To Your Health

Information on and how to treat Guillain-Barre syndrome

Q. My niece has recently developed Gillian-Barre syndrome. I am trying to find out more about it but I'm not getting much information and especially not much on how to treat it. What do you know about it?

A. Guillain-Barre syndrome (pronounced ghee-YAN bah-RAY) is a rare disorder in which the immune system attacks and destroys the nerves that lie outside the Central Nervous System (the brain and spinal cord), leading to weakness and sometimes life-threatening paralysis. Men and women, young and old, are equally prone to contract it. It is a complicated disease, poorly understood, difficult to diagnose, and with very few treatment options. In addition, there are a lot of weird ways that people spell it, like gillian bar syndrome, gillain bar syndrome, guillian barr syndrome, gilean barre syndrome, gillean barre syndrome, or gillain barre syndrome, that make it hard to look up information about it.

In about half of all cases, the onset of the syndrome follows a viral or bacterial infection, although a small number of cases have been known to occur after a flu shot or even an insect sting. The first symptoms include weakness to varying degrees, beginning in the feet and legs then spreading to the arms and upper body. Most people reach the stage of greatest weakness within two to three weeks and it may be necessary at this point to use a respirator to assist in breathing.

Today relatively few (fewer than 5%) die from this syndrome though recovery may take several months or even years. Most people eventually recover nearly completely, but about 20% of patients are left with persistent and significant disability, and even many years after the initial attack about 3% may suffer a relapse.

The current standard treatment is intravenous immunoglobulins. Most people are familiar with gamma globulin or IgG, which is often given by injection to a person threatened with hepatitis infection. There are other immunoglobulins (IgM and IgA for instance) that the body uses as part of its defense against infection. Intravenous administration of immunoglobulin G alone, or a mixture of all the immunoglobulins, has been found to hasten recovery from Guillain-Barre syndrome. No one is sure why this treatment would help. It has been found that the blood of patients with Guillain-Barre syndrome, but not the blood of unaffected people, contains immunoglobulins (antibodies) that attack myelin, the "insulation" that surrounds nerves (see Intensive Care Medicine for Oct. 31, 2005, pp. 1401-1408). It may be that replacing the "evil" immunoglobulins that are trying to destroy nerves with normal immunoglobulins gives the nerves some time to repair. Another standard treatment, known as plasmapheresis, may accomplish the same goal by simply removing all the antibodies from a patient's blood temporarily and replacing them with other proteins. Immune suppressants such as cortisone do not seem to help.

There does not seem to be a nutritional "magic bullet" to treat Guillain-Barre syndrome, but because of the nature of the disease, patients are using a lot more energy. High-energy and high-protein food intake lessens the loss of muscle tissue, and because swallowing may be difficult, this sometimes requires tube feeding.

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