MILWAUKEE, Wisconsin — Families affected by the potentially deadly "dog-lick" bacteria are working together to get more answers and oversight from the medical community.
All health organizations report how rare it is for the dog-lick bacteria to cause serious damage or death among people.
But in southeast Wisconsin there were two cases in one month , affecting families who live less than an hour away from each other. Those families and others from around the country are now questioning how the bacteria is being monitored.
"We're past the point of changing what happened to my mom, but we're not past the point of being able to change what happens in any possible future cases," says Steven Larson.
Larsons' mom, Sharon, died in June from the dog saliva bacteria . That same month, Greg Manteufel, had his hands and legs amputated because of it. He's still going through surgeries at Froedtert Hospital.
"It definitely raises that question in your mind, is it really as rare as they say and think it is?" Larson said.
Larson and WTMJ television station reporter Katie Crowther have received messages from all over the country, after the initial story on Sharon's death aired on Aug. 9.
Rita Gallegos emailed from California about her sister, who narrowly survived a face infection from the dog saliva bacteria.
"Between the two Wisconsin cases and my sister, that's three in a very short time, of something that is normally quite rare," she wrote. "I am hoping we can work together and find out why we are suddenly seeing a rise in it."
"A man in St. Louis also commented on a Facebook link that he lost his father to the dog lick bacteria," Larson says. "I would like to talk to more people about my mom's case, and their cases. We all have stories."
A representative with the CDC told WTMJ over the phone that they don't track the bacteria. It's up to state health departments to report cases to them.
In a follow-up email Benjamin Hayes, a Senior Press Officer with the CDC's Infectious Disease Media Team, says the dog lick bacteria "is not nationally notifiable so case counts are not routinely reported to CDC.
Most public health labs can test for this pathogen so don't often send samples to CDC for testing.
That said, MicrobeNet, CDC’s online reference library, has received reports of 12 positive cases in the past year. These are likely only the most severe cases or those in which diagnosis was complicated for some reason."
But Jennifer Miller, an advanced communications specialist with the Wisconsin Department of Health Services sent us this email about the infection associated with the dog lick bacteria: "it is a rare infection in people and is not reportable to the Wisconsin Department of Health Services or the CDC, so there is no specific information on the number of people affected by this infection."
"This just leads to more frustration," Larson said. "I'd love to know what are the real stats of this bacteria. Reporting and tracking it shouldn't be voluntary. Who do I even call to say that this needs to change?"