Hi, I'm Jane. I'm 49 years old. I was diagnosed almost 2 years ago with Primary Immune Deficit.
Deficiencies in IgG3's, Mannin Binding Lectin (MBL's- actives the complement portion of your immune system) and also do not retain antibodies given via vaccine, ie: Prevnar. In addition, I am on the low-normal side of IgG1 and IgG3. All those combined do not provide much protection from Respiratory illnesses.
I've been a Registered Nurse since 1989, my occupation has not helped my health status at all.
I was diagnosed in 2006, have refused IgG Therapy to date, now coming to acceptance of needing to take it. Have had a profound fatigue for the last year and a half. I'm tired of being tired.
Prior to beginning treatments I'm going to Mayo Clinic for evaluation. I would like them to determine my baseline and any possible etiiology for my diagnosis.
I had Immunologic testing done in 1997 and did not have any Immunodeficiencies. I have been tested for HIV twice, Negative. I am hoping they can determine some cause for my Immune System to deteriorate without apparent disease process.
If this if genetic, why wasn't it there in the 1997 testing? Yet, it's there now since 2006. Something has changed and I want answers.
I've tried to work with my local MD's. They don't know enough about Primary Immune Deficiency, they don't really want to deal with me.
I want answers and they don't want to take more than five minutes for an appointment. God help you if they have to crack open or book or go on line to research something.
I've been very frustrated. I can't beleive there is so little information available out there in the general public.
I'm now working in the office for a Home Health Agency and I'm "educating" everyone in my office about Immunodeficiency Diseases.
Hopefully, the nurses won't be so afraid of the treatments at home. I'm going to make them take turns on me in the office so they'll be good out there in the public, after I start my treatments.
Does anyone out there have any information on the
Adult Onset Primary Immunodeficiency Disease?
Let me know. Thanks, Janie