Hard to Hear, Better to Know

Patient “Mac” was an active person. Before falling ill he enjoyed participating in in biathlons, scuba diving, and traveling. His symptoms began in October of 1996, after he traveled from Victoria Falls to the South of France and then to Cancun. Somewhere along the way, he contracted a virus and began feeling constantly fatigued.

He was diagnosed with a low-functioning thyroid and received treatment which helped, but did not completely alleviate his symptoms.

Later, his diagnosis was changed to chronic fatigue syndrome, but something still didn’t feel right. Then, in 1997, “Mac” was diving in Sinai, Israel when he suddenly had no strength and had to be carried back to shore by ship. It was at this point that he feared that something else was going on.

For 19 years, Mac’s symptoms of severe fatigue and felling “fuzzy headed” continued. He saw at least five different doctors,  accrued over $10,000 in medical bills, and endured countless tests. He tried changing his diet and exercise regimes, everything from eliminating caffeine to consuming lots of it, to resting to being highly active. But these efforts yielded no answers and little relief.

Patient Mac’s daughter, Lily*, heard about CrowdMed on the Reply All podcast and uploaded her father’s case. Mac received an accurate diagnosis after just 43 days on CrowdMed: chronic myelomonocytic leukemia (CML).

“I’m sure it would have taken even less time if I had not been acting as the go-between for my father,” notes Lily.

“CrowdMed was so great, so easy– not as painful or intrusive as the traditional healthcare system. I know it sounds weird but the process was almost fun” remembers Lily. “Throughout the experience, I was really appreciative of the respectful tone of the detectives. They never spoke down to me, they always took care to explain their thinking in terms I could understand. And they always respected that there was a real person on the other end.Even when the diagnosis turned out to be something really scary–No one likes hearing the “c” word when it comes to their father! — the news was delivered in a very supportive, comforting manner that really made a difference in how I was able to receive it.”

“At first, my parents weren’t ready to hear the diagnosis. But they quickly confirmed it with a visit to the Mayo Clinic a few days later, and my mom said that having the news from Crowd Med first helped her prepare for the news when it came.

Happily, the words of Mac’s winning detective turned out to be true: “I know this diagnosis sounds scary,” he had written, “but there are treatments available and it’s important that you seek care as soon as possible.” In fact, Mac is thriving under treatment.

“Something will kill me, but it’s not going to be this,” commented Patient “Mac” about his illness.

At CrowdMed, while we pride ourselves on getting patient’s the answers they are desperately looking for, sometimes the news that we deliver is not the best, especially with potentially fatal diseases. But sometimes the answers, good and bad, offer so much well-deserved relief as well as a path to healing.

*Names have been changed to protect patient and their families’ s identity

Are you or a loved on suffering from an undiagnosed condition? Learn more about how CrowdMed can help here.