As I wash my hands for the millionth time today I am reminded (as I always am) of a flu season not too long ago. A time when I didn’t know that the flu could be a trigger for an extremely rare disorder called, Guillain-Barré syndrome or GBS. GBS can be triggered by a respiratory infection and/or the stomach flu. Although, GBS cases are only 1 in 100,000 it somehow made its way into my family’s lives changing us forever in a matter of weeks.
When we are sick our bodies respond by producing antibodies which attack the organisms that are making us sick. We begin to feel better as our antibodies conquer and kill off these invading organisms. GBS occurs when our antibodies make a deadly mistake and attack and kill the myelin covering on our nerve cells. This damage to the nerve cell prevents the nerves from transmitting signals to the brain, causing weakness, numbness, paralysis, and even death. The exact cause of Guillain-Barré syndrome isn’t known. The disorder usually appears days or weeks after a respiratory or digestive tract infection but may also be triggered by any of the following (causes and symptoms reported by the Mayo Clinic):
- Most commonly, infection with campylobacter, a type of bacteria often found in undercooked poultry
- Influenza virus
- Cytomegalovirus
- Epstein-Barr virus
- Zika virus
- Hepatitis A, B, C and E
- HIV, the virus that causes AIDS
- Mycoplasma pneumonia
- Surgery
- Hodgkin’s lymphoma
- Rarely, influenza vaccinations or childhood vaccinations
A couple of years ago my husband Ted, and I contracted a horrible stomach flu which lasted about two weeks. We experienced extremely high fevers with chills, nausea, and diarrhea. The worst flu I’ve had since I was a kid! Just when I thought we were on the mend, my husband started experiencing some other symptoms that he did not share with me. He started loosing muscle function in his feet, particularly his left foot. This impaired his ability to walk and to even take his shoes off. Over a matter of days, he began falling as the paralysis ascended up his legs. AND STILL HE DID NOT TELL ME. He reasoned that his body was fatigued from the flu we were both getting over but in fact he was experiencing the beginning symptoms of GBS. Other signs and symptoms of Guillain-Barré syndrome are listed below:
- Prickling, pins and needles sensations in your fingers, toes, ankles or wrists
- Weakness in your legs that spreads to your upper body
- Unsteady walking or inability to walk or climb stairs
- Difficulty with eye or facial movements, including speaking, chewing or swallowing
- Severe pain that may feel achy or cramplike and may be worse at night
- Difficulty with bladder control or bowel function
- Rapid heart rate
- Low or high blood pressure
- Difficulty breathing
A little over a week from the onset of symptoms, Ted began experiencing severe pain in his hips. The pain became unbearable at night although we tried ibuprofen, hot baths, ice and heating pads. After the second sleepless night I implored him to see a doctor. 24 hours later he was in the emergency room with a neurologist telling us about Guillain-Barré syndrome. We listened horrified with tears streaming down my face as he told us Ted needed immediate treatment and would probably need to be intubated soon as his neurological tests showed signs of further damage in his upper body which could shut down his ability to breathe.
Although there is no cure for GBS, there are two courses of treatment which can help speed up recovery and therefore reduce the severity of the illness:
- Plasma exchange (plasmapheresis). Blood is removed from the patient and separated into cells and plasma. The blood cells are then put back into the body without the plasma in the hopes that the plasma is carrying the antibodies that are attacking the nerves. This triggers the body to produce more plasma to make up for what was removed.
- Immunoglobulin therapy. High does of immunoglobulin is given intravenously to the patient. The immunoglobulin contains healthy antibodies from blood donors which compete with the damaging antibodies. At high doses, the healthy antibodies can block the damaging antibodies access to the nerve cells.
Ted received five treatments (once a day) of intravenous immunoglobulin to block the paralyzing effects of his own antibodies. These treatments arrested the progression of the paralysis but unfortunately did not reverse the damage that was already done to his nervous system. Nerve damage repair became a major part of his recovery.
Recovery begins about four weeks after the onset of symptoms and can last six to 12 months, though for some people it could take as long as three years. About 80 percent of adults recovering from Guillain-Barré syndrome can walk independently six months after diagnosis with about 60 percent fully recovering motor strength one year after diagnosis. About 5 to 10 percent have a very delayed and incomplete recovery. Later this year, we will cross the three year mark for Ted’s recovery. The neurologist has told us that after that point we should not expect any further repair to his nerves.
Although Ted’s recovery has been on the longer side, it is typical of others suffering from this syndrome. His recovery includes medication to deal with severe nerve pain, physical therapy to help cope with fatigue, regain strength and proper movement and psychotherapy to help deal with depression and adjustment to his new life.
Thankfully, his fatigue has lessened, his walking has improved, he’s able to perform daily tasks, and has regained some of the feeling in his legs and feet. But, it only takes a cough or stomach cramp from him to send me into panic mode. Statistically there is only a 3 percent chance of relapse but I am determined not to miss the signs again.
So, while we are all religiously washing our hands, please note that for some the flu might be the least of your worries. But, the first course of action is to avoid the flu by washing your hands! I hope our experience will help you to identify GBS symptoms in you and your loved ones.