Two days after Kevin Kong flew home to California from New York, his hands itched so badly, the pain jolted him awake. He thought the problem was eczema.
“Everything just started going bad,” said the Emeryville, Calif., resident. “I started getting more spots, on my face, more redness and they started oozing fluid. The rash extended to my elbows and my hands and my ankles.”
Kwong, 33, had six virtual appointments with doctors and nurses, a call to a nurse hotline, a trip to an urgent care clinic, two emergency room visits and two misdiagnoses by an infectious disease specialist before contracting monkeypox in early July. .
Despite undergoing two tests, he never tested positive.
As numbers of monkeypox exploded in the United States last month, the public health system has struggled to spread the word about the dangers of the virus and provide limited vaccinations to vulnerable people. But the problem extends further. Those who may be infected are struggling with dead ends, delays, misdiagnosis and inappropriate treatment as they navigate an unprepared and uninformed healthcare system.
The once-obscure virus is making the rounds in hospitals to teach emergency room staff how to properly identify and test for it. Dr. Peter Chin-Hong, the infectious disease specialist at the University of California-San Francisco who ultimately diagnosed Kwong, said his case is an important one for the research hospital.
“Kevin came in the middle of the night when a lot of resources weren’t available. So I think after his case, we’re learning a lot more about general conditions. But I think your average physician doesn’t always know what to do,” says Chin-Hong.
Monkeypox is caused by a virus in the same family as smallpox, although it is not as contagious or fatal. Typically, patients develop fever, muscle aches, and then a rash on their face, mouth, hands, and possibly genitals that can last for several weeks.
The current outbreak is spreading through person-to-person contact, such as touching wounds, or exchanging saliva or other bodily fluids. People can also become infected by touching objects or surfaces such as sex toys or sheets shared with someone with the illness.
The first US monkeypox case of the outbreak was reported on May 17, and since then, the number has grown to more than 6,300 probable or confirmed cases representing nearly every state, as well as Washington, D.C. and Puerto Rico.
California Governor Gavin Newsom declared a state of emergency on Monday to coordinate the response and strengthen the state’s vaccination efforts. About half of California’s 1,135 monkeypox cases are concentrated in the San Francisco Bay Area.
Although anyone can become infected, the outbreak appears to have affected men who have sex with men. Kwong said she likely contracted monkeypox from a sexual encounter during a New York Pride event.
“This is the first multicontinental outbreak, so it’s not just going to go away,” said Andrew Neumer, an associate professor at the University of California-Irvine who studies infectious diseases.
“It won’t blow up like Covid, but this outbreak will have legs,” he said. “It can be like syphilis and it’ll just stick around.”
But most doctors don’t know how to recognize it. In late June, when Kwong began experiencing symptoms, most of the doctors and nurses she spoke with during virtual visits did not mention monkeypox. It is UCLA professor of medicine and epidemiology. That doesn’t surprise Timothy Brewer.
“Although I’ve worked on and off several sub-Saharan African countries over the past 25 years, I’ve never actually treated a case of monkeypox,” Brewer said. “Before this current outbreak, monkeypox was a very uncommon disease.”
A rash confined to the genital or rectal area may be mistaken for a sexually transmitted infection. But even if doctors aren’t trained to recognize monkeypox, Brewer said, their advice to patients can help spread the word.
“You would advise people not to engage in sexual activity until their wounds are healed and treated,” Brewer said.
While many cases are mild and resolve on their own, some quickly become serious — like Kwong’s.
“You don’t realize that your body is being taken over by these things. And you have nowhere to go, so it’s both painful and terrifying,” Kwong said.
Kwong initially treated the rash with topical steroids used for eczema. When that didn’t work, she made an online appointment with a nurse who diagnosed her with herpes and prescribed an antiviral drug.
Over the next few hours, the rash quickly spread to other parts of her body. Alarmed, Co. went to an urgent care clinic. The doctor agreed with the diagnosis of herpes, and added another: scabies, a rash caused by mites that grow on the skin. “My spots were concentrated on my hands and my wrists and legs and elbows, which are prime locations for scabies,” Kwong said.
The emergency care doctor considered monkeypox but Kwang’s spots were clustered together and looked different from the photos of the monkeypox rash the doctor had seen. “Depending on where I was with my symptoms and who I was talking to, I was getting different answers,” Kwong says.
Over the Fourth of July holiday weekend, Kong frantically reached out to anyone she thought could help as her symptoms worsened.
“I tried contacting doctors, I knew friends who were dermatologists,” he said. “Every time I talked to someone, I quickly got worse. And it was really weird.”
During another virtual appointment, in the middle of the night, a nurse noticed that the rash had spread to her eye and told her to go to the emergency room immediately. Doctors at Alta Bates Summit Medical Center in Oakland said Kong may have monkeypox.
“They were doing research while I was in this room, and back and forth on the phone with the CDC. I expected myself to be in the dark as a patient, but I didn’t realize how little information was given even to the providers and how unprepared they were,” she said.
He spent 12 hours in the emergency room, where nurses swabbed his wounds for a monkeypox test. They told him to come back if he developed a fever or vomiting.
“At this point, I was just sad. I had sores on the back of my throat, on my face, all over my body,” he said. “I was just delirious because I couldn’t sleep more than an hour or two at any one time.”
Later that night, Kwong decided to go to the University of California-San Francisco Medical Center. She heard through a friend that UCSF Health was treating monkeypox cases and a virtual care nurse urged her to go.
When he arrived, he was separated from the other patients, given oxycodone for pain and shaken down for another monkeypox test.
The next day, Chin-hong begins treating Kwang for monkeypox. “I thought, wow, this is really, really widespread disease,” Chin-Hong said. “I have seen other cases of monkeypox before, but they are very limited. I would say Kevin is probably in the top 5% for disease severity.”
Because the rash was near Kwong’s eye, Chin-hong feared that he might go blind if the disease was not treated. He prescribed Tecovirmat, an antiviral drug called TPOXX, which has received special approval from the FDA to treat monkeypox in certain conditions.
After the first day of taking the medicine, Kwong noticed that her rash had stopped spreading. Over the next two days, hundreds of swollen spots flattened into red discs. “I was shocked at how quickly Kevin improved. It was almost like he was a turbo-rocket on the way to recovery,” says Chin-Hong.
As Kwong began healing, he got his first test result back: negative. Then the second: negative.
Chin-Hong said health workers did not scrub her wounds hard enough to get live cells for monkeypox testing. “As a clinician it is very difficult to get a really good sample in these types of lesions because the patient is often in pain. And you don’t like to see people suffer,” Chin-Hong said.
Cases like Kwong’s can be missed if the test isn’t done properly. Brewer said the Centers for Disease Control and Prevention’s online resources for physicians are adequate, but only if you take the time to read all 59 pages.
Doctors must collect at least two samples from multiple locations on the patient’s body, he said. The key, Brewer said, is to sample lesions at “various stages of development” and not just focus on early bumps.
For two weeks, Kwong took six antiviral pills a day to rid his body of the virus. He no longer needs pain medication. “My face healed first, which I think helped me a lot, to be able to recognize who I was in the mirror again,” Kwong said.
Now more than a month after the ordeal began, Kwong’s hands and feet are finally healing. Her cuticles and the skin on her hands have peeled off and are in the process of regrowing, while her fingernails have turned black and are starting to fall off, she said.
Kwong said it will take longer to get over the emotional pain. “I feel less vulnerable, because it was a rapidly debilitating disease. And so I’m still working more on my mental state than my physical state.”
This story is part of a partnership that includes KPCC, NPR and KHN.
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