It took several trips to doctors before Tatum Larson, a 24-year-old woman who had just moved to Maui for massage school, was finally diagnosed with rat lungworm disease, a condition in which worm larvae infect the brain.

She began suffering from burning, migrating nerve pain in her bones and skin, a sign of the disease, but doctors and nurses on Maui couldn’t tell her what was wrong.

One night, the pain grew so bad that she went to the emergency room at Maui Memorial Medical Center at 2 a.m. It was her second trip to a Maui doctor.

“I couldn’t sleep, I couldn’t even have the sheet on my leg because it had spread all up my calf and then all down my foot,” she told the Honolulu Star-Advertiser. “I couldn’t even put my hand near my skin because just the air pressure change would make this burning nerve pain just go crazy.”

Larson said nurses tried to send her home with painkillers, which she rejected, and a doctor suggested that maybe it was early-onset arthritis or Lyme disease.

“Even I knew that was not anywhere close to being right. His general attitude was completely dismissive,” she said. “If you are a doctor in Hawaii, you should know … this thing has been happening on the Big Island for years and years and they don’t know about it. That’s ridiculous. So I left with no information.”

Officials with Maui Memorial declined to comment on Larson’s case, saying in an email that “our respect for our patients’ privacy and confidentiality does not allow us to speak about or release specific information about any of our patients.”

It wasn’t until Larson returned home to the Seattle area that she received a correct diagnosis from a doctor after mentioning she had heard about the disease from a friend. She said her case was confirmed by Hawaii’s Department of Health after her spinal fluid was tested.

Larson believes she acquired the disease from eating locally grown lettuce during a visit to Hilo, which she says she washed. Health officials say that snails and slugs are the primary transmitter of the disease — the semi-slug, in particular, which can be so small and translucent that it’s hard to spot, yet carry thousands of larvae.

Larson developed meningitis, had stabbing pains in her head, lost motor control in parts of her body, and had trouble hearing, seeing and spelling words.

Larson contends that some of her suffering, and that of others who have contracted the disease, could have been averted if doctors in Hawaii were better at diagnosing and treating the disease.

“I think there needs to be way more medical knowledge and early treatment because it seems that they always catch it late, and then if they do catch it, they don’t know what to do,” she said.

Larson isn’t alone in feeling that way. Others who have contracted the disease have said they were sent home from Hawaii medical facilities without a diagnosis only to have symptoms grow more severe.

Meanwhile, medical professionals in Hawaii don’t agree about critical treatment options, and despite dozens of confirmed cases in Hawaii in recent years, some health providers still seem to be unaware of what to look for.

Treatment disputes

During a briefing at the state Capitol earlier this year, it became clear that officials with the Health Department and rat lungworm researchers from Hilo didn’t agree on how to treat the disease, frustrating legislators from Hawaii island, where most of the cases have occurred.

Hilo researchers said they believed anti-parasite medication should be administered to kill the worm larvae.

But Sarah Park, the state epidemiologist with the Health Department, called such treatment “reprehensible from a medical standpoint,” saying that the medication potentially doesn’t work and could actually worsen the patient’s symptoms.

Months later, there’s still a lack of agreement on how to treat the disease.

State Health Director Virginia Pressler reiterated during an interview last week that patients suffering from rat lungworm should not be given anti-parasite medicine and said Park had just sent out an updated bulletin to hospitals making guidelines clear.

“The use of anti-parasite drugs has not been shown to be effective and, in fact, there is some concern from the (Centers for Disease Control and Prevention) that it could actually exacerbate the neurological symptoms because of the increased inflammatory response of the body to the dying parasites,” Pressler said. The same guidance is given in a paper written by Chad Meyer, a recently retired local doctor with experience treating the disease.

That advice isn’t resonating with Jon Martell, medical director for Hilo Medical Center, which has been on the front lines of treating the disease in Hawaii. The hospital has treated 12 severe cases of rat lungworm in the past six months. Martell says studies from Asia, where the disease is more prevalent, have shown that the anti-parasite medication can be both safe and effective.

For patients with significant infestations, Martell said the protocol is to treat them with anti-inflammatory steroids for two days and then add the anti-worm medication, continuing both for two weeks.

“I suspect that Dr. Pressler, and I respect her greatly, is simply following the recommendations by the (National Institutes of Health) and CDC,” he said. “And prior to the presentation of severe cases — which is what we have been having in east Hawaii — when almost all cases were mild and without neurological complications, it would seem reasonable that you could minimize treatment.

“But the CDC doesn’t reflect the new reality of what we are seeing here in East Hawaii, and when we are dealing with patients who will potentially die or be permanently crippled from this disease and we have studies that show that the aggressive treatment is safe and effective, there’s really no other course we can take but to be aggressive,” Martell continued.

On Hawaii island, there have been several deaths from the disease.

Asked whether he had been in communication with Park or Pressler, Martell said he had never had a conversation with them about rat lungworm disease. “I would welcome a call from them any time, but that is neither here nor there,” he said.

The reason for the lack of communication is unclear.

Health Department spokeswoman Janice Okubo provided this response when asked about it: “Dr. Sarah Park said, Dr. Peskin (Regional Chief Medical Officer at Hilo Medical) has tried to connect Dr. Martell with her, but they have been unable to get in contact with each other.”

Okubo added that both Park and Martell sit on a 16-member rat lungworm task force convened by Gov. David Ige a year ago. She said the group has met at least twice.

Pressler later said by email in response to Martell’s comments about treatment that “DOH has provided guidelines for physicians, but ultimately it is the physician who will determine the best treatment for their individual patient based on the specific circumstances of their case.”

Recovery

For Larson, little of the medical knowledge that does exist about rat lungworm disease seemed to be filtering down to the doctors she was seeing on Maui and in Seattle.

In Seattle, she developed meningitis and was treated in the hospital with anti- inflammatory steroids. She quickly began feeling better and returned to Maui unaware about the progression of the disease.

Martell said that there are two critical periods for rat lungworm sufferers: when the worms initially go into the brain and then about three weeks later when they start trying to get out and die.

Back on Maui, Larson’s symptoms grew much worse and she ended up back in the hospital in Seattle. On the flight back to Washington, she said, that her loss of motor function grew so severe that it took her 45 minutes just to open her backpack.

Larson says she’s feeling better, but still battling meningitis. “My body is apparently still working the parasites out of it,” she said.

She’s been battling the disease for more than two months now and thinks that some of the pain could have been avoided if doctors were more informed about treatment options, including the use of anti-parasite drugs.

“If my doctors had had that information when I was there, this whole thing would have been a lot shorter and less painful,” she said.