excess of adrenaline in his blood.

Dr. Coghlan suspected an adrenal tumor but several scans of his adrenal glands were negative. Doug went back to the drawing board. He again immersed himself in his medical books and . . . he hit the jackpot.

It Looked Like a Tumor; It Acted Like a Tumor, But It was Not a Tumor

Doug accepted the fact that there was no tumor. But then he reasoned that there might be something in the adrenal gland that mimicked a tumor.

The fourth scan of his adrenal glands in 2006 showed that they were “glowing”. Doug said that this was consistent with his theory.

Then he received an urgent call from  Dr. Coghlan who announced that they had “found it.”

Diagnosis: Bilateral Adrenal Medullary Hyperplasia

Dr. Coghlan’s tests confirmed that areas of Doug’s adrenal glands, the inner regions called medullas, were enlarged, mimicking tumors, and over-producing adrenaline.

There were only thirty-two cases of bilateral adrenal medullary hyperplasia recorded at that time. Although specialists in this field expressed doubt about the diagnosis, Dr. Coghlan said he would put his reputation on the line and gave his full support.

Doug immediately moved on to the next step in the process. A solution. One that meant slicing his adrenal glands and removing the medullas. He believed this was the answer to improving his health.

Doug’s physician Dr. Bauer, was heard to say “We were all learning with Doug as we went along”.

Doug decided that if there is no standard surgical procedure, he would create one. He went back to his books and in 2008 he found a study where scientists slit the adrenal gland of a rat and squeezed out the medulla.

That was followed by several more revelations going back as far as 1926. Doug prepared a PDF proposing, for the first time, a human adrenal medullectomy. It took eighteen months for Doug to locate a surgeon willing to conduct such an unorthodox procedure.

Again, with assistance from his friends, Doug traveled to Pennsylvania University to meet with the Society for Amateur Scientists.

The Pitfalls of New and Unproven Surgery

The risks of conducting a new and unproven surgical procedure involve ethics, finance, insurance, and liability. It also involves risking the loss of the surgeon’s license, especially if complications arise during or even after the surgery.

Doug was able to recruit a surgeon from the university hospital in Alabama-Birmingham. In September of 2010, the doctors successfully removed an adrenal medulla. By Christmas Eve Doug walked one mile to church.

Still, his progress was not satisfactory. In 2012 Doug decided on surgery again. This time the surgery took place at the University hospital in St. Louis, Missouri. Doug’s surgeons removed the medulla from his other adrenal gland.

Finally, Success

Within a year Doug was on vacation in the Bahamas with his friends. By 2014 he was able to discontinue some of his medication.

And his most ardent supporter, Dr. Coghlan, lived to see Doug’s miraculous recovery. Doug still lives at home and must rely on nine medications every day.

His mother’s condition was too delicate to endure the same surgery to which Doug was subjected. His mother died in 2016, the same year Doug received his degree in biology from Rockhurst College.

Doug is using his experience to help others. He began a career in medicine as a consultant. Doctors such as Dr. Lawrence Chu of Stanford depend on Doug when in need of assistance with similar rare diseases.

Doug is often called to give a presentation at medical conferences. He is currently preparing a case study that will be published in the British Medical Journal.

Doug has a special gift for solving unmanageable medical problems. He is grateful for the support that he received from the medical profession and he intends to give back to any and all who need his help.

 


 

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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