Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
They told me I have cvid. I don't care that I have it. I just don't like this horrible treatment. I live in NYC and have a demanding job on wall street. No way can I do this treatment. I'm not even that sick!!! Yes I've had pneumonia 3 years ago when I was 27 but I feel like I get sick like every other person. I'm so upset over this and cannot stop crying. How bad are these treatments and don't sugarcoat it...I'm horrible with iv things. I wish I never went to this doctor. I'm too young for this crap. Any chance I can wait 15 years until I start treatment?
The treatments as it turns out are no big deal. You get an IV that can take a few hours and the chances are that you will feel more energetic and confident that you will be able to fight off more germs. Really, don't panic. I lived with this crap for almost 60 years without getting diagnosed and just about gave up. My worst years started at about 40 and on. I would have given allot to have had an earlier diagnosis. Believe me, you have been blessed. You should be able to live a normal life by following your simple treatment plans and learning about your disorder. It will be okay. There are lots of us out here to help you along. Don't cry 'upset girl'. We are here for you.
You can request the option for subque treatment.
This would be a line of maybe five short needles that would stick right into your stomach during the treatment rather than an IV.
I will be requesting this soon.
There are different brands and thus the make up of the med is different. The reason this is important is because some forms of the IGG meds are a harsher experience than another brand.
If your doc has you premedicated with IV benedryl you will feel much better during the treatment. I also take 40mg of prednisone prior to my treatment. You can sleep through the treatment if you would like too.
It's only once monthly so it should be fine as a working person since you are saying you are not terribly ill.
I've been ill since childhood.
As I got older I got sicker.
No one knew I had this disorder.
NO. You cannot put off treatment unless you want a life of chronic illness. I cannot work. Don't lose your livelihood over a fear.
Do you want to be poor?
Do you want to lose your insurance and get government insurance?
All of the normal comforts that come from earning a living will go away if you cannot work. Then this eats at your feelings towards yourself, meaning your self esteem goes way down.
It's important to do your monthly medication to prevent you numbers from dropping lower and to prevent yourself from getting very ill.
This is a place you can get lots of support and understanding.
I know for now you are fearful and sad.
This will change.
It's always a big deal when we are diagnosed with something and especially if it is a chronic illness.
For me it was a relief to get the dx because I had been so ill for so long.
I do get very tense just before treatment.
I get scared too.
I know the reason I still get so uptight is due to my unusual sensitivities to all meds and many foods.
An example: I cannot take ANY antibiotics without steroids because I have an allergic reaction.
This is due to the very low IGA levels I have.
It makes me very intolorant.
Let us know when your first appointment is comming up.
Also, if you prefer the subqutanious over the IV method, talk to your doc.
Good self care is very important.
Animal
Please continue to engage on these boards so you can continue getting support and understanding.
I'm sorry you are so frightened and sad.
The people here do understand your experience.
Animal
I called this doctor today and I have to call back Tuesday bc she is out of the country. I know u think I should be happy to have found this-- but im not. I'm just not convinced
You do not need to be glad or grateful for the dx.
You clearly are in a different position than I was, although I received a lot of GG shots throughout my life. After not receiving them, I became very ill.
Okay you are not sick right now.
You are right, people do get sick.
It's true, people do get pneumonia.
Something caused your doctors to due this type of testing.
These tests are not done commonly unless there is a problem.
For some reason, one of your doctors had a suspicion.
Although people do get pneumonia, it's not common when a person does not have some other health issue.
So first, the blood work is not lying.
Ask to see the paper work for the results of the tests.
Ask your doc to explain them to you.
As you know, you can make any choice you want too.
If your blood work does show you have this disorder of not having the capacity to produce important parts to your immune system, then you know the answer.
If you choose to delay the treatment, you will pay a price you are unable to grasp because you still have your health.
Maybe this will help.
Although we with this disorder do not have HIV or AIDS, there is one simularity that sometimes happens.
No symptoms.
No illness for a long duration.
Some people with HIV had it for a decade or longer prior to becoming ill. Then those people started becoming progressively sicker and more often. Their health deteriated.
This is the same thing that has happened to so many people with our disorder.
The only thing the people on this board are attempting to do is A) support you and B) prevent you from making a decision you will regret.
I can tell you that other members who did help me also struggled with helping me for a long time. It was from different illness, not this one.
I would not accept, check or consider that I was Lactose intolerant and yet I am. That's not a real biggy.
The big one was Celiac Disease.
Well, they were right on both.
Then I learned due to the CD, I was not just intolerant to lactose but also to Casein and this is the protien in milk. This is common with people who have CD.
So, although I fought it just as you are fighting this illness.
The truth is, I had exactly what these people were telling me.
Oddly enough, they saved my life.
No doctor could figure out what was wrong with me.
I had chronic dysentery.
I had to stop working.
I finally was in bed with pull-ups.
My mind was deteriating due to malnutrition from the dysentery.
Therefore my emotional state and my thinking changed.
I almost gave up on my life and had begun the process of not eating in order to die.
The part I did not know is that I was already malnutrition and therefore this was creating this type of thinking.
The people on Daily Strength (DS) also hung in there and got me to give life another shot and helped me get better.
People here on DS will support you.
I hope you make the healthy decision and not something that is just wishful while you are young.
Please use wisdom and not emotion to make your decision.
Animal
We are here for you with any questions that we might be able to help with. You will find enlightenment here.
Now you have some direction.
This will help you a lot.
You know, knowledge will give you the power.
And, feel free to cry along the way. It does relieve the stress.
Career wise I've always been able to work it out. I was CEO of a $100Mil, SEC reporting company and have owned and managed four different enterprises throughout a very successful career. (If I say so myself:))
You might consider getting your meds sub q. You can do them yourself, at home and on your schedule.
I hope you are seeing a topline PIDD doc. My favorite in Manhattan is Charlotte Cunningham Rundles at Mt. Sinai. She is one of the tops in the world and a really nice person.