anyone have the IGG test?
AnonymousMay 11, 2009 at 9:52 am
A friend told me to take the blood test for iGG which is supposed to reveal if your immune system is weak. I have had 9 viruses since December and, in my insurance program, can get infusions if the iGG is low. I hate to go to antoher doctor and do another test but I wonder if anyone has done this test and received infusions, and if they helped. Thanks, Jeff
AnonymousMay 11, 2009 at 4:38 pm
Hi Jeff! I keep infections of either a UTI or Respratory Infection. had an IGG test done last December but that test by what I thought was testing my for food allergies. It was a diagnostic tool for testing Celiac Sprue and check for food allergies. But am not sure what other things they use this test for. A really simple blood test. Wished I knew more about it except for what I learned. Good luck! Getting infections all the time are aggrivating. Fightng a respiratory one at the present that does not want to shake itself off. Hope you find out what happens getting the test!
May 11, 2009 at 4:47 pm
Don’t remember if you are cidp or gbs. I just had both of my sons tested for selective iga deficiency as we too had MANY virus’s since November. My older son, who is not on ivig and does not have cidp, tested ok. Kevie too, but I expected he would since he is on ivig. I asked the immunol. if you could be immune dificient (selective IgA) AND autoimmune. He said it is possible but not likeley. Being that my older son who also had the virus’s was ok, I suspect it was just bad luck this year with the flu. While I was on the computer searching for answers as to why we have had so many virus’s, I came across some info that suggested the bug starts, mutates, re-infects and it could keep going on till things run their course. Sucks for cidp people because in my opinion, the continual virus’s use up the ivig at a quicker rate. Good luck1
Dawn Kevies mom
AnonymousMay 11, 2009 at 6:52 pm
Thanks Linda and Dawn. Dawn-that is an interesting explanation of why the virus might keep coming back. The purpose of the test of IGG is:
A test for immunoglobulins (antibodies) in the blood is done to:
Find certain autoimmune diseases or allergies.
Find certain types of cancer (such as multiple myeloma or macroglobulinemia).
See whether recurring infections are caused by a low level of immunoglobulins (especially IgG).
Check the treatment for certain types of cancer affecting the bone marrow.
Check the treatment for Helicobacter pylori (H. pylori) bacteria.
Check the response to immunizations to see if you are immune to the disease
I did go ahead and make an appointment to see an immunologist this Thursday and I will have a long exam and then the test. I had GBS and just wonder if the immune system has been weakened in terms of IGG because of that. I would certainly think if you were on IVIG it would not be a problem, but IVIG didn’t work for me and, as always, I am still looking for some answers. My wife and my doctor tell me I probably just have to accept what is going on, but I still like to know why. Jeff
AnonymousMay 11, 2009 at 9:11 pm
Hi Jeff! A little confused on this test. I tested positive last summer with IgA Antibody or IgG. Something like that with Immunoglobulins. Would have to pull out my medical records but did test a low positive. What ever that meant! Then in December they tested me again for IGG. So I am not sure if both test are related or not. Might be the same test or might be different ones looking for two different things.
I hope the test turns out okay but I am like you! When I have a problem, I want to know what and why it’s going on. I don’t like being in the dark and not knowing what the heck is going on! Really scary stuff! Keep us posted on your test results and I wish you my best! Hugs
AnonymousMay 11, 2009 at 11:37 pm
Jeff, I think the test you are talking about is called quantitative immunoglobulins. This looks at the levels of IgG, IgM, and IgA. IgG is the most important. People look at IgM because these are the frontline immunoglobulins–showing ability to produce immunoglobulin recently. IgA is looked at because it is the immunoglobulin that crosses mucosal barriers–such as the nose to protect against sinusitis or into the lungs to help protect against pneumonia. The immunoglobulin levels may become low due to immunosuppressive treatment–such as steroids, or cyclosporin or immuran, etc or “chemotherapy drugs like cyclophosfamide or methotrexate, etc. Immunoglobulins will also be low after plasmapheresis.
If people are trying to tell if the immune system is working well enough, the amount of immunoglobulin matters as well as whether it is “specific” to a given infection. Some people have immunoglobulin, but it is not specific to be able to fight infections. Often people look at specific antibody to diptheria or tetanus to see that a person is able to make mature antibodies against something.
You mentioned autoimmune diseases–often people look at special tests such as ANA or anti-Hu antibodies, etc. For allergies, often people look at IgE levels to specific things. Usually looking for multiple myeloma is done with a serum protein electrophoresis (SPEP) in which one looks at the distribution of proteins and may see a large amount of one kind of protein (called the M-protein or monoclonal protein).
IgM is a really large immunoglobulin. You cannot replace IgM or IgA, but if someone is having lots of infections (especially viral infections), giving IgG can help if it was really low.
I hope this helps, WithHope
May 12, 2009 at 9:34 am
All of these acronyms are so confusing. Any suggestions about Kevie and what we can test for? Every two weeks or less for the past three months, he feels like he has the flu. We did switch to Octagam, is that a possibility for the recent frequency of feeling awful? I should mention that he has been sick on and off prior to the switch, just not as often. Should we test for any of those cancer tests Jeff mentions? I am going to consider vitamins, but we have just gotten back to normal w/the constipation issue, and I know that vitamins may ressurect that as we had that problem in the past. Could he have Lupus? I am so sad, he is not getting to be a little boy, he will be an adult before I know it and he is living his childhood like a sickly elderly person.
Dawn Kevies mom
AnonymousMay 12, 2009 at 11:30 am
Thanks Withhope. It is pretty confusing but your explanation does help. A friend urged me to get the test done because if IGG is low it can make more likely to get the viruses I have been getting. I have never experienced anything like it-starting if with Acute Paracarditis I then hada flu with high fever and many colds.
Dawn: My heart goes out to you and Kevin. I know just how he feels-I get what my wife and I call the residual flu a lot, especially this year. But I am getting to be an old f— and he is so young. Maybe it is just a really bad year for viruses. Anyway I will have a long talk with the immunologist this Thursday and learn what I can-I will get back with any relevant info.
AnonymousMay 12, 2009 at 8:31 pm
I just saw my Rhuemy today and they took 8 tubes of blood out of me! LOL! Ouchie! Well anyway I asked for a copy of the labs he requested and here is what they tested me for. IGM, IGG, IGA, C-Reactive protein, FOL, ESR, Creatinine Clearance Panel, CMPMP,CK, CH50, CBCA, C-4, C3,ANART, DHEA, Vitamin D, Anti-DSNA, ENA
I see they did the IGG again on me too like they did last year and back in December! Some of the test I know what they mean while others I have to try and look them up. All day at that doctor’s office but I think I am going to like him.
Good luck with your testing!
AnonymousMay 24, 2009 at 3:49 pm
Selah saw her new pediatric neurologist, Dr. Jerry Mendell, last Wed. and he diagnosed her within 5 minutes with cidp. I knew this in my heart but it is hard to hear as she is 2. I was hoping he would do more testing on her or something. He said that he wants to aggressively treat her and started her on weekly ivig at 5 grams per tx. He said that this keeps her at a steady flow rather than an up and down affect. He wants her nerves to heal and then see how she is functioning. He also prescribed pre benadryl and solumethal (a steriod) before each treatment. He said he wants her to go to the infusion clinic in the hospital for this. Her appt. time was 10:30 and they put her on at 12:45. This is a long time when you are 2. They could not get her iv started and had to do her thumbsucking hand.He also looked closely at her nerve study that was done in Dec. and said that she had no blockages, only slowing. I said I thought that this was good and he said no. He made it sound like blockages were easier to treat or something. I told him we were working for a full remission for Selah!!!!! He said absolutely. He said that a lot of children do go into full remission. He also made another interesting comment, He said that 50% of adults go into remission. Any comments on that from you guys? WOW!!!! I agree with Withhope in that someone needs to come up with a way to reset the immune system. I have a son that is really smart, and I keep telling him to grow up and be a Christian doctor that loves the Lord and does what the Lord tells him and the Lord will show him secret things that other people do not know!!!!! He loves science but he says he wants to be an engineer and work for the lego company. Oh well, maybe Selah. I am also trying to find out more about this IgG thing.
AnonymousMay 24, 2009 at 10:15 pm
I also am sorry that Selah has CIDP, but I am glad that someone is committing to what she has and especially that they are going to be aggressive about treating it. I think being aggressive is the most important thing. I would guess that Selah as a 2 year old is about 22-33 pounds (10-15 kg) so that she is probably getting 0.33 to 0.5 g/kg per dose. My understanding is that it has been a while since she had immunoglobulin. This means that she will have to build up to a therapeutic dose. Many people get a loading dose of 2 g/kg and then go on to get the follow-up schedule to keep the immunoglobulin level stable. If Selah is not a lot better in a couple of weeks, consider asking about getting the loading dose to get her up to a realy good level before working to maintain this level.
Regarding being patient when you are two years old–lots of the kids bring videos, coloring books, art projects, books to have read, games to play, etc and lots of the kids getting long infusions in the hospital where I work also pack a snack to have. It makes it a special “picnic” at the clinic. the parents often have a rather large carry bag or even duffle that they keep stocked with things for clinic.
There is an IV device called a port-a-cath (or port) that a lot of the little children get if they are getting frequent infusions. Some of the kids (like Kevie) on this site have one. Another possibility is a PICC line–which is temporary, but helps to give an easier IV access if Selah is going to continue to get very frequent IV immunoglobulin treatments. It is really hard for very little ones to get poked for IVs every week–especially if they are a “hard stick”. One of the children at the clinic where I work has only had IVs for almost five years of treatment, but she is older than Selah and all the others getting monthly immunoglobulin at this children’s hospital have gotten a port. Ports are placed in children in the operating room with the child asleep and there is a small risk of infection with use of them, but the “trauma” of having an IV started in really little children often makes having an easy IV access much, much more benefit than risk.
WithHope for a cure of these diseases.
AnonymousMay 26, 2009 at 7:29 pm
A port looks like a cylindrical disk about the size of a quarter across and about half of this in height. They make pretty small ones. The ones make for adults are a lot bigger and getting one made for a child is a lot more important than the manufacturer. Adult can get double lumen ports. This would be way too big for Selah and you do not need but one lumen. We use “low profile” ports on little children meaning that they are thinner. the port will make a bump under the skin that can be easily felt so that one can find the place to put the needle very easily. Usually they are put on the upper chest in children and under the skin. Medical personel use special needles to go through the skin (after it is well cleaned) and into the port. Typically, we use a numbing cream (LMX4) over the port so that the stick of the needle is minimized. It is a lot better for a young child to have one “stick” than multiple “sticks” and having to search around with a needle near a vein to start an IV.
Usually a pediatric surgeon puts it in. There are few pediatric vascular surgeons at all. You want a pediatric surgeon to do it because Selah is little.
WithHope for a cure of these diseases
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