That is not normal protocol for me and I would say for anyone for CVID. In order to have your levels stay up and stay consistent they should be giving it to you on a regular basis. Either once a month or once every three weeks. Or if you are on subq every week. My levels are right around 1,000 and I am on subq once a week. I would speak to your docs or get a second opion with a doctor who has a good amount of CVID paitents. I have been in the situation where my doctor was not well versed with CVID and I didn't have any IVIG and it lead to chronic lung disease. You do not want other health issues to pop up due to a lack of treatment.

call IDF and get a referral to an experienced immune doc....that isnt "normal" of course your levels will drop the half life of igg is 3-4 wks (ivig) it is a fix it needs to be replaced every 3-4 wks ivig or 1 wk sub q....sounds like your doc isnt up on cvid...make sure you are seeing a doc that treats a large population of PIDDs...one lady called her igg manufactor and got a list of docs in her area that had large orders of igg...with that said just because the doc is pushing igg he/she may not be the best...but it is a start....get a second third or fourth opinion that is not the norm.....you can also put the word out on the cvid bds and see who others in your area see...IDF has a forum, and there are several facebook pages...where do you live...maybe someone on here can help....word of mouth is the best referral!

If you are already ON IVIG and he is saying he will refuse IVIG if your trough levels are above 600 then that is a VERY inexperienced doctor who is medically negligent. Please read this article. Its written with insurers in mind but it covers SO much!

http://www.aaaai.org/Aaaai/media/MediaLibrary/PDF%20Documents/Practice%20Resources/IVIG-guiding-principles.pdf

Now if you haven't yet started treatment and he is stating that, it could be YOUR insurances guidelines. All of them are different. My levels had to be under 500 before I could receive treatment and of course they were.

If you fall into the first category PLEASE call the IDF and get a list of doctors. You may have to travel BUT that being said they can either treat you long distance OR oversee your inexperienced doc there locally.

I had my first infusion Friday 2-22. It went very well. While I was getting infused his nurse said he won't give it again until my levels are below 600. I had contacted the organization you mentioned and asked for a referral. I'm sort of upset but I'm going to do what I need to do to be healthy. Thanks everyone. I have been seeing this hemotologist-oncologist for 5 years. But I need a doctor with experience with cvid.

I'm no expert, but that doesn't sound right to me. The whole point is to get the levels up and *keep them there*, not let them drop again...

Wow. I've never heard of anything even close to that. Is your doctor suggesting that you have blood tests every month in order to determine if you are illegible for IVIG treatment for that month? This would mean that he would need to test your blood the 3rd or 4th week following your last infusion to determine your lowest levels. By the time that your test results are completed, analyzed and your next IVIG product is ordered if need be, you could be lingering in a vulnerable state of inadequate immune functioning unnecessarily. What if your levels are below 600, below 500, below 400 or less...? and you are exposed to infectious and dangerous viruses and bacteria? It seems like you would be left in a vulnerable state each month while being tested to see if you meet an arbitrary criteria for treatment. That just doesn't sound right to me.

I agree with everyone else in suggesting that you seek other opinions and other doctors. The more infections that you rack up the more damage that is done to your body and the harder your recovery to manageable health becomes. Your treatment should do everything possible to prevent infections and maintain a consistent state of health. This is difficult enough under the best standards of treatment but would seem much more difficult considering what your current doctor is advocating.

Keep the faith and trust your instincts. Best of luck in finding some new opinions quickly. You deserve the best treatment that you can find!!

Thanks everyone for the input. I am going to contact an "expert" this week if my doctor doesn't want to treat this properly. I'm looking at a five hour drive but it will be worth it. I looked on the AAAAI boards for treatment protocol and it says you should not stop or withhold ivig to check immunity. At least I am armed with some information.