Reply To: Get Tested!

February 22, 2013 at 4:14 pm

You are both right. Something triggers the immune system to respond inappropriately, the flu, samonella, the flu shot itself or as I believe leaky gut or any number of virus’s etc.   I do believe that bartonella caused your son’s cidp and yes if you take care of the bartonella,  in theory the cidp should go away because the trigger is removed.  However in my humble opinion the duration of time it takes for the immune system to reboot itself and get back to normal after the trigger is what is in question.  There is data that shows some patients do not need ivig after a year, and some as long as 7 years others never get off of it  in this particular study.  It just depends how long each individuals body needs to respond to the imbalance or maybe whether or not they find the cause of the trigger.  You are fortunate to have found your son’s trigger and I am glad he is getting better.  I think we have found our trigger and we are working on getting better and weaning off of ivig there are ups and downs and questions in between.  Puberty is on both of our sides.  That is the optimum chance for rebooting a young immune system.  I do not know what the future holds, I just pray for the best. I pray daily that ivig will not be taken away by insurance.  I think we all know that cidp is an awful auto immune disease like all the others and we all respond differently.  We just have to keep learning and supporting to try to do the best for ourselves and others.