Story by Robert Allen
GRAND JUNCTION — At 42, Monique Mull was in excellent health. She enjoyed hiking at the Colorado National Monument and tending her garden at home in Grand Junction.
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Early July 2004, a mosquito bit Mull on the left elbow. She said she remembers waking up with a splitting headache at 2 or 3 one morning. Days went by and she couldn’t relieve it with medicine.
She complained to a nurse when her back began to ache as well.
“Her eyes got real big and she said backache is one of the (West Nile) symptoms, and headache is, too,” Mull said.
She said she developed a skin rash shortly after the bite, which is typical for about 30 percent of those showing West Nile virus symptoms. It went from her shoulders to her elbows and from the top of her thighs to her knees.
“And the joints got flame red,” Mull said. “It was just like little tiny dots and it just filled in but the joints were even like hot to touch.”
This lasted a couple of days. And, though certain she had contracted West Nile virus, she had to wait seven to nine days after the onset of symptoms to be tested.
Mull said her peripheral vision started “getting messed up.”
“Some days I could see, some days I couldn’t,” she said. “I quit wearing my contacts because I didn’t know if it was better or worse.”
Mull said that for about three weeks, her sight actually improved. She was able to read small print on the television without corrective lenses. Her optometrist later told her that this was likely caused by swelling pushing on the optic nerve.
“It’s very strange because you’re actually processing, you’re seeing things out here and your brain processes,” Mull said. “Well, all the sudden something went ‘phoom.’ It was just kind of jumpy and I wasn’t seeing.”
Blood tests revealed she was infected with West Nile virus — a potentially deadly disease that has spread across North America since it was discovered in New York, 1999. For more details regarding the spread of the disease, see related article.
Progression of pain
Mull said the illness moved through three distinct phases. The first lasted through most of July, when she endured headache, back pains, body aches, loss of appetite, nausea and fever. She was still working for Mesa County, but would take a deep, three hour nap each day when she got home.
At the end of July, the backache turned to severe back pain.
“I went to the doctor on a Monday morning and by that time I couldn’t bend over and pick up my purse off the floor,” Mull said. “I had real limited movement and they sent me to the emergency room, basically for a spinal tap to check for meningitis.”
However, once she and her husband met the neurologist, he talked them out of doing the lumbar puncture. He told them that regardless of the test results, the only treatment would be bed rest and fluids.
“He said that ‘looking at you, you more than likely have meningitis, but how bad do you want to know?’” Mull said.
She said that since then, her neck popped out twice and she had to see a chiropractor. He told her the neck problems were due to meningitis.
Mull’s doctors ran several tests on her, including a throat culture for strep. She said she thinks they were having difficulty attributing West Nile symptoms in a healthy adult.
By then, it was early August and the illness had progressed into the second phase.
“At that point, it’s fatigue that is overwhelming,” Mull said. “I spent the day in bed. I didn’t work the whole month of August. My days consisted of taking a shower, sitting on the patio long enough to let my hair dry and I climbed back into bed. I didn’t do anything.”
She said she was in a confused, disoriented state. This is when doctors think the encephalitis began. Once again, she was not tested, as it would not have affected the treatment.
Toward the end of the month, she began to feel better, and tried going to work for a few days. Then phase three set in.
“Now my headache is this noisy headache,” Mull said. “I don’t have the words for the symptoms, to describe them. They were so strange. I didn’t have visible symptoms except for the weight loss.”
She lost more than 15 percent of her total body weight in two months, lying in bed.
“At least the doctors could see that, where they couldn’t see the other symptoms that I couldn’t describe, like the noisy headache,” she said.
Mull said she had never had a migraine before the infection, but was now suffering from them consistently. In addition, she developed insomnia. After sleeping through most of August 2004, Mull was now unable to sleep.
“My brain lost that sleep sequence of how your body goes into relaxing and going to sleep. My eyes wouldn’t close. My body wouldn’t relax,” she said.
She said she developed Restless Leg Syndrome, which is common with encephalitis patients. The syndrome causes its victims to want to constantly move their legs in order to get comfortable.
“It felt like every nerve in my body was charged, but the rest of my body didn’t know what to do,” Mull said.
When she tried to describe this to her doctor, Mull was told that she just wasn’t used to being sick. Again, the doctor was not expecting to see a healthy adult “impacted” and assumed she was suffering anxiety.
Mull went to a seminar a year later, where she met a neuropsychiatrist from Denver who works with severe West Nile cases. Neuropsychiatry is “psychiatry relating mental or emotional disturbance to disordered brain function,” according to the Oxford American Dictionary.
Some this doctor’s patients undergo therapy in which they relearn how to speak and walk. He told her the bizarre symptom she experienced was not a reaction to West Nile, but rather an effect of it.
Mull said that during the illness, doctors had prescribed her several pain relievers and even sinus medicine. None of it could alleviate the misery.
An unorthodox breakthrough
Her options slimming, Mull turned to an alternative solution that proved successful.
“I decided to try acupuncture,” she said. “I was at a complete loss there, and it was the best thing I ever did. I don’t know how, I don’t know why, but it took away that queasy, nauseous (feeling) and finally took the edge off the headache.”
She started going to therapy once per week, then progressed to once every other week, from September to January, 2004. The acupuncturist placed needles on either side of her back, legs, wrists and forehead at 25-minute intervals.
Immediately after her first treatment, Mull felt well enough to eat her first meal in three days.
“It was so weird,” she said.
One day, she told the acupuncturist that her neck hurt and she didn’t know why.
He had Mull lay down and he put his hand over her shin, never touching her neck. He told her that the C2 vertebrae in her neck was out of alignment and sent her to a chiropractor to have it adjusted.
The chiropractor discovered that the acupuncturist was correct, and was astounded.
“At that point, the chiropractor goes, ‘that guy has an incredible sixth sense to know what’s going on in the body,” Mull said. The chiropractor told her the dis-alignment was caused by meningitis.
By January, Mull felt well enough for physical therapy. She said muscle atrophy accounted for most of the weight loss.
“Because I didn’t have the muscle mass to support the skeletal structure, I was compensating in different ways,” she said. “Walking from the parking lot into the office, I was pretty tired.”
She finally returned to work full time, after what had accumulated to nine weeks of sick time. The insomnia did not subside until December 2005, after more than a year.
“I’d gone 18 months with significant symptoms,” Mull said.
She said that she is still not over the illness, as her health will be fine for weeks at a time, then relapse into the exact symptoms for about one week. Through most of 2005, Mull would have what she calls a “crash” about every three weeks. She has yet to go more than three months without at least a five-day regression into the hypersensitivity and nausea. The most recent relapse was last month.
Mull has to be careful not to stay in the summer heat too long, as her therapist warned that its effect on the central nervous system has a tendency to cause relapse. She has to limit the time she spends hiking and gardening.
“I’ve mowed the lawn and done some weed stuff,” she said. “And it’ll go into neck pain. But if I don’t take something, it’ll go into a relapse.”
Mull said her health is still not close to the way it was before the bite more than two years ago. However, she is glad to have made it through the worst of it. At the lowest, her body weight had fallen about 22 lbs from what it had been when she was healthy.
“I probably weighed what I weighed in eighth grade,” she said. Sha said she was able to wear the same size of jeans as her 12-year-old daughter.
Mull’s doctors say the relapses should diminish to the point that they eventually disappear.
“And that’s what I have to hang on to,” she said.
Contact Robert Allen via e-mail at roberta@montrosepress.com
Kaitlyn Heichel wrote on Nov 3, 2009 2:01 PM:
Sarah Bond wrote on Jul 13, 2009 5:31 PM: