Sulfa (Bactrim) allergy - Start of Autoimmune issues, now Sjogrens and more

[anita]

Yes Elaine, we are very different as we are also the same.

I don't like to use the word allergies because I don't think I have actual (true) allergies, as you even said.  I think the appropriate term is immune mediated reaction.  That is what they call a reaction (like to IVIG or other medication) that involves a direct response from the immune system.

My first 'reaction' to any drug was sulfa and it was typical of an allergy.  Then after the Sjogren's started in 1996, I got reactions to ALL other antibiotics (fluid filled blisters).  This is NOT an allergy, it is just simply a drug reaction...an immune mediated reaction.  There is no way I can have a true allergy to every single antibiotic...all with the same response.  My doctor uses this term as well (immune mediated reaction).

But as for autoimmune disease with my immune deficiency, I believe my immune system (just as yours, Elaine) is attacking my own body.  But this IS the exact definition of autoimmune disease/activity...autoantibodies attacking the individual's own proteins/tissues.  So your immunologist is correct...your immune system is mounting the attack...that is what an autoimmune disease process is.  Any antibody that turns onto its own tissues or protein is called an autoantibody.  So anyone with an autoimmune process has autoantibodies.  You can't have one without the other...kind of like you can't have cancer without cancer cells.  That doesn't mean autoantibodies are 'detectable'.  The Sjogren's "markers" are anti-nuclear-antibodies of a specific sort.  There is so much more that doctors need to learn about the autoimmune process...they admittedly state they know very little abut the process, how to diagnose, etc.  I doubt all the answers will come in our lifetime.

We all have little quirks that separate us from each other.  Some have immune deficiency, some have thyroid problems, some cancer, some just simply dry mouth/eyes. There is NO set patterns, as you say.  But in the end the main attack is against our own body and that is an autoimmune process, by definition.  We all do what we can to get through each attack and how it affects us individually.  For you & I IVIG helps our deficieny immune system to fight our infections where they otherwise could not.  Our "allergies" are immune mediated reactions (IMO) and just they way our deficient immune systems behave (which is the perfect term you used) with substances.

Yes, we are Zebras...an no two have stripes just alike!!