I was 640 at diagnosis. I was caught fairly early with my immunodeficiency. I had a lot of damage to my organs prior to being diagnosed, but it seems that the Igg levels trend down the longer it takes to be diagnosed. I would see an immuno. They can do some vaccine challenges to see if you fall under the category of immunodeficiency. Igg levels can be low in a normal person, but since you are symptomatic it would be wise to explore. I am receiving IVIG treatment, and would not have quality of life without it.

i was just under 600 upon diagnosis.

i would strongly recommend going to an immunologist, igg levels that low do show some type of immune deficient syndrome. and ivig is amazing. it can have some side effects but it is so worth it.

mine was like 312 with nearly no iga. Go to an experienced immuno if you can. Contact IDF and they can give you a list in your area:

www.primaryimmune.org

My IgG was around 500, IgA and IgM were both under 50. I also had numerous infections that year. I also suggest a good immunologist.

Mine was 420 the first time it was checked but got as high as 590 before treatment. My lymph nodes stayed swollen before I was diagnosed and on treatment. I also had chronic sinus infections, which was why they started looked at my IgG. I agree with everyone else who said to go to an immunologist. I started treatment in October and I've not had a sinus infection since.

Please keep us posted. Best of luck.
Love and hugs,
Ashlee

Hi Mairnster,

Welcome! My history and conditions are very similar to you. I was first diagnosed 12/10 and my total IgG level was 602, because I could not afford Immunoglobulin therapy for 2 years, I was retested again 11/12 and at that time, my total IgG was 402. Thankfully at that time, Baxter covered all treatment expenses until I qualified for the PCIP insurance program. Both times, all of my antibody titer tests (Pneumovax 23 and Tetanus) were less than 20%- Not Detectable.

My lymph nodes in my neck have been enlarged and unchanged since 02/09 and one popped out under my arm a year ago May and has remained enlarged- I am considered in the 90% of getting Lymphoma and/or additional blood cancers). I have an Oncologist that takes biopsies regularly for Lymphoma and Breast Cancer. I also have issues with an enlarged Spleen.

For me, it is hard to describe the soreness in my neck as it is not a sore throat on the inside of the throat, the soreness is on the outside, but it is not the Lymph Nodes that are sore. My Oncologist stated it is because the Lymph Nodes are pushing against the throat and various glands.

When I was a senior in High School, I had a severe case of Mononucleosis and missed my 1st semester of my senior year. Once you have had Mono, it never truly goes away, it is in remission, thus the term chronic EBV.

I too, have upper respiratory (chronic sinusitis, dysfunctional eustachian tubes and ear infections), GI issues and staph infections on my cheek and inside my nose.

As everyone mentioned, it is time to see an Immunologist to get a proper diagnosis. To get a proper diagnosis, you will need to get the antibody titer tests (vaccine challenge) as it is the combination of low IgG numbers and your antibodies not properly mounting to the vaccines given.

Good luck and wishing that your tests come back normal and that your IgG levels can get back to normal levels on their own. I would not wish this disease on anyone.

The process and waiting period is long, so have patience and do your best not to stress and panic. I know that is easier said than done, but I personally just went through my 2nd breast cancer scare and quietly panic every time I wait for the biopsy results from my Lymph Nodes.

Denise

My Igg was 680 I think, and 3 sub classes were very low and I was in the hospital just about every month with a major infection..I was actually in the hospital with pneumonia when my test results came back, my doctor said that my Pneumovax was like I never had it...They started the IVIG the same day..Which was a good thing because I was not responding to any antibiotics..

Celebrating 8 months of no hospital visits since starting IVIG..This is a major stride for me..I lived at the hospital for 3 years...I would be in the hospital for 1-3 weeks go home for 1-2 weeks then back to the hospital with another infection..Love my IVIG...

Don't be afraid to keep going to a doctor, the life you save, just might be your own...I had a doctor keep telling me I was depressed for several years, turned out I had Hemochromatosis, and almost died. Had no working thyroid, for over 3 years. Have restrictive cardiomyopathy, cirrhosis, pancreatitis, stage 2-3 kidney disease, arthritis..and to many infections to count..If he would have listened to me I wouldn't have so much wrong with me, and CVID on top of it..You know your own body, don't stop..

HUGS
Cheryl

Hi newbie, I;m a newie too as of today. My total IGg was 620 in 2005. In 2012 it was 384, along with low IgA, IgM, also low igg1 and 2. I started
IVIG a year ago. My total IGg is up to 960. My opinion, is that if you're unsure, see a specialist.

My IgG was 396, subclasses 1,2,3 were low, IgA was 59, IgE

Maybe my post will actually work this time...

My IgG was 396, subclasses 1,2,3 were low, IgA was 59, IgE

Hay girls I am back
My igg at diog was ***28***! yes 28 at deaths door it was a knocking and It was answered too...NO soliciting Ha!

i have all that stuff and positive for EBV and CMV plus some other stuff. my levels were 525 for IGG and about 18 for IGM. the plan now is to try and get me to over 1000 and see how these infections do. I also heard somewhere we can start showing positive for past EBV etc after infusions? does anyone know if thats true? so, from other pp?

I was just diagnosed last month.

IgG-530 (IgG1-low at 340, IgG2-low at 65, 3 and 4 normal)
IgA-0 detected
IgM-81

I know how it is going from doctor to doctor worrying about coming off as a hypochondriac, but I highly suggest seeing an immunologist. I have my blood taken bi weekly usually due to a pituitary issue, and no doctor even suspected an immunodeficiency. I have been symptomatic since the age of 4; scarlet fever, sinus infections, flu, pneumonia, gi issues, constant sore throat, swollen spleen, etc were all the normal for me. Even two infectious disease doctors shrugged their shoulders. An immunologist would be able to have much more information and knowledge than anyone else about your questions.

Thank you all for your replies. I truly appreciate them. My entire life has been a constant struggle against fatigue starting as early as I can remember. I am 42 and am actually am a pharmacist. I have tried to get doctors to figure out what was wrong with me since my early twenties to no avail and instead to just be treated like a hypo. In 2009, I just gave up and gave in. My marriage ended, and I finally got to take a part time job which is hard to manage even now. I gave in to the fatigue and depression and guilt caused by not having the energy to live a normal active life and accepted my low energy, non-social, hermit lifestyle just so I could get by. It was only out of complete misery that I recently requested to be seen again by a Lyme specialist that I had seen 3 years ago , that I finally put 2 and 2 together myself. My Igg was low in 2011 but I didn't know what it meant then and only when it came back lower now last month did I actually do the research myself. What a shame--I asked the Lyme dr about it and he knew and said my ability to fight infection is not good, but he never told me to see a doctor for that or anything. Plus, i still have the immunoglobulins indicating that I am in the recovery phase of an active EBV infection--which hasn't changed in 3 years. I am frustrated because it does seem like doctors do not 'finish' things. I had to research myself to find a doctor that knows about CVID myself and made an appointment. It is august 18 and I pray they will do thorough screening. I feel like when I do go to doctors and they hear I am a pharmacist, they just automatically don't believe I can be as sick as I say I feel. And I hate that feeling and so it is hard for me to communicate it clearly to them. If only they knew how I have just been hanging on by a thread for most of my life and how that thread broke a long time ago already. Please , if you would just think a tiny prayer thought for me for that dr to be able to understand. He is a pediatric allergy/immunology dr and is the only CVID knowledgeable dr in an entire half/state hospital system that sees adults for CVID. I have so many weird and scary symptoms that I hope he will do the testing for to qwell my fears. My father died when I was 17 of Hodgkin's lymphoma and I know that Hodgkin's is not supposed to be related to CVID but non-Hodgkin's is. He also had to have a splenectomy due to splenomegy. Have any of you had full body scans to look for lymphoma? Is it B cells I should ask the dr to check to see my lymphoma risk? I have pain under my arm and told my pcp but she said it was just that that muscle in my armpit on that arm is much bigger than my other arm. Scary. And I hAve no trust anymore in drs.