An early surge in West Nile virus (WNV) cases has Mississippians bracing for a possible peak year for the mosquito-borne disease.
But that’s not the only reason a crowd is expected at the next meeting of a Jackson support group for WNV survivors.
The other draw is the meeting’s new location. On Aug. 24, the group will begin gathering at Methodist Rehabilitation Center, the Jackson hospital where scientists have made a series of significant WNV discoveries.
In 2002, Dr. Dobrivoje Stokic and Dr. Art Leis, both of Madison, were the first researchers in the world to report that West Nile virus can attack the motor cells of the spinal cord, causing a polio-like paralysis, muscle weakness and fatigue.
Now they’ve found evidence that even milder cases of the disease can damage the central nervous system, resulting in long-term, disabling symptoms.
Dr. Leis will update the group on that research, as well as a possible correlation between WNV and the neuromuscular disorder myasthenia gravis. And Sharon Sims, a program coordinator for the Mississippi Department of Health, will share the latest WNV info for what promises to be a virulent season for the virus. At the end of July, Mississippi was among three states accounting for 80 percent of this year’s early WNV cases.
While the news is not good, it’s better than no news at all for WNV survivors like Sandra Jordan of Hattiesburg—also a victim of myasthenia gravis.
Like many WNV survivors, Jordan has been frustrated by lack of knowledge about the disease. “To ask questions and not get answers is a terrible thing when you are lying in a hospital bed,’ she said.
The demand for information was at its peak in 2002, when WNV killed a dozen Mississippians and sickened 193. So the Mississippi Department of Health began a support group in February, 2003 with Sims of Florence as the organizer.
Almost a decade later, Sims says the group is still a valuable resource for those seeking to better understand the disease. “They say they learn more in the meeting from each other than anywhere else,” she said.
Methodist Rehab is now taking over the reins of the group, which is a logical transition, Sims said. The members have long valued the hospital’s commitment to WNV research.
“Whenever they see Methodist Rehab researchers are going to be there, we have a full house,” she said.
In their latest study, MRC scientists collaborated with Dr. Axel Petzold, a University College of London’s Institute of Neurology expert, to examine the blood of a broad spectrum of WNV patients—including 35 with neuro-invasive diseases such as meningitis, encephalitis and poliomyelitis and 55 with WNV fever.
The team knew from previous studies to expect abnormal brain or spinal cord proteins in the blood of those suffering the most serious forms of WNV infection. But some with WNV fever also had significant levels of the same biomarkers when compared to a healthy control group.
“We found over one-third of patients with WNV fever had these elevated proteins in their blood,” Dr. Leis said. “And that implies that the proportion of patients with neuro-invasive disease is much higher than has been acknowledged by the Centers for Disease Control. I’m hoping the CDC will recognize this and change their disease definitions accordingly.”
The study was published in the June issue of the journal Muscle & Nerve, and Dr. Leis doubts any West Nile experts found it surprising. “Anyone who has dealt with these patients understood even back in 2002 that there was no way that WNV fever was just another summer flu,” he said. “These patients have prolonged, disabling fatigue, recurrent headaches and difficulty concentrating and focusing attention, and this goes on for months after this so-called benign illness.”
Dr. Leis, along with Dr. Gabriella Szatmary, PhD of Hattiesburg, also are working to get the word out about the link between WNV and myasthenia gravis, a correlation they recently presented to a New York Academy of Sciences meeting. “It turns out the first patient that Methodist Rehab ever described with WNV poliomyelitis was also the first patient to develop MG several months later,” Dr. Leis said.
At the time, it was thought to be the result of WNV weakening the immune system and another disease taking hold. But by last year, Dr. Leis had found four more patients with the double diagnosis in the West Nile virus support group.
“We realized there was more to it,” he said. “We had heard through national meetings that other investigators were seeing this also. Then the sixth case came to our attention because a colleague at Mayo Clinic picked up the phone and called us. He said: I’ve seen the weirdest thing – a patient with acute WNV infection who several months later came down with classic MG.”
A type of auto-immune disorder, MG can weaken the voluntary skeletal muscles and includes symptoms such as double vision, drooping eyelids, fatigue and difficulty chewing, swallowing, talking, climbing stairs, lifting objects or rising from a seated position.
At its worse, it can impact the muscles involved in breathing, and some patients like Jordan end up on respirators. ‘It’s a terrifying disease,” she said. “I didn’t expect to survive.”
Whenever she had the strength, Jordan said she would search the Internet to learn what she could about West Nile virus and myasthenia gravis. But it was her husband who ultimately helped her find the right resource when he pushed her to attend a WNV support group meeting.
“At the meeting, Dr. Leis asked who at the meeting had both West Nile and myasthenia gravis,” Jordan said. “And I ran up to Dr. Leis and begged him to use me for whatever research he could do. I don’t want anyone to go through what I went through. I want there to be more information.”
It’s a common sentiment among support group members. “Anytime anybody mentions any type of research, they are on it,” Sims said. “They want to help somebody else.”
They also do a good job of urging others to “fight the bite.” And Sims said those messages resonate when people see the true damage a mosquito can do.
“It’s all about hearing a personal story,” she said. “I had a mosquito truck driver tell me: I’ve been on a spray truck 20 years of my life and now it makes sense that I’m doing what I’m doing. This is a life-changing illness.”
The next meeting of the West Nile virus support group in Jackson is 1 to 3 p.m., Aug. 24 in the second floor BankPlus Conference Center at Methodist Rehabilitation Center, 1350 East Woodrow Wilson Ave. A WNV support group also meets in Hattiesburg. For more information, call 601-981-1234.