PB, can you get on permanent disability?

Well, I probably could go on permanent disability, but I'm not ready to give up on my career yet. I've worked so hard to get to where I am and it's so hard for me to even accept that I don't have much opportunity to advance with my health being such an issue. If it comes down to it though, I will definitely pursue that course. :)

Oh yes, I totally don't blame you. Such a hard decision. This friggin disorder has screwed up my life in more ways than just one. I DARE not go off of my medi/medi, but I AM SO BORED sitting at home. I wish I could work, but if I don't have medical insurance and I get sick, I am screwed again. My husband just got a job that starts on Monday and with it he could put me on his health insurance which is a PPO, my only fear is if I switch over will I be GUARANTEED IVIG? Been down that road. I am so secure with medi/medi. But I might try. I went to my doctor today, and I will get my infusion on Thursday at 8:00 a.m. at his office, he wanted to send me to Beverly Hospital or White memorial, God I had to CONVINCE him that I have been doing this for 15 years and have NEVER had a reaction to the gammaguard, so he relented and is letting me have it in his office. Thank y ou Jesus!!!! I am so tired......let's see if the ivig makes a difference.

I'm glad you were able to work things out for your infusions. I'm really looking forward to getting mine on Friday. Hopefully we'll both perk up soon. What I don't understand though is how my IGG level can be up to 1000, yet my body feels like it's closer to 300? I was tested again just a few days ago...

Thats weird, but maybe your body just normally makes Igg and not the rest. I am so bad about knowing all that stuff. This doctor, doesn't test my levels, but I know I'm lucky to be just below 100-200 of the normal ranges. I make zip on any of them. I would ask my doctor, but you know I'm just lucky to get my infusion, I'm not asking for ANYTHING extra, because really he is an hematologist/oncologist and really doesn't know much. Make sure you are taking enough B12 though, my levels were low, could be why we are so tired. Thank god your getting your infusion. How's your asthma doing?

Asthma has been great since the pulmonologist put me on Spiriva. :)

As for the IGG, my doctor said that the antibodies in IVIG have a 1/2-life of 3 months, so that with regular infusions your IGG levels reach a higher steady state than might be normal. My doctor told me that it would take 5-6 months for my IGG levels to get high enough to make me feel better at its lowest point, and the test that she did was the 6-month check to see what level it had reached. She called the test a "Trough".

Here's the medical definition of trough...I was curious and thought others might be interested too:

"peak and trough specimens,
serum samples collected to determine the level of an antibiotic or other pharmaceutic agent in the blood. Peak specimens, which represent the highest level, are generally collected hour after the dose is given intravenously or 1 hour after it is given intramuscularly. Trough specimens, representing the lowest level, are generally collected approximately hour before the next dose. See also peak method of dosing." (from http://medical-dictionary.thefreedictionary.com/peak+and+trough+specimens)

Wow you are always so good at having great information. I have to admit that I just go in and get the infusion once a month. They never take blood samples. Maybe once every 6 months, and then they say they might be just a little below normal, or maybe just a little above normal. When I went to Kaiser, the day of my infusion, I would have blood drawn, get my infusion and then within the next 3-5 days get blood drawn again, to measure how far my levels would go up. This doctor doesn't bother with any of that. What does Igg do to protect the body? What does Iga do to protect the body? I am confused. My one Physcian Assistant told me that the only thing that the body will replace through the ivig is the IGA, all the rest were insignificant. I have heard that Iga protects the upper respiratory and the IGG protects the intestines or gastrointestinal. I understand the peaks and troughs especially with asthma measuring because I was tested for it, and I really don't have it. But she was always wanting me to blow into this slide tube thing to measure my output, especailly with I got a respitory gunk. Anyway I get my infusion tomorrow a.m. thank god, I am going to see if I really feel a difference in my energy over the next few days. I sure hope so. I take my fatiege one day at a time. And oh yeah, the older i get the worst my spelling is. excuse me. I used to be an excellent speller. I CANT BELIEVE I CANNOT REMEMBER TO SPELL FATIGUE. God i'm tired. Hang in there. I'm praying hard for animal. Did you hear she is in the hospital again! The poor woman. I wished i lived nearby her so i could help her out in some way.

Yes, I heard about Animal today, and I'm worried sick about her.--The tube thing that they use to measure your lung output is called a peak flow meter, and I have one at home too. Since the doctor put me on Spiriva I've been able to blow a 500 on it! I was amazed since my normal has been 375. --I hope your infusion goes well. I've never heard the thing about IGG being for stomache and IGA being for respiratory before. Although my doctor said that IGG is the only antibody they can replace. She said something that led me to believe that they have the same function, and that IGA converts into IGG. Don't quote me on that though. I'll see what I can find out about it online tomorrow, and post it here. -- sorry everything is run together, I can't figure how to put line-breaks when I post using my phone.

So happy to hear the Spiriva is working well for you. Yay!!!! You are right, though, I think that the Igg is the only one they can replace. (I mean I knew it was ONE of them) Well I'm up and getting ready to go get my infusion. Thank God. Have a good day.

Going tomorrow for i.v. june 28th. thank god. hope my energy picks up

I expect it will...I can't believe how much better I feel with an IVIG treatment that was administered slowly! I haven't felt this good since they started my treatments, and probably longer than that. :)

yah. I was always given my i.v.s at a slow rate the first 4 years, like it would take 5-1/2 hours. Now I'm out in 3! I have no problems with the time.

I heard Vivo gamaglobulin comes in SubQ form.
I was told this at the infusion center.

I was told a woman who was very ill with either PID or CVID was unable to keep an IV working.

She was switched to this and she has been fine since that time.

It takes me 7 to 7.5 hours for 20 grams.
Usually, I can only use a rate of 30.''[

I did get it up to 40 this at this last time.

I'm going to pursue SubQ