If you are crazy then I am crazy...if I am then Pcon is and PB and all of us.....its us against them. WE know what the heck is wrong, just got to get someone to listen you know? To care, to take that extra minute, thats all. Apparently its very hard to find. You keep your head up!!! Thank YOU for your encouraging words!!

xoxo

I prob ally said this before, but the AAAAI, American Institute of Allergist and Immunologists, said in a written statement, that trough level should not be used as a guide to treatment.
It seem that most of the top flight immunologists say treat the patient, not the levels.
The latest research suggests that the levels needed in a patients differ based up on what kind of CVID the patients has. CVID seems to be a conglomeration of over 150 different illness / conditions. It seems that patients with certain kind of B cell issues need to maintain higher levels to control their infections than patients with T-cell or compliment issues.
I guess my understanding is that levels mean very little after a diagnosis. The goad is to give a patients enough IG keep the number and severity of their infection to a controllable level; not to prevent all infections.
I'm currently at 80 grams every 4 weeks and it seems to be the correct amount.

Oh, o.k. mark, that makes sense. How come you get 80 grams, and I get 40 grams. Is that because of size and weight of the individual? The only reason I ask this is because I have zilch levels in all the G immunoglobulins. I was thinking if I got 80 maybe my levels would rise more and my levels would be consistent. But after reading your explanation I guess that doesn't make a difference.

I feel like CRAP with my levels at 700. I never get sick. Is that good enough for me??? NOPE. I want my levels higher to see if it helps me feel better. Having quality of life is very important as well. Me personally, its not just that I don't get sick anymore. I had to take a 30 minute nap to be able to do my fricken dishes last night. This is unacceptable. Why not at least try to get levels higher to see if it helps with my fatigue? I only get 24grams.

Kelli why are you ONLY gettng 24 grams? See something is fishy. Because you are always tired and feeling like crap. Why am I getting 40? And you are only getting 24? I am not getting any infections, but you are. It would make sense they would give you a higher dose. Just scratching my head on that one. And how come Mark get 80? Do they go by your size, weight and gender?

stimpy I never get infections anymore. Now I get weird things - valley fever, fibro, abcessed teeth, really not run of the mill stuff. But the fatigue is a KILLER. Typically they go by height and weight I believe. PB & I were on the same exact amount & brand for awhile. I am 39 yrs old, 5'3 and weigh between 135-140lbs.

Stimpy and Kelli: I'm on 50ML, 10 grams of subq Hizentra on a weekly schedule. I'm 57 yrs old, 5'2" and 160 lbs. Since I've been sick I have put on 20 lbs due to inactivity and being so tired. I'm hoping to lose some weight and start exercising soon. I don't understand the difference in doses either. I have had more energy since I started 7 weeks ago but I think I have a sinus and ear infection so I'm seeing my ENT on Friday. I really don't want to go back on antibiotics!!!

OOOoooohhhhhh,,,,,,Yeah, all the little weird things. I REALLY believe it has something to do with the CVID. It has too. God the FATIGUE. Man I really don't know how you do it. Some days I am o.k. and then others I feel like a vegetable. Sometimes I drink those sugar free Rock stars (energy drinks) and they make me feel somewhat "normal" but then, the next day I am completely exhausted. It really is scarey. Like I want to scream... 'WHAT THE HELL IS WRONG WITH ME!!!!! I don't know what I would do if I was responsible for having to punch a timeclock everyday, then having the energy to be a single mother. GAWD. Man and then you can't even count on your mother or sister to help you out without getting some kind of grief. Your amazing!!! The FATIGUE is REAL.

I just want the FATIGUE to go away!!!!! I totally understand feeling like a vegetable. It's hard to get out of my own way sometimes and going anywhere - well, that just takes so much out of me. I haven't worked in 2 years and I can't even imagine having a job. Just everyday routines are hard:) I can't even keep up with my grandchildren when they visit and when they leave I'm wiped out. I don't know how you do it.

I am NOT doing it well lol, seriously. Last night was cheerios for dinner, study spelling words & vocabluary, I fell asleep from 7:30-8:00, my 7 yr old made coffee & tried to put me to bed but I HAD to do dishes, it had been DAYS - GROSS lol, then fell in bed at 9pm. I am not parenting well right now. Then they diagnosed em with fibro im really dying now. Very different from the aches I had been feeling for the last 2 years. I have people keep telling me to go on disability because we have NO quality of life. It's like we are surviving every single day. Boo lol sorry not trying to be a downer its just really hard. I have some very old school friends who keep telling me to work no matter what the consequence is to my child. THIS is not why I had her. She deserves more, not to take care of me just so i can freaking go to work ugh!

I agree with you Kelli, work is not all there is to life, and I get frustrated with people who think that. I think that you're a good mom, if for no other reason than how much you want to be! Kids know when their parents truly care, and that makes a world of difference to how they perceive things. (This is from a child's perspective, as I'm still very much in touch with my "kid side", and don't have any kids myself. Plus, I always knew my mom would do anything for me...my dad, on the other hand, didn't care that much about us.)

As for dosing, I just found out that I'll be getting 60ml of Hizentra and I'm 41, 5'2" and 120 lbs. You're right, it doesn't make sense!

@Kchauvin: You are not alone, I feel the exact same way. In a way I feel better knowing I am not alone. Sometimes I get so scared because it is not this normal to be soooo tired. But I guess we are not the only ones. Hang in there. Take B complex, multi-vitamin, at least it couldn't hurt.

@Kelli: You are a terrific mother. My husband had to take the kids, cuz he threw me out with no job, and he was the only one with glowing health and money. I let him keep the kids, while I had them on weekends and whenever. My daughter is now 21 and we discuss this all the time, I tell her why I did what I did, (I wanted her to have the best of everything) and that I could barely keep my own head above water, etc. She said she would have been just as happy being with me rather her father (although she loves him very much, and he was a good father) she could have been poor. I really believe her. But she was so smart and talented, I wanted her to do her acting classes, go to camp, participate in everything she wanted to. I know she loves me very much, we talk on the phone at least every week. She is very busy building her fashion design business. There were times I literally wanted to commit suicide because I missed my kids so much, I cried and cried myself to sleep every night. All children want is your love and attention!!!!!!! My parents were always busy working to provide for us, which is fine. But my dad really never did anything with me. I would have been SO HAPPY for him to take me to the dime store and buy me something, or go get an ice cream cone together when I was little, sounds hokey, I know, but really now when I look back, those little things mean the WORLD. Its the small positive things you say to children, the little dumb things you share together. I am sure your daughter loves you immensely. I don't think she would love you any less if you were Poor. Right now I know you are just coping and hanging on. But don't ever think if it ever gets so bad you just can't do it anymore, that you shouldn't ask for help, like gong on disability. Maybe things will get better.

One thing I've found that can keep me awake and give me energy without feeling strung out is Carrot Juice! If you're appalled at the thought of it, try Sobe's Orange-Carrot Elixer. There's no caffeine in it, but it gives you energy. I think it might be the vitamin-A in it...not sure though.

OMG oK you guys, now I'm all teary eyed at work lol!!!! Me & my daughter used to do stupid stuff together like go get ice cream cones, dollar movie, etc. Thats all gone right now. I tell her how much I love her but it is very hard for her. And we already are poor hahaha. I have a lot of debt from the years of charging hosp visits, meds, food from missing work, etc. I knowm my daughter loves me but I also know she would rather me not yell and stress than go to work any day. We just went thru this sunday night trying to get ready for the work & school week. I lost control started yelling and crying all from being stressed. I thought if I didn't work I could have left it until the next day but now I am forced to make sure laundry is done and lunches are packed and meds are set out for the week. Is insane....

Oh and PB I'm on 60 ov vivaglobin as well :) not sure why it converts to 60 from 24 but my doc said it would convert weird and he was right lol