By Susan Christensen
Health and Research News Service
RANKIN COUNTY, Miss.—When John White and Danny Beard became so weak they were virtually paralyzed, they truly didn’t know what hit them.
The Rankin County men had never heard of Guillain-Barre’ Syndrome (GBS), and they can’t say they’ve been pleased to make its acquaintance.
“I wouldn’t wish this on anybody,” said Beard of Brandon, a diesel mechanic for United Parcel Service. “Before I went to the hospital, I couldn’t get out of bed. My sister-in-law had to bring an office chair to wheel me to the car.”
“Mine got so bad I couldn’t tear paper off a straw,” said White of Star, a vending route operator. “It’s still in my feet and it’s like wearing concrete boots.”
The neurological disorder is rare, affecting only one to two people per 100,000. So White and Beard were surprised to learn they are among six patients now recovering from the rare disease at Methodist Rehabilitation Center.
GBS occurs when the body’s immune system attacks myelin, the insulation that surrounds and protects nerve fibers, said neurologist Art Leis, a senior scientist at the Jackson hospital’s Center for Neuroscience and Neurological Recovery. The resulting damage leaves the nerves like frayed telephone wires and disconnects communication between the brain and muscles.
“Most patients initially complain of loss of sensation or weakness in their feet,” Leis said. In the worst cases, victims become completely paralyzed and must rely on ventilators to breathe.
According to the Centers for Disease Control, symptoms usually reach their peak by four weeks and more than 95 percent of GBS victims survive. While most patients recover functionally, about 20 percent are left with persistent symptoms.
White has experienced one relapse, and Beard was recently diagnosed with a chronic form of the disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
Leis said about half of GBS cases are triggered by some type of viral or bacterial infection. “Typically it’s an upper respiratory infection, but it also can be gastrointestinal,” he said. “Some cases of gastrointestinal infection have been linked to Campylobacter, a bacteria found in undercooked foods such as poultry.”
White, 45, believes his illness is related to a stomach virus that he had about two weeks before his first GBS symptoms. Beard, 47, isn’t sure about the source of his suffering. “They told me I could get it from a viral infection or a tick or mosquito bite, and I had all three in the same week,” Beard said.
Other risk factors associated with GBS include vaccinations, stress and surgery. People who have compromised immune systems because of conditions such as HIV or West Nile virus also may be more susceptible to the syndrome.
Leis said he’s not sure if the cluster of patients at Methodist reflects a rise in GBS following Hurricane Katrina or is merely coincidental. But he says at least two of the cases do appear to have a hurricane connection.
Jackson lawyer LaKeysha Greer believes her illness was triggered by the hepatitis B, tetanus and diptheria vaccinations that she got in anticipation of volunteering on the Mississippi Gulf Coast. And June Gautier, a temporary Jackson resident, says her GBS may be the result of the tetanus and flu shots she received before heading to Long Beach to inspect her hurricane-ravaged home.
While the CDC says less than 1 percent of GBS cases have been linked to vaccinations, a cluster of GBS was associated with the Swine Flu vaccine of 1976. And as recently as September, the Food and Drug Administration sounded an alert over five reports of the syndrome among teenagers receiving certain meningococcal vaccines.
Nevertheless, Leis advises against using the threat of GBS as an excuse to skip necessary vaccinations. “The risk of developing GBS is minimal compared to the risk of developing the diseases that the vaccines prevent.”
He adds, however, that it is important to be aware of the connection and seek medical help if you have weakness, numbness, tingling or increased sensitivity following a vaccination. Since Guillain-Barre’ can progress fairly rapidly to paralysis, support services can be critical.
When White and Beard first sought a diagnosis, their physicians seemed as baffled as they were. “What made me feel helpless is no one could figure out what was going on,” White said. “They acted like it was all in my head.”
Beard said doctors initially suspected he had arthritis. And Leis said it’s not unusual for GBS to be mistaken for other illnesses. “Early on, clinical symptoms can mimic other diagnoses. That’s why it’s important to consider GBS when patients complain of weakness and numbness that starts in the hands and feet and ascends to include the whole body—especially if these symptoms occur a few weeks after vaccinations or an upper respiratory or gastrointestinal illness.”
GBS can be confirmed by analyzing spinal fluid for evidence of elevated protein levels and conducting electrodiagnostic studies to examine nerve and muscle function.
To treat Guillain-Barre’, doctors often prescribe immunoglobulin therapy or plasmapheresis, a process that removes disease-provoking components from the blood. Leis said such treatments can prevent damage to the nerve fibers, and facilitate a better outcome. “In many cases, if only the myelin is damaged, recovery is excellent. But if the nerve fibers themselves are damaged, recovery can be slow and incomplete.”
Leis said extensive physical and occupational therapy also is critical. And as Mississippi’s only hospital that specializes in rehabilitation medicine, Methodist attracts GBS patients from across the state. Since January of 2000, 26 have come to Methodist to recover from the syndrome’s debilitating effects.
Since arriving at Methodist, both Beard and White have been cheered by the progress they’ve made. “I’m almost to where I can walk without a cane and I’m getting the strength back in my hand,” White said.
Beard is back on his feet, too, albeit with the aid of braces and a walker. “They think I may have trouble again but I’m hoping to prove them wrong,” he said.
White, too, is optimistic—and grateful. “The main thing that has gotten to me is all the things I used to take for granted, then couldn’t do—like opening a Coke can or shaving. It makes you appreciate what God gave you.”
Methodist Rehabilitation Center is one of only 16 hospitals in the country designated as a Traumatic Brain Injury Model System by the National Institute on Disability and Rehabilitation Research and is only one of two in the state accepted into the prestigious Council of Teaching Hospitals. It is also the only hospital in the state to be named one of America’s best by US News and World Report.