A 33-year-old’s back pain and weight loss were symptoms of a deadly fungal infection that spreads through dust

When Desiree Chan got out of the bathtub on New Year’s Eve in 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 meds for what he thought was run-of-the-mill back pain.

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

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

Still, Chan said her cough was so “debilitating” she struggled to talk on the phone with friends. And even when she stayed quiet, “it felt like an elephant was stepping on my chest,” she said. She rapidly lost weight, and developed such intense night sweats she’d have to change her pajamas throughout the night.

“I thought I was dying,” Chan, who runs a travel company, said. “I had no idea what was going on.”

Neither did doctors. It took countless tests, a handful of specialists, and many weeks for Chan to be diagnosed with Valley fever, a potentially deadly fungal infection that’s been on the rise in recent years. Chan and her fiancé, Lucas Marton, 34, talked 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 don’t get sick

Valley fever, or Coccidioidomycosis, is an infection caused by inhaling spores of Coccidioides fungus, which is found in soil. It’s 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 on the rise 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. Around 1 in 10 patients can have serious side effects, like 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, since she’s young and otherwise healthy. Typically, people with weakened immune systems — like those who are pregnant, older, or who have a condition like diabetes — are at highest risk.

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

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

Doctors largely came to Chan’s diagnosis via process of elimination.

Pneumonia was ruled out after Chan’s medication course 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 doctor said when directing her to the ER, “you’re going to be there for awhile.”

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

At one point, Chan said the pulmonologist even 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 the right nutrition and rest, for a few months.

She spent the majority of 2021 on heavy doses of the antifungal fluconazole, which sapped her appetite, threw off her hormones, and saddled her with serious brain fog that forced her to take a few months off work. She had frequent checkups 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 mid-May of this year that I started to feel like I was getting my strength back and feeling clear in the head,” she said.

Around that point, 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 this grueling for someone I didn’t wnat to spend the rest of my life with.”

Lack of awareness has made recovery harder

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 of Valley fever exacerbated the pain, too.

“People didn’t really know what was going on because she didn’t really know what was going on,” Marton, a nonprofit director, said. “People were asking her to do things that she wasn’t yet prepared yet to do,” like complete work tasks or go on a trip with friends.

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

That’s why the couple is sharing their story. “We wish we’d seen more testimonials that said like, ‘This is how long it’s going to take, this is how bad it’s going to get, is this going to be debilitating for the rest of my life?'” Marton said. “For us, the answer is no. We seem to have come into a fairly normal style of living.”