Thank you so much for all of this information. Dr. Abbasi wrote IVIg and a question mark on the test results. She didn't say anything about Humira. I am not sure what the hematologist will say when they see the numbers. It will be interesting.

I guess I am going to be stocking up on kindle books. There are worse things in the world.

I think they have those carts with the adjustable height you can use. I'm trying to remember specifically... You are sitting in basically a recliner but it's clearly a piece of medical equipment and I can't recall for sure what kind of features it has. I mostly read and held my nook with my other arm. I also took a short nap since the benedryl made me a little sleepy.

AEB would typically have you do Humira with that ratio or are you just trying IVIG first to see if that brings it down? Don't be alarmed if you see your NKs go up at first. That happened to me and the doctor made a comment that the IVIG is basically seeking out hidden infections and can actually initially cause NKs to go up, but they will come down after another treatment or two.

OP here: thanks! That was so helpful! I called today and got my appointment but it is with a new person in the office--Dr. Ferriera. My CD56, CD19, CD5 cells are out of range and my TH1/TH2 are out of range (38.9) and on the high end of normal (20.4 out of 20.5). I also have antibodies: ANA, APA, and ATA in addition to a homozygous MTHFR (c) gene. Basically my protocol will be: baby aspirin, metanx, dex (steroid), synthroid, and IVIg, estrogen and PIO. I think that is everything....

Odd question: will there be a table in the little bay so I can use a laptop? I get kind of wierded out about the idea of typing with an IV in my arm. Also, thank you for the tip to be/stay hydrated and have pants that are easy to take off!

You will go to the hematologist she works with. The office is adjacent to hers. There is an infusion center in the hematologist's office. You'll meet with him (he's wonderful BTW) in advance and they will set up your IVIG in conjunction with your cycle, depending on your treatment and when they can get you in. He will probably look over your immunology labs if you bring them in.

On they day of the first infusion I brought a bunch of stuff with me since (my nook plus extra water) they infuse slower your first time. You see the doctor first and they take your weight to get the dosing correct. They also do some fairly standard blood work (CBC plus other tests I can't remember).

After that you'll wait out in the lobby again and someone from the infusion side will come and get you to take you back for your infusion. You sit in an area that's kind of open with individual bays for those being treated. Many of the people in there are getting chemo, just FYI.

The nurses there were great they hooked up my IV and gave me benedryl first in case I had some kind of reaction. Started the infusion and it took 4-5 hours for the first one. Subsequent infusions weren't quite as long. I made sure to drink plenty of water but keep in mind it's hard to go to the bathroom with an IV in your arm so make sure to wear pants you can pull on and off with one hand if needed. Stay hydrated before you go in so it's easier to get the IV in.

I emailed my nurse at Dr. Abbasi's office before and after so they could note on my chart when I received my infusion and could set up my next immunology labs. What tested high? Is Dr. Abbasi or Dr. Stricker recommending anything else?

If so, what was it like? What advice do you have? I tested positive for immune issues.

All info welcome.