C.V.I.D anyone??

[m3369]

recently diagnosed with cvid (common variable immunodeficiency).All lyme treatments have failed.I was just wondering if anyone else has been dxd with this.My doc says all of my past tests for just about everything could have been wrong as i am not producing any igg antibodies.Whatever i have has wrecked my nervous system 3 years now,dont think im ever gonna know what the hell is wrong with me.

[patsy10]

I have not heard of CVID.  My lyme tests were negative too and I have nervous system damage as well.

[JackieCalifornia]

Sorry, don't know about CVID.  Are you seeing an immunologist?

[Hope75]

Haven't heard of it at all. Very sorry, but if it's any consolation, my nervous system has been ravaged for three years by Lyme (this month makes 3 - yay).  I can see where you would get frustrated, b/c you'd like a diagnosis that you could treat.  Definitely see an immunologist if you haven't already.  I will have to google that....

Feel free to bounce ideas off of us, though.  Take care, Hope

[JackieCalifornia]

Have you seen an LLMD, that is an MD who takes a more 'progressive' view of Lyme disease?  Many fine MDs reject the newer research and theories about Lyme, and so miss the diagnosis when it's sitting right in front of them.

I was diagnosed with Lyme and a coinfection 3 years ago and have been treated successfully (to an extent -- had a reaction to some meds, so had a setback).  Recently, in an effort to 'refresh' my list of MDs I might need to see for various issues, I went to see a well trained, highly respected infectious disease ("ID") MD and told him about my Lyme+ saga, and he was clearly upset that I had been treated with extended antibiotics.  Not long before that appointment, I had been bit by some bug which I didn't recognize as a tick (duh), and I brought the bug with me and showed it to the ID doc along with the bite mark.  He peered at them, said it certainly looked 'buggy' and dropped the topic.  

**  This is a highly trained, respected, kindly and experienced ID doc, and he didn't show ANY interest in the bug or the bite?!  **

The moral of the story is:  even good docs make mistakes, so keep looking till you find answers that satisfy you.

[Spiritist]

I do not understand why this site does not have the Health Topic "Immunodeficiency".

CVID (Complex Variable Immunodeficiency) - low to very low immunoglobulins in blood.  Immunoglobulins are responsible for producing antibodies.  There are about five classes:  IgG, IgE, IgM, IgD, IgA.  IgA, mostly present in skin and mucosa, protects from common cold viruses, skin infections.  IgG - most abundant - the strong force behind your antibodies.  IgE - usually involved in hypersensitivity responses, such as allergic reactions (skin test for allergies is mediated by IgE - if you do not have IgE the test will be negative, and you will probably have no reaction to the control either).  

In some people only two or three of these that are low.  In others, all of them are almost undetectable (which is my case).

People like me, before being treated, typically have had many respiratory infections per year, each lasting a long time.  Repeated bronchitis, sinusitis, pneumonias, etc are telltale signs.  A common cold or an irritation of the airways can quickly become a secondary infection.  Unfortunately, many GPs (here in Canada at least) do not know much about it and often fail to take some precautions.

Nurses in Emergency Rooms also lack the knowledge, and will not triage you properly.  For example:  A person with CVID should not be sitting in the ER waiting room for six hours waiting to be seen because the exposure in such environment is just too high.