Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 My husband and I are a little confused about the antibody testing for EBV. Conner's tests showed " previous exposure to EBV " , which evidentally means that he has had Epstein Barr Virus at some time in his life. Well, my husband thought that the immunologist told us that EBV could explain Conner's recent CVID development and that if this were the case then Conner may recover. I didn't get this at all, so I thought I'd check here to see if anyone has ever heard of this. My husband is really hoping that we will find some magic bullet to " cure " Conner's immune deficiency, I don't think he's ready to accept a lifetime of this, maybe he just heard what he wanted to hear. My husband asked why else would the immuno have tested for this if there isn't anything that can be done about it. Anyone have any thoughts on this? Thanks in advance! Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and CVID), Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), Evan (10, mild hearing loss/unaided), and Kelsey - surviving triplet (8, hearing - but not listening!) _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hi, The words Epstein Barr Virus caught my attention. Before my son was diagnosed with CVID, he was sick with what we thought was mono cause by the EB virus. He had atypical B lymphocytes and his platlets and white cells were way off. The doctors couldn't make sense of it. We had him at Children's Hospital, and they told us he needed rest and he would get better. Well, 6 months later, he was still sick, and eventually he was diagnosed with the immune deficiency. I really questioned if this virus could have caused this because we have not history anywhere in our family of immune system disorders. Hunter is now 9 and doing well on IVIG. Sincerely, LIsa Temme -mom to Dylan-12 and Hunter-9 CVID Epstein Barr Virus? My husband and I are a little confused about the antibody testing for EBV Conner's tests showed " previous exposure to EBV " , which evidentally means that he has had Epstein Barr Virus at some time in his life. Well, my husband thought that the immunologist told us that EBV could explain Conner's recent CVID development and that if this were the case then Conner may recover. I didn't get this at all, so I thought I'd check here to see if anyone has ever heard of this. My husband is really hoping that we will find some magic bullet to " cure " Conner's immune deficiency, I don't think he's ready to accept a lifetime of this, maybe he just heard what he wanted to hear. My husband asked why else would the immuno have tested for this if there isn't anything that can be done about it. Anyone have any thoughts on this? Thanks in advance! Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and CVID), Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), Evan (10, mild hearing loss/unaided), and Kelsey - surviving triplet (8, hearing - but not listening!) _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Hi, The words Epstein Barr Virus caught my attention. Before my son was diagnosed with CVID, he was sick with what we thought was mono cause by the EB virus. He had atypical B lymphocytes and his platlets and white cells were way off. The doctors couldn't make sense of it. We had him at Children's Hospital, and they told us he needed rest and he would get better. Well, 6 months later, he was still sick, and eventually he was diagnosed with the immune deficiency. I really questioned if this virus could have caused this because we have not history anywhere in our family of immune system disorders. Hunter is now 9 and doing well on IVIG. Sincerely, LIsa Temme -mom to Dylan-12 and Hunter-9 CVID Epstein Barr Virus? My husband and I are a little confused about the antibody testing for EBV Conner's tests showed " previous exposure to EBV " , which evidentally means that he has had Epstein Barr Virus at some time in his life. Well, my husband thought that the immunologist told us that EBV could explain Conner's recent CVID development and that if this were the case then Conner may recover. I didn't get this at all, so I thought I'd check here to see if anyone has ever heard of this. My husband is really hoping that we will find some magic bullet to " cure " Conner's immune deficiency, I don't think he's ready to accept a lifetime of this, maybe he just heard what he wanted to hear. My husband asked why else would the immuno have tested for this if there isn't anything that can be done about it. Anyone have any thoughts on this? Thanks in advance! Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and CVID), Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), Evan (10, mild hearing loss/unaided), and Kelsey - surviving triplet (8, hearing - but not listening!) _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 from Dale, Mom to Katy, CVID, age 20 Katy's immunoligist told us this about Epstein Barr Virus -- that about half of her PID patients have it and the other half don't. It makes the PID much worse because of the fatigue. She feels that the PID comes first and because of the PID, they are susceptible to Epstein Barr. She felt certain the it was not the cart before the horse -- the Epstein Barr causing PID. Our pediatrician had a different theory. She said that since we could not isolate the Epstein Barr virus that what we were seeing had all the characteristics of Epstein Barr -- but was not. She feels that the Epstein Barr virus mimics an immune deficiency and what Katy had was the " real thing " -- not the immitation! In response to all the viruses and rashes and crud going around -- yes, our kids will have the worse case of anyone in your doctor's practice. Some doctors recommend anti-viral and anti-flu medications to lessen symptoms. That sounds wonderful, but Katy would have had to be on them round the clock her first few years of diagnosis, so we opted not to use them and still haven't tried any of them. The infections will not necessarily be the rare or profound cases -- just nastier and last longer. So hang on for a long winter that's starting early! About a year after Katy started IVIG, she stopped having piggy-back viruses. Now she has 2 or 3 per winter/spring and last longer than her peers, but they are not constant! In His service, Dale Temme wrote: >Hi, > >The words Epstein Barr Virus caught my attention. > Quote Link to comment Share on other sites More sharing options...
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