Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 Jenn - IVIG replaces an immune system that has either a deficiency or a dysfunction. Either there is very little immune system or what is there doesn't know how to work right. It is the patients with a dysfunctional system that are at risk when it comes to immune boosting remedies. The system basically retaliates. Secondary immune problems that are caused by drugs or viruses can benefit from supplements but systems that are congenital or hereditary are not the same. Autoimmune diseases stem from the system or what little system there is turning on itself. Definitely have an immunologist calling the shots for those particular issues. Or at least in a consulting capacity with your pulmo. Macey's pulmo was the one to actually test and diagnose her when she was 2. He was working her up for CF and immotile cilia and noticed she had weird infections cropping up. So he ran the blood work and was the one dosing her IVIG for the first year or so. Ursula - mom to (16) and Macey (13, CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Thank you so much for your response. That does make sense and I appreciate you explaining it so well. As of now it looks as if Cassidy has low subclass 1, low overall IGG and does not maintain titers for pneumonia vaccine. I'm not sure if her titer response qualifies as a dysfunction or deficiency. If just a deficiency then hopefully we can still use supplements. As I said, many in the CF community use a broad spectrum of supplements and it can help ameliorate the CF symptoms and flare-ups. I'd like to keep Cassidy on GSH in particular, as it's had a lot of success with helping mucus issues. It's also a general health booster however, I believe. Meh. So much to keep track of. Cass has another blood test Dec. 11th before we'll start IVIG so I'll wait until then to get us in to an immunologist. There don't appear to be many on our health plan in the area and none at Cassidy's hospital where all her other doctors are. Doctor shopping is such fun Thank you again, Jenn Mom to Cassidy, 4yrs w/CF, G-tube & CVID > > > Jenn - IVIG replaces an immune system that has either a deficiency or a dysfunction. Either there is very little immune system or what is there doesn't know how to work right. It is the patients with a dysfunctional system that are at risk when it comes to immune boosting remedies. The system basically retaliates. Secondary immune problems that are caused by drugs or viruses can benefit from supplements but systems that are congenital or hereditary are not the same. Autoimmune diseases stem from the system or what little system there is turning on itself. > > Definitely have an immunologist calling the shots for those particular issues. Or at least in a consulting capacity with your pulmo. Macey's pulmo was the one to actually test and diagnose her when she was 2. He was working her up for CF and immotile cilia and noticed she had weird infections cropping up. So he ran the blood work and was the one dosing her IVIG for the first year or so. > > Ursula - mom to (16) and Macey (13, CVID) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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