LEE COUNTY, Fla. — Lee Health is now weighing in on a medical mystery that has a 13-year-old boy fighting for his life. For two weeks, Fox 4 has been trying to get a clearer picture for you by asking local, state, and federal health officials questions.
We've pushed to find out whether the boy's illness was actually caused by an amoeba he may have come into contact with at a Charlotte County beach and where that beach might be. The amoeba is called Naegleria fowleri, and the CDC says it occurs naturally in fresh and brackish water.
Lee Health issued an unusual statement with the family's consent, with the apparent goal of clearing up some of the communication we've received from other agencies.
On July 9, Lee Health says the young boy's family brought him to Golisano Children's Hospital with symptoms of hallucinations, a severe headache, and a high fever. The boy had been swimming in brackish water on July 1.
According to the child's GoFundMe account, he was swimming in Charlotte County. Fox 4 is working to confirm what beach the young boy was at before we disclose it.
"After ruling out the much more common condition of bacterial meningitis, which has very similar symptoms to primary amebic meningoencephalitis (PAM), and learning that he had been swimming in brackish water on July 1, doctors tested and began treating Caleb for PAM," Lee Health said in a statement on Thursday.
The test happened a day after arriving to the hospital. Doctors collected two samples for the CDC to test for both signs of the amoeba and to confirm the disease — PAM.
"...per the protocol for laboratory evaluation of PAM, communication with the local Department of Health occurred and then subsequent communication with the CDC to facilitate testing of the sample," the statement read.
Fox 4 started asking questions about this on July 16, and the CDC said it was looking into it. On July 23, Charlotte County declared there were no confirmed cases.
The same message was finally echoed by the County Department of Health on July 26 and the CDC. On July 28, we got some additional clarification.
Lee Health said the test for the amoeba was negative and the test for the disease was inconclusive. The CDC previously confirmed with us that the tests for the amoeba were negative.
Despite the negative tests, Lee's health says it's continuing with treatment anyway due to his recent exposure to brackish water, symptoms and his clinical course.
"Even though there was not a confirmed result for PAM to report to the Department of Health (due to inconclusive tests), Caleb’s doctors believe this to be the cause of his illness and are treating him accordingly," Lee Health stated.
Also, the Department of Health turned up at a Charlotte County Board of Commissioners meeting on Tuesday to educate people on the amoeba.
"You can just assume that naegleria is in freshwater. That’s why the testing component isn’t in there as well," said Joseph Pepe with the Charlotte County Department of Health.
We reached out to the CDC and DOH, asking them about testing and treatment.
The DOH has not responded to our requests as of Thursday evening.
A spokesperson for the CDC said when it comes to treatment, it's up to the patient's doctor providing care, though CDC experts provide treatment information, which includes multiple medications.
"...their effectiveness is unclear since almost all infections have been fatal, even when people were treated with similar drug combinations," the CDC says.
When it comes down to the test performed by the CDC, the spokesperson said it's done using a PCR test.
"It can detect even one ameba in the sample. The chance of a false negative test is very low," the spokesperson told Fox 4.
It's important to note being infected with the amoeba is extremely rare. The CDC says 154 people since 1962 have been infected and only four have survived. The fatality rate is 97 percent, the CDC reports.
"After the start of symptoms, the disease progresses rapidly and usually causes death within about 5 days (range 1 to 18 days)," the CDC reports.
The only way to be infected is if the amoeba goes up your nose from splashing around in the water or jumping in.
