By Jackie Fortiér - KPCC/LAist, via
Kaiser Health News
Two days after returning from New York to his home in California, Kevin Kwong's hands were so itchy that he woke up from the pain.
He thought it was eczema.
"Everything got worse quickly," the Emeryville resident said.
“More spots appeared, on the face, and fluids began to come 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,
an infectious disease specialist diagnosed Kwong, of 33 years old, monkeypox
in early July.
Despite taking two tests, he never tested positive.
It took multiple telehealth appointments, visits to urgent care clinics and emergency rooms before Kevin Kwong was diagnosed with monkeypox by an infectious disease specialist.Kevin Kwong
As the number of cases has skyrocketed in the United States in the past month, the public health system is scrambling to spread the danger of the virus and distribute a limited supply of vaccines to vulnerable people.
But the problem goes beyond that.
People who may be infected face dead ends, delays, misdiagnosis, and inadequate treatment as they navigate an unprepared and ill-informed health care system.
This little-known virus has hospitals scrambling to train emergency personnel how to correctly identify and test it.
Dr. Peter Chin-Hong, the infectious disease specialist at the University of California-San Francisco who ultimately diagnosed Kwong, said his case was a turning point for his hospital.
[United States Declares Monkeypox Public Health Emergency
]
“Kevin arrived in the middle of the night, when there weren't many resources available.
So I think after his case, we are becoming better educated about the disease.
But I think
doctors don't always know what to do
,” Chin-Hong noted.
What is it and how does it spread?
Monkeypox is caused by a virus in the same family as smallpox, although it is not as transmissible or deadly.
Typically, patients have a fever, muscle aches, and then a rash on the face, mouth, hands, and possibly the genitals that can last for several weeks.
The current outbreak is spread by person-to-person contact, such as touching a wound 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 disease.
Kevin Kwong, 33, was diagnosed with monkey pox in July in California.Kevin Kwong
The first case of monkeypox in the United States was reported on May 17, and since then the number has risen to more than 6,300 probable or confirmed cases representing nearly every state, plus Washington, D.C., and Puerto Rico. Rich.
California Governor Gavin Newsom declared a state of emergency on August 1 to coordinate the response and bolster the state's vaccination efforts.
About half of the 1,135 cases in California have been concentrated in the San Francisco Bay Area.
Although anyone can become infected, the outbreak appears to have largely affected men who have sex with men.
Kwong explained that he likely contracted monkeypox from a sexual encounter during New York Pride events.
"This is the first multicontinental outbreak in history, so it's not just going to go away," said Andrew Noymer, a professor at the University of California-Irvine who studies infectious diseases.
"This is not going to explode like COVID, but this outbreak is going to have its course," he added.
"It may become like syphilis and stay."
A "very unusual" disease
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 he spoke with during virtual visits didn't even mention monkeypox.
That's not surprising to Dr. Timothy Brewer, a professor of medicine and epidemiology at UCLA.
“Although I have worked on and off in various sub-Saharan African countries for the past 25 years, I have never treated a case of monkeypox,” explained Brewer.
"Before this outbreak, it was a very unusual disease."
[Monkeypox has the potential to become a new sexually transmitted disease]
A rash limited to the genital or rectal area can be mistaken for a sexually transmitted infection.
But, according to Brewer, even if doctors haven't been trained to recognize monkeypox, their advice to patients could help contain the spread.
"They should advise against sexual activity until their injuries are healed and treated," Brewer said.
They send to the US a million vaccines against monkeypox whose infections are growing
Aug. 1, 202200:23
While many cases are mild and resolve on their own, some quickly escalate, like Kwong's.
“Your body is being invaded by this thing that you don't understand.
And you have nowhere to go, so it's painful and scary," Kwong said.
At first, Kwong treated the rash with the topical steroids he uses for eczema.
When that didn't work, he had an online appointment with a nurse who diagnosed him with herpes and prescribed an antiviral drug.
In the hours that followed,
the rash quickly spread to more parts of her body
.
Alarmed, Kwong went to an emergency clinic.
The doctor agreed with the diagnosis of herpes and added another: scabies, a rash caused by mites that burrow into the skin.
"My spots were concentrated on the hands, wrists, feet and elbows, which are prime sites for scabies," Kwong said.
This doctor thought of monkeypox, but Kwong's spots were clustered together and looked different from the pictures of the rash that this doctor was familiar with.
“Depending on where I was with my symptoms, and who I talked to, I would get different responses,” Kwong said.
"I didn't know what was happening to me"
Over the Fourth of July weekend, "I tried to contact doctors, I knew friends of friends who were dermatologists," he added.
“Every time I talked to someone, it would quickly get 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 eyes and told her to go to the emergency room immediately.
It was there, at Oakland's Alta Bates Summit Medical Center, that doctors said Kwong might have monkeypox.
“They were investigating while I was in the room, 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
too,” she said.
He spent 12 hours in the emergency room, where nurses tested him for monkeypox.
They told him to come back if he had a fever or started vomiting.
“At that time, I felt very bad.
I had sores in the back of my throat, in my mouth, all over my body,” she said.
"I was just delusional because I couldn't sleep more than an hour or two at a time."
[The "nightmare" of this New York resident infected with monkeypox illustrates how ill-prepared the health system is (again)]
Later that night, Kwong decided to go to the University of California-San Francisco (UCSF) Medical Center.
He had heard from a friend that UCSF Health was treating cases of monkeypox, and a virtual care nurse had told him to go there.
When he arrived, he was separated from the other patients, given oxycodone for the pain, and tested.
They believe that sheets, towels or close contact caused the cases of two children with monkeypox
July 31, 202202:33
The next day, Chin-Hong began treating Kwong 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.”
Since the rash was close to Kwong's eyes, Chin-Hong feared he could go blind if the disease was not treated.
He prescribed Tecovirimat, an antiviral drug branded as TPOXX, which has received special authorization from the FDA to treat monkeypox under certain circumstances.
path to healing
After the first day of treatment, Kwong noticed that the rash had stopped spreading.
Over the next two days, the hundreds of swollen spots flattened into red disks.
“I was surprised how quickly Kevin improved.
It was like a turbo-rocket on the way to recovery,” explained Chin-Hong.
As Kwong began to heal, he received his first test result: negative.
Then the second: negative.
Chin-Hong said it's possible that those who took the samples from the lesions hadn't rubbed hard enough to get live cells for testing.
“As a doctor, it is very difficult to obtain a good sample in these types of injuries because the patient usually feels pain.
And you don't like to see people suffer," Chin-Hong said.
Cases like Kwong's can go unnoticed if the tests are not done correctly.
The online resource for doctors provided by the CDC is adequate, Brewer said, but only if you take the time to read all 59 pages.
They ask men who have sex with other men to reduce them due to monkeypox
July 27, 202200:27
Doctors need to collect at least two samples from various places on the patient's body, he added.
According to Brewer, the key is to sample lesions "at different 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.
She no longer needs pain medication.
"My face was the first to heal, which helped me a lot to be able to recognize myself in the mirror
," said Kwong.
He said that now that more than a month has passed since his ordeal began, his hands and feet are finally healing.
The cuticles and skin on the hands have sloughed off and are in the process of regeneration, while the nails have turned black and started to fall off.
Kwong said the psychological damage will take longer to heal.
“I feel less invulnerable, because it was a disease that weakened me very quickly.
So I keep working on my mental state more than my physical one.”
KHN (Kaiser Health News) is the newsroom of KFF (Kaiser Family Foundation), which produces in-depth health journalism. It is one of three major programs of KFF, a nonprofit organization that analyzes the nation's health and public health issues.
This story is part of an alliance that includes KPCC, NPR and KHN.