Mark LeRoy periodically stretched his legs as he stood Monday outside of a meeting room at the Hilo Hawaiian Hotel.
A year after contracting rat lungworm disease, LeRoy, who lives in Hawi, continues to deal with the after-effects of the illness. This morning, his leg was numb.
Rat lungworm, or angiostrongyliasis, is caused by a parasitic roundworm and can affect a person’s brain and spinal cord. In Hawaii, most people become ill by accidentally ingesting a snail or slug infected with the parasite.
While symptoms can vary, the most common include severe headaches and neck stiffness. More serious cases experience neurological problems, severe pain and long-term disability.
LeRoy and his wife, Maya Parish, were the first to present at the sixth international workshop on rat lungworm, a three-day program that kicked off Monday morning, drawing more than 250 participants from eight countries to Hilo.
They spoke of the efforts to get LeRoy diagnosed and adequately treated, despite the myriad symptoms he experienced, and the recovery efforts that have taken place over the past year.
“Before I contracted rat lungworm disease, I was healthy and active,” LeRoy said during the couple’s presentation. “I liked to surf, workout, I was a full-time property manager.”
Then came a semi-slug infestation in North Kohala.
It was on Jan. 9, 2019, LeRoy came into contact with a slug.
“I ate lettuce from our garden that we grew,” he said. “I washed it and put it in a salad spinner. After taking several bites, I noticed a live slug underneath my fork. Now, I don’t think I ate any part of the slug, but it’s highly likely that my fork grazed the slug and I perhaps ate a juvenile in the process. We didn’t know what to do. We were very, very scared.”
His first symptoms appeared nine days after contact with the slug.
Parish said he felt strong pressure on his upper middle back and chest, had fitful sleep, restless legs, tingling on the tip of his right thumb, a headache, cough, tingling burning in his neck and toes, fevers, trouble urinating, sore calves, hiccups for multiple days, night sweats and his feet were ice cold.
LeRoy’s first emergency room visit was on Jan. 22, where they informed the doctor he had contact with a slug and that rat lungworm was suspected.
He was told that a lumbar puncture was the only way to determine if he had the disease, and LeRoy said he wasn’t encouraged to get the test. While blood work was done, he was discharged with prescriptions for Gabapentin, ibuprofen and a muscle relaxer.
New symptoms appeared in the following days, and some existing symptoms got worse.
The pair continued to seek medical assistance, visiting their local clinic, making several additional visits to the emergency room, and reaching out to the state Department of Health — to no avail.
He sought treatment with a Waimea physician and began working with a naturopathic doctor.
As the days progressed, LeRoy’s symptoms continued to worsen.
“I was having pretty severe problems where I became bedridden,” he said. “I couldn’t work any more. I could barely get out of bed any time and I had excruciating headaches, and then suddenly for three days in a row, I had pain like I had never experienced. Literally, level 9, level 10 pain. I felt like I was being electrocuted from the inside … .”
After a pain attack at his doctor’s office last February, LeRoy was taken by ambulance to the hospital — his fifth visit — and was admitted and began treatment.
An MRI showed a micro-hemorrhage in the left side of his brain. LeRoy said testing was conducted by the DOH at his doctor’s insistence, “and at that point, I tested positive and became the second case in the state for rat lungworm (in 2019).”
One year out, Parish said LeRoy is still experiencing ongoing pain and numbness in his right leg, fatigue, mood swings and occasional tingling and itchiness in his arms, hands and fingers.
Following their presentation, LeRoy said the most difficult experience during the ordeal was the lack of “connected response between recommended protocols and symptoms that are meant to help.”
That meant he “had all the symptoms, and I was communicating symptoms, but the doctors we were talking to weren’t able or willing to connect my symptoms to a diagnosis. They only were connecting a blood test or eosinophil (a type of disease-fighting white blood cell) as the single means to consider that I had rat lungworm, in the face of all the evidence.
“I saw a slug on my plate,” he continued. “I grew lettuce in my yard. We had an infestation happening at that same time that I have these symptoms that were classic rat lung symptoms. … The frustration of my experience was that we were pretty sure that I had it, and yet we weren’t getting any care because every doctor we went to didn’t seem to either believe us (or) understand the symptomatic approach to the disease. They only understood the eosinophil count.”
That count had to meet a certain threshold for further testing.
“I believe we’re nearing epidemic proportions of this disease, because so many are not counted, so many are never diagnosed,” Parish said.
Sue Jarvi, a professor of pharmaceutical sciences at the University of Hawaii at Hilo’s Daniel K. Inouye College of Pharmacy, has been studying rat lungworm since about 2012 and convened this week’s workshop. She said the workshop is an international meeting that happens every 1.5-2 years.
“This is all about research and how to advance knowledge of this disease.”
It’s particularly important for Hawaii because “we’ve got a lot of cases, especially here in East Hawaii, so it’s particularly pertinent for East Hawaii because we’ve had more than 90% of the cases in the country.”
Lt. Gov. Josh Green, a Big Island physician, opened the program Monday morning.
Following his remarks, Green said that as a result of this workshop, he hopes Hawaii’s health care professionals, especially those in areas with higher rates of rat lungworm disease, know to be looking for it, that the DOH is more responsive to run PCR (polymerase chain reaction) tests for any patient of concern, and that health leaders should find a way to get the anti-parasitic drug albendazole to people early, “where it will basically do no harm in the early phase, with the guidance of the infectious disease specialists. They should give us some advice.”
In the meantime, however, the dangers of rat lungworm continue to lurk on the Big Island.
Just last week, a woman discovered a slug in a sandwich purchased from Island Naturals in Hilo.
In a Facebook post, Chaunda Rodrigues said she called the hospital but was told there was nothing she could do until symptoms present.
In an update to the post, Rodrigues said she went to Hilo Medical Center’s emergency room on New Year’s Day and insisted on preventative treatment. She was prescribed albendazole.
Jarvi, whose lab tested the slug, confirmed it was carrying the parasite that causes rat lungworm.
Island Naturals retained its green food safety placard from the DOH following a Jan. 2 food safety inspection prompted by the complaint.
According to the inspection report, Island Naturals’ leafy green produce and lettuce is typically received from ‘Ano‘Ano Farms but was not in stock. Produce and lettuce instead was sourced from a Pahoa farm.
“Establishment is planning to discontinue using local leafy greens in deli items and switching to mainland sourced produce through Albert’s Organics or Charlie’s Produce,” the inspection report reads.
Two violations were found and corrected at the time of the Jan. 2 inspection. No violations were found during a routine inspection Dec. 18.
Email Stephanie Salmons at firstname.lastname@example.org.