An Mpox Patient Told Us How He Navigated Testing, Treatment, and Recovery

When Kyle Planck first came down with a fever and flu-like symptoms after celebrating Pride in late June, he suspected COVID-19. Three negative rapid tests later, he began to fear that mpox (formerly known as monkeypox) was the true culprit.

Several days later, small red splotches popped up on his fingers and arms, confirming his hunch.

As a gay man and sixth-year pharmacology PhD candidate at the Weill Cornell Graduate School of Medical Sciences in New York City, Planck had been paying attention to mpox since the beginning of the current outbreak. Now, he’s among the almost 2,000 people who have tested positive for the disease in the United States.

After two weeks of at-home isolation, medication, and sleepless nights, Planck is finally on the other side. While each person’s experience with mpox is unique, Planck said that sharing his story may help others recognize the symptoms of mpox and get the care they need.

“The pain that can be associated with monkeypox is very intense—it’s a very unpleasant experience. But you will come out on the other side,” Planck told Verywell. “It’s a very long disease course and it really sucks when you're in the middle of it, but it will get better.”

The Path to Diagnosis

In the days following Pride celebrations, Planck began to suspect he had been infected with a sexually transmitted infection (STI) and took a full panel test. But when he came down with a fever and body aches, he contacted his doctor about whether he might be infected with mpox, too. 

Mpox has long been studied in West Africa, where it is endemic. But due to its extreme rarity in the rest of the world, U.S. clinicians were largely in the dark about the signs of the disease and how it spreads.

“I generally trust my PCP a lot, but I could tell that he didn’t really have a lot of knowledge about [monkeypox.] I don't fully blame him for that,” Planck said.

Mpox is considered a differential diagnosis disease, which means that providers run through various possible reasons why a patient may be experiencing certain symptoms before landing on mpox.

Planck divulged much of the relevant information about his worrisome symptoms and social activities in an email to his doctor. But for some patients, sharing details about their sexual intimacy with a health provider may feel uncomfortable or invasive.

“The kinds of questions that are important for assessing monkeypox risk are the kinds of things that healthcare providers may be hesitant to ask and patients might be hesitant to answer because they have to do a lot with sexual activity and identity,” Planck said. “Some people are not super comfortable talking about being gay or being bisexual and with their healthcare providers.”

He reached out to a friend who got him an appointment at the travel medicine clinic at Weill Cornell. Through a connection with the CDC, the providers there were able to order him an mpox test. Now, patients can get tested directly through their health providers, and the CDC is working to make laboratory testing more widely available.

There was a six-day lag between when Planck was sampled and when he received the positive result, partially due to a holiday weekend. But by that point, lesions had popped up across his body and Planck was certain of his diagnosis.

Disease Course and Treatment

About a week into his illness, Planck learned that he qualified for tecovirimat, an antiviral drug designed to treat smallpox. Also called TPOXX, the drug is not yet approved by the FDA for use in mpox patients but can be given to people with severe disease, or at risk of severe disease, from mpox.

Planck was able to access the drug because he qualified for a CDC study in which he recorded the symptoms and side effects he experienced each day of a 14-day treatment course.

“You have to go through a zillion hoops to get this treatment, which makes it really inaccessible for a lot of people,” Planck said. “It is something that's definitely very limited and there's a lot of red tape right now.”

The CDC considers tecovirimat to be an “investigational new drug.” This means only those willing to participate in a research study of the drug can access it, despite there being more than a million doses in the National Strategic Stockpile. 

“Within a couple of days of starting that medication, I was in a lot of severe pain—not really from the lesions on my skin, but from the internal lesions that I had developed. They were super, super painful,” Planck said.

In conversations with others who have or had mpox, Planck said the pain caused by internal lesions on sensitive parts of the body–like the rectum, throat, gums, and penis—are a unifying factor. These lesions often caused him to lose sleep and hindered day-to-day activities.

“I was prepared for the spots to be on my arms and to have to put band-aids on them to cover them up,” Planck said. “But I was not prepared to have to take a warm bath six times a day because that was the only thing that would make me feel better.”

Planck began the treatment course a week after getting sick. His pain quickly diminished and half the lesions shrunk in size, he said. Typically, mpox lesions turn to scabs and fall off when they heal. In this case, Planck said they were “literally disappearing” into his skin. He’s waiting for the remaining lesions to scab over and fall off so he can end his isolation.

Looking back, he said he’s glad his case was mild enough to keep him out of the hospital. But the disruption of his day-to-day life and isolation period, he said, were “a struggle.”

The Power of Community for Navigating Mpox Isolation

The CDC recommends that people who develop an unexpected rash or experience other early symptoms, like swollen glands and fever, stay home except to get tested.

Under the right conditions, the mpox virus can survive on surfaces for weeks. To avoid infecting his roommate, Planck said he “meticulously” cleaned the bathroom after he showered and was careful to avoid infecting other items.

Fortunately, a friend offered up a spare bedroom and bathroom where he could isolate without fear of contamination. Despite being in “an extremely privileged” housing situation, the necessary reliance on services like food delivery was “not exactly cheap,” Planck said. For people who must work in person or don’t have the means to adequately care for themselves while in isolation, the experience may be even more challenging.

While his medical providers helped connect him with testing and treatment, Planck said knowledge about home remedies and at-home pain relief came largely through what he calls "a chain of advice" from friends and peers who had been sick.

As soon as he shared his diagnosis publicly, people reached out to him about their own experiences, sharing advice to take Epsom salt baths or use certain topical creams. Planck emphasized the power of community support when sick with mpox—he recommends asking people in your networks to help deliver groceries or pick up prescriptions.

Sexual Health Clinics Are on the Frontline

Mpox can affect anyone, but it’s circulating most among men who have sex with men, CDC Director Rochelle Walensky told the press in a call last week.

Without asking questions about social and sexual interactions, important information may be missed.

“I felt it was so important to share my story online because I knew that there were a lot of people who are going through the same thing as me, but it’s difficult to talk about. As someone who doesn’t find it difficult to talk about, I was like ‘okay I have an opportunity to share with people what’s going on,’” Planck said.

He added that you can “argue the semantics of whether or not it’s sexually transmitted.” But ultimately, mpox symptoms are cropping up in genital regions and often as a consequence of sexual activity.

Planck said he is inspired to see that vaccines are being offered in sexual health clinics to adequately offer health care to the LGBTQ+ community. Providers at these clinics are often seen as less judgmental when it comes to STIs, he said.

“I think that sexual health clinics play a huge part in this and will continue to, and they’re usually unfortunately understaffed and don’t have as many resources available as they should,” he added.

Planck said he was contacted by the New York Department of Health 14 days after his lesions were tested, though he chalked up the delay to a lack of sufficient resources. He tracked down everyone he would have interacted with and told them to be on the lookout for mpox symptoms.

Particularly in the early days of the current outbreak, health officials placed significant emphasis on information campaigns, to educate providers and the public about the disease. Now, as people struggle to get vaccine appointments and tests, Planck said he hopes for greater emphasis on getting people the physical care they need.

“We already know about monkeypox. What are you doing to make sure we can get vaccinated? What are you doing to make sure that we can get treated if we get sick? What are you doing to ensure that I can pay my bills if I have to stay home from work for three weeks?” Planck said.

“Those are the kinds of things that are materially affecting people right now. There’s kind of a gulf between that and what we’re hearing from officials.”