“They didn’t think that she would live…” – Peter Kenton, survivor’s husband
I’ve written twice about the very rare but highly dangerous tick-borne Powassan virus, here, and here. It is now very much in front of us because of recent publicity – in this paper and others. I hope this is my final entry on the matter, but this post is special because it can be helpful to others who may at some time experience similar symptoms.
I’m grateful to have had extensive correspondence with York County’s Laurie Kenton (not her real name), Maine’s first diagnosed case of Powassan, in the fall of 2000, at the age of 53. Some small details in her writing, including hers and her husband’s name and certain locations, have been changed out of respect for their privacy. Her story is well known to the medical and public health communities, but not to the rest of us.
I’m also grateful to her doctor, Tom Courtney (his real name), infectious disease specialist at Southern Maine Health Care in Biddeford, who gave up valuable time to participate in this account.
I’ve added, as well, the CDC report of her case, distilled from Hinten et al., a comprehensive (and very technical) “white paper” on increased recognition of this deadly virus, downloadable here.:Hinten Powassan VBZD 2008.
This is the full story, in their own words.
“I started seeing starbursts…”
It was late August, 2000. I had no knowledge of a tick bite. I never found a tick anywhere on my body.
It started in the night – [My husband Pete and I] had been out having dinner and I started seeing starbursts. When I got up in the middle of the night I had difficulty holding my head up and by the next day, I was ill – especially nauseous. We had planned to go to our camp on the river the next day, and when I was still feeling ill I suggested Pete go ahead and I would drive up later. That was a mistake. We were going up there to paint floors and my husband drove up and proceeded to do just that. [note: at the time, the camp had no phone, and the Kentons had no mobile phone].
I stayed home and became sicker and sicker and more feverish. I stayed in bed sweating from the fever with the symptoms worsening. Soon I couldn’t hold up my head and I had double vision and the nausea continued. I also became confused. I finally called my son in Belfast and told him I needed Pedialyte [an electrolyte solution for people, usually children, with diarrhea] and a patch for one eye so I could see. My husband was unreachable and my children were all working, so I just lay in bed. I don’t really know what prompted me, but I finally decided to call a friend, who was a local crafts dealer. She was away, but one of her employees offered to come over and help me. When she arrived she quickly recognized the severity of my condition and called 911.
DR. TOM COURTNEY
Laurie’s primary care physician immediately called in a neurologist and myself to join the case. Clearly this was an unusual presentation.
CDC REPORT: In September 2000, a 53-year-old woman from York County, Maine, sought medical care at a local hospital for loss of balance, visual disturbance, and fever of 103 F (39.4 C). Her clinical examination showed agitation without confusion, ataxia, bilateral lateral gaze palsy, and dysarthria…
“The neurologists continued to argue the diagnosis… “
I was taken to Southern Maine Health Care (ed. note: then Southern Maine Medical Center), where I was fortunate enough to have Dr. Tom Courtney, a specialist in infectious disease at the hospital. He properly diagnosed me as having some sort of infectious disease, a diagnosis disputed by the neurologist on call. The neurologists continued to argue the diagnosis throughout my hospitalization and during two seminars held about my disease…. The neurologists were talking Guillain Barre syndrome, or possible stroke.
Because of her high fever, high white blood cell count, and neurological symptoms, we were leaning toward an encephalitis-like infection. Herpes encephalitis was possible, but the serological (blood/cerebral spinal fluid) test was negative. We believed the cause was an arbovirus. We ran a panel of tests for West Nile, for Saint Louis Encephalitis – all negative.
Powassan, which was barely known at this time in North America, became a possible candidate as the infecting pathogen.
(some NW notes: an arbovirus is an ARthropod-BOrne virus. Arthropods are ticks and mosquitoes. Also, Maine has had just one West Nile case in its history, in 2014, and no Saint Louis Encephalitis cases ever. Both of these are more prevalent south and west of us).
CDC REPORT: During hospitalization, she developed altered mental status, generalized muscle weakness, and complete ophthalmoplegia. An electroencephalogram (EEG) indicated diffuse encephalitis, and a MRI showed bilateral temporal lobe abnormalities consistent with microvascular ischemia or demyelinating disease…
“We had the hard discussion…”
My condition worsened, even though I was placed on three IV antibiotics (one of them a viral antibiotic). I was placed in the ICU in seclusion. I remember being curled up in a fetal position and trembling all over. My husband finally arrived at midnight — a friend in town had taken a boat up the river to notify him.
We had the hard discussion. My husband was sitting next to me. He said, “you are really sick.” My response was just “I know.” With no emotion … I know I was in a confused state and was not perceiving things correctly.
I was so ill that my oldest daughter actually moved to our town… Both she and my husband came to the rehab hospital every day to be with me – Pete would come in the morning – my daughter later in the day and evening. My son-in-law and my son would drive down from Belfast once a week, my sister … would come in the evenings. Health South was amazing! They waived all visiting hours! It was a very disruptive event for all of us. And I would have found my hospital stay much more difficult without having family around – I literally had some one with me all day and into the night until I went to bed.
I did not think her life was in jeopardy, but she was very ill. Just about the time Laurie started to improve, we sent a sample to the CDC’s Fort Collins, Colorado facility for serologic testing for Powassan virus. It came back two weeks later as positive.
And then suddenly my symptoms improved. In a week’s time I was transferred to the Health South Rehab facility in Portland.
Considering how much worse it could have been, in a manner of thinking she was fortunate. Often in such severe infectious disease cases, a person’s antibodies kick in after about two weeks and start battling the invader. Laurie’s antibodies did just that, and very effectively.
CDC REPORT: After 13 days, she was transferred to a rehabilitation facility where she remained for 2 months. Nine months after onset of symptoms, she was walking and had regained her strength, but the ophthalmoplegia continued. A serum specimen collected 19 days after illness onset was positive for POW…
“I had to learn to walk again…”
So I was left with complete paralysis of my upper body – I lost tears, blinking, the ability to produce saliva and I could barely swallow. My eyes were completely paralyzed, I had lost the saccades* movement, and I had double vision and no depth perception. I could not move my arms and my breathing was shallow because my lung muscles had been compromised.
(*ed. note: saccadic movement is rapid, coordinated eye movement from one point of focus to another. For much of her illness, Laurie’s eyes were looking in different directions)
I spent three months at Health South with physical and occupational therapy twice a day. I was on seven different medications including oxycontin, trazadone and xanax. To this day I wonder if I really needed any of them. I was in no pain – it was the physical and occupational and therapy I needed. And because of balance issues and changes in muscle capability – I had to learn to walk again.
“But I am still here…”
I left the hospital just before Thanksgiving [note: 3 months after her infection] – earlier than the doctors wanted. I couldn’t hold my head up yet and wouldn’t be able to for three more months. I wanted to go home and so I did.
I continued physical therapy at University of New England. Pete and I subsequently made a decision to move to Sea Island, Georgia, where we had planned to retire. The terrain was flatter and it was warmer with no snow so the thinking was I would be able to get around easier.
Down south, I continued to work with a physical trainer for three years. Six years and and six grandchildren later we decided to move back to Maine. All our children were still in New England.
My vision problems still remain the same, I have range of motion issues with my arms as well as balance issues.
But I am still here. And I honestly believe Tom Courtney saved my life.
I should have immediately known that double vision and trouble holding up my head were not normal symptoms – I should have immediately sought help! The longer you wait the more unlikely you will live. The whole time I delayed the virus was just eating away at my brain stem!!
I want people to understand that the symptoms are very odd, so be careful!
From me: Once again: Powassan is extremely rare. Between 2 and 4% of deer ticks in Maine carry it, and it’s on the rise. It’s lethal in 10% of cases, and causes lifelong neurological disability for some 50%. Prevention, especially with permethrin, is the best defense.
There it is.