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.
jackiealegria
for my whole life I have always been plagued with strange types of infections sicknesses multiple cellulitis infections that have left my body scarred I finally at the age of about 24 had a cellulitis infection in the most ungodly of places you could have one my anus I had a breakdown in the hospital and threw a fit that had been my 8 trip to the hospital for cellulitis infection in less than 6 months my whole life has been a constant merry go round of antibiotics which would just leave you sick and eventually none of them worked because I build up a tolerance but this doctor in the ER that day finally listen to me and took a minute to understand prior to this I had always just been told that I must be dirty and I need to wash more and wash my clothes more that this is something I was doing basically to myself I could prevent it if I improve my hygiene this just destroyed me every time I heard it because I knew in my heart it was nothing I was doing that was causing this I wasn't a dirty person I showered regularly I wash my clothes like you're supposed to if anything it caused me to wash things in myself more than I probably should have this just destroyed my self esteem I eventually was referred to a infectious disease specialist who sent me for all kinds of blood work and whatnot when I walked into his office for the first time I had my armor and my battle sword on and I was ready however this guy listened to my symptoms and what I've been dealing with and told me it wasn't anything I was doing this was a genetic condition I finally had an answer and name I had low IgG levels and then he told me there actually was a treatment at first he said I probably need to IVIG infusions per yearI went for my first one it made me sick while I was getting it but they told me that was normal it turns out I had a rash that I had thought was ringworm at the time of my infusion however that was diagnosed later as pityriasis rosea as well as active cellulitis infections the treatment lasted 3 months but those three months were the best ever I felt normal for once in my life I had energy my stomach was sick my nose was stuffy I was on top of the world however 4-5 months later I woke up one morning and that feeling of absolute death washed over me I suddenly felt like I had prior to the IVIG treatment it a panic I called my doctor he had me tested again and I'm currently reading my second IVIG treatment now he thinks I might need it more than twice a month I might need it every 3 month which is fine but to have felt normal and actually finally gotten to experience what not feeling sick or dealing with a cellulitis infection felt like to just feel like this crappy awfulness again was so bad I always had felt like this but to have felt normal and then to go back to feeling crappy it's almost more than I can deal with I always used to just push on and carry on with my life and keep how I felt deep inside and not let it hinder my daily life but now after my first IVIG treatment wore off this crappy feeling is more than I can deal with I can't eat I can't get up I can't do my daily business everyday is a struggle just to try and do the bare minimum I need to I know it's a process I have to go through to find out how my body responds to this treatment to find out how often I need itbut I just feel so alone and I don't think people understand and they just think I'm milking it or being lazy but it's beyond any strenght that I and its just worn on me I feel so at a loss and just so sick and awful my stomach constantly is cramped bloated and just upset it's a struggle to try and eat I know I have to you and I force myself to and I force myself to not throw up after but when I'm in a crash. Between treatments I just feel like death I know I'm not alone in my fight with this disease and I know people out there have it probably a lot worse than I do I've tried to find answers online but I'm not very good at searching for information online unfortunately I would love to hear anybody stories or anything anybody can find in mind to relate to just see what others have gone through gives me hope that there is a light at the end of my tunnel the journey you need to find people with similar experiences and compare notes to help you to reach where you need to go to draw strength from when you just have none so anybody out there who reads this and can maybe relate I would love to talk to you just for reassurance in my fight and maybe for some helpful tips and tricks you guys have all learned over your fight that will help me in mine thank you
The diagnosing criteria is low igg, iga and/or igm and failure to respond to usually 2 vaccines. Did you go through the vaccine challenge? I would HIGHLY recommend going to an immunologist, an experienced immunologist, get a valid diagnosis so that your insurance will pay for monthly infusions. You can contact the Immune Deficiency Foundation at primaryimmune.org for a list of immunologists in your area (keep in mind a lot of us have to travel a great distance to see an immuno but once diagnosed can liaise with a local doc for treatment). Good luck