‘I literally screamed in pain’: My two weeks of monkeypox hell

I caught monkey pox and it was a total nightmare.

When the New York Pride festivities kicked off on June 24, I was aware that monkeypox was an emerging problem – especially for gay men – but I also felt that the number of cases in the city was relatively weak. What I didn’t understand was how absolutely dismal the testing capacity was: at that time, the city only had the capacity to process ten tests a day.

I had sex with several guys 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 they protruded two inches from my throat.

I first did a Covid self-test: negative. Then I started suspecting monkeypox. I texted a friend: I’m just sitting here waiting for the eruption to start.

I am a 39 year old male from Sweden, living in Brooklyn and working in philanthropy. Over the past decade my work has focused on sexual and reproductive health and rights, so I have followed the epidemic from the very beginning. I had even tried to get vaccinated when New York City launched its first vaccination campaign on June 23. But like the vast majority of other New Yorkers who tried to get a date, I was unlucky.

Two days after my symptoms started, the rash started as anorectal lesions – painful sores on my anus and rectum. At first it was a tingling and itching sensation. I was not afraid at that time. I was told it would be mild and that I was a perfectly healthy person with no underlying conditions. But I had no idea how serious the situation was.

Sebastian Kohn, a 39-year-old New Yorker who contracted monkey pox.
Sebastian Kohn, a 39-year-old New Yorker who contracted monkey pox. Photography: Courtesy of Sebastian Kohn

I had a telehealth visit with my primary care physician (PCP) and she agreed that I should get tested. So I went to the emergency room. I had all the symptoms of monkeypox and luckily no one questioned whether or not I should be tested. I also requested a full STI panel.

I 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 FDA has only approved it to treat smallpox. The CDC maintains a stockpile of TPOXX and allows its “compassionate use” during smallpox outbreaks. monkey.)

After I got home the rash started spreading and I started feeling anxious. I developed lesions literally everywhere; they started out looking like mosquito bites before turning into pimple blisters that would eventually burst, then eventually scab over before leaving a scar. I had some on my head, face, arms, legs, feet, hands, chest, back and five just on my right elbow. At the peak, I had over 50 lesions, a fever of 103F and severe pain, causing a panic attack. Ironically, the only place I didn’t have lesions was my penis.

The next day I got my STI results: positive for gonorrhea. But no word yet on monkeypox. That’s when I developed hives all over my body, from neck to feet, along with headaches, arthritic pain in my fingers and shoulders, and a weird shin pain that became so painful that I couldn’t get up. At night I woke up crazy with both pain and itching from lesions and hives, just sitting up in bed and scratching myself. I was isolated, alone and frustrated by the unfairness of the situation. I was clearly very ill, but I had to concoct a care plan myself.

My anorectal lesions, already very painful, turned into open sores. It felt like I had three cracks side by side, and it was absolutely excruciating. I was literally screaming out loud when I went to the bathroom. Even keeping the area clean, like washing myself, was extremely painful. It was a two hour process each time.

Four days after my test, I received a call from emergency care that I had tested positive for monkeypox. But they gave me no information beyond that. So I started calling to see how I could get access to antivirals. I knew the CDC had issued guidance on who to consider for treatment, and that included people who had anorectal lesions, throat lesions, and skin conditions, which I did.

But I was just referred in circles. I called 911, who told me to contact the health department. The Department of Health would say, “Oh no, your PCP has to request treatment for you. Then I would contact my PCP, and they would say, ‘We can take it to the Ministry of Health, but just so you know, they refuse most of our requests, so don’t get your hopes up.

People line up to receive the Monkeypox vaccine.
People line up to receive the Monkeypox vaccine. Photograph: Kena Betancur/AFP/Getty Images

Then my throat started to swell. My tonsils were covered in white pus. I made a video with someone in my PCP office and they said, “I think you should go to the ER.” ER determined it was bacterial tonsillitis and they gave me a round of antibiotics. But when I asked them for antivirals, they said they wouldn’t give them to me because they only give them to severely immunocompromised people. I told them, “That’s not CDC treatment guidelines.” They didn’t want it and they fired me at 2 am. I was incredibly demoralized.

The next evening, I finally got a call from a clinic at Columbia University’s Irving Medical Center. They said the DoH asked them to look into my case. So that’s apparently how I was one of the lucky few to be invited for treatment. Since the drug has not been extensively tested in humans, there is a fairly extensive consent and admissions process. I spent about an hour at the clinic and came out with a two week supply of TPOXX. I was so relieved.

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 started to dry out very quickly and I only have three small scabs left. It’s only been a few days since I was able to go to the bathroom without pain.

A hand holding a medicine bottle
Kyle Planck, 26, who has recovered from monkeypox, shows a bottle of Tecovirimat, which is used for the treatment of monkeypox. Photograph: Yuki Iwamura/AFP/Getty Images

I am still in isolation. I can’t tell you how fed up I am with my apartment right now. I am quite a privileged person in that I have the resources to order food and medicine and have it delivered to my doorstep. I have a laundry in my apartment, so I can wash my sheets and my clothes. I know other people who really struggle with isolation because they don’t have the same situation as me.

The day after starting treatment, July 13, I finally got a call from a health department contact tracer, who told me that I may have been exposed to monkeypox on June 26. I told her that I already had monkeypox and she asked me about my symptoms. The call lasted about half an hour and she was obviously reading from a script. Then she said, “Okay, thanks for your time, get well,” and hung up. She didn’t even ask me what contacts I had had.

It all sounds like a huge failure that shouldn’t have happened, especially not two and a half months into the outbreak. If someone like me, who has been in the sexual health field for a long time, has had such a hard time navigating care, I can’t imagine anyone else doing it. I know several people who just sit at home in excruciating pain because they don’t get the support they need.

I’m pretty worried that we’re getting close to the point where this will be another endemic disease, especially among gay men, if we haven’t passed that point already. I’m afraid we’re stuck with this forever.

#literally #screamed #pain #weeks #monkeypox #hell

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