AUSTIN (KXAN) — Misdiagnosed and mistreated — that’s how one Austin man feels after getting monkeypox.
Caleb Jones said he suffered for nearly two weeks and bounced around to six different medical centers before finally getting the medication he needed.
His first symptom came on Aug. 16 — a sore throat. He went to three urgent cares and a hospital and said he was prescribed different antibiotics and steroids.
“The fevers were getting really bad, and I felt like I was starting to hallucinate,” Jones said.
Five days later on Aug. 21, his sister took him to St. David’s in Round Rock, where they admitted him. He said none of the doctors asked him about his sexual history or possible exposure to monkeypox, even after he started getting lesions on his body on Aug. 22.
“I wasn’t eating or drinking. I was very weak,” Jones said.
“They thought that it was probably because of the steroids, reaction to the steroids,” he said.
He said once the lesions spread to his hands, St. David’s swabbed him for a monkeypox test. That was on Aug. 24. By then, he said he’d also done his own research and asked about getting TPOXX, a drug used to treat monkeypox.
“She said that she couldn’t do anything about it until the results came back with a positive result. And then she wasn’t sure about availability and how to get it, but that she would discuss it if the results came back positive,” Jones recalled.
KXAN spoke with Ashley Hawes, case investigator and epidemiologist with Austin Public Health. While not commenting specifically on Jones’ case, she said in general, doctors don’t need a monkeypox diagnosis before prescribing TPOXX.
“A person doesn’t necessarily have to be positive for monkeypox yet or have the lab results if they’re in extreme pain or a case of severity for monkeypox, and the doctor has high suspicion of it,” Hawes said.
Hawes said she’s come across cases of mistreatments and misdiagnoses for monkeypox.
“Monkeypox is showing up with a lot of other diseases, a lot of co-infections,” said Hawes, who is an epidemiologist.
She said for a lot of local providers, it’s a new disease that they’ve never seen.
“We have had a huge push out of… information to our medical community. But sometimes… getting it to all levels is difficult in an organization, in general,” she explained.
KXAN reached out to St. David’s for comment on this case. It said it is working with public health entities.
“While we cannot discuss the specific details of this case without the patient’s written consent due to federal privacy laws, St. David’s HealthCare has long been committed to providing exceptional care to every patient every day, without regard to age, gender, disability, race, color, ancestry, citizenship, religion, pregnancy, sexual orientation, gender identity or expression, national origin, medical condition, marital status, veteran status, payment source or ability.St. David’s HealthCare
We are working closely with the Centers for Disease Control and Prevention, Austin Public Health and Texas Department of Health and Human Services to provide testing for patients who have a rash consistent with monkeypox. Monkeypox is a viral disease that typically resolves itself within two-to-four weeks without specific medical treatments. Patients very rarely have symptoms that require hospitalization. Typically, patients are admitted for pain management, as the rash alone does not require hospitalization.
As we have learned during the past two years, infectious disease outbreaks can evolve over time. We will continue to monitor the spread of monkeypox in our region and provide updates and adjustments to our procedures as appropriate.”
This week, Jones got a voicemail from his St. David’s doctor confirming his monkeypox diagnosis. He said he called back and still hasn’t been able to reach anyone who could help.
He’s glad he already turned to the Kind Clinic on Monday. They got him TPOXX the next day.
“If I hadn’t talked to the clinic then I mean, I would be without the medication,” Jones said.
Kind Clinic is a program of Texas Health Action. A spokesperson there said monkeypox is relatively new to the U.S. and is mostly being spread by sex or intimate contact.
“Health care providers historically are challenged in making timely diagnosis for many infections surrounding intimate acts or sex,” they said.
“Kind Clinic is dedicated to meeting patients where they are and providing access to culturally affirming health services in a safe and supportive environment with a specialized understanding of the care needed for the people this virus is disproportionately impacting,” they added.
Jones said his medication is already helping.
“I can already tell a difference. The lesions on my hands don’t hurt anymore,” he said.
He’s sharing his story so others don’t have to go through what he did.
“I just don’t feel that our health care system is doing the job to get the information out to their staff and make them aware and make them knowledgeable,” he said.
APH case investigators
Austin Public Health’s case investigators call patients once they receive lab tests from providers. Patients can also self-report by calling APH. They do this for many diseases, including monkeypox.
They’ll ask you questions about your demographics and close contacts. The research helps them identify trends, hotspots or outbreak areas.
Hawes said it’s also important to pick up the phone and be open with investigators, so they can connect you and the people around you with the right help.
“Our goal is to stop disease spread. And also, when we’re able to do these investigations, we can connect people to resources, and being more forthcoming can also connect their contacts to resources as well,” Hawes said.
That includes getting to a clinic for a test or vaccine.
“If they were at an event, or if they had a sexual contact with monkeypox, and we try to… get them vaccinated sooner,” she said.