“I literally yelled in pain”: My two-week monkeypox hell | monkeypox

I got monkeypox, and it was a complete nightmare.

When the New York Pride Festival began on June 24th, I realized that monkeypox was a new problem. Gay men – But I also got the impression that the number of cases in the city is relatively small. What I didn’t understand was how terrible the testing ability was. At that time, the city had only processing power. Test 10 times a day..

I had sex with some guys on the weekends. A week later, on July 1st, I started to feel very tired. I had a high fever with chills and myalgia, and my lymph nodes were swollen and protruding 2 inches from my throat.

First, I took the Covid self-test: Negative. Then I started to suspect monkeypox. I sent a text message to a friend: I’m just sitting here waiting for the rash to start.

I’m a 39 year old man from Sweden, living in Brooklyn and engaged in philanthropy. For the past decade, my work has focused primarily on sexual and reproductive health and rights, so I tracked outbreaks from the beginning. When New York City was vaccinated, I was about to get vaccinated. First vaccination drive June 23rd. But like most other New Yorkers trying to get a promise, I had no luck.

Two days after my symptoms began, the rash began as an anal rectal lesion – painful pain in the anus and rectum. Initially, it felt stinging and itchy. I wasn’t scared at this point. I was told it was calm, and I was a perfectly healthy individual with no underlying condition. But I didn’t know how bad it would be.

I visited my family doctor (PCP) and telemedicine, but she agreed that I should be examined. So I went to emergency treatment. I had all the symptoms of monkeypox, and thankfully no one wondered if I should be tested. I also wanted a complete STI panel.

I wanted TPOXX, an antiviral drug used to treat monkeypox, but first I need a positive test result. So they sent me home with Tylenol. (((European regulators TPOXX is approved as an effective monkeypox treatment, but the FDA only approves it as a treatment for smallpox. The CDC It maintains a stockpile of TPOXX and enables its “compassionate use” in the event of monkeypox. )

When I got home, the rash started to spread and I became anxious. I literally developed lesions everywhere. After they began to look like mosquito bites, they eventually developed into popping blisters, and finally became scabs, leaving scars. There were five on the skull, face, arms, legs, legs, hands, torso, back, and right elbow. At peak times, there were over 50 lesions, fever on the 103rd floor, and severe pain, causing a panic attack. Ironically, the only place I didn’t have a lesion was my penis.

The next day I got an STI result: positive for gonorrhea. However, nothing has been said about monkeypox yet. At that time, I had hives all over my body from the neck down, and my headache, arthritis pain in my fingers and shoulders, and strange pain in my shin bones became so severe that I couldn’t stand up. At night, I would just sit in bed and scratch myself and wake up engrossed in both the pain and itching from lesions and hives. I was isolated, lonely, and dissatisfied with how unfair the situation was. I was obviously very ill, but I had to put together a care plan myself.

My anal rectal lesions, which are already very painful, have turned into open wounds. It felt like the three crevices were next to each other, and it was absolutely intolerable. When I went to the bathroom, I literally shouted out. Even keeping the place clean, like washing myself, was very painful. It was a two hour process each time.

4 days after the test – Emergency treatment called me to test positive for monkeypox. But they didn’t give me any further information.So I started calling to see how I could access the antivirals.. I knew the CDC was out guidance Who should consider treatment, and it included people with anal rectal lesions, throat lesions, and dermatological conditions.

But I was just introduced in a circle. I called emergency medical care and was told to contact the Ministry of Health. The Ministry of Health will say, “Oh, your PCP must request treatment for you.” Then I contacted my PCP, and they said, “We can bring the case to the Ministry of Health, but as you know, they reject most of our requests. , So don’t raise your wishes. “

Then my throat started to swell. My tonsils were covered with white pus. I took a video with someone in the PCP office, and they said, “I think you should go to the ER.” The 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 gave it only to people with severe immunodeficiency. I told them, “It’s not a CDC treatment guideline.” They wouldn’t have it, and they fired me at 2am. I was incredibly depressed.

The next evening, I finally got a call from the Columbia University Irving Medical Center clinic. They said DoH asked them to undertake my proceedings. It seems that I was one of the few lucky people I was invited to treat. Since the drug has not been extensively tested in humans, there is fairly important informed consent and ingestion process. I spent about an hour at the clinic and went out with two weeks’ worth of TPOXX. I was relieved.

You are on a high-fat diet and must take 3 pills every 12 hours. I eat a lot of bacon and whipped cream, and this is the next best thing to do with this treatment. The lesions soon began to dry, leaving three small scabs now. In the last few days I have been able to go to the bathroom painlessly.

I’m still isolated. I can’t say how tired my apartment is now. I’m a pretty privileged person in that I have the resources I need to order food and medicine and deliver them to the door. The apartment has laundry so you can wash your sheets and clothes. I know other people who are suffering from isolation because they don’t have a situation like me.

The day after starting treatment, on July 13th, a contact tracer from the Ministry of Health finally called and said that he may have had monkeypox on June 26th. I told her that I already had monkeypox, and she asked me about my symptoms. The call lasted about 30 minutes and she was clearly reading the script. Then she hung up her phone, saying, “Well, thank you for your time and get well.” She didn’t even ask me what contact I had.

All this feels like a major failure that should not have been allowed to occur, especially within two and a half months of the outbreak. If someone like me who is sexually healthy and has worked for a long time has such a hard time navigating care, I can’t imagine anyone else doing it. I know that some people are sitting at home in pain because they don’t get the support they need.

If that’s not the case, I’m pretty worried that it’s approaching another endemic, especially among gay men. I’m worried that I’ll get stuck forever.