Has anyone been diagnosed with this disorder?
It's a disorder that causes you to have low antibodies. Before I started the infusion of Xembify ( immune globular subcutaneous human-klhw) 20%. My antibodies came in at 10. I didn't know at the time,
if 10 was bad or good. So, this disorder cause me to get infection real easily. Especially if I'm not on my infusion. I received my medicine infusion once a week.
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@junebug58 Can you look at your paperwork from the doctor and tell us what specific disorder is diagnosed, please?
There are many auto-immune disorders, it would be easier to find someone to talk to if we had a name for it. Perhaps it is listed as "Primary Immunodeficiency" or has those words in the diagnosis?
Oddly, my rheummy initially did a lot of lab tests on me and 3 out of 4 classes of gamma globin were low. I had only one class protecting me. None of my docs (even the rheummy) said anything about it. I was headed for the IvIg anyway because of my Sjogren's and balance problems. That was over a year and a half ago. It has helped some things but not others.
I had a similar experience. I noticed my IGG was low on a blood test. My rheumatologist I see for sero-negative Sjogren's Disease (no antibodies) said it had been that way since he started measuring. I asked what it meant and he said to go see an immunologist if I was concerned. Immunologists are generally in Allergy offices. It turns out after some additional testing, that I had Common Variable Immune Deficiency and am now on gamma globulin infusions. CVID explains why I am sero-negative Sjogren's.
I too, have low igg and no immunity to pneumonia vaccines. I got a Pneumonia 23 and didn’t get a response.. I am going to start IVIG. Thanks for sharing. I see an Allergy/Immunologist amongst many others. 🙏
As I understand it, CVID (common variable immune deficiency - a type of adult on-set primary immune deficiency) is not an autoimmune disease but is often associated with autoimmune disorders - which can lead to the CVID diagnosis. (CVID conversely makes it difficult to diagnose autoimmune diseases as it interferes with antibody development!)
I was diagnosed with CVIF based on low Iggs, medical history (lots of infections), and low/lack of antibody development to the pneumonia and typhoid vaccination challenge tests. The IDF (Immune Deficiency Foundation) has been a useful resource for me, along with the Mayo Clinic. I am doing sub-cutaneous IG instead of IVIG as it helps keep my Igg levels steadier, has fewer side effects and I can do it at home (nurse came to train me).
Hypogammaglobulinemia
I was treated for Chronic mina, I was being treated for Iron Deficiency. But taking Iron in pill form, seem to be working, Then it would comes back very low again. But they found in my blood that my Antibodies We're very low. At first, when the Doctor was talking I
thought he was talking about my Iron deficiency. No he was not talking
Iron, He was talking about low antibodies. He told me that my Antibodies were low. He said very low. So I asked him how low were they, He said They were about a ten. I asked him if that was good or bad.
He told me I would have to see a Imanologist. She Diagnose me with Hypogammaglobulinemia. So, once a week I take my Infusion. But, Complications set in.
I had diverticulitis . Then in January, I was very sick, I was throwing up, and had severe diarrhea. They thought it was the Nor virus, I was so dehydrated. That they could harding get any blood out of me. Also, I had Acute colitis, I had UTI. Then at the end of March and the beginning of April, I was Diagnosed with colitis again. And in the end of May, I came down with diverticulitis again 2nd time around.. then with all the Antibiotics, on broad. My dentist, said I have plenty of Antibiotics from being in the hospital. But,, these Annabotics I have been taking for. Caused my c-dff to Flare.
I assume you were taking gamma globin (IvIg) for your condition? How many infusions did you get to have before the other conditions got involved? If you have C-diff then there is a GI doc involved. Ask him (or her) what kind of specialist you need to see and can you do it quickly to expidite treatment. You need the right antibiotic. Hopefully, the hospital did a culture and sensitivity to find out what to treat you with. Don't hesitate to ask questions until you understand. You certainly have a right to. Best Wishes!
Antibiotics cause your gut flora to be killed off, both good and bad bacteria. I had many infections and procedures that did this. To rebuild my good gut bacteria I took a prebiotics capsule, drank kefir, coconut milk, coconut oil, olive oil, Greek yogurt (not sweet yogurt). I couldn’t tolerate kimchi, pickles, sauerkraut or kombucha, as they’re very acidic.
I stopped eating and drinking anything with sugar, including soda, as that causes the bad bacteria to grow.
I got a natural super greens organic food powder with 50 nutrients in it to make tea. I drank green tea with ginger, and “Bio Czystek” (Citrus Incanus) tea leaves, which helped the most in the very beginning of my healing. I got it on Amazon. A big bag is expensive, so if you can find a little one that would help with the cost. But it’s absolutely worth it.
To heal, try to stick to organic and limit meat and dairy. Cook your veggies soft until your gut feels better too.
The doctors are real big on prescriptions but they’re hard on the gut. They won’t teach you the natural way to heal your gut. I ended up on their “soothing” prescriptions after the antibiotics, like antacids etc, and they didn’t help.
Takes a while to get your gut fixed but you’ll feel so much better and will know what to do the next time. You’ll also maintain a healthy weight after your gut gets fixed if you follow this and then reintroduce grass fed meats and small amounts of dairy and only sourdough bread. It has natural yeast in it that feeds the gut and is not junk food like breads are.
Hope all this helps. I was actually bleeding and had multiple infections and ecoli in my bloodstream. It took a year and a half to get back to normal doing my own research and learning how to do this