“I thought I had the flu because I had chills, so I got Tamiflu from the doctor to keep going,” Tricia Mynar remembers. “I’m a workaholic.”
The veteran preschool teacher and administrator for Kamehameha Schools felt her first symptoms of angiostrongyliasis – rat lungworm disease – on Feb. 24, while temporarily assigned to work for a month on Hawaii Island.
That is the island where the disease is currently most prevalent in Hawaii.
A spike in possible cases recently reported on Maui, which previously had only one confirmed victim, has added urgency to calls for more money to combat rat lungworm disease, in which worm larvae invade human brains.
People can contract the disease by consuming raw produce contaminated with tiny snails or slugs that have eaten the worms.
Mynar, 47, was living in Waimea five days a week and flying home to Maui on weekends.
“The following Tuesday after I got the flu symptoms I called in sick and went to the doctor,” she says. “My flu was better but I had this weird sensation in my right foot, like someone had dropped a suitcase on it.”
More pain came, this time shooting from her scalp down her spine into her back.
“I became so sensitive to any kind of wind that blew through my house I had to stand up and rest my head on the kitchen counter to get any kind of sleep. I couldn’t lay down on anything because of the pain.”
She was prescribed more medication.
Two days later, a week after her first symptoms, she thought she was having an allergic reaction to the meds.
“I had pain all over my body, but especially on both sides of my spine. It was like I was getting a shiatsu massage but the person forgot to remove his fingers and was trying to knead his way into my lungs, pushing, pushing, trying to push my back into my chest.”
By then she suspected something else was happening besides the flu. When she couldn’t feel three toes on her right foot she flew to Maui. Back home, her upper left arm “was so painful I couldn’t stand for anything to touch it, no clothing, no sheet, not even the slightest breeze.”
Her doctor gave her an anti-inflammatory shot, but told her “this is strange.” He drew blood and test results showed a parasitic level of 19. She said the normal range is 6 or lower.
“I thought maybe I’d gotten something from eating sushi so I got some more medication,” Mynar said. “An hour later I called him from home and told him I felt worse.”
He told her to head for the emergency room and said he suspected she had rat lungworm disease.
While sitting in the ER at Maui Memorial Medical Center for more than six hours, new miseries overwhelmed her.
“It was like someone suddenly took a lei needle and pushed it through the soft spot on top of my head, then pushed it down below my left ear, then up to my left temple, then moved from back to front behind my right eye. As the lei needle pain shot out through my right eye there were flashing white lights.”
Remembering her suffering, Mynar’s voice trembles.
“Don’t ever say to me that labor is hard,” says the mother of three. “Labor is like eating ice cream after surviving the feeling of a lei needle shooting through your brain and out your eye.”
She said an ER physician who had been in Hilo had heard of rat lungworm disease. Mynar agreed to a lumbar puncture to test her spinal fluid, the only sure way to confirm the condition. Her results came back positive, she was admitted, and spent the next week in the hospital.
Her parents, Terry and Sharon Mynar, are now caring for her at their home in Pukalani.
“I have parasitic meningitis,” Mynar said. “The parasites are in the lining of my brain, moving around. Because I work with children I try to tell stories through word pictures. My visual graphic for what’s happening is that every once in a while somebody opens the top of my head, sets a hot iron inside my brain, then pushes the steam button.
“I have a half dozen medicine bottles, several for pain because any movement of my head spikes my pain level to 12. I don’t see any improvement, just that every day is a different day, different pain. Tremors are the hardest part. They affect me so bad that sometimes I can’t hear my own speech. My whole walker starts shaking.”
There is no specific treatment for angiostrongyliasis. Patients battling rat lungworm parasites are prescribed antiobiotics for infection and morphine and oxycontin for pain.
Mynar says friends who call to offer support don’t believe her when she describes the drastic changes in her life.
“I have a home nurse. My doctor comes to the house because it is so painful to move. I have a physical therapist and an occupational therapist. Yesterday I tried for the first time to open a book and learned I have blurred vision. Somebody came to clean the yard and the noise was so horrible I had to smash the sides of my head with pillows.”
After a month, she is able to walk down five stairs and sit on the grass, “but because I don’t have feeling in my right foot, the first time I did it I burned my sole on the hot concrete. I have to be very careful in the shower because I don’t have any feeling in four of five fingers on my right hand.”
Mynar says she is calming herself and documenting her new reality by taking photographs.
“I decided I want people to know what’s happening to me so they will be aware of this disease,” she says.
She wants to share “my story with local people through word pictures and real pictures. I am calling it ‘My Life Lying on the Brown Sofa.’”
Mynar said that several years ago her best friend died of cancer, then a few months later another friend was diagnosed with the same disease. He survived. Their suffering left her angry and hurting.
“But I see now that those hurts prepared me for my own medical challenges. If those losses hadn’t happened to me I wouldn’t have the patience to endure this.”
Her voice trembling with exhaustion after an hour of conversation, Tricia Myna ended her story:
“I just sit here waiting to get better. There is too much anger in the world. It could be worse. I have to be thankful.”