“Maybe you can’t have a live vaccine?  Are dead vaccines okay?”  “Does the virus stay in your system?”  “Can I catch what you have?”  “You can get this again?!”  “Are you sure you are pronouncing this correctly, it’s not spelled that way?”  “What makes you think this is what you had?”  These are just a few questions I was asked.

Yes, I am pronouncing Guillain-Barre correctly.  I heard the many doctors and nurses pronounce the name before I knew the spelling.  It is pronounced: “gee-YAH-buh-RAY”.  In the weeks I was in ICU, many doctors came through the unit but when the Centers for Disease Control verified the diagnosis of West Nile Virus, it confirmed the preceding cause of Guillain-Barre Syndrome. The doctors were relieved to know they had been on the correct track with my treatment.

The warning of never getting another vaccination was repeated often by my doctors although new nurses clutching their checklists tried to administer the flu vaccine while I was in ICU, acute and subacute facilities.  In the past, vaccines have caused this syndrome in some people.  Live or dead vaccines, it doesn’t make a difference.  Guillain-Barre (GBS) is not a virus or bacteria.  Vaccines rally the immune system to attack the small amount of virus introduced to your system to create an immunity to a virus.  GBS is a disorder which, causes the body’s immune system to switch into overdrive in response to a perceived threat.  Rogue antibodies attack in an overreaction to a threat by damaging the myelin sheath covering the nerves. Myelin is like the insulation covering on an electrical wire.  When this insulation is damaged, shorts are created cutting off the flow of messages from the brain to the muscles.  Muscles go slack awaiting messages, resulting in weakness and paralysis from these short circuits.  The longest message routes through the nerves are to the toes and feet.  The first feelings can be felt with tingling and loss of control as the damage travels upwards through the core toward the diaphragm. My doctors asked me what this sensation felt like, this was my description:  It felt as if my skin was encased in plastic tubing with water running up and down my body through the streams of tubes.  The sensation of plastic covering my skin remained and as I began to get movement, I described it as if the plastic was being peeled away.  When paralysis proceeds up to the diaphragm it is difficult to breathe to the point of requiring intubation.  If the nerve damage proceeds to the heart and lungs which are also muscles then, that is the end.

What causes GBS?  No one knows what causes it or why it attacks some people and not others.  Anyone can be affected, young and old; children and adults in any region of the world.  The most recent GBS outbreak was due to the Zika infections in Brazil preceding and during the 2016 Summer Olympics.  News stories concentrated on the birth defects resulting from Zika but, the Brazilian medical community were inundated by cases of GBS following Zika infections.  Their hospitals were overwhelmed with GBS patients.  With the prospect the arrival of a world of athletes and spectators, doctors’ warnings did not make the news feed.  It is theorized, the building of stadiums in the areas of untouched rainforest disturbed the balance of mosquito interaction with the population.

Although the exact cause of Guillain-Barre Syndrome is unknown, often it is preceded by an infectious illness such as a respiratory infection or the stomach flu. So, no you can’t catch GBS from someone with it but, under certain circumstances, you may be susceptible to developing this syndrome.  Because my immune system has proven it overreacts to stimulus.  I must be wary of anything which could launch another attack against me.  My doctors had a long list of things to avoid with their main emphasis on no vaccines, no bug bites, no unnecessary surgical procedures, no sushi or raw fish, and no shellfish.  The doctors’ list concluded with this warning, “If you get this again, we will not be able to save you next time.”  This bulwark of the sincerity of this doctor’s statement determines my choices as I navigate in my new reality.