Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 thanks - they have contacted the lab in California and her immuno to double check but we've not heard anything yet. Ursula @...: hobbsfamily@...: Wed, 12 Nov 2008 20:38:10 -0500Subject: Prometheus testing Ursula and and others,This is from the Prometheus website and something to consider with CVIDpatients - part of the testing is based on specific IgG and IgA antibodies,which may or may not be present in CVID patients. We were going to run thistest but both GIs we've seen said that it wouldn't be reliable. You mightwant to bring this info to your respective doctors before going through withthis expensive test.PROMETHEUSR IBD Serology 7 is the most comprehensive inflammatory boweldisease (IBD) test available. Utilizing several proprietary and patentedmarkers and incorporating sophisticated pattern recognition technology,results may help physicians diagnose IBD and differentiate betweenulcerative colitis (UC) and Crohn's disease (CD). Knowledge of serologicmarkers may help determine more severe disease phenotypes, and help predictdisease behavior. . A quantitative analysis of bio-markers combined with the Smart DiagnosticAlgorithmb (pattern-recognition technology) for IBD prediction anddifferentiation . PROMETHEUS IBD Serology 7 is only offered at Prometheus . Specimen Requirements - Serum, 2.0 mL: SST or Red Top Tube . Shipping and Handling - Ambient or refrigerated . Storage Conditions/Stability - 7 days ambient; 14 days refrigerated . Turn Around Time - 3 to 4 days . Reference Range: NOTE: Patient test results are based on the SmartDiagnostic Algorithm. Assay and reference values are provided for prognosticinterpretation. ASCA IgA ELISA: <20.0 EU/mL ASCA IgG ELISA: <40.0 EU/mL Anti-OmpCa IgA ELISA: <16.5 EU/mL Anti-CBir1a ELISA: <21.0 EU/mL AutoAntibody ELISA: <12.1 EU/mL IFA Perinuclear Pattern: Not Detected DNAse Sensitivitya: Not DetectedHope this helps!Mom to , 6 - GSD, CVID, central respiratory failureMeredith, 3 - GSD, CVID, central respiratory failure, 9 - healthyCarmel, INwww.caringbridge.org/visit/mhobbs[Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 , I don't post often at all but your post this morning really caught my eye. I have a son with CVID and polysaccharide antibody deficiency. In 2005 he underwent a colonoscopy due to a rapid 15 pound weight loss and bloody stools and was given a diagnosis of crohn's disease at the time. He is currently Gtube fed and on a whole bunch of medications for the crohns. Recently his GI doctor has got it into his head that because the Prometheus testing on him comes back negative for crohn's and ulcerative colitis that he must not have it. Also he underwent another colonoscopy in July which still showed bleeding and inflammation throughout his GI tract and he had coffee ground blood in his stomach that was coming up from the small intestinal tract. The GI doctor has decided to stop treating him for crohn's and is weaning him off the medications and the Gtube feeds. I asked if the negative testing could have anything to do with his immune deficiency and he said no. He is again losing weight. Where can I go to print off this material you found that says it is unreliable in immune deficient conditions so I can print it off and show it to him. Thanks for sharing, Patty Prometheus testing Ursula and and others, This is from the Prometheus website and something to consider with CVID patients - part of the testing is based on specific IgG and IgA antibodies, which may or may not be present in CVID patients. We were going to run this test but both GIs we've seen said that it wouldn't be reliable. You might want to bring this info to your respective doctors before going through with this expensive test. PROMETHEUSR IBD Serology 7 is the most comprehensive inflammatory bowel disease (IBD) test available. Utilizing several proprietary and patented markers and incorporating sophisticated pattern recognition technology, results may help physicians diagnose IBD and differentiate between ulcerative colitis (UC) and Crohn's disease (CD). Knowledge of serologic markers may help determine more severe disease phenotypes, and help predict disease behavior. . A quantitative analysis of bio-markers combined with the Smart Diagnostic Algorithmb (pattern-recognition technology) for IBD prediction and differentiation . PROMETHEUS IBD Serology 7 is only offered at Prometheus . Specimen Requirements - Serum, 2.0 mL: SST or Red Top Tube . Shipping and Handling - Ambient or refrigerated . Storage Conditions/Stability - 7 days ambient; 14 days refrigerated . Turn Around Time - 3 to 4 days . Reference Range: NOTE: Patient test results are based on the Smart Diagnostic Algorithm. Assay and reference values are provided for prognostic interpretation. ASCA IgA ELISA: <20.0 EU/mL ASCA IgG ELISA: <40.0 EU/mL Anti-OmpCa IgA ELISA: <16.5 EU/mL Anti-CBir1a ELISA: <21.0 EU/mL AutoAntibody ELISA: <12.1 EU/mL IFA Perinuclear Pattern: Not Detected DNAse Sensitivitya: Not Detected Hope this helps! Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy Carmel, IN www.caringbridge.org/visit/mhobbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 I think we have to realize that any of these tests are inaccurate also the ELISA Allergy testing. Since these kids do not build anitbodies in other areas of there immune systems what is to say that they can in these tests. I would find another GI doc to look at your son at a major medical center. BARBIE ________________________________ From: Patty Lapinski <plapinski@...> Sent: Thursday, November 13, 2008 10:27:15 AM Subject: Re: Prometheus testing , I don't post often at all but your post this morning really caught my eye. I have a son with CVID and polysaccharide antibody deficiency. In 2005 he underwent a colonoscopy due to a rapid 15 pound weight loss and bloody stools and was given a diagnosis of crohn's disease at the time. He is currently Gtube fed and on a whole bunch of medications for the crohns. Recently his GI doctor has got it into his head that because the Prometheus testing on him comes back negative for crohn's and ulcerative colitis that he must not have it. Also he underwent another colonoscopy in July which still showed bleeding and inflammation throughout his GI tract and he had coffee ground blood in his stomach that was coming up from the small intestinal tract. The GI doctor has decided to stop treating him for crohn's and is weaning him off the medications and the Gtube feeds. I asked if the negative testing could have anything to do with his immune deficiency and he said no. He is again losing weight. Where can I go to print off this material you found that says it is unreliable in immune deficient conditions so I can print it off and show it to him. Thanks for sharing, Patty Prometheus testing Ursula and and others, This is from the Prometheus website and something to consider with CVID patients - part of the testing is based on specific IgG and IgA antibodies, which may or may not be present in CVID patients. We were going to run this test but both GIs we've seen said that it wouldn't be reliable. You might want to bring this info to your respective doctors before going through with this expensive test. PROMETHEUSR IBD Serology 7 is the most comprehensive inflammatory bowel disease (IBD) test available. Utilizing several proprietary and patented markers and incorporating sophisticated pattern recognition technology, results may help physicians diagnose IBD and differentiate between ulcerative colitis (UC) and Crohn's disease (CD). Knowledge of serologic markers may help determine more severe disease phenotypes, and help predict disease behavior. .. A quantitative analysis of bio-markers combined with the Smart Diagnostic Algorithmb (pattern-recognitio n technology) for IBD prediction and differentiation .. PROMETHEUS IBD Serology 7 is only offered at Prometheus .. Specimen Requirements - Serum, 2.0 mL: SST or Red Top Tube .. Shipping and Handling - Ambient or refrigerated .. Storage Conditions/Stabilit y - 7 days ambient; 14 days refrigerated .. Turn Around Time - 3 to 4 days .. Reference Range: NOTE: Patient test results are based on the Smart Diagnostic Algorithm. Assay and reference values are provided for prognostic interpretation. ASCA IgA ELISA: <20.0 EU/mL ASCA IgG ELISA: <40.0 EU/mL Anti-OmpCa IgA ELISA: <16.5 EU/mL Anti-CBir1a ELISA: <21.0 EU/mL AutoAntibody ELISA: <12.1 EU/mL IFA Perinuclear Pattern: Not Detected DNAse Sensitivitya: Not Detected Hope this helps! Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy Carmel, IN www.caringbridge. org/visit/ mhobbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 I don't know that it's accurate or inaccurate. I'm seeking opinions here at our Major medical center (Emory University) and the consensus is that the test itself in immunecompetent or immune deficient patients has its problems. so we ran the test but also ran a Sed rate, CRP, albumin and platelet count. those along with the colonoscopy could have the indicators we need. Ursula @...: mother5590@...: Thu, 13 Nov 2008 08:55:23 -0800Subject: Re: Prometheus testing I think we have to realize that any of these tests are inaccurate also the ELISA Allergy testing. Since these kids do not build anitbodies in other areas of there immune systems what is to say that they can in these tests. I would find another GI doc to look at your son at a major medical center.BARBIE ________________________________From: Patty Lapinski <plapinski@...>To: @...: Thursday, November 13, 2008 10:27:15 AMSubject: Re: Prometheus testing,I don't post often at all but your post this morning really caught my eye.I have a son with CVID and polysaccharide antibody deficiency. In 2005 he underwent a colonoscopy due to a rapid 15 pound weight loss and bloody stools and was given a diagnosis of crohn's disease at the time. He is currently Gtube fed and on a whole bunch of medications for the crohns.Recently his GI doctor has got it into his head that because the Prometheus testing on him comes back negative for crohn's and ulcerative colitis that he must not have it. Also he underwent another colonoscopy in July which still showed bleeding and inflammation throughout his GI tract and he had coffee ground blood in his stomach that was coming up from the small intestinal tract.The GI doctor has decided to stop treating him for crohn's and is weaning him off the medications and the Gtube feeds. I asked if the negative testing could have anything to do with his immune deficiency and he said no. He is again losing weight.Where can I go to print off this material you found that says it is unreliable in immune deficient conditions so I can print it off and show it to him.Thanks for sharing,Patty Prometheus testingUrsula and and others,This is from the Prometheus website and something to consider with CVIDpatients - part of the testing is based on specific IgG and IgA antibodies,which may or may not be present in CVID patients. We were going to run thistest but both GIs we've seen said that it wouldn't be reliable. You mightwant to bring this info to your respective doctors before going through withthis expensive test.PROMETHEUSR IBD Serology 7 is the most comprehensive inflammatory boweldisease (IBD) test available. Utilizing several proprietary and patentedmarkers and incorporating sophisticated pattern recognition technology,results may help physicians diagnose IBD and differentiate betweenulcerative colitis (UC) and Crohn's disease (CD). Knowledge of serologicmarkers may help determine more severe disease phenotypes, and help predictdisease behavior. . A quantitative analysis of bio-markers combined with the Smart DiagnosticAlgorithmb (pattern-recognitio n technology) for IBD prediction anddifferentiation . PROMETHEUS IBD Serology 7 is only offered at Prometheus . Specimen Requirements - Serum, 2.0 mL: SST or Red Top Tube . Shipping and Handling - Ambient or refrigerated . Storage Conditions/Stabilit y - 7 days ambient; 14 days refrigerated . Turn Around Time - 3 to 4 days . Reference Range: NOTE: Patient test results are based on the SmartDiagnostic Algorithm. Assay and reference values are provided for prognosticinterpretation. ASCA IgA ELISA: <20.0 EU/mL ASCA IgG ELISA: <40.0 EU/mL Anti-OmpCa IgA ELISA: <16.5 EU/mL Anti-CBir1a ELISA: <21.0 EU/mL AutoAntibody ELISA: <12.1 EU/mL IFA Perinuclear Pattern: Not Detected DNAse Sensitivitya: Not DetectedHope this helps!Mom to , 6 - GSD, CVID, central respiratory failureMeredith, 3 - GSD, CVID, central respiratory failure, 9 - healthyCarmel, INwww.caringbridge. org/visit/ mhobbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Ursula and Patty, I'm so sorry your children are suffering with GI problems and am thinking of you both. When my daughter was given the Prometheus (sp?) tests in 2004, we were also told not to take them too seriously because of the CVID. Our GI doc (#3) suggested a series of biopsies if she continued with GI issues. (Incidentally, when GI doc #1 didn't find WBCs in her bloody stool and pronounced her " fine " the immuno shot back with: " you can't draw that conclusion if she is not producing enough WBCs " . Our kids are just so difficult to diagnose -- and common sense becomes so crucial.) Please keep us posted. mom to CVIDer, 7 ________________________________ From: Patty Lapinski <plapinski@...> Sent: Thursday, November 13, 2008 8:27:15 AM Subject: Re: Prometheus testing , I don't post often at all but your post this morning really caught my eye. I have a son with CVID and polysaccharide antibody deficiency. In 2005 he underwent a colonoscopy due to a rapid 15 pound weight loss and bloody stools and was given a diagnosis of crohn's disease at the time. He is currently Gtube fed and on a whole bunch of medications for the crohns. Recently his GI doctor has got it into his head that because the Prometheus testing on him comes back negative for crohn's and ulcerative colitis that he must not have it. Also he underwent another colonoscopy in July which still showed bleeding and inflammation throughout his GI tract and he had coffee ground blood in his stomach that was coming up from the small intestinal tract. The GI doctor has decided to stop treating him for crohn's and is weaning him off the medications and the Gtube feeds. I asked if the negative testing could have anything to do with his immune deficiency and he said no. He is again losing weight. Where can I go to print off this material you found that says it is unreliable in immune deficient conditions so I can print it off and show it to him. Thanks for sharing, Patty Prometheus testing Ursula and and others, This is from the Prometheus website and something to consider with CVID patients - part of the testing is based on specific IgG and IgA antibodies, which may or may not be present in CVID patients. We were going to run this test but both GIs we've seen said that it wouldn't be reliable. You might want to bring this info to your respective doctors before going through with this expensive test. PROMETHEUSR IBD Serology 7 is the most comprehensive inflammatory bowel disease (IBD) test available. Utilizing several proprietary and patented markers and incorporating sophisticated pattern recognition technology, results may help physicians diagnose IBD and differentiate between ulcerative colitis (UC) and Crohn's disease (CD). Knowledge of serologic markers may help determine more severe disease phenotypes, and help predict disease behavior. .. A quantitative analysis of bio-markers combined with the Smart Diagnostic Algorithmb (pattern-recognitio n technology) for IBD prediction and differentiation .. PROMETHEUS IBD Serology 7 is only offered at Prometheus .. Specimen Requirements - Serum, 2.0 mL: SST or Red Top Tube .. Shipping and Handling - Ambient or refrigerated .. Storage Conditions/Stabilit y - 7 days ambient; 14 days refrigerated .. Turn Around Time - 3 to 4 days .. Reference Range: NOTE: Patient test results are based on the Smart Diagnostic Algorithm. Assay and reference values are provided for prognostic interpretation. ASCA IgA ELISA: <20.0 EU/mL ASCA IgG ELISA: <40.0 EU/mL Anti-OmpCa IgA ELISA: <16.5 EU/mL Anti-CBir1a ELISA: <21.0 EU/mL AutoAntibody ELISA: <12.1 EU/mL IFA Perinuclear Pattern: Not Detected DNAse Sensitivitya: Not Detected Hope this helps! Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy Carmel, IN www.caringbridge. org/visit/ mhobbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 http://www.prometheuslabs.com/Resources/Serology/IBD_Serology7_ProductDetail ..pdf It doesn't say it isn't accurate for CVID patients. What is says is that it's looking for some IgG and IgA antibody levels. Well, if you have problems producing IgG and/or IgA, then a negative test can't be deemed reliable. On the flip side, there was some concern that a positive test could be a false positive in someone getting IgG replacement (IVIG or subQ). I think what Ursula posted as their plan for Macey is what we did for diagnostic purposes - sed rate, CRP, biopsy results. Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy From: [mailto: ] On Behalf Of Patty Lapinski Sent: Thursday, November 13, 2008 11:27 AM Subject: Re: Prometheus testing , I don't post often at all but your post this morning really caught my eye. I have a son with CVID and polysaccharide antibody deficiency. In 2005 he underwent a colonoscopy due to a rapid 15 pound weight loss and bloody stools and was given a diagnosis of crohn's disease at the time. He is currently Gtube fed and on a whole bunch of medications for the crohns. Recently his GI doctor has got it into his head that because the Prometheus testing on him comes back negative for crohn's and ulcerative colitis that he must not have it. Also he underwent another colonoscopy in July which still showed bleeding and inflammation throughout his GI tract and he had coffee ground blood in his stomach that was coming up from the small intestinal tract. The GI doctor has decided to stop treating him for crohn's and is weaning him off the medications and the Gtube feeds. I asked if the negative testing could have anything to do with his immune deficiency and he said no. He is again losing weight. Where can I go to print off this material you found that says it is unreliable in immune deficient conditions so I can print it off and show it to him. Thanks for sharing, Patty Prometheus testing Ursula and and others, This is from the Prometheus website and something to consider with CVID patients - part of the testing is based on specific IgG and IgA antibodies, which may or may not be present in CVID patients. We were going to run this test but both GIs we've seen said that it wouldn't be reliable. You might want to bring this info to your respective doctors before going through with this expensive test. PROMETHEUSR IBD Serology 7 is the most comprehensive inflammatory bowel disease (IBD) test available. Utilizing several proprietary and patented markers and incorporating sophisticated pattern recognition technology, results may help physicians diagnose IBD and differentiate between ulcerative colitis (UC) and Crohn's disease (CD). Knowledge of serologic markers may help determine more severe disease phenotypes, and help predict disease behavior. .. A quantitative analysis of bio-markers combined with the Smart Diagnostic Algorithmb (pattern-recognition technology) for IBD prediction and differentiation .. PROMETHEUS IBD Serology 7 is only offered at Prometheus .. Specimen Requirements - Serum, 2.0 mL: SST or Red Top Tube .. Shipping and Handling - Ambient or refrigerated .. Storage Conditions/Stability - 7 days ambient; 14 days refrigerated .. Turn Around Time - 3 to 4 days .. Reference Range: NOTE: Patient test results are based on the Smart Diagnostic Algorithm. Assay and reference values are provided for prognostic interpretation. ASCA IgA ELISA: <20.0 EU/mL ASCA IgG ELISA: <40.0 EU/mL Anti-OmpCa IgA ELISA: <16.5 EU/mL Anti-CBir1a ELISA: <21.0 EU/mL AutoAntibody ELISA: <12.1 EU/mL IFA Perinuclear Pattern: Not Detected DNAse Sensitivitya: Not Detected Hope this helps! Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy Carmel, IN www.caringbridge.org/visit/mhobbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 I don't think this link worked. Go to www.prometheuslabs.com, scroll over " products and services " , go down to " diagnostics " , then click on " IBD serology " . Then look down about halfway for " IBD Serology 7 product detail " and click that to get the page I sent. ~ From: [mailto: ] On Behalf Of Hobbs Sent: Thursday, November 13, 2008 3:34 PM Subject: RE: Prometheus testing http://www.prometheuslabs.com/Resources/Serology/IBD_Serology7_ProductDetail ..pdf It doesn't say it isn't accurate for CVID patients. What is says is that it's looking for some IgG and IgA antibody levels. Well, if you have problems producing IgG and/or IgA, then a negative test can't be deemed reliable. On the flip side, there was some concern that a positive test could be a false positive in someone getting IgG replacement (IVIG or subQ). I think what Ursula posted as their plan for Macey is what we did for diagnostic purposes - sed rate, CRP, biopsy results. Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Patty Lapinski Sent: Thursday, November 13, 2008 11:27 AM <mailto:%40> Subject: Re: Prometheus testing , I don't post often at all but your post this morning really caught my eye. I have a son with CVID and polysaccharide antibody deficiency. In 2005 he underwent a colonoscopy due to a rapid 15 pound weight loss and bloody stools and was given a diagnosis of crohn's disease at the time. He is currently Gtube fed and on a whole bunch of medications for the crohns. Recently his GI doctor has got it into his head that because the Prometheus testing on him comes back negative for crohn's and ulcerative colitis that he must not have it. Also he underwent another colonoscopy in July which still showed bleeding and inflammation throughout his GI tract and he had coffee ground blood in his stomach that was coming up from the small intestinal tract. The GI doctor has decided to stop treating him for crohn's and is weaning him off the medications and the Gtube feeds. I asked if the negative testing could have anything to do with his immune deficiency and he said no. He is again losing weight. Where can I go to print off this material you found that says it is unreliable in immune deficient conditions so I can print it off and show it to him. Thanks for sharing, Patty Prometheus testing Ursula and and others, This is from the Prometheus website and something to consider with CVID patients - part of the testing is based on specific IgG and IgA antibodies, which may or may not be present in CVID patients. We were going to run this test but both GIs we've seen said that it wouldn't be reliable. You might want to bring this info to your respective doctors before going through with this expensive test. PROMETHEUSR IBD Serology 7 is the most comprehensive inflammatory bowel disease (IBD) test available. Utilizing several proprietary and patented markers and incorporating sophisticated pattern recognition technology, results may help physicians diagnose IBD and differentiate between ulcerative colitis (UC) and Crohn's disease (CD). Knowledge of serologic markers may help determine more severe disease phenotypes, and help predict disease behavior. .. A quantitative analysis of bio-markers combined with the Smart Diagnostic Algorithmb (pattern-recognition technology) for IBD prediction and differentiation .. PROMETHEUS IBD Serology 7 is only offered at Prometheus .. Specimen Requirements - Serum, 2.0 mL: SST or Red Top Tube .. Shipping and Handling - Ambient or refrigerated .. Storage Conditions/Stability - 7 days ambient; 14 days refrigerated .. Turn Around Time - 3 to 4 days .. Reference Range: NOTE: Patient test results are based on the Smart Diagnostic Algorithm. Assay and reference values are provided for prognostic interpretation. ASCA IgA ELISA: <20.0 EU/mL ASCA IgG ELISA: <40.0 EU/mL Anti-OmpCa IgA ELISA: <16.5 EU/mL Anti-CBir1a ELISA: <21.0 EU/mL AutoAntibody ELISA: <12.1 EU/mL IFA Perinuclear Pattern: Not Detected DNAse Sensitivitya: Not Detected Hope this helps! Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy Carmel, IN www.caringbridge.org/visit/mhobbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 That makes sense, . I suppose interpretation of the test depends on the type of deficits within CVID or any other diagnosis. We're thinking of Macey and sending prayers. ________________________________ From: Hobbs <hobbsfamily@...> Sent: Thursday, November 13, 2008 12:34:17 PM Subject: RE: Prometheus testing http://www.promethe uslabs.com/ Resources/ Serology/ IBD_Serology7_ ProductDetail ..pdf It doesn't say it isn't accurate for CVID patients. What is says is that it's looking for some IgG and IgA antibody levels. Well, if you have problems producing IgG and/or IgA, then a negative test can't be deemed reliable. On the flip side, there was some concern that a positive test could be a false positive in someone getting IgG replacement (IVIG or subQ). I think what Ursula posted as their plan for Macey is what we did for diagnostic purposes - sed rate, CRP, biopsy results. Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Patty Lapinski Sent: Thursday, November 13, 2008 11:27 AM groups (DOT) com Subject: Re: Prometheus testing , I don't post often at all but your post this morning really caught my eye. I have a son with CVID and polysaccharide antibody deficiency. In 2005 he underwent a colonoscopy due to a rapid 15 pound weight loss and bloody stools and was given a diagnosis of crohn's disease at the time. He is currently Gtube fed and on a whole bunch of medications for the crohns. Recently his GI doctor has got it into his head that because the Prometheus testing on him comes back negative for crohn's and ulcerative colitis that he must not have it. Also he underwent another colonoscopy in July which still showed bleeding and inflammation throughout his GI tract and he had coffee ground blood in his stomach that was coming up from the small intestinal tract. The GI doctor has decided to stop treating him for crohn's and is weaning him off the medications and the Gtube feeds. I asked if the negative testing could have anything to do with his immune deficiency and he said no. He is again losing weight. Where can I go to print off this material you found that says it is unreliable in immune deficient conditions so I can print it off and show it to him. Thanks for sharing, Patty Prometheus testing Ursula and and others, This is from the Prometheus website and something to consider with CVID patients - part of the testing is based on specific IgG and IgA antibodies, which may or may not be present in CVID patients. We were going to run this test but both GIs we've seen said that it wouldn't be reliable. You might want to bring this info to your respective doctors before going through with this expensive test. PROMETHEUSR IBD Serology 7 is the most comprehensive inflammatory bowel disease (IBD) test available. Utilizing several proprietary and patented markers and incorporating sophisticated pattern recognition technology, results may help physicians diagnose IBD and differentiate between ulcerative colitis (UC) and Crohn's disease (CD). Knowledge of serologic markers may help determine more severe disease phenotypes, and help predict disease behavior. .. A quantitative analysis of bio-markers combined with the Smart Diagnostic Algorithmb (pattern-recognitio n technology) for IBD prediction and differentiation .. PROMETHEUS IBD Serology 7 is only offered at Prometheus .. Specimen Requirements - Serum, 2.0 mL: SST or Red Top Tube .. Shipping and Handling - Ambient or refrigerated .. Storage Conditions/Stabilit y - 7 days ambient; 14 days refrigerated .. Turn Around Time - 3 to 4 days .. Reference Range: NOTE: Patient test results are based on the Smart Diagnostic Algorithm. Assay and reference values are provided for prognostic interpretation. ASCA IgA ELISA: <20.0 EU/mL ASCA IgG ELISA: <40.0 EU/mL Anti-OmpCa IgA ELISA: <16.5 EU/mL Anti-CBir1a ELISA: <21.0 EU/mL AutoAntibody ELISA: <12.1 EU/mL IFA Perinuclear Pattern: Not Detected DNAse Sensitivitya: Not Detected Hope this helps! Mom to , 6 - GSD, CVID, central respiratory failure Meredith, 3 - GSD, CVID, central respiratory failure , 9 - healthy Carmel, IN www.caringbridge. org/visit/ mhobbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Well she started out this morning not being able to use the bathroom. They put a catheter in and left it for 8 hours. Took it out at 2pm and she was finally able to go herself at around 3 pm. They came by a minute ago to draw the new lab work. and now we're waiting for our discharge Lortab and to get the IV out. Follow up will be in 2 weeks. Ursula Quote Link to comment Share on other sites More sharing options...
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