- Desiree Chan developed back pain, cough, fatigue, night sweats and weight loss in late 2020.
- Doctors tested the 33-year-old man for numerous infectious diseases, such as pneumonia or tuberculosis.
- After about a month, she was diagnosed with Valley fever, a life-threatening fungal infection.
When Desiree Chan stepped out of the tub on New Year’s Eve in 2020, a throbbing pain tore through her neck and spine. She crawled into bed and stayed there for two days.
The following week, Chan, then 33, went to the doctor. She tested negative for COVID, so the doctor gave her painkillers for what he thought were trivial back pain.
Six days later, Chan, who lives in Los Angeles, developed a wet cough. This time, her doctor prescribed her cough medicine.
But Chan was still in pain and increasingly tired, so her doctor ordered an X-ray. Analysis revealed infiltrates – or dense particles that may indicate disease – in Chan’s lungs. He was given medication for what, at the time, his doctor suspected was pneumonia.
Still, Chan said her cough was so “debilitating” that she found it difficult to talk on the phone with friends. And even when she remained silent, “I felt like an elephant was walking on my chest,” she said. She quickly lost weight and developed night sweats so intense that she had to change her pajamas all night.
“I thought I was dying,” said Chan, who runs a travel agency. “I had no idea what was going on.”
Neither do doctors. It took countless tests, a handful of specialists and many weeks for Chan to be diagnosed with Valley fever, a life-threatening fungal infection that has been on the rise in recent years. Chan and her fiancé, Lucas Marton, 34, spoke to Insider about the experience to raise awareness of the strange disease – and that a cure is possible.
Most people who inhale the fungus that causes Valley fever don’t get sick
Valley fever, or coccidioidomycosis, is an infection caused by inhaling spores of the fungus Coccidioides, found in soil. It is named after the San Joaquin Valley in California, but is also found in Arizona, Nevada, Utah, New Mexico, California, Texas, and Washington.
The infection has increased in unexpected places in recent years, likely due to climate change, Insider’s Gabby Landsverk previously reported.
Not everyone who inhales the spores will get sick, but about 40% of those who do develop flu-like symptoms. About 1 in 10 patients may have serious side effects, such as permanent lung damage. Rarely, people with valley fever die if the infection spreads to places like the skin, joints, or spinal cord.
Chan said doctors don’t know why she was susceptible, as she is young and healthy. Typically, people with weakened immune systems — such as those who are pregnant, older, or have a condition like diabetes — are most at risk.
Still, Chan is lucky his team will stop at nothing to get to the root of his symptoms. “I had doctors who knew what tests to do right away, so it didn’t spread throughout my body,” she said. “I’m grateful for that.”
Doctors ran tests for all sorts of infectious diseases before concluding it was Valley fever
Doctors came to Chan’s diagnosis largely through a process of elimination.
Pneumonia was ruled out after Chan’s drug treatment ended, but the infiltrates remained. The next suspected culprit was tuberculosis after a CAT scan revealed a mass in Chan’s lung.
“Pack a bag,” Chan’s doctor said directing her to the ER, “you’re going to be in there for a while.”
He was right. Over the course of about 10 days, Chan’s medical records show she was tested for all sorts of infectious diseases, including HIV, Legionnaires’ disease, COVID, tuberculosis, and fungal infections histoplasmosis and aspergillosis. . Everything came back negative.
At one point, Chan said the pulmonologist even wanted to do a lung biopsy to test for cancer.
Finally, an antibody test eventually came back positive for Coccidioides, the fungus that causes Valley fever. Then the recovery began.
Chan moved in with her family, who made sure she fed and rested properly for a few months.
She spent the majority of 2021 taking high doses of the antifungal fluconazole, which sapped her appetite, plummeted her hormones and plagued her with severe brain fog that forced her to miss work for some months. She had frequent checks on her liver, which fluconazole can damage.
Even after quitting the drug in November 2021, Chan said it took around 6 months for the effects to leave his system.
“It wasn’t until mid-May of this year that I started to feel like I was getting my strength back and having a clear head,” she said.
Around this point, Marton proposed. “You go through something like that, and it’s like, what can’t we go through? “, he said. “I wouldn’t have gone through something so exhausting for someone I didn’t want to spend the rest of my life with. ”
Lack of awareness made recovery more difficult
One of the hardest parts of the experience for Chan and Marton was not knowing if or when life would return to normal. “The answer to every question we had was, ‘We can’t answer that because every case is different,'” Chan said.
The lack of awareness of Valley Fever has also exacerbated the pain.
“People didn’t really know what was going on because she didn’t really know what was going on,” said Marton, a nonprofit director. “People were asking her to do things she wasn’t ready to do yet,” like completing work tasks or going on trips with friends.
“It made things a lot worse because frustration then brought him down,” added Marton. “She felt really invisible and inaudible.”
That’s why the couple is sharing their story. “We would have liked to see more testimonials that said, ‘This is how long it’s going to take, this is how bad it’s going to be, is this going to be debilitating for the rest of my life? ‘” Marton said. “For us, the answer is no. We seem to have settled into a pretty normal lifestyle.”
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