‘I literally cried out in pain’: Two weeks of monkeypox hell | monkeypox

I had monkeypox and it was a complete nightmare.

When the New York Pride festivities kicked off on June 24, I was aware that monkeypox was an emerging problem—particularly for gay men—but I also had the impression that the number of cases in the city was relatively small. What I didn’t understand was how bleak the testing capacity was: At that point, the city only had the ability to process ten exams a day.

I had sex with several men over the weekend. Then a week later, on July 1, I started to feel very tired. I had a high fever with chills and muscle aches, and my lymph nodes were so swollen that they were protruding two inches from my throat.

First, I took a self-test for Covid: negative. Then I began to suspect monkeypox. You messaged a friend: I’m just sitting here waiting for the rash to start.

I am a 39 year old male from Sweden, I live in Brooklyn and do charity work. Over the past decade, my work has primarily focused on sexual and reproductive health and rights, so I’ve followed the outbreak from the start. I even tried to vaccinate when New York City launched an initial vaccination campaign on June 23. But like the vast majority of other New Yorkers who have tried to get a date, I have had no luck.

Two days after symptoms began, the rash began as anal lesions — painful sores in the anus and rectum. At first it was stinging and itchy. I wasn’t afraid at this point. I was told it would be mild, and I was a perfectly healthy person with no underlying conditions. But I had no idea how bad it was.

Sebastian Kuhn, a 39-year-old New Yorker who contracted monkeypox. Photo: Courtesy of Sebastian Kon

I had a telehealth visit with my primary care physician (PCP) and agreed to take the test. So I went to urgent care. I had all the symptoms of monkeypox and fortunately no one wondered if I should get tested or not. I also ordered a full STI board.

You wanted the antiviral drug that is used to treat monkeypox, TPOXX, but you need a positive test result first. So they sent me home with Tylenol. (European regulators have approved TPOXX as an effective treatment for monkeypox, but the U.S. Food and Drug Administration has only approved it to treat smallpox. The CDC maintains TPOXX stock and permits its “compassionate use” during monkeypox outbreaks.)

After I got home, the rash started spreading, and I started to get anxious. I’ve had pests literally everywhere; They start out like mosquito bites before developing into blisters that will eventually burst, and then finally scab before leaving a scar. I put them on my skull, on my face, my arms, my legs, my feet, my hands, my torso, and my back, and five on my right elbow. At the peak, I had over 50 lesions, a 103°F fever and excruciating pain, which led to a panic attack. Ironically, the only place I had no lesions was my penis.

The next day I got an STD result: positive for gonorrhea. But there is no word yet on monkeypox. That was when I had rashes all over my body from my neck down, as well as headaches, arthritis pain in my fingers and shoulders, and strange pain in my shinbone that became so painful that I couldn’t stand. At night, I’d wake up crazy with all of the pain and itching from lesions and hives, and sit in bed and scratch myself. I was withdrawn, lonely and frustrated at how unfair the situation was. I was obviously very ill, but I had to make a plan of care on my own.

Anal lesions, which were already very painful, turned into open wounds. It felt like I had three incisions right next to each other, and it was very painful. I was literally screaming loudly when I went to the bathroom. Even keeping the area clean, like washing myself, was very painful. The process took two hours each time.

Four days after testing – I got a call from urgent care that I tested positive for monkeypox. But they did not give me any information other than that. So I started calling to find out how I can access the antivirals. I knew the CDC had put in place guidelines on who should be considered for treatment, and that would include people with anorectal lesions, throat lesions, and skin conditions, which I did.

But I was just referred in circles. I was calling Urgent Care, who asked me to call the Department of Health. The Department of Health might say, “Oh no, your PCP should be ordering treatment for you.” Then I called my main provider, and they were like, “We can refer the case to the Department of Health, but just so you know, they’re denying most of our requests, so don’t get your hopes up.”

People are waiting in line to receive the monkeypox vaccine.
People are waiting in line to receive the monkeypox vaccine. Photo: Kina Bettencourt/AFP/Getty Images

Then my throat started to swell. The tonsils were covered with white pus. I did a video with someone in my primary care provider’s office and they said, “I think you should go to the emergency room.” The emergency department determined it was bacterial tonsillitis, and they gave me a shot of antibiotics. But when I asked them for the antivirals, they said they wouldn’t give it to me because they only gave it to people with severe immunodeficiency. I told them, “These are not the Centers for Disease Control and Prevention’s treatment guidelines.” They didn’t have them, and they laid me off at 2 am. I was incredibly frustrated.

The next evening, I finally got a call from a clinic at Columbia University Irving Medical Center. They said the health department asked them to take over my case. So this was apparently how I was one of the lucky few to receive a treatment call. Since the drug has not been extensively tested in humans, there is significant informed consent and intake process. I spent about an hour in the clinic and came out with a two week supply of TPOXX. I was very comfortable.

You should take three pills every 12 hours, on a high-fat diet. I eat a lot of bacon and whipped cream, which is the second best thing about this treat. The lesions are starting to dry up very quickly and now I only have three small scales left. Only in the past two days have I been able to go to the bathroom without pain.

Hand holding a medicine bottle
Kyle Blank, 26, who has recovered from monkeypox, shows a bottle of Tecovirimat, which is used to treat monkeypox. Photo: Yuki Iwamura/AFP/Getty Images

I am still in isolation. I can’t tell you how sick my apartment is now. I am a very special person because I have the resources to order food and medicine and have it delivered to my door. I have a sink in my apartment, so I can wash my bed sheets and clothes. I know other people who really struggle with isolation because they don’t have the situation I’m in.

The day after treatment began, July 13, I finally got a call from a contact tracer from the Department of Health, who said I might have been exposed to monkeypox on June 26. I told her I already had monkeypox, and she asked me about my symptoms. The call lasted about half an hour and she was clearly reading a text. Then she said, “Okay, thanks for your time, get well,” and then ended the call. She didn’t even ask me what contacts I had.

This whole thing seems like a fiasco that should not be allowed to happen, especially two and a half months into the outbreak. If someone like me, who has been in sexual health for a long time, has had a hard time navigating care, I can’t imagine other people doing that. I know many people who sit at home in excruciating pain because they don’t get the support they need.

I am very concerned that we are getting close to the point that this will be another endemic disease, especially among gay men, if we haven’t already crossed that point. I’m worried we’ll be stuck with her forever.

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