Two days after returning to his home in California from New York, Kevin Kong’s hands were so itchy that he woke up in pain. He thought it was eczema.
“Everything went bad quickly,” the Emeryville resident said. “More spots appeared on the face and fluid started coming out. The rash spread to my elbows, hands and ankles.”
After six virtual appointments with doctors and nurses, one call to a nurse help line, one visit to an urgent care clinic, two visits to an emergency room and two misdiagnoses, Kwong, a 33-year-old infectious disease specialist, diagnosed Monkey (Monkey). Pox early in July.
Despite undergoing two tests, he never tested positive.
As the number of cases in the United States has skyrocketed in the past month, public health systems are scrambling to contain the spread of the virus and limited vaccine supplies among vulnerable people.
But the problem goes beyond that. Those who may be infected face dead ends, delays, misdiagnosis, and inadequate treatment as they navigate an unprepared and uninformed health care system.
Hospitals are scrambling to teach emergency workers how to properly identify and test for this little-known virus. Dr. Peter Chin-Hong, an infectious disease specialist at the University of California-San Francisco who eventually diagnosed Kwong, said her case was a turning point for his hospital.
“Kevin came in the middle of the night, when there weren’t many resources. So I think that after his case, we are becoming more educated about the disease. But I think doctors don’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 contagious or fatal. Typically, patients develop fever, muscle aches, and then a rash on the face, mouth, hands, and possibly genitals that can last for several weeks.
Current outbreaks are spread 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 who has the disease.
The first case of monkeypox in the United States 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 August 1 to coordinate the response and strengthen the state’s vaccination efforts. About half of the 1,135 cases in California 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 explained that she likely contracted monkeypox from a sexual encounter during a New York Pride event.
“This is the first multicontinental outbreak in history, so it’s not just going to go away,” said University of California-Irvine professor Andrew Neumer, who studies infectious diseases.
“It’s not going to explode like Covid, but this outbreak is going to have its way,” he added. “It can and does resemble syphilis.”
But most doctors don’t know how to recognize it. In late June, when Kwong first started experiencing symptoms, most of the doctors and nurses she spoke with during virtual visits didn’t mention monkeypox. UCLA professor of medicine and epidemiology. This is no surprise to Timothy Brewer.
“Although I have worked on and off in various sub-Saharan African countries over the past 25 years, I have never treated a case of monkeypox,” Brewer explained. “Before this outbreak, it was a very uncommon disease.”
A rash confined to the genital or rectal area can be mistaken for a sexually transmitted infection. But, according to Brewer, even if doctors aren’t trained to recognize monkeypox, their advice to patients can help spread it.
“They should be advised against sexual activity until their injury is healed and treated,” Brewer said.
While many cases are mild and resolve on their own, some progress quickly, like Kwong’s.
“You don’t realize that your body is being attacked by these things. And you have nowhere to go, so it’s painful and scary,” Kwong said.
At first, Kwong treated the rash with topical steroids used for eczema. When that didn’t work, she had an online appointment with a nurse who diagnosed her with herpes and prescribed an antiviral drug.
Over the next hours, the rash quickly spread to more parts of her body. Alarmed, Co. went to an emergency clinic. The doctor agreed with the herpes diagnosis and added another: scabies, a rash caused by mites that grow on the skin. “My spots were concentrated on the hands, wrists, feet and elbows, which are prime sites for scabies,” Kwong said.
The doctor thought monkeypox, but Kwong’s spots were clustered together and looked different from the rashes the doctor was familiar with. “Depending on where I was with my symptoms and who I talked to, I would get different responses,” Kwong says.
Over the Fourth of July weekend, “I tried to contact doctors, I knew friends who were dermatologists,” he added. “Every time I talked to someone, it got worse quickly. 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.
“While I was in the room they were investigating and they called the Centers for Disease Control and Prevention (CDC). As a patient, I felt like I didn’t know what was happening to me, but I didn’t realize how little information the professionals had and how unprepared they were,” she said.
He spent 12 hours in the emergency room, where nurses tested him for monkeypox. They told him to come back if he developed a fever or vomiting.
“I felt very bad at that time. I had sores on the back of my throat, on my face, all over my body,” he said. “I was just delusional because I couldn’t sleep for more than an hour or two at a time.”
Later that night, Kwong decided to go to the University of California-San Francisco (UCSF) Medical Center. He heard from a friend that UCSF Health was treating cases of monkeypox, and a virtual care nurse told him to go there.
When he arrived, he was separated from other patients, given oxycodone for pain and tested for monkeypox.
The next day, Chin-hong begins treating Kwang for monkeypox. “I thought, wow, this is a very, very widespread disease,” Chin-Hong said. “I have seen other cases of monkeypox before, but very concentrated. I would say that 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 under certain conditions.
After the first day of treatment, Kwong noticed that the rash had stopped spreading. Over the next two days, hundreds of swollen spots flattened into red discs. “I was surprised at how quickly Kevin improved. It was like a turbo-rocket on the road to recovery,” explained Chin-Hong.
As Kwong began healing, he received his first test result: negative. Then the second: negative.
Chin-Hong said it’s possible that those who sampled the wound didn’t rub hard enough to get live cells for testing.
“As a doctor, it is very difficult to get a good sample in this type of injury because the patient usually feels pain. And you don’t like to see people suffer,” Chin-Hong said.
Cases like Kwong’s can go undetected if the tests aren’t done properly. The online resources for doctors provided by the CDC are adequate, Brewer says, but only if you take the time to read the 59 pages.
Doctors should collect at least two samples from different parts of the patient’s body, he added. The key, according to Brewer, is to sample lesions at “various stages of development” and not just focus on the first few 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 helped me a lot to be able to recognize myself in the mirror,” says Kwong.
He said that now more than a month after his ordeal began, his arms and legs are finally healing. The cuticles and skin on the hands have been shed and are in the process of regeneration, while the nails have darkened and begun to fall off.
Kwong said the psychological damage will take longer to heal. “I feel less helpless, because it was a disease that weakened me so quickly. So I tend to work more on my mental state than my physical state.
This story is part of a coalition that includes KPCC, NPR and KHN.
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