Second – (Had to break this into 2 posts) Make sure you document everything. That includes every cold, sniffle, infected cut, etc. Even if it is just a call to your physician to document it. If you do down the road decide to do IVIG infusions, don’t be surprised if your insurance company declines the treatment. The more documentation you have, the better odds you will get the treatment your doctor recommends in a timely manner.
Third – IVIG infusions vs. antibiotics. This one is tough because there is no right answer and there are risks to both. I did prophylactic antibiotics in the beginning. While it cut down on my infections, I still got a couple bad ones that the antibiotic I was on didn’t cover. But I spent 4 of the worst months of my life this year that were taking long term antibiotics greatly contributed to…. Oral Thrush – a fungal infection that normally only babies get but people with immune disorders can also get. The broad spectrum antibiotic destroyed the good bacteria in my mouth that normally helps to keep the fungus at bay. Thrush is torturous. My mouth constantly felt like it was on fire and I had to be on severely strong, large doses of antifunguls. My liver and kidneys are still recovering… hopefully they will all the way.
I now do the IVIG infusions and am grateful for them. I now rarely get sick… when I do, it doesn’t seem to help with the duration of the disease or infection, but I’ve only had one where I probably had 7-8 last year. I haven’t had that bad of reaction to them, it’s like going and getting an IV for about 4 hours once a month…. but some people it is a lot worse.
I have found that eating right, exercising, etc. (all the stuff we should be doing anyway) really does help. Just something I pay a lot more attention to now.
Hope this helps… good luck and let me know if you have any other specific questions.