Dear Sophie:

All my life I've had autoimmune-like conditions without EVER testing positive of an autoimmune condition.

Then I was found to have Primary Immune Deficiency Disease.

I asked my brilliant Immunologist, how I could have all these disorders, Sjogren's -like, Interstitial Cystitis, PN, SFN, etc.?? She said: "Your Immune System is attacking you with biochemicals that are NOT autoantibodies. Your Immune System is using something else to attack you, probably cytokines but we don't know."

My Husband is a research Immunologist (go figure!) and my Immunologist and he have great discussions about what it might be that is destroying my organs/systems (Now my lungs are damaged).

Hang in there, we are on the frontier of Immune Disorders. Find the very best doctors you can, preferably in a research center.

There aren't easy answers, and we have a long way to go....but you have company on the ride!

Hugs, ElaineD