My Experience with West Nile Virus
(written in 2005)

 

It had been a great evening…my son-in-law and grandson were visiting from Germany while my daughter was deployed near Afghanistan.  We had just eaten dinner with his family at a restaurant near the airport and were talking outside as the sun was setting.

 

I felt a sting in the crook of my arm and when I looked down a mosquito was biting me in the large vein where you get blood drawn.  I smacked it and jokingly said “You’d better not have West Nile Virus!”   Five days later my world was turned upside down.

 

I started out with chills but no fever and I was itching all over.  Then I developed a headache, became nauseous, had swollen glands in my throat and my neck became very stiff.  I could hardly stand to have the windows open because the sunlight hurt my eyes. 

 

Because I didn’t have a fever we weren’t that concerned – there was a “headache virus” going around and I figured that’s what it was.  Two weeks later I felt well enough to try to go to work, but realized I was just too fatigued. The cycle seemed to start up again, this time including a cough and very sore throat, but no head cold.  The fatigue was becoming severe and the headaches worsening. 

 

We’d heard plenty about West Nile Virus but the reports of serious infections always seemed to include high fever, rash, tremors, paralysis, etc.  It was now 5 weeks after I’d been bitten and just to rule it out, I had a test done by the State Health Department which came back negative for IgM antibodies.  My white blood count was normal but I did have elevated antibodies for Epstein-Barr virus so we thought perhaps that was causing the symptoms.

 

A few weeks later I drove into the mountains to take pictures of fall foliage and walked down a little trail to get near an aspen grove.  I was starting to feel tired, so I headed back to the car sooner than I had planned.  On the way I collapsed – my heart was pounding, I felt like I couldn’t catch my breath, and my muscles just wouldn’t move.  I knew at that point something very serious was going on.

 

Within the next few weeks the headaches became markedly worse.  I was now sleeping about 20 hours a day and was having increasing problems with dizziness, disorientation, memory loss, nightmares, depression and tremors.  I had just filled a prescription for a thyroid medication that I’d taken for months with no problem, but now it seemed to be correlated with the worsening of the symptoms (when I stopped taking it a few months later the headaches finally disappeared – we are now looking into contamination of the product to see if it exacerbated the West Nile symptoms). 

 

Because my WNV test had been negative, we began looking for other causes of the neurological symptoms including MS, ALS, lyme disease, and anything else that might be responsible.  My balance was so bad I had to use a cane and I quit driving.  I couldn’t seem to process information and when cars were coming toward me I would panic because my perception was so distorted.  I was having trouble breathing and swallowing and had to be concentrate when I was eating or I would choke.  At night if I rolled onto my back during my sleep I would stop breathing and wake up gasping, so I had to prop pillows around my back to make sure I stayed on one side. 

 

I have almost no memory of that fall and winter.  I had planned to stay with my daughter in Seattle to help with the birth of my granddaughter, but that was out of the question.  I was so sensitive to sound and so fatigued that I couldn’t attend church any more or participate in social activities.  I even slept through the Super Bowl for the first time in years!  My husband was taking care of the cooking and most chores – even bathing was difficult because I would start to black out in the shower. 

 

As far as cognitive function, I seemed to lose the ability to do anything with numbers.  They looked like hieroglyphics to me and just balancing a checkbook was torment.  I had been doing some web design before getting sick and kept trying to work on a site for a client, but I couldn’t sit up for more than 15-30 minutes at a time and my brain could not seem to figure out how to do things sequentially.  I had a few focal seizures and a constant tremor in one arm, but EEGs and blood tests were still looking fine. 

 

By summer I had numbness and tingling radiating from my spine.  Some days my whole face and throat would be numb, others it would be my arms or legs or chest.  It was a bizarre feeling.  The pain in my legs was almost unbearable at times – just going to the grocery store for a few items was a major ordeal and I was exhausted from the pain.  A neurologist diagnosed me with “neuroinflammation” and peripheral neuropathy, but still no answers as to the cause.

 

By fall (it had been a full year now) the fatigue was very gradually improving and I could stay up for longer periods.  There was also some improvement in cognitive function, but it was still too unpredictable to work at set times.  I had come across some stories about West Nile survivors and began to suspect the test was a false negative.  I asked to have it repeated, this time at the Mayo Clinic lab.  When it came back positive, I was relieved that I finally had a diagnosis, but concerned with how little information I was finding on how to deal with the long-term effects.

 

I made an appointment with one of the top West Nile specialists in the country, Dr. Nelson Gantz.  He confirmed the diagnosis and assured me that what I had experienced was not uncommon among his patients.  Many had lost careers and were still struggling with fatigue and cognitive problems.  He also told me that many of his patients tested negative for the first three months.  There are no treatments specifically for the virus other than an experimental medication that some had received during the initial onset (and which probably saved many lives), but was discontinued by the manufacturer. 

 

I called and met with other West Nile survivors and began to compare notes.  One in particular was such an encouragement…he had been bitten a year before me and was finally starting to see improvement.  West Nile encephalitis is a brain injury and like all brain injuries, time is the best healer. 

 

It’s now almost two years since I contracted West Nile.  I still sleep about 10 hours a day and need a long nap every afternoon.  My legs hurt most of the time but my balance has improved with therapy.  Exercise makes everything worse at this point, so even a short walk is quite a challenge.  I can do more of the household chores – some cooking and light cleaning – but even a few loads of laundry will wear me out for the rest of the day.

 

I am slowly regaining my ability to concentrate and can work on web design or bookkeeping a few hours a day.  I still make a lot of mistakes, but at least I’m seeing improvement.  Life is definitely a challenge, both physically and mentally.  We still don’t know what the long-term prognosis will be, and I can’t let the unknowns of the future keep me from living in the present. 

 

I’m grateful for the support and encouragement of other West Nile survivors and hope this site will help others who are dealing with the effects of the virus.  We need to educate those around us about prevention, and we need to help those who are dealing with the depression and discouragement that comes from experiencing such a devastating illness.  Believe me, it can happen to you!

 

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