Common Variable Immune Deficiency (CVID), do you have it?

[malditogrillo]

Or any other immune deficiency?

I did a search, and I saw a few mentions of it, but I couldn't find a post dedicated to it.

I've read that it's common to develop AI with immune deficiencies....

And as a think about all my symptoms over the years and how nothing has shown in my bloodwork or biopsies...the doctor doing extensive testing for it...and my recent nonreaction to a candida test, im getting kind of nervous.

I won't know until next Friday, but everyday I get more and more nervous.  But at the same time, I really hope I get some answers.  This has gone on for too long, and I can't keep living like this. 

So yeah, anybody???

[irish]

Those darn immune defiencies just sneak on in there don't they!!!! I have Dysgammaglobulinemia which means that I have low white cells. I have severely low T-cells. Normal is 1100-1600 or so and I have had lab reports as low as 327. I told me immunologist that I must be almost as bad as an Aids patient and he told me I was worse.

I get IVIG once a month for my mysthenia gravis and the IVIG is also the treatment for the low t-cells. I have had infections for years. Started having more than the usual in around 1975 and would be so weak and ill but just kept going. As time went on it seemed like I was always in the doctors office and they even gave me heck for wanting antibiotics so much. One doc did ask me one time if I felt better when I was on them. Well, duh!!!

You could have knocked me over with a feather when this showed up. Not only that, but my hubby who has had celiac sprue for almost 40 years just had testing and he has very low IgG levels and might need IVIG. I really think that the doc will put him on antibiotic tabs 2 times a day though. Hubby has some impaired kidney function and I think the IVIG might be too hard on his system.

Keep us updated on what your testing shows. It will be interesting to see how the doc decides to treat you.  I had an aunt who I think had myasthenia gravis also and she ended up with low white cells and would have to have gammaglobulin shots periodically for infections. Good luck. Irish

[malditogrillo]

Thanks for responding.

it's so crazy to think that my GI symptoms is what even led to this being discussed as a possibility. 
If I wouldn't have gone to a new doctor, there is no telling how long I might have gone before I even trusted another doctor enough to even schedule an appt.

The only thing that scares me about possibly having a deficient immune system is knowing that I have problems with yeast and antibiotics will make it worse...
Well, I'm also terrified of being told nothing was found lol...i am tired of not having answers.

Did you ever have the candida skin test?

[Linda196]

I seem to be at the other end of the spectrum...IgA and IgG through the roof, IgM at the high end of normal, and b- and t-cells that range from "significantly elevated" to WOW (my rheumy clinic nurse's reaction).

One of the immunologists with whom I used to work in plasma exchange therapy, and who is familiar with my medical history, even joked, "Don't get any on you", referring to the IVIG.

Right now, on Prednisone and Methotrexate for over 7 years, my immune system has never been compromised, just reigned in a bit. I've had 2 head colds in that time, and I used to average one a decade!

[irish]

I don't get many head cold either. I think I have had one in the last 7-8 years. I did have a couple of doozies in the late 80's but my infections were always more in sinuses and bronchial tubes.

My doc tells me that the t-cells that I do have must work like little trooopers. He said I should really worry about catching the viruses but I haven't had many issues with that infection---at least until I opened my mouth and said this. ::)Irish

[malditogrillo]

   
I never used to get sick...maybe once every few years but when I did get sick, it would be horrible...I used to get bronchitis a lot.

I think I've had a sinus infection for the last five years.  And now, every time someone at work is sick with a upper respiratory infection, I get it every.single.time.

And it takes me forever to get over it...this last bout lasted two months.

[susu]

Yes, just diagnosed.   
FWIW I read somewhere  that folks with Sjogren's (tend?) to have elevated Immunoglobulins and low WBC count.    I have the opposite ie low Imms (IGG and IGA) and elevated WBC count.     Sjogren's antibodies neg as well ANA and RF.   I have the symptoms of Sjogren's but not the bloodwork to support that Dx.    Maybe instead I have Lyme/Bartonella.
So difficult to get diagnosis and know how/what to treat.   

[gurs]

I have it too...like Irish..low t-cells too. The strange this is that over the last 7 years, I dont get any infections..no colds, flu, etc...only candida..(knocking on wood)
The doc said he has a few patients with autoimmune just like me..something with our immune system fighting off the invaders.(that's because they are busy attacking everything else in my body (ha ha). I know others on this board get sick all the time. I cant remember the last time I had a fever too...but, i guess that is a bad thing, not being able to have fevers?. Ive been in a chronic SS/Lupus flare for the last few years so thats enough to deal with right now. Then again, just thinking That I live alone and never go anywhere? dont have much contact with others so that is probably why I dont pick up anything? that makes more sense to me.

Gursie

[malditogrillo]

So weird.  All my tests came back normal except that my t cell count was very high....causing my lymphocyte % to be high.  rbc was high.  still had microcytosis and hypochromia...but all my IG levels were completely normal.

*shrugs*