Hi everyone! I am a 33yr old LPN with Hospice. I will try to make this as short as possible. Health took rapid decline 3 yrs ago when parvovirus hit me hard, recent diagnosis of seronegative RA following horrific flare that almost had me bedbound, xrays show moderate to severe joint and bone damage/loss in hands, wrists, knees, elbows, and ankles. Glad to say that currently on meds that have reduced pain and inflammation of flares. I also have had swollen lymphnodes in face, ching, neck, groin, and other odd places, biopsy showed no CA thank goodness. Also with 30 pound wt loss, fatigue, and generall malaise and pneumonia just about every 4-6 months for last 2 yrs. I finally saw an immunologist at the University. Went in for f/u and bloodwork results yesterday...I did my best to follow the DR, but even though I'm a nurse and he explained several times...still foggy...What he said is this, I have absolutely no pneumococcal antibodies even though I have had 2 pneumovax in 5 yrs and had pneumonia April and June of this year, June episode almost killed me as I have moderate to severe asthma also. He also said that I have no antibodies to 2 types of fungus that causes thrush and athletes foot, he says it is rare not to have antibodies to these fungus's as they are found everywhere in the US and exposure usually occurs early in life resulting in immunity...explains why I have constant thrush in throat. He said I have a primary immune deficiency that is pretty rare, but wouldn't go into any detail as of yet. Overall IGG normal, but should be high with RA...wondering if deficient and RA makes levels normal?? I believe other immunoglobulin levels normal overall. He also said MCV high and MCH high as well as many borderline tests as far as protiens and electrolytes. He also said some very low compliments. He gave me skin tests for both fungus and said I should react and another dose of the pneumovax, I go back in 6 weeks to check antibody levels post vaccination, if low he says we will have to sit down and talk, if ok, repeat in 6 months, if low then we have to sit down and talk. He also mentioned that I probably should start some gammaglobulin injections but would like to wait for the 6 week bloodwork and see if pneumovax works. I have always been sickly child and pediatrician suggested gammagobulin shots several times to my folks due to frequent illnesses but they declined as not much known back then. Immunologist said I need to wear masks when visiting sickly pt's and see gp with any colds etc as I basically have no defense for any pneumococcal infection and can become very sick very quick(when the pneumonia hits me I go from 200mph to unable to get out of bed over night...scares the hell out of my husband...pardon french). I would appreciate any and all input that anyone has the time to give me...research only frustrates me more. I also wonder if these gammaglobulin shots will be for life as obviously even repeated exposure or pneumonia does not stimulate my body to produce any antibodies. I am sorry to ramble...am I making any sense??

Hi Sissy, Too much of a coincidence here. I'm an RN with hospice and CVID. I live in the San Bernardino Ca area. Where are you? I've had 4 IVIG treatments and am feeling better than I had been. I have no idea if I have any immunity against the pneumonicoccus or not and have no idea of which specific antibodies I may lack but the IgG, IgA and IgM levels were all low in 2 testings. The third done after the IVIG treatments showed an improved IgG level. I'm not taking any special precautions eg:mask and actually suspect I'm at just as much (maybe more) risk shopping in a crowded store but you keep on doing what makes you and hour doc comfortable! Maybe I'm too cavalier about personal precautions. There are lots of informative websites about PID/CVID and they're a good resource for nurses as well as everyone. Immunology is a complex subject and these sites write so most of us can understand the material.

This makes sense that your IgG improved because IVIG or SubQ Vivaglobin are mainly giving us IgG. Although there are small amounts of other Ig's in the immunoglobulin given, it's not the main component. I just asked a nurse about this because my IgA is deficient and so I was curious about this very thing. I am also IgG deficient, 3 subclasses, so I decided to give it another try using the SubQ and see how it goes for me cuz I too am tired of being ill all the time.
I hope you continue to get better!! Both of you. = )

Help!!!

I was diagnosed in April w/hypogammaglobulinemia. My IgG level is 610. They also did ct scan of chest and found nodules showing in my right lung. They are thinking it's scar tissue from all the URI's I have had over the past year. Antiobiotics were not even touching the infections, and I'd go back to work and get another URI w/in 2 wks. I also have B12 deficiency and I have Essential Tremour on top of everything else. For weeks I've bee asking my PCMD if I had leukemia and I've also asked the hematology/oncology/immunology MD if I had leukemia. They both said NO. Today I went for my first Gamma infusion. Now the Hemo spec is "Not sure" if I have leukemia. So, they draw blood, then they hook me up to an IV and run a Benadryl bag and give me 2 Tynelol. I had a sore throat. I settle into my lounge chair, start reading a good book, start to doze off and they had started 10cc bottle of Gammma when halfway through the bottle my throat closed over and I couldn't breath. Never seen so many people run in my life. They stop the Gamma, and started a bag of saline and a small steroid drip, and give me oxagen. Now they want to put me in the hospital for "a while" and load me up on steriods. URGGH! I've heard of too many things going wrong w/steriods. Plus I'm afraid of picking up a "staph" while I'm in hospital. They also told me they want to do a bone marrow test on 6/22/07 and I see the h/o/im spec MD on the
15th.

I need any insight, help, anyone out there can give me. To say I'm scard to death is an understatement. I'm 65 have one son who just got married in November and lives thousands of miles away in AZ. I had ICIS in my right breast in 1987, and hope the cancer is not back.

MaryAnn