You are right about not skipping infusions. I hope you feel better and dont get a yeast infection. I get them all the time!

Have you checked with your insurance to see if there is an infusion company that can come to your job or home to do the infusions? We have a nurse come to our home for my son's infusions every 4 weeks. His infusions used to last up to 8 hours and they are now only 1 hour and 45 minutes. The dose and rate of administration gradually increased as his body adapted to the infusions.

His doctor recommends he not go more than 24 hours "overdue" for his infusions. They are truly a God-send! Also, we've changed his multivitamin and have noticed a HUGE change. He used to suffer the diminishing effects of his infusions toward the end of the cycle and the vitamins have helped illiminate that. We switched him to Shaklee multi without iron (adult). I am not affiliated with Shaklee in any way. As a matter of fact, I used to think they were a scam but I've since changed my mind. Over the counter multivitamins didn't help at all.

Well I have Medicare/Medical and my doctor doesn't want t he liability of having a home health nuse come to my house and infuse me, even though it has been improved, I guess I understand the doctors fears, but what is crazy, is that I have been receiving these for almost 16 years and have NEVER had an adverse reaction, I just get up and go about my way. You mentioned Shacklee vitamins. When I was in my 20's (before I was diagnosed with CVIDS) I really got into Shaklee vitamins, was seeing a nutrionist, who worked with heart patients and such, THEY ARE EXCELLENT! Very High quality. I used to take up to 10 of the B complex a day, and was able to have so much energy! Never got sick. Now for sure I take a lot of high quality vitamin C because it repairs lung tissue and mucus membrane, so if God forbid you do get sick, it won't be as damaging to these organs. I am a total believer in the benefits of vitamins even in children with compromised immune defiencies.

Just had my infusion today, and my dr. told me he cannot allow for the infusions to be done at home, because if the pharmacy messes up and doesn't give me GAMMAGUARD, but maybe something else, and I have a bad reaction he does not want to be libel. Kinda doesn't make sense, but I totally understand. I mean I can't believe a phamacist would even consider doing something like that, but for now its cool.

I'm sorry that you aren't able to convince your doctor to approve home infusions. It's so convenient to have them at home. Of course, not every case is the same and more likely than not, your situation is different than my son's which limits your options.

I will pray for you and that God will give you the strength, endurance, patience, courage, and good health that you need to persevere. :)

Thank you, and for your son also. I am grateful just to get my infusions.

Why not get your infusions at home. Unless you ae on Medicare ti is a great option. I've been on home IViG for over 25 years.

I'd contact he IDF. Home infusions are safe and very accepted. I've been doing them for over 25 years . .over 300 in total. The IDF offers a peer consultation program your doctor to talk with an Primary immune expert at no cost to you or the doc.. If you still can't convince your doc, ask the IDF for a referral to someone who knows what they are doing.

Yeah I totally get you. The problem with getting the infusions at home is that you have to have private insurance. I am 53 was diagnosed when I was 38 was married , had a secure life and great health insurance, was treated like a queen with home health infusions. Then my husband divorced me and thus no more insurance, thus cobra, thus went broke trying to survive on $8.00 an hour, thus a couple of hospital stays, thus had to file for bankruptcy, thus had nervous breakdown, thus entered psychiatric hospital for 4 days, trying to figure out what came first the physical illness or the mental illness of just trying to stay ahead of the physical illnessess, so I marched myself into the welfare office told them I needed General Relief, the state doesn't want to pay, so their lawyers got me on SSI, with medicare/medical! Do you know that medicare/medical is far more acceptable than an HMO? That is what my wonderful Doctor told me to do, just use medi/medi, I have no problem getting the ivig, My problem is I cannot find a job that pays me well enough to pay the rent and the bills and then buy private insurance to get my meds so I can be healthy and go to work, vicious circle, eh? Why can't the powers that be just fix the health care system? I am sorry if I sound angry, it is not directed at anybody, just maybe at myself, for not being able to overcome this friggin hassle of a disorder. It is so stupid, it pisses me off. And to top everything off, social security office found out that I had a savings account, and they figure if you have money in a savings account that it should go to the medicine, so guess what? Last month they cancelled my infusions, so now I gotta jump through hoops and reapply, if I could get a state or county or federal job that pays for health insurance I would be in like flynn! I get tired of all the mind games. Anyways I am not directing this anger at or on anyone on this site, it's just if your poor and not educated life sucks, but its nobody's fault but my own.

wow. Great rant!! Same here. Allot of the same issues. Too bad money is such a huge part of this for some of us, myself included. I do work but just got a big shaft job this year with 'new' insurance. Basically, drastically reduced from last year. I have gone over and over every detail and now realize that I will be paying about 15 to 20 thousand dollars out of pocket this year. Gee, that's about all I make since I can no longer have a 'good' job. I feel really lucky that I have even been able to keep the job I have throughout all of my illnesses the last couple of years. (I didn't get a diagnosis until last May). What a nightmare.
I haven't had a pap smear in 5 years because everytime anyone touches me I get sick. I'm hoping after a full year of infusions I can begin to have a semblance of a life besides working to live. Right now that's really all I am doing, working to live. Oh well. I appreciated your comments.. it's all so insane.

Yeah Fezzywig, that felt good. I was totally honest, I don't think I'm crazy, its just that its about survival, wish I could have the opportunities to be successful in the adult world. But man I gotta high five you, about continuing to work and such, that is radical that everytime somebody touches you (healthcare personnel) you get sick. Once you get at least 6 months to a year under your belt of infusions things SHOULD change around drastically, if they don't, then something is bizarrely wrong. You gotta find something to LAUGH about or you'll go crazy though.. Stimpy

Oh yeah girl, I feel like setting up a home for CVIDS patients, we could set up an infusion center and pool our money and everybody could be treated! God I really feel sorry for the kids that have this, because they are going to have to figure out how to mange this disorder for the rest of their lives, I mean with insurance and everything. Jeez. Oh well in some ways its better than the menapause I'm going through on top of it, HAHA! Well hang in there, man it sucks about your job changing insurances, it like everybody is falling apart in this economy. talkl to you later