Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Can anyone recommend a good lab to test for IgG status? Mine was tested in '96, and if I remember correctly, I was very low in IgG, either subclass 1 and 3 or 3 and 4, and almost no IgA. My IgM was fine, in total and subclass. The doctor just associated then with allergies, and the test has never been repeated since. Is this something that should be repeated or at least let another doc look at the results? If so, who? Donna in NC low total IgG > Dear Nelly, > > You wrote, " My results are particularly low IgGs=5.5 g/l > (norm 8 to 15). " So you might have one of the 60 or so primary immune deficiency diseases. (AIDS is one of the worst ones.) > > If I remember correctly, an immunologist told us that people with low IgG (total) can be helped by gamma globulin injections. People with low or absent IgA cannot be helped. So maybe it's better that you have low IgG. > > He talked to us more about Selective IgA Deficiency. He said that no one knows for sure why some people don't have IgA . " The B cells are supposed to make the IgG, and they do; they are supposed to make IgM, and they do; they are supposed to make IgA, and they don't. " He said that the B cells are not working right either because of a genetic defect or injury. > > Sue B. > upstate NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Thanks Sue, Would you happen to know what is called a " primary " immune deficiency disease? I will follow the path you're advising me to follow, but if you happen to know what might be causing it. Nelly low total IgG > Dear Nelly, > > You wrote, " My results are particularly low IgGs=5.5 g/l > (norm 8 to 15). " So you might have one of the 60 or so primary immune > deficiency diseases. (AIDS is one of the worst ones.) > > If I remember correctly, an immunologist told us that people with low IgG > (total) can be helped by gamma globulin injections. People with low or > absent IgA cannot be helped. So maybe it's better that you have low IgG. > > He talked to us more about Selective IgA Deficiency. He said that no one > knows for sure why some people don't have IgA . " The B cells are supposed > to make the IgG, and they do; they are supposed to make IgM, and they do; > they are supposed to make IgA, and they don't. " He said that the B cells are > not working right either because of a genetic defect or injury. > > There is a good group with lots of information on their website. It's called > the Immune Deficiency Foundation, and is headquartered in Towson, land. > If you join--I don't think it costs money--they might include you in their > registry, and ask you to complete their very secure, very well done online > research questionnaire. They have big conferences once a year or so. > > Sue B. > upstate NY > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 PS: I just had a quick look at the website of the Immune Deficiency Foundation and they say these conditions are inherited. Now, I was tested a few times (at least once in 92 all OK and again in 99 only IgGs but all OK albeit on the low side) so it is something which is happening not something I have always had and to which I could have attributed my health problems. And also my husband also has a deficiency in IgGs (not quite as bad as mine but well below normal) his IgMs are borderline low. We both have normal IgAs. I would not consider taking Gamma Globulin lightly because of not trusting the safety of blood products much. What I would like to know is what might be causing it. We have both been on long term abx for Lyme and other infections, I wonder if there is a link btwn abx and these very low immunoglobulins. Nelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 I think it's the IG deficiency that allows for chronic infections to prevail, not the other way around. Fix that and the infections should go away. Just my 2 cents. The GG now available has gone through so much cleansing, there is no risk of contamination anymore. >From: " Nelly Pointis " <janel@...> >Reply- >< > >Subject: Re: low total IgG >Date: Wed, 5 Feb 2003 19:39:21 +0100 > >PS: I just had a quick look at the website of the Immune Deficiency >Foundation and they say these conditions are inherited. Now, I was tested a >few times (at least once in 92 all OK and again in 99 only IgGs but all OK >albeit on the low side) so it is something which is happening not something >I have always had and to which I could have attributed my health problems. >And also my husband also has a deficiency in IgGs (not quite as bad as mine >but well below normal) his IgMs are borderline low. We both have normal >IgAs. >I would not consider taking Gamma Globulin lightly because of not trusting >the safety of blood products much. What I would like to know is what might >be causing it. >We have both been on long term abx for Lyme and other infections, I wonder >if there is a link btwn abx and these very low immunoglobulins. >Nelly > _________________________________________________________________ Add photos to your messages with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 I had already been very sick for years when I first had my IGs tested and they were normal, in 92 and then again in 99, so I don't think we can say that in my case the IG deficiency caused my infections, can we? Nelly Re: low total IgG > >Date: Wed, 5 Feb 2003 19:39:21 +0100 > > > >PS: I just had a quick look at the website of the Immune Deficiency > >Foundation and they say these conditions are inherited. Now, I was tested a > >few times (at least once in 92 all OK and again in 99 only IgGs but all OK > >albeit on the low side) so it is something which is happening not something > >I have always had and to which I could have attributed my health problems. > >And also my husband also has a deficiency in IgGs (not quite as bad as mine > >but well below normal) his IgMs are borderline low. We both have normal > >IgAs. > >I would not consider taking Gamma Globulin lightly because of not trusting > >the safety of blood products much. What I would like to know is what might > >be causing it. > >We have both been on long term abx for Lyme and other infections, I wonder > >if there is a link btwn abx and these very low immunoglobulins. > >Nelly > > > > > _________________________________________________________________ > Add photos to your messages with MSN 8. Get 2 months FREE*. > http://join.msn.com/?page=features/featuredemail > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Nelly, I guess you know that 'primary IgG deficiency " means nothing more than that the deficiency is as you say inherited, while secondary means that there is another cause. It is certain that tricky infections like Lyme (and all those infections which have stealth aspects and manage to evade and modulate our immune systems - HIV being the obvious example) are capable of affecting IgG (and other) levels and cell activities. American Society of Clinical Oncolgy site says ... http://www.asco.org/ac/1,1003,_18-0019659-00_12-002393,00.asp?state=FL " Generally, the following disorders may result in abnormalities in at least one or more of the serum gammaglobulins: ? Liver dysfunctions, ? Acute or chronic infections, ? Severe malnutrition, ? Lymphoproliferative disorders, ? Myelomas (polyclonal or monoclonal), ? Autoimmune disorders/collagen disorders, ****? Lyme?s Disease,**** ? Waldenstrom?s macroglobulinemia, ? Tissue necrosis, ? Leukemia and other cancers,* and ? Immune deficiency disorders (congenital and/or acquired). ..... " I have never read about a link betw IgG deficiency and abx, but there are many examples of IgG deficiency being related to diseases, Lyme for one. n At 05:39 06/02/03, you wrote: >PS: I just had a quick look at the website of the Immune Deficiency >Foundation and they say these conditions are inherited. Now, I was tested a >few times (at least once in 92 all OK and again in 99 only IgGs but all OK >albeit on the low side) so it is something which is happening not something >I have always had and to which I could have attributed my health problems. >And also my husband also has a deficiency in IgGs (not quite as bad as mine >but well below normal) his IgMs are borderline low. We both have normal >IgAs. >I would not consider taking Gamma Globulin lightly because of not trusting >the safety of blood products much. What I would like to know is what might >be causing it. >We have both been on long term abx for Lyme and other infections, I wonder >if there is a link btwn abx and these very low immunoglobulins. >Nelly n Canberra, Australia Satellite maps of fire situation Canberra and Snowy Montains http://members.austarmetro.com.au/~julian/cbfires/fires.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Nelly and others, Here is a bit more on IgG deficiency and treatment. It seems people on abx are already doing the right thing. n http://lion.mnu.edu/~mhoward/immune/immune34.html >****Treatments of antibody deficiencies are antibiotics and antimicrobials >as necessary****. NO bone marrow treatment here-- run into Graft vs host >problems. ****You also treat with IgG (IV gamma globulin). With the half >life of igG being what it is, you can assume you need to treat these >patients every three to four weeks. It is not necessary to elevate them to >a normal Ig level. Typically, 30-40% of normal is sufficient****. You >would follow this up with an ELISA test. Which deficiency would you not >treat with IgG? You would not treat a deficiency in IgA with IgG. This is >because IgA deficient patients, having never made IgA, have not been >autotolerized to IgA. Therefore they don't see it as a self protein. They >would synthesize antibodies to IgA. IgG preparations are not exclusively >IgG, they also contain some IgA. So on repeated exposure, you can get >serum sickness and have an anaphylactoid reaction and go into shock. IgG >deficient patients don't have antibodies to IgG because they were >autotolerized to them by maternal IgG. Of course, B cell deficient >patients don't have antibodies to anything because they don't have any B >cells. So, generally, in patients with non-IgA antibody deficiency, >****IgG is a very successful treatment****. n Canberra, Australia Satellite maps of fire situation Canberra and Snowy Montains http://members.austarmetro.com.au/~julian/cbfires/fires.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 > I guess you know that 'primary IgG deficiency " means nothing more than that > the deficiency is as you say inherited, while secondary means that there is > another cause. n, yes, I thought that's what it meant but I have never really seriously looked into this (as I didn't realise we both had problems with IgG and IgM deficiency). We saw our Infectious Doctor today and the visit was as disappointing as I had expected it too be (!!). the treatments I see (actually mainly IV Gamma Globulins) seem to imply that these deficiencies can't right themselves, even if you get rid of the root cause (provided they are not the inherited type, of course). What I mean is, could one take IV gamma clobulin for a while and then as you resolve the root problem, could your IC numbers get back up to normal levels? Nelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 a)> >****Treatments of antibody deficiencies are antibiotics and antimicrobials > >as necessary****. >Typically, 30-40% of normal is sufficient****. n, is because of the use of a)? or is it that one can live quite well on 30-40% of normal? next question: what do you know about IgM deficiency? As I said my level is so low they didn't even measure it they just said below 0.25!!!! (N 0.60-3.50). >****IgG is a very successful treatment****. Our Infectious Diseases doctor didn't seem one bit interested in our deficiencies in IGs although he has been treating us for 4 years for Lyme and other infections and has on many ocasions remarked on how tough our cases seem to be. I asked him what his take was on these results (especially mine that are particularly low) and he said...........NOTHING!!!!!!!!!!!! So even if I decide through talking with you enlightened people who are experienced in GG treatment that we really need it, I don't know if I would be able to get it. But i guess that's another battle, for the time being I am trying to understand more about all this As i said before I am also concerned with the safety of blood products, shades of the scandal of HIV contaminated blood products here in France knowingly being sold to patients. Thanks for helping me. Nelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 It seems to me that everyone with CFS should be getting all their Ig's tested - IgA, IgD, IgG and subclasses, IgM. I ssay this bec it seems that anyone with CFS who tests these things finds a problem, and it might be useful. n At 03:44 06/02/03, you wrote: >Can anyone recommend a good lab to test for IgG status? Mine was tested in >'96, and if I remember correctly, I was very low in IgG, either subclass 1 >and 3 or 3 and 4, and almost no IgA. My IgM was fine, in total and subclass. >The doctor just associated then with allergies, and the test has never been >repeated since. Is this something that should be repeated or at least let >another doc look at the results? If so, who? >Donna in NC n Canberra, Australia Satellite maps of fire situation Canberra and Snowy Montains http://members.austarmetro.com.au/~julian/cbfires/fires.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Nelly, >a)> >****Treatments of antibody deficiencies are antibiotics and >antimicrobials > > >as necessary****. >>Typically, 30-40% of normal is sufficient****. > >n, >is because of the use of a)? or is it that one can live quite well on >30-40% of normal? - as I understand, this is a claim I've read with no reference to abx. >next question: what do you know about IgM deficiency? As I said my level is >so low they didn't even measure it they just said below 0.25!!!! (N >0.60-3.50). Like , " I know nothing " ...but Here's a quote that won't hearten you: http://allergy.mcg.edu/immuno/10870.html Selective IgM deficiency ************************* Clinical features · Very rare; not recognized by WHO in 1995 · Overwhelming infection with Gram negative organisms (H. influenzae, Neisseria), also pneumococcus · Increased incidence of autoimmune disorders Laboratory findings · Absent or very low IgM, normal IgG, IgA Selected references Guill MF, Brown DA, Ochs HD et al. IgM deficiency: clinical spectrum and immunologic assessment. Ann Allergy 1989;62:547-52 Kondo N, Ozawa T, Kato Y et al. Reduced secreted mu mRNA synthesis in selective IgM deficiency of Bloom's syndrome. Clin Exp Immunol 1992;88:35-40 Here's a discussion group comment or two in IgM deficiency: http://www.primaryimmune.org/wwwboard01/messages/5829.html You get 75 hits on Medline if you search " igm deficiency " There's a good set of lecture notes on immunity at http://lion.mnu.edu/~mhoward/immune/immune20.html etc, where you change the number 20 to get other pages. Page 33 is kind of relevant to what we are talking about . This statement is interesting " IgM Deficiency is very rare, but leads to a total lack of B cells. " from http://www.wsu.edu:8080/~m406/m406111797congid.html How are your B-cells? Maybe since IgM is for acute infections, you have a temporary lack? And this " 6. IgM deficiency - susceptible to blood born infections " in passing from http://winpro.windsor.edu/usmle_perls.htm And it seems from google that horses get IgM deficient more than people! Sorry, but I don't know anything about this topic, it seems to be rare. Congratulations. > >****IgG is a very successful treatment****. > >Our Infectious Diseases doctor didn't seem one bit interested in our >deficiencies in IGs although he has been treating us for 4 years for Lyme >and other infections and has on many ocasions remarked on how tough our >cases seem to be. I asked him what his take was on these results (especially >mine that are particularly low) and he said...........NOTHING!!!!!!!!!!!! So >even if I decide through talking with you enlightened people who are >experienced in GG treatment that we really need it, I don't know if I would >be able to get it. But i guess that's another battle, for the time being I >am trying to understand more about all this >As i said before I am also concerned with the safety of blood products, >shades of the scandal of HIV contaminated blood products here in France >knowingly being sold to patients. Personally as I've said before, the risks of this seem to be far outweighed by (what is for me) a buggered up life, so I take it. Your doctor is an idiot. I have a file on gamma globulin deficiency prepared for another purpose, but if you go to Medline you'll get around 700 citations under " IgG deficiency " . And they aren't there because IgG deficiency is symptomless!! A very short primer on Ig's is at http://www.principalhealthnews.com/topic/topic100587006 but not all agrees with other sources. From what I read, IgG deficiencies can mean nothing much, or bring your life to an end. It depends apparently on what the deficiency means in terms of its cause, and whether it is associated with other problems like IgA lack. (or IgM?) I was a bit incorrect earlier - Primary deficiency means " congenital " , not always necessarily inherited. Just what you needed, another area that needs research! (I am drowning at the moment with research for legal case and ... oh yes ... for treatment. I even went to a psychiatrist yesterday for legal purposes, he is a reasonable man and I may go to him to try .... CBT!) n n Canberra, Australia Satellite maps of fire situation Canberra and Snowy Montains http://members.austarmetro.com.au/~julian/cbfires/fires.htm Quote Link to comment Share on other sites More sharing options...
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