Edward Franklin never thought one day he’d be praying for syphilis.
But that’s exactly what he found himself doing one weekend in June after visiting an eye doctor and waiting for his test results to come back.
“The eye doctor was confident I had syphilis and that was the cause of my newfound problems with my vision. He stressed that I could go blind if I didn’t take it seriously,” Franklin recalled. “And he also told me that I had better hope it was syphilis since the other possibilities were worse and not easily treatable.”
So Franklin prayed.
Turns out the eye doctor was correct in his diagnosis. Franklin had Ocular Syphilis. Many people know what syphilis is, but ocular syphilis, is much rarer, and few people have ever heard of it.
The CDC released a warning in 2015 after a cluster of such cases had been reported in two major cities, San Francisco and Seattle.
Rates of ocular syphilis are climbing – one reason is that all rates of sexually transmitted diseases are on the rise.
“As we see the total number of syphilis cases go up we will see a rise in syphilitic eye disease as well,” said Jeffrey D. Klausner, Professor of Medicine and Public Health at UCLA. Klausner has seen a number of patients over the years with ocular syphilis but noted that it’s still rare.
Health officials are scrambling as rates of syphilis, gonorrhea and chlamydia have increased for a fourth consecutive year in the U.S. Rates of STDs in South Florida mirror and sometimes exceed the national numbers.
In 2017, about 2.3 million cases of the three STDs were diagnosed. It marks the highest number ever reported. Officials said there’s no reason to think 2018 will buck the trend.
Gonorrhea is up 67 percent and primary and secondary syphilis increased more than 75 percent. Chlamydia rates continue to increase as well.
Officials want emergency access to federal public health funding, among other strategies, to help immediately stem the tide.
Concerning syphilis, there is also an emerging concern in the rise of the ocular variety – one that usually manifests in the later stages of the disease.
From red eyes to blindness
The CDC said syphilis diagnoses rose from 27,814 cases in 2016 to 30,644 in 2017. Men who engage in sexual activity with men made up 17,736 of those cases. There doesn’t appear to be any data regarding ocular syphilis.
Syphilis is caused by the bacterium Treponema pallidum and the disease can affect the heart, nervous system and other organs if left untreated. Ocular syphilis is an inflammatory eye disease that can cause redness, blurry vision and partial or total vision loss.
In a recent study, a team of researchers observed that cases of ocular syphilis in just two-and-a-half years had increased more than eight times compared to the past decade within four medical centers in Brazil.
Out of 127 patients identified, 87 suffered inflammation in both eyes. Many had suffered complications including retinal detachment. More than half had lost vision to below levels that would be required to drive.
Officials say the syphilis infection often goes unnoticed because many of its symptoms, such as sore throat, headache and skin rash, resemble those of other common illnesses. The same goes for ocular syphilis—likely explaining why many patients in the Brazil study often didn’t see a doctor for some months after developing the problem.
But when ocular syphilis goes untreated or is treated late, the damage is often already done to internal components inside the eye. The good news is symptoms often can be reversed entirely with early treatment, but the diagnosis isn’t always easy.
Ocular syphilis can occur at any stage of the infection and officials say if you’re a patient with syphilis and you’re having eye problems, see an ophthalmologist.
Dr. Eduardo Uchiyama of the Retina Group of Florida said he’s one of the few eye doctors in the state who is trained to readily diagnose ocular syphilis.
“In February I diagnosed seven patients with ocular syphilis,” Uchiyama said. “It’s usually about one a month. Crazy.”
In Florida primary and secondary rates of syphilis are higher than the national average, about 11.9 people per 100,000. Only Louisiana, Nevada, California, Georgia and New York have higher rates than the Sunshine State. Miami-Dade County ranks No. 5 in the U.S. (19.9 per 100,000) and Broward County ranks No. 19. (15.6 per 100,000).
In addition, Uchiyama said when someone has active syphilis the risk of getting HIV goes up two to five times, because of common genital lesions.
“When you get syphilis, initially most patients get a lesion and they get diagnosed. Some ignore the lesions and the lesions resolve on their own but syphilis is still there. Over time it causes issues in other organs, the nervous system, the skin, the eye. Most patients have had syphilis for years and don’t know it. They may go to [the] doctor when they have eye problems and the doctor might now realize that’s the cause and test for it,” Uchiyama said.
He’s seen cases of ocular syphilis in patients as young as 20 and as old as 80.
There are different blood tests for syphilis, but doctors usually order the RPR test (rapid plasma reagin) when they want to rule it out. However the test can show negative over time, even if a person is positive. When a postiive test shows up the result is often confirmed with the more specific treponemal test.
“Once we see the patient we send a battery of tests to try and figure out why [eye] inflammation is happening,” Uchiyama said. “Then we coordinate the treatment.”
Traditional treatment of syphilis includes a series of intramuscular injections of penicillin. For ocular syphilis, it’s more involved. Treatment includes a trip to the hospital, or emergency room, and two weeks of intravenous (IV) penicillin. A special take home IV unit is given to the patient.
“It can be expensive. But it’s more expensive to lose vision in both eyes,” Uchiyama said.
‘I was shocked’
Franklin (not his real name) 40, lives in South Florida and works in Broward. Earlier this year he began experiencing “floaters” in one of his eyes and saw an ophthalmologist, which she told him is a normal condition with aging. But she also wanted him to get an MRI (magnetic resonance imaging) to rule out anything serious. Franklin never got around to getting the MRI, but about a month later he realized his eyesight in his right eye had seriously deteriorated.
“Everything was blurry and I got freaked out so I made a follow up appointment the next day,” he said.
The same eye doctor said his right eye had gone from 20/20 vision to 20/80 and now there was a noticeable infection. He was quickly referred to Uchiyama, who diagnosed him with ocular syphilis.
“It was shocking to me that I had syphilis,” Franklin said. “I get tested and screened [for STDs] on a regular basis. I know the normal symptoms and I don’t recall experiencing them,” Franklin said. “I honestly felt that maybe the doctor had simply came to the conclusion because I am gay.”
Uchiyama ordered two different syphilis tests for Franklin.
“He told me the standard test might come back negative and so ordered both tests,” Franklin said.
Uchiyama was correct. The standard RPR test did come back negative. A day later, the confirmatory FTA test, came back positive.
Franklin was forced to check into a hospital where the doctors ordered a spinal tap to make sure the infection hadn’t spread to his brain (it hadn’t), and then the penicillin IV was administered.
“The doctors in the hospital were surprised to learn that an eye doctor diagnosed me with this,” Franklin said. “I am very grateful to Dr. Uchiyama. He knows his shit.”
After four days he was sent home with an IV pump, which he had to use for almost two weeks.
“It was quite on ordeal,” Franklin said. “I had to mix the medicine each day and restart the pump.”
The doctors initially told Franklin it appeared he may have had the infection for years without knowing it. But later in the hospital the infectious disease specialist, after further evaluating additional tests, revised her conclusion saying it appeared he was in the first stage of syphilis.
Dr. Jeffrey D. Klausner said ocular syphilis appears to just be a different manifestation of syphilis. But that’s difficult to say with certainty because “there is very little new money in syphilis research.”
Klausner doesn’t know for sure how or why someone might develop eye problems rather than the typical symptoms.
“That’s a great question. Someone with ocular syphilis probably just caught syphilis the normal way through sex. But we really don’t know,” he said.
And how do you catch syphilis?
According to Klausner syphilis is only infectious for about 1-2 months in total. In the first stage most people develop a painless sore for about 2 weeks that is highly infectious. While condoms will protect many people from catching the infection condoms do not work 100 percent of the time because it all depends on where the sore develops. For instance if the sore was in your mouth, it could theoretically be passed with deep kissing or oral sex. Klausner said contact with moist lesions and with the mucous membranes of genital skin, mouth, vagina or anus would increase the chances of transmission. During the secondary stage someone might develop moist lesions in the mouth, anus or vagina, which lasts for about four weeks. Those are also highly contagious.
“I never had the classic symptoms of syphilis,” Franklin said. “And I had never heard of ocular syphilis.”
Franklin sees it as a “blind spot” in STD education. “It was also terribly expensive. It probably cost me about $5,000 out-of-pocket and I have insurance.”
Franklin considers himself well educated and informed on STDs compared to the average person.
“And this happened to me,” he said.
Klausner agrees that education about how syphilis is spread, how it shows up, and how it is detected and treated, are the keys to prevention. Few people though really know about syphilis anymore, including in many cases primary care physicians.
“We learned with HIV that the best way to educate physicians was a well-informed community,” Klausner said. “Community leaders and advocates played a critical role.”
Uchiyama agrees that the rise in syphilis, gonorrhea and chlamydia is partly because people are no longer afraid of contracting HIV/AIDS like they once were, and aren’t protecting themselves as much as they once did.
Indeed, half of patients diagnosed with syphilis also have HIV and many of them don’t know it, he said.
“The reason why we see more cases now is high risk behavior – multiple partners, unprotected sex and people using [the] PrEP [drug] to decrease HIV chances,” Uchiyama said.
He said another factor is the ease of travel across the globe and the appeal of South Florida as an international destination.
Officials also think part of the rise is thinking about STDs through a curative lens instead of a preventative one. Solutions include encouraging primary care providers and physicians to talk more about prevention and start very early on with sex education.
Part of the issue officials cite is less focus at the CDC on STDs because the budget has been slashed by a third since the turn of the century.
And the cost to treat STDs is not cheap.
Locally, the Florida Department of Health in Broward County, for example, provides a variety of testing and treatment options, including outreach and education.
Klausner noted there may be some hope on the horizon in terms of prevention in regards to syphilis. Just like PrEP, the once a day pill to prevent HIV, ushered in a new era of HIV prevention Klausner said one drug has shown promise in reducing the rates of syphilis, and chlamydia. Using doxycycline, a common antibiotic, after a sexual encounter significantly reduced the rates of syphilis, and chlamydia, according to the results of a clinical trial detailed in the Lancet, a medical journal. It had no affect on gonorrhea. That study was focused on men who have sex with men, a high-risk group for STDs.
“It’s been talked about in STD meetings. There have been whole debates on it. Journals have written about it,” Klausner said. “So it’s emerging from under the radar. But there is not a whole lot of awareness yet. It’s definitely something people should know about.”
This is the second part of a series of reports SFGN will publish on the rising STDs rates in the U.S.