welcome having this site helps. it is comforting to find all the things that stump docs and they want to test test test and test some more to find what is wrong is really cvid related. yesterday while in the doc office i told her i had been seeing her brother who is my rhumy and she asks what he was treating me for i said constsnt inflammation she asks what from..... after reading many of the posts i have read over the last few months since finding this site i confidently answered CVID it is all cvid related. they always are looking for something else that is causing it..... treat the symptoms the dx is cvid!!!!!

i have finally reached the stage that there is no other cause cvid does a lot to our bodies no more testing and hoping that they can find something to make this all go away. it is cvid and nothing more!!!

so is it fun to live with no, but i have an answer..... i tell as many people as possible to try to help educate people. i had to retire from my job this yr (4th grade teacher for 17 yrs) they were all very understanding. boss, teachers, parnets, and my students... i know how lucky i was..... but a lot of my luck is also made because i always have a upbeat outlook on life and lots of times it rubs off on others. i was known as the sunshine lady at work, no matter how yucky i felt if i was at work, i had a smile on my face, sometimes it was a fake planted one, but after awhile if i pretended long enough sometimes it was possible to believe it!!!
i missed an average of 20-30 days per yr the last several yrs as i have been in a major flare, i was still one of the most requested teachers at our school. all because of my outlook on life!!! amazing what looking at the glass half full will get you in life!!!

it is sometimes very easy to fall into the why me.... my daughter and i both have cvid..... i dont know why, but there is a reason..... i may not always agree with it, but we have it for a reason.... maybe it was to touch lives in a positive way..... not sure... but there is a reason........

oh well my thoughts for the morning

hang in there and remember when you put your feet on the floor everyday you have a choice to have a good day or a bad day.... no one can chose for you you have the choice... others may try to put blocks in your way, but as i have always said i am too stubborn to let others decide my fate each day!!!!

smile even if it is a fake one if you do it long enough you tend to convience even yourself... try it you will be amazed!!

I love your outlook. For the most part, I have always tried to have this outlook and when people asked me how I was, I would say that I was doing great and that life was great. But, with that said, I had a Supervisor once tell me that if life was so great and that since I'm doing so great that I probably have nothing wrong with me.

So, I have noticed that I have those people in my life that tell me that I shouldn't say I'm great if I'm not. But, honestly, I love life and I love people despite everything. Also, for the past year, I have been seeing a Therapist regarding this. It has really helped. He has told me that I just need to be me and not worry about what others think. (which of course, I knew) If many of these people had to walk a mile in our shoes, they would probably be surprised at how well we are coping despite how we feel.

I'm 39 now and I really want a child. I'm so afraid of having a child with CVID or not having the energy needed for a child. But, I'm afraid of not having one either. AYE!!

I just find that most of the time that my outlook on life just confuses people. I guess that's their problem..huh? LOL!!

I don't have any leave right now and I'm thankful that my boss is letting me work from home again today. Really does help with the absences.

You know, come to think of it, I have a harder time coping with the negative people than I do with this disease. Even though I try to educate them, working in the Government, they just don't care. For the most part, if someone uses their leave in the Gov't, they probably are abusing it. That's what I have to deal with.

My old Commander use to call me the Sunshine too. Love it.

keep it up it is hard to be ugly to someone who has a smile on their face......

I love both of your attitudes! :)

As for your IVIG treatments, Charlotte, do they give them to you fast? I found through personal experience (and many here will attest to it) that the faster it is administered, the worse side-effects you may have. Those side effects can last for a very long time too. I once had a nurse rush my treatment to a total of 3 hours after pre-meds and I broke out in hives every day for a month and had a very bad eczema flare up on my hands and feet from it too! Since then I've begun to protest that they are doing it too fast, and I don't see any point in having a treatment that makes me feel sicker than without it. Because I've made such a fuss about it and my doctor is backing me up about it, my treatments now take about 7.5 hours. It takes the whole day but it is so worth it to me because I feel GOOD afterwards! At my infusion center they say that the "standard rate" is 200 ml/minute (not positive of units, and I'm assuming that it's specific to the Carimune that they use), but that standard rate is 150 ml/minute faster than my body can tolerate! I got so sick when they tried it on me!

Anyway, my point is that although you've been having IVIG treatments for years, they may still be going too fast for you, and you might want to put your foot down and make them go more slowly...if that's the case. I hope this is helpful to you. :)

Just met with my Doctor tonight and he is going to figure out if we can reduce the amount of IVIG that I need. Since I first started taking the IVIG, I have lost about 70lbs and they never reduced the amount of IVIG. He is also going to brain storm with other Doctors about better ways of how to administer to me. Before I do another IVIG, he is going to check my levels again.

We probably were administering too quickly. However, with one of the IV's I never got sick...it took about 4 hours. (He's looking to see which brand this was) I've been on GammaGuard, or whatever the heck the name is for about a year and I'm not tolerating the 6-7 hour infusion. He is going to try another pre-medication remedy for me also. An hour before each infusion, I used to take 2 benadryl, ibuprofen and Prednisone. He now wants to add an antibiotic to it but wants be to do it the night before.

Ugh! Hope this all works. We are all so different but are all the same with it. Just have to keep trying until something works.

Well good luck, I certainly hope they can come up with something that works for you! :)

I understand how hard things are for you. When I first started my infusions I got sorta sick for a few, and after about my sixth infusion I got so sick I ended up in the hospital for a full week and almost died. No one could ever quite figure out what happened, although they tried to figure it out. More negative tests... on and on until I said STOP!! It's the infusion... don't know why or how, but it just happened. Hospital got kept me alive and got me back on my feet again. My immunologist did a 180 and started with a new type of IVIG, added more pre=meds and slowed the rate to a crawl. I was scared to death to have another one after the previous fiasco, but you gotta trust somebody.

Everything turned out great!!! I switched to Privigen and have not had any problems since. I am back up to a reasonable rate and take just a little extra pain med and benadryl. I have no clue what happened, but it got fixed.

Have you ever switched your type of IVIG? I had been on Gammaguard and switched to Privigen. There are IVIG products that are designed to lessen side effects. I'm sure you've thought of everything, but there might just be some small thing that you are missing. I feel terrible for you. That is the worst kind of sickness, throwing up and all.

I would dread the idea myself, but maybe you need to see a new immunologist... You are still so young. If you can build your strenth up enough, things should improve. I know that I had an infusion when I was feeling really sick. I even called and asked if it would be alright to have my infusion in that condition, and they said yes. Well, I know now the answer should have been 'no'. I got a bunch sicker and missed 3 days of work. I just KNOW that if I had waited just a couple of days for my infusion it would have been better.

You have got to find away to make this easier. You need to have or be an advocate for just this issue alone. It is not okay to get so sick after every infusion. My God, how much good time do you have a month??

Tell me more, and let me know if things improve for you. Hang tough girlfriend. We will be thinking of you.

Charlotte,
I'm sorry you are having such a difficult time. However there may be a light at the end of the dark tunnel. The last IDF survey found that about 60% of PIDD patients rate their health as excellent, very good or good. For many it's just finding the right combination to medication and hoping they didn't have permanent damage before they were diagnosed. The average time between the onset of symptoms and diagnosis is still over 9 years.
I am one of the lucky ones. 350+ infusions later I rate my health as very good. I think my diabetes is more of a pain in the as* than my PIDD.
May I ask who is your immunologist? I know Richard Stiehm, at UCLA School of Medicine has a great reputation. I've briefly met him and thought he was very pleasant
good luck. Feel free to ask any question you may have. .

One more thought... it almost sounds like you have a hidden low grade infection somewhere that is being missed. Are you being treated for IBS or anything to do with your intestinal track? That is my achilles heel and it took a couple of years to gain control. There are lots of miracle drugs for that and they might just make a difference for you. All the best.

Thanks for all the great replies. I have had my current Doctor for almost 13 years now I love the whole offce. I'm such a part of their family now that I go to weddings, baby showers, going away parties, etc. I guess when you sit in those infusions for 7-8 hrs, you really get to know them. LOL!! So, it's pretty easy to tell them what is going on and what I need. Also, if I do have a problem...I have all their cell numbers. (not too many people can say they have a direct line to their Doctors...they would drop almost anything to help me out.)

It's just at that point where we need to find what works for me. I'm pretty certain that we will get there! I'm positive and I'm going to keep that outlook.

Yeah, I do have an upper respiratory infection right now. I had a shot yesterday and it's starting to clear up quickly. YAY!! As long as you don't make me laugh, I'm fine. LOL!

Fezzy...Wow, you have quite the story. Scary. I'm going to ask my doctor about the Privigen.

Also, and this is just a "bitching* session right now. But, when you go in for your infusions, do y'all have any type of entertainment available to you? My Doctor's office finally painted the IVIG room for me and put in a picture but, It's still this small room with nothing else going on. I once told him to try sitting there for 8 hours and see if he can stand it. LOL!! So, I'm training them.

Infusions are just so long and they are 8 hours of our lives that just suck. But, when they work, it's worth the few extra good hours that they give us.

So, I'm going to keep a positive outlook...we will beat this. I'm glad to hear that so many people are in excellent health from the IVIG's. Wow, I will be one of those people.

My infusion center provides drinks like juices, gatorade, coffee, tea, and purified water and some snacks. They have a refrigerator and a microwave, magazines, books, DVD players and a few hundred DVDs to choose from. I usually take my Kindle for reading as well as a DVD or 2 and my laptop since they also have free WI-FI.

I know I'm one of the lucky ones because they offer all of these things, but perhaps your center could at least get a DVD player or 2 along with headsets for you and any other patients.

Yeah, I'm training them. At least they got the walls painted for me. I'll still be working on getting the other stuff. Oh, they did say they have WIFI now. That will make things much nicer.

Now, just need to work on a T.V., DVD Player and other things. LOL!!

mine does the personal DVD players that look like a laptop. It's a less expensive way to deal with it, and if they got a couple of them they could accommodate the wishes of more patients...if they get more. :)