“I Screamed Out Loud”: Two Weeks of Monkey Hell | monkey pox

I got monkeypox and it was a nightmare.

When the New York Pride festivities began on June 24th, I knew monkeypox—especially for gay men—was an emerging issue, but I felt that the number of cases in the city was relatively low. What I didn’t realize was how poor the testing capacity was: at the time, the city was only able to process ten tests per day.

I had sex with several guys over the weekend. Then a week later, on July 1st, I started to feel really tired. My body was shaking, my muscles ached, and my lymph nodes were so swollen that they protruded two inches from my throat.

First, I had a Covid self-test: negative. Then I began to suspect monkey disease. I wrote to my friend: I’m sitting here waiting for the rash to start.

I’m a 39-year-old man from Sweden, living in Brooklyn and doing charity work. For the past decade, my work has focused primarily on sexual and reproductive health and rights, so I’ve seen the epidemic from the beginning. When the first vaccination campaign started in New York City on June 23rd, I tried to get vaccinated. But like the vast majority of other New Yorkers who tried to go on a date, I had no luck.

Two days after my symptoms started, the rash started as anorectal ulcers – painful sores in my anus and rectum. At first it was an itchy, itchy sensation. I wasn’t afraid at this point. I was told it would be mild and I was a perfectly healthy person with no conditions. But I didn’t know how bad it would be.

Sebastian Cohn is a 39-year-old New Yorker who has monkeypox. Photo: Courtesy of Sebastian Kohn

I went to telehealth with my primary care physician (PCP) and he agreed to test me. So I went to the emergency room. I had all the symptoms of monkeypox and luckily no one asked if I should get tested. I also requested a full panel of STDs.

I would like to take TPOXX, an antiviral drug used to treat monkeypox, but I need a positive test result first. So they make me feel at home with Tylenol. (European regulators have approved TPOXX as an effective treatment for monkeypox, but the FDA has approved it only for the treatment of smallpox. The CDC maintains a stockpile of TPOXX and allows it for “compassionate use” during monkeypox outbreaks.)

After going home, the rash spread and I started to worry. I developed sores literally everywhere; They turn into pimple-like blisters that look like mosquito bites, and eventually scab over to leave a scar. I had them on my skull, face, arms, legs, feet, arms, torso, back and five on my right elbow. At the peak, I had over 50 lesions, a fever of 103F and extreme pain and panic attacks. The strange thing was that there were no sores on my penis.

The next day, my STD results came back: positive for gonorrhea. But there is no word yet on monkey disease. I then developed hives all over my body from the neck down, headaches, arthritis in my fingers and shoulders, and a strange pain in my pelvis that made me unable to stand. At night I would wake up crazy, sore and itchy from sores and hives, and sit up in bed and scratch myself. I felt isolated and alone and resentful of the unfairness of the situation. I was very sick, but I needed to make a plan for my own care.

My already painful anorectal ulcers turned into open sores. I felt like I had three cracks next to each other and it was very intense. I screamed loudly when I went to the bathroom. Even keeping clean, like washing myself, was very painful. It was a two-hour process each time.

Four days after my test – I got a call from the emergency room and tested positive for monkeypox. But they didn’t give me any other information. So I started calling to see how I could get access to antiviruses. I knew that the CDC guidelines for who should be considered for treatment included people with anorectal ulcers, esophageal ulcers, and dermatologic conditions.

But I was just approached from circles. I would call an ambulance, they told me to go to the health department. The Department of Health says, “No, your PCP has to ask you to treat it.” Then I contacted my PCP and they said, “We can take the case to the health department, but you know, they deny most of our requests, so don’t get your hopes up.”

People line up to get the monkeypox vaccine.
People line up to get the monkeypox vaccine. Photo: Kena Betancourt/AFP/Getty Images

Then my throat began to swell. Tonsils were filled with white pus. I did a video with someone at the PCP’s office and they said, “I think you need to go to the ER.” The ER diagnosed it as bacterial tonsillitis and they gave me antibiotics. But when I asked them for antiviral medicine, they told me that they would not give it to me because they only gave it to people with severely compromised immune systems. I told them, “These are not CDC treatment guidelines.” They weren’t there, and they released me at two o’clock in the morning. I was incredibly demoralized.

The next evening I received a call from the clinic at Columbia University Irving Medical Center. They said that Doh asked to take over my case. So I guess I was one of the lucky ones who was invited to the treatment. Because the drug has not been extensively tested in humans, there is a significant informed consent and acceptance process. I was in the clinic for about an hour and left with a two week supply of TPOXX. I was so relieved.

Take three tablets every 12 hours with a high-fat diet. I’m eating a lot of bacon and whipped cream, which is the second best part of this treat. The sores dried up quickly and I was left with only three small scabs. Only in the last two days have I been able to go to the bathroom without difficulty.

A hand holding a medicine bottle
Monkey pox survivor Kyle Plank, 26, shows a bottle of Tecovirimate, used to treat monkey pox. Photo: Yuki Iwamura/AFP/Getty Images

I’m still in isolation. I can’t tell you how sick I am of my apartment right now. I am a very privileged person because I have the resources to order food and medicine and have it delivered to my door. I have a laundry room in my apartment, I can wash my sheets and clothes. I know other people who really struggle with isolation because they don’t have the same situation I had.

The day after I started treatment, on July 13th, I received a phone call from a contact seeker from the health department saying that I might have contracted monkeypox on June 26th. I told him I already had monkeypox and he asked about my symptoms. The call lasted half an hour and he was clearly reading the script. Then he said, “Okay, thanks for your time, get well” and hung up. He didn’t even ask me about my connections.

It all feels like a colossal failure that shouldn’t have been allowed, especially not for two and a half months. If someone who has worked in the sexual health field like me for a long time struggles with care, I can’t imagine that other people do. I know several people who are struggling at home because they are not getting the support they need.

If we don’t get past this point, I’m very concerned that we’re approaching the point where it’s going to be another endemic disease, especially among gay men. I’m worried we’ll be stuck with him forever.

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