Discussions By Condition: Immune conditions

Cvid

Posted In: Immune conditions 7 Replies
  • Posted By: AmandaCraig
  • January 18, 2008
  • 08:46 AM

Hi there, My name is...Amanda :)
I dont have any illnesses of my own but my boyfriend, Jesse has Common Variable Immune Deficiency and i have been with him for about 2 years and i know not alot about it. I have researched some what and i have gone to transfusions with him but i have never met anyone with it....And i dont want to seem disrespectfull by wanting to chat with someone with this...I just would like to know that everything is going to be okay...I worrie all the time about this..allthough everyone tells me it isnt a big deal! I dont want to worrie him or distract him, i just want to be happy with this and be there for him. I want to speak with someone who has had it for a while or even someone who hasnt...just to speak with somebody who can relate would be amazing!
I love him very much and would never want anything to happen to him.

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7 Replies:

  • Amanda, I have C.V.I.D. I have been in I.V.I.G infusions for a year and a half. Before the infusions I had many years of confusing, frustrating, and even humiliating illness. I still get infections easier than other people yet I am much improved. I think it is wonderful that you want to be supportive and to learn all that you can about this condition. Most people I know do not understand much, if anything, about this condition. This is especially sad because I am an R.N and work in health care. My friends, family and co- workers try to understand, yet every now and then one of them says or does something that reminds me that they don't have a clue what is wrong with me. One mild frustration is I get a lot of unsolicited advice regarding everything!!! How I should eat only raw food, take a ridiculously expensive supplement four times a day, improve or change my relationship with God, give myself weird enemas. Some advice is actually helpful yet some is, well, crazy. The advice doesn't anger me because I recognize it as their way of trying to be caring and useful, I just get tired of it at times. I know that they mean well and are not intentionally trying to insult me, yet the idea that I would be fine if I did A, or I am ill because I don't do B, is, despite their best intentions, insulting. It makes me feel like having C.V.I.D. is my fault. I might add that I don't smoke or drink. I try to eat well and go to bed at a decent hour. I exercise when I am healthy enough and I pray and have a strong faith in God. I am not perfect, yet I do the best that I can. What I am trying to tell you (ha, ha, a little advice) is to learn all that you can about C.V.I.D. yet be careful to be supportive and not controlling. I lost a 28 year marriage partly because my husband dissected every aspect of my life trying to "help" and always reacted in anger and frustration when his "help" failed. Please remember that you can assist, love and support him without "fixing" him. Don't expect him to be perfect. This is not the worst diagnosis in the world. It may be a rare condition, but it is treatable. Please also remember that you are not alone and I encourage you to seek support whenever necessary. I hope things turn out well!
    Anonymous 42,789 Replies
    • February 7, 2008
    • 00:49 AM
    • 0
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  • AmandaI'm sorry to hear about your boyfriends diagnosis. It's very kind of you to be so supportive and try to understand what is happening to him. I have had CVID since 1997 and unfortunately was not diagnosed until 2004. So I spent 7 years being sick to varying degrees all year.There is a wonderful foundation called the Primary Immunodeficiency Foundation which can give you a good start to understanding. However, the reason this particular disease CVID is called Common Variable ImmunoDeficiency is because it is the most common of the PID's and people develop this condition from different causes. For example I have it because my body stopped making part of the building structure your body needs to make Immunoglobins(IgG, IgM etc. antibodies). Your boyfriend has infusions of a solution IVIG which contains others peoples Antibodies to help him fight of infections. (transfusions are different and usually involve blood and blood products like platelets or plasma). This will help keep him healthy longer but is by no means a "cure". At this point in science there is nothing to cure this condition, which is also known as an autoimmune disease. Unfortunately, once someone develops one autoimmune disease they are more likely to develop others (ex. Autoimmune hemolytic anemia, Crohns etc). The disease process needs to be moniterred closely. I am at a place now where I seem to be diagnosed with a new disease every year which is caused by CVID.I agree with QCbarnie, people just don't get it including some physicians? Although I also am in the health care field and the benefit is my coworkers understand after explanation and are extremely supportive. (not coming near you when they're sick).I could go on forever,so I'll just stop here. But, The bottomline is .. this is a very serious disease that will most likely progress (at varying rates). Your boyfriend is a very lucky man to have your support. Good luck
    Anonymous 42,789 Replies
    • December 21, 2008
    • 05:32 AM
    • 0
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  • i have had CVID for 11 years now im a currently 24yrs old and the doctor told me i would be on oxygen or dead by my 21st birthday clearly he was wrong but its a constant struggle everyday with being sick 24/7 365 even tho i get IVIG infusions once a month every month
    olseahorse 3 Replies
    • November 4, 2010
    • 07:57 AM
    • 0
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  • Hi there, My name is...Amanda :) I dont have any illnesses of my own but my boyfriend, Jesse has Common Variable Immune Deficiency and i have been with him for about 2 years and i know not alot about it. I have researched some what and i have gone to transfusions with him but i have never met anyone with it....And i dont want to seem disrespectfull by wanting to chat with someone with this...I just would like to know that everything is going to be okay...I worrie all the time about this..allthough everyone tells me it isnt a big deal! I dont want to worrie him or distract him, i just want to be happy with this and be there for him. I want to speak with someone who has had it for a while or even someone who hasnt...just to speak with somebody who can relate would be amazing!I love him very much and would never want anything to happen to him.Hey Amanda how u doin
    Anonymous 42,789 Replies Flag this Response
  • Hey Amanda how u doinI am 19 and was diagnosed 6 months ago with CVID after being sick 24/7 365 for 3 years. I am very lucky that my doctors caught it so quickly. I have been doing subcutaneous infusions once a week. I feel much better and have been off antibiotics for 2 months (the longest in years). Have any of you heard about or tried the subcutaneous infusions? Also, a lot of you say that CVID is very serious. My doctors didn't seem concerned at all when they diagnosed me, and said it is easily treated. If the infections are controlled by the infusions, what is so serious about CVID? Last, have any of you had trouble with recurrent vaginal yeast and bacterial infections? I have been told it is because of the antibiotics, which makes sense. I just wondered if there is anything I can do. As I said, I have been off antibiotics for 2 months and have had no improvements with the vaginal infections. I have talked a lot with my gyno and tried a lot, but if any of you have experienced this and have suggestions I'd greatly appreciate them!
    Anonymous 42,789 Replies Flag this Response
  • I am 19 and was diagnosed 6 months ago with CVID after being sick 24/7 365 for 3 years. I am very lucky that my doctors caught it so quickly. I have been doing subcutaneous infusions once a week. I feel much better and have been off antibiotics for 2 months (the longest in years). Have any of you heard about or tried the subcutaneous infusions? Also, a lot of you say that CVID is very serious. My doctors didn't seem concerned at all when they diagnosed me, and said it is easily treated. If the infections are controlled by the infusions, what is so serious about CVID? Last, have any of you had trouble with recurrent vaginal yeast and bacterial infections? I have been told it is because of the antibiotics, which makes sense. I just wondered if there is anything I can do. As I said, I have been off antibiotics for 2 months and have had no improvements with the vaginal infections. I have talked a lot with my gyno and tried a lot, but if any of you have experienced this and have suggestions I'd greatly appreciate them!I have used supplements and probiotics to get rid of the yeast. You might want to try a good probiotic first and get all your flora straightened out. Just go to a health food store and ask. If that doesnt work all that great then you might try NOW candida clear or Candex. Hope that helps you some.
    Anonymous 42,789 Replies Flag this Response
  • Hi,I have had CVID for 28 yrs I was diagnosed early so have been relatively healthy for about 25 yrs. What has worked for me is managing my own health and not depending on my doctors to do this for me. Learn all you can about CVID it is a serious disorder that needs constant attention. Pay attention to your body early detection and care of an infection can keep you out of the hospital. Make sure you know what blood tests are being taken and why. Learn to read the results and if something does not seem right contact your doctor. Locate a specialist in internal medicine immunology/autoimmune diseases that will treat CVID radically. I take 30 gms of Gamunex 10% every 3 wks and this has help me tremendously from getting infections. When you find an IVIG that works for you keep it tell your dr that you will not be switched to another brand. You are able to do this they have to follow your orders. I have had a bad reaction to one IVIG that they switched me to because of the cost the hospital had to pay. After that I had them put in my orders that I would only take a certain brand and they follow that. On the Gamunex 10% I started having the lower back pain and chills after the infusion so I had them back off on the end rate to infuse it slower and that has worked for me. Most of the time I do not have any complications from Gamunex 10%. Broad spectrum antibiotics are used when an infection occurs so lean how to take care of candida yeast overgrowth. Check out side effects of any new med that may be prescribed before you pick it up. I was prescribed a new antibiotic the dr had told me I could not do any type of strenuous exercise while taking it. I walk and I had a hike I was going on, we agreed I could start it after the hike. I purchased the antibiotic and when I got home read the WARNING and found out that you could snap tendons esp the Achilles tendon and that this could happen for months after taking the drug. I sent my dr a message letting her know I was not going to take the risk of having another chronic condition that would cause sever pain and possibly cripple me!! So I am now finishing up my normal antibiotic for a sinus infection. Before being diagnosed with CVID I had several cases of pneumonia and bronchitis. I have been hospitalized 4 time early on and now only struggle with chronic sinusitis. I am now learning that CVID maybe involved with enlarged spleen and liver problems. I have an enlarged spleen and fatty liver. I have been told that it is because of being obese I have been about 55 lbs over weight most of my life. So this is a new adventure I am on leaning how to take care of the liver. About two months ago I started having problems with edema (water retention in the legs and feet) actually it is in the abdomen (ascites) also. This is a sign that my liver is not producing enough protein so I get to go to a hepatologist. Wahoo another specialist!! ;0}I also have Type II diabetes 5 yrs that I have under control by eating correctly. I naturally became vegetarian about 4 yrs ago (I just no longer desired to eat meat) and recently vegan I dropped 25 lbs but still need to lose 30. I work on all my complications with natural ways unless it does not help and then I take the antibiotics. Most prescription meds all have an effect on the liver so do not want to take them. In my frustration with all of the other chronic illnesses that I have cropping up I have made an appointment to see a naturopathic doctor to see if they will be able to help with taking care of my health. I feel I need help in putting it all together. The other areas I watch are my lymph nodes because CVID is known to be associated with lymphoma. I have lived a very active life and CVID has not hindered me much in the past. With all the new conditions I will see how the future will be. I believe my weight is a number one problem with much of what I am dealing with so getting the rest of the weight off and keeping it off has to be done. Eating correctly, exercise, education about CVID, IVIG infusions and managing your health along with your doctors is the most important steps you can take. Good luck.
    Anonymous 42,789 Replies
    • August 13, 2011
    • 04:17 PM
    • 0
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