Hi everybody,
my name is Beatrice, I am 24 year old and I was diagnosed CVID one year ago. I live in Italy near Milano.
I receive my IVIG every 3-4 weeks, depending on my levels.
In june my enlarged spleen was removed because my doctor suspected a lymphoma, but fortunatly it was an hyperplasia. But now I'm without spleen. Usually the IGIV treatment doesn't have any effect on me but I'm a little tired. My problem is that during the year I need to get antibiotics for flu or throat pain about 3/4 times. It means the treatment doesn't work? Is there someone else in my conditions? Or maybe with an enlarged spleen?
I'm very thankful with anyone will write to me. I feel less alone nw that I have discovered this forum...

Bea

Hello,

My name is Laura and I am 35. I was just diagnosed in August and had my first IVIG yesterday. I had no side effects and feel pretty good. I have been told that I will still get sick just like everyone else. I just won't be as sick for as long as I was. I should get over it with antibiotics just like a normal person because of the IVIG. Before IVIG I would get a cold that would turn into upper respitory infections or pneumonia and it would take a month of antibiotics to get over it. Sometimes even longer. I have been told that the IVIG is supposed to help your body to fight things not eliminate them. I don't think that your IVIG if not working. If you only get sick 3/4 times a year I think that that is very good. I have been sick since January of 2005 and hope to start feeling better. Also, my spleen is also slightly enlarged, but I did some reasearch and one of the symptoms of CVID is an enlarged spleen. I am shocked that yours was removed. My doctor is not even concerned. Hope this helps.

Laura from El Paso, Texas, USA

Hi,
thank for your reply. About my spleen, it was nopt just enlarged, but I had a big amount of cells that 'ate my
whit blood cell, and they had to do the biopsy: it's not safe to do it without removing it.
I though that IVIG treatment would solve my respiratory and infection problem, but perhaps it was just
a dream. I'm very happy to speak about my disease with someone else, even so far from Italy.

Bea

Hi Beatrice,

Sorry about the spleen. I had my first IVIG treatment on Wednesday (9-27). Don't know if it did anything. Didn't have any reactions. Feel like I had a bit of an energy boost. I just took my last antibiotic last night. So the IVIG is all alone now. We will see if it does its job. I still cough a little, but my allergies are acting up right now. Hope all is well with you. Talk to you soon.

Laura

Dear Beatrice,
my name is Bianca and live near Milan. I wonder if you already know the Italian patient organisation AIP (Associazione Immunodeficienze
Primitive). You can find more information - and also a forum - on our site: www.aip-it.org.
If you would like to get in touch with other young patients from Milan pls e-mail me: bianca@ipopi.org
I hope to hear from you.
Bianca

Hi everybody,

I'm new to the forums and I've been reading the posts because I'm 37 and have an Autoimmune disease called Inclusive Body Myositis for over 15 years. It's not CVID, but I do receive IV-Ig treatments for my disease too. I've noticed it can take a few months until you really see how well it works, so please hang in there!! This has been a miracle treatment for so many with Immune systems issues.

~ Kimmy
Keep a positive attitude!
Laugh, Love, Live & Learn
U.S.A.

Hi everyone, new to forum and PID. I did post for advise under another subject. I have spent 3 yrs feeling like a freak, was even told by one dr that I am just a freak of nature. I got tired of it all and wen to immunologist a few weeks ago at the KY University. Right before that I was diagnosed with seronegative RA. I was always a very sickly child with asthma and crazy infections...strep throat every year at least 3 times, Dr then wanted to do gammaglobulin injections but my parents were leary of the tx as not much known in the early 80's about blood and the whole HIV/AIDs scare made them choose not to tx with any blood product. About 3 yrs ago, not long after I started nursing school I got hit with bad arthralgia, wt loss, hair loss, enlarged lymphnodes popped out in my face, chin, neck, groin area, I also suffered horrible bouts of walking pneumonia and pnuemonia every 3-6 months for years., several times I was on respirator because of asthma attack brought on by pneumonia..nothing seemed to work except very high doses and injections of steroids. I will feel ill at night and wake up in am with full blown pneumonia and not even able to walk...scares hubby to death, and then run into er and I am admitted for weeks with pneumonia and astham exaserbation. I have been check for lymphoma, auto immune, and the works. GP took xrays of my hands and knees with this last bad flare...worst ever and I could hardly get around...said moderate-severe damage to joints and bone but my sed rates are low, and RA neg...not sure what to make of it but said RA diagnosis stands as I fit 5 of the 7 criteria (you need 4 for diagnosis)...Then I went to f/u with immunologist who was concerned re the pneumonia off the bat, he said very rare for adult to have pneumonia so many times and on schedule..he said even though I have had 2 pneumovax's in 5 yrs and had pneumonia in April and June of this year I have absolutely no antibodies to any pneumococcal strain, I also have no antibodies to 2 very common fungus's, the one that causes thrush and the one that causes athletes foot...he also said some compliments are very low, meaning that my body does not tag the invader organisms and does not produce immunity to certain ones. He gave me pneumovax and skin test for the fungus's and I go back for blood draw in 6 weeks, if levels not normal we will talk about ivig, if normal we repeat in 6 months and same game plan. Of course, 2 days later I have a nice thrush growth in my throat and athletes foot...shouldn't have either as skin test very sm amount, should just react locally...which I didn't/makes no sense. I feel like this DR has finally found what is my problem, and I have found research that states some PID actually cause the arthralgia and polyarthirtis...so now I am not sure about RA diagnosis, but immunologist encouraged me to keep appointment with Rheumy....he really wouldn't elaborate on what ivig would entail and kept saying...we will sit and have a long talk before we start, he really thinks I will need them as all this repeated exposure has done nothing to build antibodies...does any of this sound familiar...He warned me to wear masks and protect myself around my pt's, but I worry what my work will think of that. Sorry to ramble, any advise for a newbie?? To me my case sounds like possible CVID or selective IGG deficiency...Dr didn't want to talk about the details and would not even give me the reports for the antibody or immunogobloblin tests like he gave me all other reports...also wonder if it is RA would IGG levels look close to normal as PID is low IGG but RA increases IGG levels??? Thanks and all take care. Tammy

Dear Sissy,

I cannot believe that the doctor would not give you the test results. Those are yours and legally he has to give you copies of whatever you ask for. I would have him also check for lupus. Don't let the doctors take their sweet time with you. You march into the docs office and tell him you want copies and you want them explained to you. I too had wrist and knee pain. My fingers would swell. I have had 2 IVIG's and my wrists and knees are great. No pain at all. It has pretty much disappeared. My IGG, subclasses, IGA, and IGM are very very low. I had walking pneumonia in August and was hospitalized for three days. I too was a sickly child with asthma and strep throat and stomach viruses. I was always sick. I have not been sick since I started IVIG in September and my joints are great. No pain. I am still pretty tired here and there, but it is going to take several treatments to build me up. Hope this helps.

Laura
El Paso, Texas

Hello Beatrice,

I'm 37 years old, from Germany and was diagnosed with CVID about one year ago. I also had my spleen removed under the same misconception. What helped me a lot was IVIG to get me back on my feet. I only received that treatment because I asked around a lot and found a specialist in Germany, who researches in that area. I'm glad he helped, because my life is almost back on track now.

With the feelings of tiredness/fatigue, I found that Tai Chi and Chi Kung help loads. Since I do that every day, I feel much, much better and positive. Its also simply very interesting, once you get going.

Anyway, all the best!