Reply To: New to this…..

May 18, 2006 at 5:49 pm

Dear Rose:

IVIG and plasma pherises do not actually cure the damage caused by GBS. They merely stop the immune system from attacking the myelin sheaths of the nerves. Only time and nature can cure the myelin sheaths. If your brother isn’t getting worse, then the IVIG has done it’s job. Plasma pherises will simply wash out several thousand dollars worth of IVIG out of your brothers system. The IVIG will stay in your brothers blood plasma for 3 to 4 weeks and will protect him somewhat from opportunistic infection.

Pain from GBS is a result of cross-talk between nerves, and not from the firing of pain sensors at the end of the nerves. Anti-epilleptic drugs like Neurontin do a much better job of reducing pains than narcotics because they electrically insulate nerve fibers. Neurontin will treat the problem, narcotics treat the symptom.

As for your brothers decline, I would want to explore if it is, in fact, active GBS, or if he is experiencing a setback or worsening of symptoms as a result of too much physical therapy. With GBS, the nerves become so inefficient that the energy drain leaves very little energy for anything else. After having too much physical therapy, he may not have any energy reserves left. The rule of thumb is that one should never do any activity which takes longer than 12 to 18 hours to recover 100% of your energy reserves. One hour of physical therapy three times a week seems to be a realistic schedule. GBS is a nerve problem, not a muscle problem. Exercising muscles which have inadequate nerve enervation does nothing except making matters worse. Perhaps your brother’s medical advocate should seek physical therapy from someone experienced with GBS.

Rose, please take good care of your brother, you and your family will be in our prayers,