Two days after Kevin Kwong flew back to California from New York, his hands were so itchy that he woke up from his sleep. He thinks the problem is eczema.
“Everything started to deteriorate rapidly,” said the Emeryville, California resident. “I started getting more spots on my face, more redness, and it started oozing fluid. The rash expanded to my elbows, hands and ankles.”
Mr. Kwong, 33 Made six virtual appointments with doctors and nurses, a call to a nurse hotline, a trip to an urgent care center, a clinic, two emergency room visits and two emergency room visits before an infectious disease specialist diagnosed him with monkeypox in early July. Two misdiagnoses.
Despite two tests, he never tested positive.
As the number of monkeypox cases in the U.S. has surged over the past month, the public health system is working to communicate the dangers of the virus and distribute limited vaccine supplies to vulnerable populations. But the problem extends further. Potentially infected people encounter dead ends, delays, misdiagnosis and inappropriate treatment in dealing with an unprepared and poorly informed healthcare system.
The once unknown virus has hospitals racing to teach emergency room workers how to properly identify and test for it. Dr. Peter Chin-Hong, an infectious disease specialist at the University of California, San Francisco, who ultimately diagnosed Kwong, said his case was a turning point for the study hospital.
In the middle of the night when there are not many resources. So I think after his case, we’re getting more education about the general situation. But I don’t think your general clinician always knows what to do,” Chin-Hong said.
Monkeypox is caused by a virus from the same family as smallpox, although it is not contagious Sexual or fatal. Typically, the patient develops a fever, muscle aches, and then a rash on the face, mouth, hands, and genitals that can last for weeks.
The current outbreak is being passed from person to person Transmission – Human contact, such as touching a lesion, or exchanging saliva or other bodily fluids. People can also become infected by touching objects or surfaces (such as sex toys or sheets) that are shared with a sick person.
U.S. The first monkeypox case of this 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, plus Washington, D.C. and Puerto Rico.
California Gov. Gavin Newsom declared a state of emergency Monday to coordinate the response and bolster the state’s vaccination efforts. About half of California’s 1,135 monkeypox cases are concentrated in the San Francisco Bay Area.
While anyone can be infected, the outbreak appears to have primarily affected men who have sex with men. Kwong said he may have contracted monkeypox during a sexual encounter during a New York Pride event.
“This is the first ever outbreak across continents, so it’s not going away,” said Andrew Noymer, a partner at UC Irvine Professor of Infectious Disease Research.
“It’s not going to be an outbreak like Covid-19, but this outbreak will have legs,” he said. “It’s probably like syphilis, it’s here to stay. “
But most doctors don’t know how to recognize it. When Kwong started showing symptoms in late June, most of the doctors and nurses he spoke to during a virtual visit didn’t even mention it Monkeypox. This does not come as a surprise to Dr. Timothy Brewer, professor of medicine and epidemiology at UCLA.
“Although over the past 25 years, I have Having worked on and off in a sub-Saharan African country, I actually never treated a case of monkeypox,” Brewer said. “Before this outbreak, monkeypox was a very unusual disease. “
A rash limited to the genital or rectal area can be mistaken for an STI. But even if doctors aren’t trained to recognize monkeypox, Brewer said their advice to patients may be Help control the spread. Be cured and treated,” Brewer said.
While many cases are mild and resolve on their own, some can quickly become severe – such as Kwong’s.
“Your body is taken over by this thing you don’t understand. And you have nowhere to go, so it’s painful and scary,” Kwong said.
Kwong initially treated the rash with his topical steroids for eczema. When that didn’t work, he attended an online appointment with a nurse who diagnosed him with herpes and prescribed an antiviral drug.
Over the next few hours, the rash quickly spread to more parts of his body. Panicked, Kwong went to an urgent care clinic. The doctor agreed with the diagnosis of herpes, adding: Scabies, a rash caused by mites burrowing into the skin. “My spots are concentrated on my hands, wrists, feet and elbows, which are the main areas of scabies,” Kwong said.
Urgent care doctors considered monkeypox, but Kwong’s spots were clustered together and looked different from the picture the doctor saw of the monkeypox rash. “I got different answers depending on where I developed symptoms and who I talked to,” Kwong said.
Kwong frantically contacted him during the July 4 holiday weekend when his symptoms worsened , ideas might be helpful.
“I tried to contact the doctor, a friend of a friend I know of a dermatologist friend,” he said. “Every time I talk to someone, my condition deteriorates rapidly. It’s really weird.”
In another virtual appointment, in the middle of the night, a nurse noticed that a rash had developed to his Eyes spread and he was told to go to the emergency room immediately. At the Alta Bates Summit Medical Center in Auckland, doctors said Kwong may have monkeypox.
Call the CDC. As a patient, I wish I was in the dark, but I didn’t realize how little information was given to providers and they weren’t prepared,” he said.
He 12 hours in the ER where nurses swabbed his lesions for monkeypox tests. If he had a fever or started vomiting, they told him to come back.
“At this point, I am very pain. I have sores on the back of my throat, in my mouth, all over my body,” he said. “I’m just insane because I don’t sleep more than an hour or two at any one time.
Later that evening, Kwong decided to go to UCSF Medical Center. He heard from a friend that UCSF Health was treating monkeypox cases, and a virtual nursing nurse urged him to go.
When he arrived, he was separated from the other patients and received oxycodone.
The next day, Chin-Hong started treating Kwong for monkeypox. “I Think, wow, this is really a very, very broad disease,” Chin-Hong said. “I’ve seen other monkeypox cases before, but in very limited numbers. I would say Kevin is probably in the top 5% of disease severity. “
Because the rash was close to Kwong’s eyes, Chin-Hong was worried that if left untreated, he might go blind. He prescribed Tecovirimat, an antiviral drug under the brand name TPOXX, which has obtained Special clearance from the FDA to treat monkeypox in some cases.
After the first day of medication, Kwong noticed that his rash stopped spreading. Over the next two days, hundreds of The swollen spots turned into red discs. “I was shocked at how quickly Kevin was progressing. It’s almost like he’s a turbo rocket recovering,” Chin-Hong said.
When Kwong started rehab, he got his first test result: negative. Then the second A: Negative.
Chin-Hong said health workers may not have rubbed his lesions hard enough to get live cells for monkeypox testing. A really good sample is obtained in the lesion 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 testing is incorrect. Brewer said the Centers for Disease Control and Prevention provides clinical Online resources provided by physicians are sufficient, but only if you take the time to read all 59 pages.
Clinicians need to collect at least two samples from multiple sites on patients, he said. Brewer said , the key is to sample lesions that are “at different stages of development” rather than just focusing on the early lumps.
For two weeks, Kwong has been taking six antiviral pills a day to rid his body of the virus He no longer needs painkillers. “My face was the first to heal, and I think it’s been very helpful for me to be able to recognize myself in the mirror again,” said Kwong.
Since the ordeal started, Kwong’s hands and feet finally healed. He said the cuticle and skin on his hands were falling off and growing back, while his nails had turned black and started to fall off, he said. “Overcome.” I feel less invulnerable because it is a rapidly debilitating disease. So I’m still trying to study my mental state rather than my physical state. “
This story is part of a partnership that includes KPCC, NPR and KHN.