When a rare bacterial infection claimed the life of 18-year-old Benjamin LaMontagne in February, barely six months had passed since a Bangor mother died from the disease just shy of age 30.

Both LaMontagne and Heather Nichols were young. Both appeared otherwise healthy. Both developed the rare, sudden infection, necrotizing fasciitis, just days after routine medical procedures. LaMontagne had undergone a wisdom tooth extraction, while Nichols had just given birth to her first child, a daughter named Ruby.

According to the U.S. Centers for Disease Control and Prevention, healthy individuals are at extremely low risk of contracting necrotizing fasciitis.

LaMontagne and Nichols died from it anyway.

These high-profile Maine cases, and others throughout the U.S., have left many wondering how to protect themselves. And a national advocacy group for necrotizing fasciitis survivors is calling on the medical profession to research and adopt new treatments for the disease, labeling the existing approach “tragically inadequate.”

The condition is often misdiagnosed during the critical beginning stages, when aggressive treatment, involving intravenous antibiotics and surgery, can prevent further spread.

The infection takes hold under the skin, often leading to pain and soreness that patients or doctors may mistake for typical discomfort after an injury or medical procedure.

Commonly known as “flesh-eating bacteria,” necrotizing fasciitis attacks soft tissue, typically entering the body through a break in the skin, such as a cut or scrape. Toxins produced by the bacteria ravage the infected tissue, killing it. That process, known as necrosis, lends the infection the first part of its name.

Fasciitis refers to inflammation of the fascia, or connective tissue below the skin that surrounds muscles, nerves, fat and blood vessels. The infection travels on the fascia, speeding through the body and destroying the surrounding tissue.

Necrotizing fasciitis kills roughly 30 percent of those it infects, with early treatment. Left untreated, it’s even more deadly, leading to mortality in at least 70 percent of patients, by some estimates.

The hallmark early symptom: Patients often describe their pain as severe and far out of proportion to how the area appears.

“It’s a horrible disease and it really does have a devastating impact on families and patients,” said Dr. Lauri Hicks, a medical epidemiologist with the CDC. “A lot of people lose their lives to necrotizing fasciitis, and even if they don’t lose their lives they lose limbs. It can really be life-changing.”

Prevalence unclear

Experts don’t know exactly how many cases of necrotizing fasciitis occur each year. The CDC tracks cases that result from the most common cause, group A streptococcus bacterium.

The germ is commonly found on the skin and in the nose and throat, often causing no symptoms at all or minor infections such as strep throat. The bacteria can lead to life-threatening infections when it invades parts of the body where bacteria typically don’t reside, such as muscle or the lungs.

Such infections are known as “invasive GAS disease,” which can include necrotizing fasciitis and other severe conditions, such as streptococcal toxic shock syndrome, according to the CDC.

Each year in the U.S., group A strep causes about 650 to 800 cases of necrotizing fasciitis, the CDC states.

While the disease can lead to horrifying pain, disfigurement and death, it remains rare, public health officials stress. By comparison, 200 times as many patients develop surgical site infections each year.

But the public health agency acknowledges its estimates likely miss some cases. The CDC doesn’t track cases of necrotizing fasciitis caused by less-common culprits, including antibiotic-resistant bacteria such as methicillin-resistant Staphylococcus aureus.

In Maine, 29 cases of invasive group A strep have been reported in 2014, according to the Maine Department of Health and Human Services. Of those, 11 involved streptococcal toxic shock syndrome, which causes an unsafe drop in blood pressure and can lead to organ failure.

Five patients with that syndrome died, while four others experienced death of soft tissue — from necrotizing fasciitis, gangrene or muscle inflammation — but survived.

Nationally, the number of annual infections does not appear to be rising, according to a CDC surveillance program that monitors 10 states, not including Maine. Patient advocates, however, believe necrotizing fasciitis is becoming more common, based on anecdotal reports.

When necrotizing fasciitis develops after surgery, as it did for LaMontagne and Nichols, pinning down where the bacteria originated proves difficult, Hicks said.

The germs can lurk on a patient’s body before the procedure, but medical professionals also have been known to transmit the bacteria to patients, she said.

A case of necrotizing fasciitis in a health care setting could indicate that infection prevention steps weren’t followed. At the same time, it might not, Hicks said. The infection is, paradoxically, unavoidable to a degree but also preventable.

Medical experts still don’t understand why a common and often harmless bacteria can turn toxic in the body, Hicks said.

“We don’t know the answer to that question,” she said.

But a California physician believes he’s found a way to limit the death toll of necrotizing fasciitis.

A new treatment

Dr. John Crew has treated 23 cases of necrotizing fasciitis. None of his patients died or lost a limb, he said.

“If you realize what it is, you can treat it right,” said Crew, lead vascular surgeon at the San Francisco Center for Advanced Wound Care at Seton Medical Center in Daly City, California.

Crew believes many more people suffer from necrotizing fasciitis than the reported numbers reflect.

“When somebody comes in the emergency room and they look like they don’t have much of an infection, then they die right in front of you, what do you call it?” he said. “You call it septic death, or something like that. I think the misdiagnosis is enormous.”

Crew has developed a new treatment for the infection that preserves the heavy doses of antibiotics but avoids the typical repeated surgeries doctors use in a race to cut out dead tissue before it infects healthy parts of the body.

He irrigates the wounds with a saline solution of hypochlorous acid, a chemical that’s naturally produced by the body’s white blood cells to fight infection. The acid neutralizes the toxins and the body’s inflammatory reaction, allowing healing to begin without removing large amounts of tissue, he said. Crew then drains the wound using a negative-pressure vacuum.

Crew published his approach in October in the medical journal Wounds. But his approach hasn’t undergone a clinical trial to demonstrate its effectiveness, largely because the condition is rare enough that finding study participants is challenging, he said.

Reaction from other physicians to his treatment has been mixed, Crew said.

“Understandably, it’s very hard for a surgeon to have somebody walk in and say, ‘I can help you’ about something he’s never seen or heard of,” Crew said.

Also key to patients’ survival is treating the symptoms of shock that often accompany the infection, he said.

“It’s disguised in many ways,” he said of necrotizing fasciitis. “You can treat pain, you can treat infection. Give them a lot of antibiotics and hope you get to the right spot. It’s not a flaming, glaring wound, it’s under the skin.”

Crew’s approach has been publicized by the National Necrotizing Fasciitis Foundation, an advocacy group for survivors of the condition. In late June, the group called on major medical societies to find better ways to treat the condition.

“Too many people are losing their lives or their limbs because the current standard of care simply doesn’t work,” Jacqueline Roemmele, executive director of the foundation, said in a news release.