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How did you find out about your primary immunodeficiency? And do you mind me asking what it was? My ID doctor wants me to see a immunologist. I just haven't seen one yet because I just had to have major surgery and this is all happening so fast, I only found out I had this a couple weeks before my surgery! My ID doctor told me that he wants to try to figure out why I got the MAC since most of the time people that get this have some sort of compromised immune system. This is very confusing for me because I don't know what it could be?! If you have any info please share! Be really interested to know. Hopefully the immunologist will be able to help!
Angela
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Hi, my pulmonologist sent me to an infectious disease Dr and he is great. You really need both. Mine was first suspected from a CT scan and them confirmed with sputim cultures. I was possitive for 4 different ones. Have been on the big 3, 3 times a week since August 2022. My last cultures were negative and so far the present ones look like they may be also. If so, I can get off the meds in a year. However, last week I failed my second field vision test so they had to take me off ethambutol as it could be causing my eye problems that could lead to glaucoma. This is rare so don't think you will be headed for this diagnosis. Everyone is different. Good Luck!
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I don't mind answering at all.
For over three years I have been getting lower respiratory infections constantly. I'd get on antibiotics, feel better for a week or two, then get sick again, over and over.
My PCP sent me to a pulmonologist. I saw his nurse practitioner. She is wicked smart! I also went to an immunologist, who just tested me for allergies. I felt like he was very lacking, to put it mildly.
The pulmonology nurse practitioner listened to my lungs and was certain she heard bronchiectasis. This prompted her to do LOTS of lab work. I'm not at all smart in this area, but the best way I can describe it is that she looked at all the labs, which led her to do more labs. She checked my immunoglobulin levels. There are five kinds of immunoglobulins, M, D, E, A and G. G has four sub classes. I was very low in three of the four. The way to treat this is with monthly Immunoglobulin G infusions.
During this time, I got sick again. She had me send a sputum sample to the lab. It came back with a staph infection. She treated that. About a month later she called me. The same culture then showed MAC. She then sent me to an Infectious Disease specialist.
The ID doctor had me submit two more sputum samples, one week apart. She also ordered a chest CT. I've done both sputum samples and am waiting to do the chest CT. The ID doctor said these three tests are pretty much just a formality since I did have it show up on a prior sputum culture. But they certainly don't want to subject anyone to the MAC treatment without absolute proof. She said she wants me to have a few infusions in me before I start the big 3 antibiotic therapy.
I'm just praying for minimal side effects from both the infusions and the MAC treatment. I hope this helps you. Sorry if I'm not 100% accurate in my description, but I'm close 🙂