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Medical Forum / Diseases and Disorders / Sinusitis / August 2007gamma-globulin therapy
short story : ten years , 60-80 infections. three surgeries ( done correctly, CTs show open) every possible home rememdy ever noted on this site or others, I was two years aheadof curve on and tried. immunological tests....normal per se. pushed for sub class tests. IgG 1, and 3 just barely under normal -------enough for Doc to order therapy. HMO says fine. 8 months now of monthly " gammunex" 250ml, one sinus infection that required Rx. couple minor that system fought off with my rinsing , etc. no brainer. the gamma-globulin therapy works --remarkably so. many ( most) docs would not have allowed it. I got lucky. Treat the patients , not the lab tests. > short story : ten years , 60-80 infections. > three surgeries ( done correctly, CTs show open) [quoted text clipped - 8 lines] > ( most) docs would not have allowed it. I got lucky. Treat the > patients , not the lab tests. I have a doctor willing to try gamma G on me too, but my health insurance won't pay for it. And here in Boston, IV gamma G treatments are so damned expensive that I simply cannot afford them out of pocket. If I could afford them out of pocket, I would be sufficiently wealthy that I could retire to a nice seacoast community anyway.  SignatureSteven L. Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. I have IgG subclass deficiencies as well: but my allergist didn't feel the gamma globulin was needed. For me, as I continually repeat, low dose macrolides made a difference. When do you stop the gamma globulin shots/infusions?? The IgG subclass deficiency is permanent. Judy > > short story : ten years , 60-80 infections. > > three surgeries ( done correctly, CTs show open) [quoted text clipped - 15 lines] > Email: sdlit...@earthlinkNOSPAM.net > Remove the NOSPAM before replying to me. > I have IgG subclass deficiencies as well: but my allergist didn't feel > the gamma globulin was needed. For me, as I continually repeat, low > dose macrolides made a difference. > > When do you stop the gamma globulin shots/infusions?? When you're no longer interested in staying healthy. SignatureSteven L. Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Steven, I looked up the treatment, and I actually had a physician thorough enough to test my response to pneumoccocal vaccine--poor, but didn't feel gamma globulin was needed. Since the treatment is expensive, and the deficiency can vary over time, gamma globulin is appropriate for some people, but is expensive to maintain over many years. Here's a reference from a national immunodeficiency website: http://www.info4pi.org/patienttopatient/index.cfm?section=patienttopatient&conte nt=syndromes&area=8 Look: I don't want to be ill either, and I work around ill people all the time. I just trusted my allergist, and have managed to avoid the gammaglobulin therapy at this point--but have lots of documentation that I would "deserve" it. If this treatment is medically indicated, your insurance should pay for it, and the expense shouldn't vary geographically ( i.e.:being in Boston area.) I used to work in insurance: and the denial process is subject to appeals, it you feel you are being unfairly denied coverage for a necessary illness, you should appeal it. Judy > > I have IgG subclass deficiencies as well: but my allergist didn't feel > > the gamma globulin was needed. For me, as I continually repeat, low [quoted text clipped - 8 lines] > Email: sdlit...@earthlinkNOSPAM.net > Remove the NOSPAM before replying to me. To beat the subject to death here:here's a good eMedicine article on IgG deficiencies: my allergist had sent a patient to Boston (the mecca, you know) with a similar deficiency, and was told to use low dose macrolides. This recommendation is also in the article, so we decided to go that route. Here's the article. We give prevnar to little kids: conjugated pneumonia vaccine, and Hib: conjugated h. flu vaccine, I wonder about getting it. I plan on getting Adacel soon--as viral season approaches. I've gotten the pneumovax times two, and have reduced protective antibody: also my antibody to Hepatitis B has disappeared, despite two courses of the vaccine. I would qualiy for immune globuin, but I'll hold on that for now. Judy here's the article http://www.emedicine.com/med/topic1161.htm > Steven, I looked up the treatment, and I actually had a physician > thorough enough to test my response to pneumoccocal vaccine--poor, but [quoted text clipped - 28 lines] > > Email: sdlit...@earthlinkNOSPAM.net > > Remove the NOSPAM before replying to me. > To beat the subject to death here:here's a good eMedicine article on > IgG deficiencies: my allergist had sent a patient to Boston (the > mecca, you know) with a similar deficiency, and was told to use low > dose macrolides. Not me. The chance of increasing antibiotic resistance is just too high. I can't afford to take a chance on ruining any more antibiotics, since I already have ruined so many others. As for immunological workups, mine wasn't great but it didn't indicate an actual functional antibody deficiency or variable immunodeficiency. Some physicians are willing to try gamma G anyway, just like I was lucky enough to find an ENT to operate on me despite my negative CT scan (and it turned out the negative CT scan was a false negative). -- Steven L. > Steven, I looked up the treatment, and I actually had a physician > thorough enough to test my response to pneumoccocal vaccine--poor, but [quoted text clipped - 9 lines] > that I would "deserve" it. If this treatment is medically indicated, > your insurance should pay for it, For a man like myself past the age of 50, routine colonoscopy screening and routine prostate exams are "medically indicated," yet my health insurance won't pay for those either. I have to pay for my colonoscopy out of pocket. If I appealed all these decisions, I would be spending a lot of my time doing appeals. That's the price I pay for having an el cheapo insurance policy (I can't afford higher premiums right now). SignatureSteven L. Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Q. I'm 72 years old. When can I stop wearing condoms??? A. When you stop having sex. >For a man like myself past the age of 50, routine colonoscopy screening and routine prostate exams are "medically indicated," yet my health insurance won't pay for those either. I have to pay for my colonoscopy out of pocket. > >If I appealed all these decisions, I would be spending a lot of my time doing appeals. That's the price I pay for having an el cheapo insurance policy (I can't afford higher premiums right now). You're all just going to have to take it for granted that I'm spending an inordinate amount of energy trying NOT to go political on this newsgroup. It never solves anything ... I think (?). Steven ... I feel your pain. Your post is challenging my ability to hold back ... just ... that ... much ... more.... ;-) I'm not going to rant either, but if feels almost illegal not to cover medically necessary services. And Bush is threatiening to veto the increased funding for the SCHIP program,because it's the first step toward national healthcare.... Judy (who also pays her own premiums....) > On Sun, 12 Aug 2007 16:09:45 GMT, sdlit...@earthlinkNOSPAM.net (Steven > [quoted text clipped - 11 lines] > Your post is challenging my ability to hold back ... just ... that ... > much ... more.... ;-) > I have IgG subclass deficiencies as well: but my allergist didn't feel > the gamma globulin was needed. For me, as I continually repeat, low [quoted text clipped - 26 lines] > > - Show quoted text - Judy, Steven : my immunologist is also my allergist; no one believes on paper I qualify for this. my IgG subclasses are within a point or two of normal. however, I pused after years of sick....the doc is older and laid back. usually the older ones are set in their ways. this one seemed willing to give it a go. immediately after the treatments began, I was better . I still can get sinusitus, but it is milder and my body kicks it after a few days. never before could it. any doc who will write down " CVID" can get you infusions . Common Variable Immune Disorder. Do I really have it ? No. Not be strict definition. No way. But, there is so much gray in medicine. My body lost the capacity to fight sinus infections. Even with antibiotics. Even with low dose macrolides . Notably , subclass IgGs 1 and 3 relate to respiratory .....The year before I began this was the worst year I ever had with sinus infections. I literally was researching if I could get disability ...and that is NOT the real me. Thanks for the reminder of the fact that IgG subclasses are treatable: I've held off because (knock on wood) I don't need it right now, but there very well may come a day. My allergist is older, and semi- retired, and in retrospect, he did the workup when I was miserably sick from the flu and had had a run of constant sinusitis. The fact that he did the subclasses and checked me for serology to pneumovax is exactly what you need to do. I'll keep the gammglobulin in mind, if needed. It also goes to show that even a couple of points on paper can mean a huge difference in a life. Around here, I know which lab performs the most reliable immoglobulins: the one done in our local hospital, the send-outs. which are the cheaper labs that contract with United are less reliable... My daughter has IgA deficiency, and she was diagnosed at Newton- Wellsely in Boston, and I repeated it locally when she had her celiac work up. Different norms, same result. I actually think we come kind of close to combined variable immune deficiency. I'm glad you're better. I can relate to the sinusitis/disablity feeling and thinking. There have been studies that show that chronic sinusitis produces a worse quality of life than congestive heart failure. Judy > > I have IgG subclass deficiencies as well: but my allergist didn't feel > > the gamma globulin was needed. For me, as I continually repeat, low [quoted text clipped - 42 lines] > ever had with sinus infections. I literally was researching if I could > get disability ...and that is NOT the real me. > Thanks for the reminder of the fact that IgG subclasses are treatable: > I've held off because (knock on wood) I don't need it right now, but [quoted text clipped - 66 lines] > > ever had with sinus infections. I literally was researching if I could > > get disability ...and that is NOT the real me. i don't really understand most of this thread (i'll try again when the cobwebs clear from my neurons), but that last comment was pretty clear. btw, the nytimes just did an op/ed on med insurance that's worth a read regardles of one's political stance. ellen Ellen, there's a national site for primary immunodeficiencies, founded by the parents of a child who died of undiagnosed primary immunodeficiency. About two years ago they mailed out posters to all physicians alerting them to the subject, and the part about repeated sinus infections caught my eye. I listed it in my earlier post: http://www.info4pi.org/ I've appreciated their information and advocacy. Judy > > Thanks for the reminder of the fact that IgG subclasses are treatable: > > I've held off because (knock on wood) I don't need it right now, but [quoted text clipped - 73 lines] > > ellen Ellen, any link to the NY times article? When Steven commented about health insurance, I thought, at least he lives in Massachusetts where it's state mandated that all residents get coverage, even if it's bare bones. Recently a fabric company in Fall River MA went bankrupt abruptly, and the Mass residents who lost their jobs were hooked up with healthcare insurance, the Rhode Island residents are flat out of luck.... Judy > Ellen, there's a national site for primary immunodeficiencies, founded > by the parents of a child who died of undiagnosed primary [quoted text clipped - 81 lines] > > > ellen
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