Hey guys, I am going to try again with my immunologist next week to get more info. I am also going back to see an internist that I quit over a year ago. I like her because she does listen to me and seems willing to try new meds and offer some new ideas.
My immunologist had told me that I can NEVER take steriods. They are terrible for CVID. I have used topicals for rashes and sores, but no orals.
I have also been on a prophylactic dose of macrobid that does not seem to have helped me very much. I read somewhere that Bacterim is a better thing for us to be on. After I saw that I realized that made good sense. Right now I am still having to take Cipro but will run out soon. As soon as I go off of it I get sick, really sick. This is so frustrating!! I hate pills, but I have a million of them.
Yesterday I decided that I definitely needed to take probiotics so I went out and bought the 'best' ones. They cost a fortune, but who cares if they are going to make you better right... (I really do care about the $$. I'm going broke with this disease)
I took one and felt sick for the rest of the day. This morning I am dizzy and weak but I have to go to work. I am afraid to take another one until maybe right before bed. My system must be so screwed up with all these antibiotics that the probiotics probably just overwhelmed me. Is there any hope for us?
I'm with you Green Girl. The IVIG helps for allot of things but it's still not enough. It is so discouraging. My life is getting smaller and smaller. This is just not a good morning... I'm sorry to ramble.
My bones feel like they are going to snap and I'm pretty sure that I am going to throw up soon. Well, off to work I go.
Bless you all, and thanks for listening. I pray to God that I can give you guys some solid information soon. I will keep trying.
Fezzy

so...I don't remember the exact values of my levels, but I know that all of them are low. My IgA is < 25, and all of the others...IgM, IgG, IgE are less than half of the normal minimum. Does this mean that I have a complement deficiency as well, or is it all part & parcel of CVID?

I don't know the answer to your question.
Someone else might know.

To bad we don't have an organization like other illnesses such as celiac, cancer, lung and so on.

My levels are very much a joke.

You would need your complement levels checked for complement def, but maybe you just have this consequence of your CVID. It can play havoc with the immune system, mine changes all the time, except the IGM which remains horribly high, when that goes down (almost never!) I FEEL the difference, we are very positive to our own bodies. Sadly, Drs do not always see this. Do you receive IVIG?

Hello Fezzwig, I agree, I have had the most awful time with probiotics, I think our bodies are SO sensitive to ANY bacteria that we react to even the good bugs. Possibly NO bugs would help but how is that possible, a vicious circle as usual.

Hi Greengirl, Yes, I just started getting IVIG treatments. I was diagnosed in Jan 2010, so everything is new to me. I guess I should see what gets better with treatment and then investigate further.