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?
Keep us posted.
If you cannot drink the juice for whatever reason, such as lack of desire, hate the taste or bothers your stomach.
Then get the tablets that do not have additives such as coloring, wheat, gluten, soy preservatives and stuff like that. It's safe to have rose hips in the vitamins.
The reason I know it's safe to have rose hips in the vitamins is because when I was much younger and had a terrible problem with low blood sugar and some other issues.....
I saw an internist who was also a nutrition specialist.
He put me and my sister on a lot of supplements a long with the special diet we needed and this really changed our lives.
These vitamins did not ever come from his office, nor did he direct us to specific companies, so he was not prescribing this care for profit.
Great info! :D
did you click the square that will send you an email to inform you that a posting has happened?
I'm the only one in my family.
My husband has been receiving these treatments for the past 5 years, and honestly, he may not be alive today if he didn't have them. Yes, it's a nusence, but it's definately better than the alternative. If you don't receive treatment, you are leaving youself open to more than just infections. Your immune system protects you against cancers and other catostrophic illnesses every single day. If you don't get treatment, you are more vulnurable to other diseases, ones you won't be able to fix with an antibiotic. The needles are very small, and you sleep through the whole thing. Things will only get worse over time if you let it go, so get the treatments. I know it's frustrating, and you have every right to feel angry/sad/annoyed, but it's important to listen to your doctor and get the treatment you need. Hope this helps!
You say, ". If you don't get treatment, you are more vulnerable to other diseases, ones you won't be able to fix with an antibiotic. Things will only get worse over time if you let it go."
I been on IViG for over 28 years; over 325 infusions. With that said,
Can you point to any credible article that shows there is any risk in not having infusions? If you look at CVID patients the risk is from the damage of untreated infections. The risk of cancer, while it is increased, is not substantial.
Still, I've never found any evidence that getting immuneglobulins decreases the risk of cancer. If our infections are well controlled we have just about a normal life span.
My 18-year old daughter was diagnosed 3 years ago with CVID. So far she has not had any more infections than a normal 18-year old and those infections have been well controlled with antibiotics. She was on IVig twice in the past, both times in preparation for China trips. Since she does not develop immunity from vaccinations, we felt a need to have her "acquire" immunity from infusions in preparation for the trips.
Our "deal" with her is she will may stay off infusion therapy until / unless she starts developing infections. This is with the approval of several top line CVID expert docs who are members of the IDF medical advisory board. .
She is volunteering in an inner city elementary school this year as a participant in City Year, a part of Americorps. So far has only had one "cold." Living in an apartment with 5 roommates who are also in the program has not presented a problem.
She starts an ivy league university this fall and agrees if she starts developing infections she will go on regular IViG.infusions. Living in a dormitory could be a problem, but we'll have to wait and see.
I know of nothing that shows that delay of immune-globulin treatment has any negative effects, if you know if any research in that area, I'd be eager to learn about it.
Good luck
I was on IVIG due to getting so ill.
Then I was off of IVIG and then after several years was apparently fine.
Then I got sick again.
I've gone through this multiple times mostly because I was not told exactly what the DX was and so I did not understand I had an immune deficiency.
Each time I am without the gammy which started out with IM injections in my adolescents; at some point I get sick again.
I get sicker and in different ways. So the health issue just grows.
I have lived mostly in the same area all of these years on and off treatment.
I think your own words will help you.
Did most of the people around you have infections from the cold weather?
Did the climate make most of the people in your city ill or need IVIG?
Were the other people getting major infections?
I hear you telling me that your body is unable to cope with the above due to an ailment, meaning CIVD.
GAMMY blood counts have nothing to do with cold
CIVD does not go a way. It is controlled to varying degrees.
My mother is almost 80 and she could be in the cold and not get sick. she may be irritated due tot hecold weather but not ill.
Diabetics can eat correctly and exercise and they will have normal blood sugars. They could make themselves believe they don't have diabetes. The truth is they must continue eating as a diabetic and walking every day. They may have more choices and they know SYMPTOMS of the DISEASE They do have will return if they fail to operate as a diabetic who cares about him/her self.
Do non-diabetics need to lower their sugar if they fail to exercise?
Do most people need to east a specific way to not have high sugar levels? Do most people start losing the circulation in their feet, legs and hangs? Do most people who eat a non-diabetic diet experience minor and major health declines, need hospitals, antibiotics and so on?
It is my experience that people who do not have diabetes of any sort, can eat what ever they want and there sugar levels are maintained just fine. My mother is almost 80 and can eat ice cream for breakfast and chase it down with a regual Pepsi.
She can have Nachos and cheese later. Then she doesn't cook so she gets out a dollar or less costing TV dinner or go out to get a burger. She does not like healthy food. She eats like a 14 year old kid.
My mother is very blessed.
she Doesn't get sick from any foods. she is healhy. I have a few siblings who can do the same and my mother and then I have siblings who have troubles. One sibling is a truck driver and he goes where ever they tell him to go. He goes cross country regularly. His only problem is due to smoking. That's the choice he still is making for now.
Hmm, who do you know who needs IVIG every so many years that does not have CIVD? Who do you know who does not have Asthma and cannot handle extreme cold weather?
You have said, you have problems only if, only if and only if is not what is happening to others.
The bottom line is that you have CVID and Asthma and a low tolerance extremes.
You have this illness and are doing well provided you are containing the deficiency and illnesses.
I know you don't want to be sick and you don't really want to do the infusions. I know it is much harder to do the infusions when you are doing so well.
I'm super glad you posted this so you would not make a poor decision for your own future.
SMILE AND HUGS :)
Animal :)
wouldn't that be just so fitting for those who judge harshly of others.
:)
You must change your thinking and embrace the fact that you have CVID and it is not going to go away, ever. There are things you can do to help yourself, but the facts won't change. You may do all of the 'right' things and get sicker than you have ever been. You could die. No one wants to mention this or talk about it, but it is true nonetheless. If you do not do something to treat your disease, sooner or later you will succumb. Even IVIG is no magic wand. It works better for some than for others. Yes, it is huge, but still it is not a cure, just a treatment.
Some of us are missing other key immunoglobulins that are not treatable in any way. I am one of those people, so in spite of my treatments I still face looming problems.
Denial is not an option. You will need to accept your condition, listen to your doctor and make friends with your nurses. And, you have already reached out to the community of friends you didn't know you had until you found this Board.
I swear, I get more information and understanding here than from family, dr.s or nurses, because if you don't have the disease you just don't totally get it. This disease can take you to your knees and kick you when your down, and possibly do you in.
You need to make the best of it all as hard as that is, and get on with your spectacular life... which now just includes a little more hassle. Take your treatments and don't try to cheat the respect that this disease requires. If you disrespect it, you will be miserable.
We are so glad that you found yourself here for advice and encouragement. There are generous people here.
I am so madly happy that I found this site and so many people that have 1st hand experience. I come here everyday and still learn more and more.
Upset girl... you are part of this loving family now. We will give you a soft place to fall.