Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 : I'm not really sure what they DID test for, I've never seen those specific names. If I were you, I'd re-post this message with KIMBERLY in the subject line, because she'd probably know!!! (, are you out there??! ) What they test for in the United States is different pneumococcal STRAINS. The strains have names like 18C, 14, 12F, 9N, etc. They usually test for the most common strains encountered here, some of which are present in the Prevnar conjugate vaccine. The strains you encounter in Australia could possibly be different? Or maybe they are testing a general total antibody count for all strep-pneumo bacteria (plus one strain - #2), and then only if that's low they go on to test other strains?? Just guessing there. Anyway, here's what they tested for, if this helps, but these are named by a " U.S. classification system " : S Pneumoniae AB IGG S Pneumo 1 IGG S Pneumo 3 IGG S Pneumo 4 IGG S Pneumo 6B IGG S Pneumo 7F IGG S Pneumo 8 IGG S Pneumo 9N IGG S Pneumo 12F IGG S Pneumo 14 IGG S Pneumo 18C IGG S Pneumo 19F IGG S Pneumo 23F IGG These strains were all tested for us at: (they were shipped out there) Specialty Laboratories Inc 2211 Michigan Avenue Santa , CA 90404 Director: B. MD, PhD Being in a different country, your tests may be quite different, I don't know! (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 : I'm not really sure what they DID test for, I've never seen those specific names. If I were you, I'd re-post this message with KIMBERLY in the subject line, because she'd probably know!!! (, are you out there??! ) What they test for in the United States is different pneumococcal STRAINS. The strains have names like 18C, 14, 12F, 9N, etc. They usually test for the most common strains encountered here, some of which are present in the Prevnar conjugate vaccine. The strains you encounter in Australia could possibly be different? Or maybe they are testing a general total antibody count for all strep-pneumo bacteria (plus one strain - #2), and then only if that's low they go on to test other strains?? Just guessing there. Anyway, here's what they tested for, if this helps, but these are named by a " U.S. classification system " : S Pneumoniae AB IGG S Pneumo 1 IGG S Pneumo 3 IGG S Pneumo 4 IGG S Pneumo 6B IGG S Pneumo 7F IGG S Pneumo 8 IGG S Pneumo 9N IGG S Pneumo 12F IGG S Pneumo 14 IGG S Pneumo 18C IGG S Pneumo 19F IGG S Pneumo 23F IGG These strains were all tested for us at: (they were shipped out there) Specialty Laboratories Inc 2211 Michigan Avenue Santa , CA 90404 Director: B. MD, PhD Being in a different country, your tests may be quite different, I don't know! (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 I think has a point -- The immunos don't really bother to do ALL the testing because no matter what your CVID specifics (in other words, as long as you're not SCID or candidate for bone marrow transplant), there's only one treatment -- IGIV (or SCIG, but it's still the same product). That's why our immuno only wanted to check the pneumococcal titers this time, I know she feels this 4th Prevnar won't have worked and she'll finally be able to convince me to do IGIV. But I wanted to know what else was going on in 's system and talked her into doing the other tests based on the fact that 's over two yrs old now and maybe (yeah, right) some of her problems were/are transient. But if just a couple of tests plus your history indicate treatment is necessary, I guess there's no need to test further, and I don't think a lot of insurance companies would want to pay for extensive testing just because you're curious about the particulars of your child's problem. Personally this drives me nuts because I HAVE to know, you know? I want to know every single aspect of the deficiency! (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) P.S. I'm going to wait to get this blood draw I've been DYING to do, since still has those pinpoint spots on her trunk. I've waited this long, I might as well make sure she's completely well so we don't throw off the results (though nobody's really sure that happens). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 I think has a point -- The immunos don't really bother to do ALL the testing because no matter what your CVID specifics (in other words, as long as you're not SCID or candidate for bone marrow transplant), there's only one treatment -- IGIV (or SCIG, but it's still the same product). That's why our immuno only wanted to check the pneumococcal titers this time, I know she feels this 4th Prevnar won't have worked and she'll finally be able to convince me to do IGIV. But I wanted to know what else was going on in 's system and talked her into doing the other tests based on the fact that 's over two yrs old now and maybe (yeah, right) some of her problems were/are transient. But if just a couple of tests plus your history indicate treatment is necessary, I guess there's no need to test further, and I don't think a lot of insurance companies would want to pay for extensive testing just because you're curious about the particulars of your child's problem. Personally this drives me nuts because I HAVE to know, you know? I want to know every single aspect of the deficiency! (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) P.S. I'm going to wait to get this blood draw I've been DYING to do, since still has those pinpoint spots on her trunk. I've waited this long, I might as well make sure she's completely well so we don't throw off the results (though nobody's really sure that happens). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 http://www.specialtylabs.com/test/details.asp?id=2386 this is the test that we ran once before, it just gives a level of antibody. http://www.specialtylabs.com/test/details.asp?id=2386P this is the test that compares pre and post vaccinations results. It also looks at the response in two ways. the first is whether there is a protective level of antibody (>200) and then it looks at the ratio. The ratio shows that an antibody response was mounted and that the person built antibodies (> 4 fold). Both tests compare 12 serotypes. Specialty does also offer a test that shows 4 serotypes. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 http://www.specialtylabs.com/test/details.asp?id=2386 this is the test that we ran once before, it just gives a level of antibody. http://www.specialtylabs.com/test/details.asp?id=2386P this is the test that compares pre and post vaccinations results. It also looks at the response in two ways. the first is whether there is a protective level of antibody (>200) and then it looks at the ratio. The ratio shows that an antibody response was mounted and that the person built antibodies (> 4 fold). Both tests compare 12 serotypes. Specialty does also offer a test that shows 4 serotypes. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Rebbeca, I'm confused too, lol. When Chad was tested as a baby, they didn't have such extensive testing as what they do now. With him being off IVIG for two years, and just having been retested again, they just repeated the ones he's always had. The only ones they do now is diptheria and tetanus antibody response and titers and of course, the full immunoglobulin testing. He did have the pneumovax and pneumoccal antibody testing in the past. And when he was first diagnosed, he had both B cell and T cell testing done though I don't know to what extent. With what tests Chad has done, it shows up his deficiencies right away, so I guess they haven't felt that they needed to put him through more than what they do. I'm learning quite a lot here from all the mothers and will keep it all in mind for future reference. So don't feel like the lone ranger out there!! Hope is feeling much better! , mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, IGA Nephropathy and Anemia Antibody levels > Well, I am more than a little confused and somewhat concerned. > > It seems with alot of the posts that when it comes to Pneumococcal Ab > testing, more than 2 types are looked at. The only Pneumococcal Ab levels > that has had tested are Pneumococcal IgG and Pneumococcal IgG2. I'm > not even sure if I understand about these two, let alone with the idea that > there are others that are routinely done in the US. > > I would like to talk to s immunologist about running more extensive > Ab testing, but would like to know what I should be asking for. > > , mum to (5) and (3), both with dysfunctional antibody > def, selective IgA def, hypothyroidism, GI issues, asthma, and (Ricjard) CPH > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Rebbeca, I'm confused too, lol. When Chad was tested as a baby, they didn't have such extensive testing as what they do now. With him being off IVIG for two years, and just having been retested again, they just repeated the ones he's always had. The only ones they do now is diptheria and tetanus antibody response and titers and of course, the full immunoglobulin testing. He did have the pneumovax and pneumoccal antibody testing in the past. And when he was first diagnosed, he had both B cell and T cell testing done though I don't know to what extent. With what tests Chad has done, it shows up his deficiencies right away, so I guess they haven't felt that they needed to put him through more than what they do. I'm learning quite a lot here from all the mothers and will keep it all in mind for future reference. So don't feel like the lone ranger out there!! Hope is feeling much better! , mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, IGA Nephropathy and Anemia Antibody levels > Well, I am more than a little confused and somewhat concerned. > > It seems with alot of the posts that when it comes to Pneumococcal Ab > testing, more than 2 types are looked at. The only Pneumococcal Ab levels > that has had tested are Pneumococcal IgG and Pneumococcal IgG2. I'm > not even sure if I understand about these two, let alone with the idea that > there are others that are routinely done in the US. > > I would like to talk to s immunologist about running more extensive > Ab testing, but would like to know what I should be asking for. > > , mum to (5) and (3), both with dysfunctional antibody > def, selective IgA def, hypothyroidism, GI issues, asthma, and (Ricjard) CPH > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 In a message dated 3/26/2001 1:12:23 PM Eastern Standard Time, bunneegirl@... writes: > The immunos don't really bother to do ALL the testing because no matter what > your CVID specifics (in other words, as long as you're not SCID or > candidate > for bone marrow transplant), there's only one treatment -- IGIV (or SCIG, > but > it's still the same product). > > That is exactly what happened to Kody! The concesses was that Kody was sick enough that it no longer mattered what we called it, but we knew enough that he had an immune deficiency and started the IVIG without further testing. I wish in a way that they had tested further first, but then I know how sick he was and wouldn't have wanted him to be like that any longer either. Diane, Mom to Kody age 5, IgG sub. class def., epilepsy,asthma,GERD, sinus disease and , age 15, age 14, Arika age 13, Kaila age 9, and age 7...all healthy! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Hi , I had to respond to your letter....you are correct that many insurance companies do not like to pay for expensive testing, but on the other hand, most do not like to pay for IVIG, as it too, is quite expensive. A few years ago when there was an IVIG shortage crisis...many patients had to be placed on a priority list. Physicians had been putting patients on IVIG for many other reasons then what it was intended for and this forced insurance companies to really crack down on the over-use and misuse of IVIG. Many physicians now, are being more careful and making sure that IVIG is warranted, sometimes at the cost of additional testing I have known families whose children were placed on IVIG under case management supervision with the insurance company. I know that the IDF has had its concerns with physicians misusing during the shortage crisis, etc and from what I was told by our physician, they expect these problems to work out over time. Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: Antibody levels > I think has a point -- > > The immunos don't really bother to do ALL the testing because no matter what > your CVID specifics (in other words, as long as you're not SCID or candidate > for bone marrow transplant), there's only one treatment -- IGIV (or SCIG, but > it's still the same product). > > That's why our immuno only wanted to check the pneumococcal titers this time, > I know she feels this 4th Prevnar won't have worked and she'll finally be > able to convince me to do IGIV. But I wanted to know what else was going on > in 's system and talked her into doing the other tests based on the fact > that 's over two yrs old now and maybe (yeah, right) some of her > problems were/are transient. > > But if just a couple of tests plus your history indicate treatment is > necessary, I guess there's no need to test further, and I don't think a lot > of insurance companies would want to pay for extensive testing just because > you're curious about the particulars of your child's problem. Personally this > drives me nuts because I HAVE to know, you know? I want to know every single > aspect of the deficiency! > > (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not > on IGIV > yet) > > P.S. I'm going to wait to get this blood draw I've been DYING to do, since > still has those pinpoint spots on her trunk. I've waited this long, I > might as well make sure she's completely well so we don't throw off the > results (though nobody's really sure that happens). > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Hi , I had to respond to your letter....you are correct that many insurance companies do not like to pay for expensive testing, but on the other hand, most do not like to pay for IVIG, as it too, is quite expensive. A few years ago when there was an IVIG shortage crisis...many patients had to be placed on a priority list. Physicians had been putting patients on IVIG for many other reasons then what it was intended for and this forced insurance companies to really crack down on the over-use and misuse of IVIG. Many physicians now, are being more careful and making sure that IVIG is warranted, sometimes at the cost of additional testing I have known families whose children were placed on IVIG under case management supervision with the insurance company. I know that the IDF has had its concerns with physicians misusing during the shortage crisis, etc and from what I was told by our physician, they expect these problems to work out over time. Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: Antibody levels > I think has a point -- > > The immunos don't really bother to do ALL the testing because no matter what > your CVID specifics (in other words, as long as you're not SCID or candidate > for bone marrow transplant), there's only one treatment -- IGIV (or SCIG, but > it's still the same product). > > That's why our immuno only wanted to check the pneumococcal titers this time, > I know she feels this 4th Prevnar won't have worked and she'll finally be > able to convince me to do IGIV. But I wanted to know what else was going on > in 's system and talked her into doing the other tests based on the fact > that 's over two yrs old now and maybe (yeah, right) some of her > problems were/are transient. > > But if just a couple of tests plus your history indicate treatment is > necessary, I guess there's no need to test further, and I don't think a lot > of insurance companies would want to pay for extensive testing just because > you're curious about the particulars of your child's problem. Personally this > drives me nuts because I HAVE to know, you know? I want to know every single > aspect of the deficiency! > > (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not > on IGIV > yet) > > P.S. I'm going to wait to get this blood draw I've been DYING to do, since > still has those pinpoint spots on her trunk. I've waited this long, I > might as well make sure she's completely well so we don't throw off the > results (though nobody's really sure that happens). > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Hi , I had to respond to your letter....you are correct that many insurance companies do not like to pay for expensive testing, but on the other hand, most do not like to pay for IVIG, as it too, is quite expensive. A few years ago when there was an IVIG shortage crisis...many patients had to be placed on a priority list. Physicians had been putting patients on IVIG for many other reasons then what it was intended for and this forced insurance companies to really crack down on the over-use and misuse of IVIG. Many physicians now, are being more careful and making sure that IVIG is warranted, sometimes at the cost of additional testing I have known families whose children were placed on IVIG under case management supervision with the insurance company. I know that the IDF has had its concerns with physicians misusing during the shortage crisis, etc and from what I was told by our physician, they expect these problems to work out over time. Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: Antibody levels > I think has a point -- > > The immunos don't really bother to do ALL the testing because no matter what > your CVID specifics (in other words, as long as you're not SCID or candidate > for bone marrow transplant), there's only one treatment -- IGIV (or SCIG, but > it's still the same product). > > That's why our immuno only wanted to check the pneumococcal titers this time, > I know she feels this 4th Prevnar won't have worked and she'll finally be > able to convince me to do IGIV. But I wanted to know what else was going on > in 's system and talked her into doing the other tests based on the fact > that 's over two yrs old now and maybe (yeah, right) some of her > problems were/are transient. > > But if just a couple of tests plus your history indicate treatment is > necessary, I guess there's no need to test further, and I don't think a lot > of insurance companies would want to pay for extensive testing just because > you're curious about the particulars of your child's problem. Personally this > drives me nuts because I HAVE to know, you know? I want to know every single > aspect of the deficiency! > > (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not > on IGIV > yet) > > P.S. I'm going to wait to get this blood draw I've been DYING to do, since > still has those pinpoint spots on her trunk. I've waited this long, I > might as well make sure she's completely well so we don't throw off the > results (though nobody's really sure that happens). > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 , I don't know the names of the B and T cell testing either. I'm hoping that you'll get an answer because I'd like to know this too. I was just told that my son was tested when he was first diagnosed. I'm sorry that you haven't been able to find anyone in your country who is living with this too. It was the same for me until finding this group. Well, I did find one little boy but was unable to make contact with his mother. So I understand how alone you feel. And like you, reading all the posts here, I look back and think that there were things that could've been done better and more aggressively for my son, but I think everything has a reason and ours was to find the right doctors and learn in the process. Hang in there! I hope will soon be better and that you'll get to the bottom of what is going on with him. Stay in touch! Re: Antibody levels > , I appreciate your reply! > > Seeing as how I was so fortunate to get such a wonderful response to this > pneumococcal Ab question, I am going to continue to pick your minds a little > further. Hope you all dont mind! s immuno is not going to know what > hit him when I see him next! I'll be armed with all this info, and I will > not budge from my chair until I am satisfied with all my questions that I > intend to fire away at him. And I am counting on the new ped to help with > all this, too. > Ok, here is the new question- just what tests are ordered there to test B and > Tcell function? has had alot of various testing done in August 00, > but I dont know the names of the B and T cell tests to make sure they were > included. It was before the time of the current immuno, and I have all the > results with me for reference. I do know the chemotaxis essay was not able > to be done due to 'technical problems' in the lab. Is this one I should ask > to be re-run? What does it show if it IS re -run? The 'immune function' > testing included Lymphocytes,monocytes, and granulocytes. > > I am sorry for all these nitty gritty questions, and hope no one minds me > asking for these details. > > Ursula, thanks for you reply re: bicarb. And , too. It is a relief > to hear that the blood bicarb levels may not be indicating anything in > particular. I had the impression from the immuno that he was looking for > something specific, though. I dont know what, but it was the impression he > gave at the time. I dont have all the results of the testing he has ordered > for in the past, maybe there is something else in one of the lab > results that he hasnt told me of yet, and he is putting two and two together > before he decides to share. > > , I'll reply to you weekend post later today......I can hear the > children waking, so best go start the day. > > , mum to and > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 , you're very welcome! Again, keep in mind I don't really know what it was that they tested your for, I may be stirring up a hornet's nest for nothing! I can't interpret the results (the #s) unless I know the parameters -- did you see the actual results from the lab? They usually say what the parameters are for a " normal " response. The pre- and post- antibody question is a good one. Based on advice from the group I asked my immuno about this very thing. It makes so much sense to do pre- titers right before the test, right? Well, our immuno said they just use the titers from the last test as their " pre- " level. If I put on my turban and try to read her mind (;o)), I'd guess that if you had some exposure in the meantime, AND the vaccine works, then would have BIG numbers for that strain (so it's okay they don't know the #s right before the test). And if he had some pneumo illnesses and didn't mount a response in the meantime, well I guess you'd assume he won't mount a response to the vax either. AGAIN, that's just my guessing from info she's given us in the past, those are not the immuno's words. GUESSING!!!! Yes you may take my letter, though the docs will probably laugh at my attempts to be medical! (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 , you're very welcome! Again, keep in mind I don't really know what it was that they tested your for, I may be stirring up a hornet's nest for nothing! I can't interpret the results (the #s) unless I know the parameters -- did you see the actual results from the lab? They usually say what the parameters are for a " normal " response. The pre- and post- antibody question is a good one. Based on advice from the group I asked my immuno about this very thing. It makes so much sense to do pre- titers right before the test, right? Well, our immuno said they just use the titers from the last test as their " pre- " level. If I put on my turban and try to read her mind (;o)), I'd guess that if you had some exposure in the meantime, AND the vaccine works, then would have BIG numbers for that strain (so it's okay they don't know the #s right before the test). And if he had some pneumo illnesses and didn't mount a response in the meantime, well I guess you'd assume he won't mount a response to the vax either. AGAIN, that's just my guessing from info she's given us in the past, those are not the immuno's words. GUESSING!!!! Yes you may take my letter, though the docs will probably laugh at my attempts to be medical! (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 , you're very welcome! Again, keep in mind I don't really know what it was that they tested your for, I may be stirring up a hornet's nest for nothing! I can't interpret the results (the #s) unless I know the parameters -- did you see the actual results from the lab? They usually say what the parameters are for a " normal " response. The pre- and post- antibody question is a good one. Based on advice from the group I asked my immuno about this very thing. It makes so much sense to do pre- titers right before the test, right? Well, our immuno said they just use the titers from the last test as their " pre- " level. If I put on my turban and try to read her mind (;o)), I'd guess that if you had some exposure in the meantime, AND the vaccine works, then would have BIG numbers for that strain (so it's okay they don't know the #s right before the test). And if he had some pneumo illnesses and didn't mount a response in the meantime, well I guess you'd assume he won't mount a response to the vax either. AGAIN, that's just my guessing from info she's given us in the past, those are not the immuno's words. GUESSING!!!! Yes you may take my letter, though the docs will probably laugh at my attempts to be medical! (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 , Chemotaxis is one step of killing of a bacteria -- essentially a step where the cell uses a chemical (hence, the " chemo " ) to intervene and lyse (break open) the cell. Usually that chemical is hydrogen peroxide, produced inside the cell. Impaired cell chemotaxis is indicative of a specific PID called Chronic Granulomatous Disease, and the specific test for that is usually called the NBT, or Nitrile Blue Test. I'd ask for it to be done. 's profile doesn't exactly fit CGD, but then it doesn't really " fit " anything else, either -- he's sick, and they need to look into everything they can. The treatment wouldn't change much for CGD except to cover for specific bacteria, respond differently to GI problems, and offer the chance of stem cell transplant (just been tried in the US, probably had been done in UK before that). As you know, CVID isn't treated with transplant, typically, so that's the biggest difference. Other tests that are often ordered: Pre/post pneumococcal (and to answer your question, I'd want one drawn now, rather than 7 months ago, or something, to compare with the post titer) Diptheria titer Tetanus titer Total IgG IgG subclasses IgA IgM IgE Total lymphocyte panel (CD3, CD4, CD8, CD19, CD56, % and absolutes) B cell " function " is measured primarily by the Pre-Post Pneumococcal panel T cell function is measured by mitogen tests against PHA (Phyto-Hemagglutinin), Con-A (Concavalin-A), and PWM (Pokeweed Mitogen), and Antigen tests against Candida, Tetanus, Diphtheria, or any other random things you would expect to be exposed to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 , Chemotaxis is one step of killing of a bacteria -- essentially a step where the cell uses a chemical (hence, the " chemo " ) to intervene and lyse (break open) the cell. Usually that chemical is hydrogen peroxide, produced inside the cell. Impaired cell chemotaxis is indicative of a specific PID called Chronic Granulomatous Disease, and the specific test for that is usually called the NBT, or Nitrile Blue Test. I'd ask for it to be done. 's profile doesn't exactly fit CGD, but then it doesn't really " fit " anything else, either -- he's sick, and they need to look into everything they can. The treatment wouldn't change much for CGD except to cover for specific bacteria, respond differently to GI problems, and offer the chance of stem cell transplant (just been tried in the US, probably had been done in UK before that). As you know, CVID isn't treated with transplant, typically, so that's the biggest difference. Other tests that are often ordered: Pre/post pneumococcal (and to answer your question, I'd want one drawn now, rather than 7 months ago, or something, to compare with the post titer) Diptheria titer Tetanus titer Total IgG IgG subclasses IgA IgM IgE Total lymphocyte panel (CD3, CD4, CD8, CD19, CD56, % and absolutes) B cell " function " is measured primarily by the Pre-Post Pneumococcal panel T cell function is measured by mitogen tests against PHA (Phyto-Hemagglutinin), Con-A (Concavalin-A), and PWM (Pokeweed Mitogen), and Antigen tests against Candida, Tetanus, Diphtheria, or any other random things you would expect to be exposed to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 Yikes - that's what I get for sending mail when I'm bleary-eyed! First, I lied. Chemotaxis isn't killing with chemicals, it's basically cells' ability to talk to each other with chemicals. That is, one cell finds a bacteria or pack of them, and it sends signals to other cells of the same type by putting out a gradient of chemical. So the highest amount of chemical is right there where the bad guy is to be faught, but there's a diminishing trail leading away from it, so that other cells can " follow the scent " in a way, to help out killing the bad guy. I don't remember the name for the problem in CGD, but it sounds similar, and I'll no doubt remember it as soon as I hit the send button! The tests that I wrote are not to be taken as a complete list, because there are lots of others that can be done, or probably should be done, depending on how sick someone is, but that was a start. In someone with CVID, I would probably want a baseline CBC, ANA, and ESR (sed rate), if only to compare to future numbers. Again, the lists could go on forever, but that was a beginning.... let me know if there are specific tests you're thinking of and wondering if they're useful. I hope that helps... sorry for the mistakes/omissions -- long week! Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 Yikes - that's what I get for sending mail when I'm bleary-eyed! First, I lied. Chemotaxis isn't killing with chemicals, it's basically cells' ability to talk to each other with chemicals. That is, one cell finds a bacteria or pack of them, and it sends signals to other cells of the same type by putting out a gradient of chemical. So the highest amount of chemical is right there where the bad guy is to be faught, but there's a diminishing trail leading away from it, so that other cells can " follow the scent " in a way, to help out killing the bad guy. I don't remember the name for the problem in CGD, but it sounds similar, and I'll no doubt remember it as soon as I hit the send button! The tests that I wrote are not to be taken as a complete list, because there are lots of others that can be done, or probably should be done, depending on how sick someone is, but that was a start. In someone with CVID, I would probably want a baseline CBC, ANA, and ESR (sed rate), if only to compare to future numbers. Again, the lists could go on forever, but that was a beginning.... let me know if there are specific tests you're thinking of and wondering if they're useful. I hope that helps... sorry for the mistakes/omissions -- long week! Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 , Your post made sense, so it looks as though can do without another traumatic needle stick until after the pneumovax has been given. Oh, and by the way, the report for the pneumoccocal ab. results did not have ranges or parameters for that particular test, just the results I gave. I thought this was a little strange at the time........ How is doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 , I know you must hear this all the time, but do you truly TRULY relise how valuable your help, concern, and information is to all of us??? Thankyou from the bottom of my heart, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 , I know you must hear this all the time, but do you truly TRULY relise how valuable your help, concern, and information is to all of us??? Thankyou from the bottom of my heart, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 , I know you must hear this all the time, but do you truly TRULY relise how valuable your help, concern, and information is to all of us??? Thankyou from the bottom of my heart, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 , What is the ESR (sed rate) all about? I have heard alot mentioned in the group of sed rate, but have no idea what it means, and what it is for! Also, what is Endomysial Ab all about? s results read negetive. Is this good? You may be reading this and smiling at my nievity. Well, you dont know if you dont ask! Quote Link to comment Share on other sites More sharing options...
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