Guillain-Barre Syndrome: A Disease that Can Kill

Guillain-Barre Syndrome is something I had never heard of. That changed in April 2008, when a friend came down with it. Since then I've been trying to educate myself on this disorder. There is plenty of information on the Web and even on AC there have been articles written about it. All with successful endings. I, unfortunately, have a sad story to tell.

John has worked with my husband for about twelve years up on Lake Ouachita for RBS, a company contracted out by the Corp of Engineers. It is RBS's responsibility to keep all of the campsites and public access areas up and running on the lake. John and my husband work the general maintenance for RBS. Over the years they have become very close, just like brothers. John is much like an uncle to our son, James. Fishing and hunting is a passion that we all share together. So besides working together, the guys have done a lot of playing together.

Back in the spring, John had a bad round with a stomach virus. Nothing new, he'd been sick before. But this time, he just didn't feel quite right. He never really got over that virus. He kept feeling weak. Then that day in April came. The guys were climbing the side of the dam, spraying it to prevent weeds from growing on it. My husband worked at one end, John at the other. That's when GBS really hit him. He had to call the main office and tell them to come get him. By the time help got to John, he was losing the use of his legs. They took him straight to the ER.

At first, everyone thought John had had a stroke. But the doctors soon made the diagnosis of GBS. During John's hospital stay, the doctors kept saying that he would recover. They had seen this before and it may take weeks, months or years, but his body would slowly regain function. That is true for most patients with GBS. But, not for John.

John had slowly gained back some movement in his feet and hands, not much, though. He was going through therapy everyday and went through different treatments to get his body back to normal. But on July 21st as they took him off of the respirator to help build strength in his lungs, his heart stopped for ten seconds. This was a red flag to the doctors. They did some tests on him and by the end of the day, determined that his heart and lungs were not strong enough for a full recovery.

John had the choice of staying on the respirator for years to come or getting off of it and letting go. In his own right mind, he decided he didn't want to be hooked up to a machine the rest of his life. Even with the machine, with a weakened heart, he wouldn't live for very long. This is a man that is only 51 years old deciding that it was time to go.

Even though it has been very hard for us to accept, we respect John's decision. He lived a little over twenty hours after being taken off of the respirator. Longer than the doctors thought he would live. At 7:48 a.m., July 25th, John lost his battle.

John falls in the small 3 to 5% that do not survive GBS. This disorder happens when the immune system attacks the nervous system. Apparently, the virus he had earlier in the spring caused this to happen. His own body turned against itself. It's a very rare disorder, and like I said, most people recover from it. Why John didn't is not clear. It could have been that he was weak because he smoked most of his life. Or maybe there was another underlying problem that wasn't diagnosed. John was a pretty healthy man. (At least he appeared so before he was sick.) He was strong and worked outside all of his life. He didn't just sit around, he was a very active person.

The research I have done on GBS has shown that it is the leading cause of rapid paralysis in the United States today. The numbers given say that one to two people out of 100,000 are paralyzed because of GBS. It starts out as just a weakness, which is what John had. But he thought he was weak because he was still recovering from the stomach virus he had had. For some, tingling sensations in the arms and legs are an early sign of it. Most patients will require intensive care during the course of the disorder simply because it does affect the breathing muscles. As long as the person can depend on the respirator, he/she should be okay.

One of the treatments for GBS is a plasma exchange. High dose intravenous immune globulins usually help to shorten the duration of GBS. As long as the organs in the patient are able to function, there is usually a good chance for recovery. Sadly, for our friend, it just wasn't meant to be.

GBS is something that scientists continue to work on. They want to pinpoint the cause of it, some say it comes after a virus and some get it after surgery. So, if they can figure out the cause, they will be that much closer to a solution. They continue to work on finding new treatments and making the ones they already use even better. Many scientists believe that if they can find the cells responsible for the attack on the immune system, they can prevent it in future patients. Hopefully, some day, along with so many other diseases and disorders, doctors and scientists can put an end to the suffering they cause.