Let’s Talk about CVID

Have you been diagnosed with CVID?  Did you know it’s the most frequest primary immunodeficiency in adults?  Approximately 1 in 25,000 people in the general population have CVID.  Thus it’s name- Common Variable Immune Deficiency.  Even though it’s cause is unknown, several genes have been linked to it.

What are the signs you may have it?

How does your clinical immunologist determine what is going on?  Especially since CVID is only 1 out of 300 types of PI?

Family History

Clinical History

Serum levels of IgG, IgM, IgA.  ( IgG and at least one of the others must be lower than they should be for your personal levels)

Serum specific antibody levels

Antibody testing against Pneumovax

B and T cell testing

additional testing might be done based on these results.

Most are diagnosed in the 3rd or 4th decade of life.  20% are diagnosed as children – however a diagnosis is not made before 4.

Even on IgG treatment, you may still experience infections in ears, sinuses, bronchi, lungs and GI.  Lymph nodes may be enlarged in neck, chest and abdomen from infection.  GI symtopms are NOT uncommon.  ( see my next post on SIBO)

If your replacement IgG is not sufficient- you may experience joint pain – especially in your large joints.

What addditional complications MIGHT go with CVID?

Autoimmune diseases and certain malignicies can be complications of many PI’s.  They are usually lymphomas, leukemia, or GI.

You ask – what is the prognosis for CVID patients?

from the NIH:

“The long-term outlook (prognosis) and life expectancy for people with common variable immunodeficiency (CVID) varies. The prognosis largely depends on whether there is severe autoimmune disease; whether there are recurrent infections that cause structural lung damage; and the development of a malignancy (cancer). Other major factors that influence prognosis include the extent of end-organ damage and how successfully infections can be prevented.

Affected people who have only bacterial infections have a better prognosis than those with additional complications and can have nearly normal life expectancy. This is especially the case if they are diagnosed early and begin treatment soon after the onset of symptoms.”

If you have one of the other 300 PI’s – there is not as much info on them.  Or even names for them.  I have one of those mystery PI’s.

Hope this info helps you with your CVID.

Any questions?

Talk to you later!








  • Evelyn Troha Posted July 20, 2017 7:45 pm

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  • Nancy Posted November 5, 2018 8:35 pm

    I have been sick with CVID for about 30 years now, I am 59 I am very sick, with this last year of about 100 doctor visits to get IV antibiotics for about 12 bacterias. I have psudumonas and c-diff the two bacterias that are always in my body now. My blood work shows low in about 7 areas of anemia and low white blood cells.
    I have a reason I am telling you all this, I have doctors that are putting out fires, but nobody that really understands the CVID or PI.
    I went to emergency the other day I had so much swelling in my legs and I guess it was red corpuscles breaking out, I thought it was a horrible infection. The doctor told me that I better get to downtown Houston and find doctors that can help me, or it could be life threatening if I don’t get seen and have answers.
    This shook me up, and I feel so lost by myself.
    Signing out Nancy

    • mm
      Carol Miletti Posted November 16, 2018 9:39 pm

      Nancy- I would like to help. We have an office in Texas- maybe a list of Immunologists? Please, let me know how I can help you. Send me a message here – or PM me on FB.

    • Peggy Langley Posted March 23, 2020 7:07 pm

      Ask primary for referral to hematologist or try making appointment on your own.life saver

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  • jenny Posted July 10, 2019 9:37 pm

    It be nice to have support. I have so much lack of understanding. I was diagnosed with an Igg immune deficiency.. And at 19 years old I was re diagnosed with CVID I am 30 now. And have just been recently diagnosed with RA (rheumatoid Arthritis ) sometimes it just seems never ending

    • Denise Marcelino Posted February 26, 2023 1:09 am

      Know how you feel. I am sorry to hear but in a way I feel I am not so alone. With CVID,Bronchiachtis , Lupus SLE , RA , IBD, bridged heart, I was a 3 month premature baby in the 60s have 43 illness’s and counting. Like u it’s something new they find the hard part is I have had 4 different cancers since I was 23 and have a lot of tumors they watch close for when they might turn malignant because of the immune response emergency room doctors are lost when you walk in the door they don’t know what to think or they think it’s all in your head until they can get the records from whatever hospital that normally does your care but I’m lucky now I’ve gotten used to the hospital and they’ve gotten used to me that you have to look forward to one day I don’t know you

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