Woman’s back pain, weight loss caused by deadly fungal infection valley fever

• Desiree Chan developed back pain, cough, fatigue, night sweats and weight loss in late 2020.
• Doctors tested the 33-year-old for many infectious diseases, such as pneumonia or tuberculosis.
• After about a month, she was diagnosed with Valley fever, a potentially fatal fungal infection.

When Desiree Chan stepped out of the bathtub on New Year’s Eve 2020, a shooting pain tore through her neck and spine. She crawled into bed and stayed there for two days.

The next week, Chan, then 33, went to the doctor. She tested negative for COVID, so the doctor gave her pain medication for what he thought was run-of-the-mill back pain.

Six days later, Chan, who lives in Los Angeles, developed a phlegmic cough. This time her doctor prescribed cough medicine.

But Chan remained in pain and became increasingly tired, so her doctor ordered an X-ray. The scan revealed infiltrates — or dense particles that can be signs of disease — in Chan’s lungs. She was given medication for what her doctor now suspected was pneumonia.

Still, Chan said her cough was so “crippling” that she struggled to talk on the phone with friends. And even when she remained still, “it felt like an elephant stepped on my chest,” she said. She lost weight rapidly 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 company. “I had no idea what was going on.”

Neither did the doctors. It took countless tests, a handful of specialists and many weeks for Chan to be diagnosed with Valley fever, a potentially fatal fungal infection that has been on the rise in recent years. Chan and her fiance, Lucas Marton, 34, spoke to Insider about the experience to raise awareness of the strange disease — and that recovery is possible.

Most people who inhale the fungus that causes valley fever do not get sick

Valley fever, or Coccidioidomycosis, is an infection caused by inhaling spores of the Coccidioides fungus found in the 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 been increasing in unexpected places in recent years, likely due to climate change, Insider’s Gabby Landsverk previously reported.

Not everyone who inhales the spores gets 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 such as the skin, joints or spinal cord.

Chan said doctors do not know why she was susceptible since she is young and otherwise healthy. Typically, people with weakened immune systems – such as those who are pregnant, elderly or who have a condition such as diabetes – are at greatest risk.

Still, Chan feels fortunate that her team stopped at nothing to find the root of her symptoms. “I had doctors who knew what tests to run right away so it didn’t spread throughout my body,” she said. “I’m grateful for that.”

Doctors ran tests for all kinds of infectious diseases before concluding it was valley fever

Doctors largely arrived at Chan’s diagnosis via process of elimination.

Pneumonia was ruled out after Chan’s course of medication 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,” the Chan doctor said as he sent her to the ER, “you’re going to be there for a while.”

He was right. Over the course of about 10 days, Chan’s medical records show she underwent tests for every possible infectious disease, including HIV, Legionnaires’ disease, COVID, tuberculosis and the fungal infections histoplasmosis and aspergillosis. Everything came back negative.

At one point, Chan said, the pulmonologist himself wanted to take a lung biopsy to test for cancer.

Finally, an antibody test finally 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 got proper nutrition and rest, for a few months.

She spent most of 2021 on heavy doses of the antifungal fluconazole, which sapped her appetite, threw off her hormones and saddled her with severe brain fog that forced her to take a few months off work. She had frequent tests on her liver, which fluconazole can damage.

Even after stopping the medication in November 2021, Chan said it took about 6 months for the effects to leave her system.

“It wasn’t until the middle of May this year that I started to feel like I was getting my strength back and feeling clear-headed,” she said.

Around that time, Marton proposed. “You go through something like that and it’s like, what can’t we get 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 has made recovery more difficult

One of the hardest parts of the experience for Chan and Marton has been not knowing if or when life would return to normal. “The answer to every single question we had was, ‘We can’t answer that because every case is different,’” Chan said.

The lack of awareness about valley fever also worsened 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 asked her to do things that she wasn’t yet prepared to do,” like completing work assignments or going on trips with friends.

“That made it so much worse because the frustration then kicked it in,” added Marton. “She really felt unseen and unheard.”

Therefore, the couple shares their story. “We wish we had seen more testimonials that said like, ‘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 fairly normal lifestyle.”