Guest guest Posted October 16, 2010 Report Share Posted October 16, 2010 Just published this summer - a cure for hyper IgE - at least if we have the right bad gene. This came out of Germany. http://www.ncbi.nlm.nih.gov/pubmed/20622910 Do a search on PubMed on Hyper IgE Syndrom - It looks like Boston also has had success with it. I gave the article to my Doctor - If I qualify for the treatment - I'll sure become someones research paper. It involves finding a bone marrow doner and accepting the fact that I will carry two sets of genes for the rest of my life - which is just fine with me. I don't know what the cost of this procedure is - but my shots are close to $6,000 per month. (3 shots every two weeks) Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 If I'm reading the abstract to the research article right, hyper-IgE syndrome is NOT the same as IgE-mediated allergies or allergic asthma. If you read the " ...is characterized by " section, that explains the symptoms of hyper-IgE syndrome. None of the symptoms listed related to (or that I know of cause) allergic asthma. There are many types of immunodeficiency. We have to be careful not to assume that all references to IgE are related to allergies (hypersensitivity response). It is also thought that IgE plays a role in the immune system's response to cancers (which may be what this study is relating to) and to parasites. Please let us know if your doctor thinks this has any bearing on allergic asthma. Addy Group co-owner > > Just published this summer - a cure for hyper IgE - at least if we have the > right bad gene. This came out of Germany. > > http://www.ncbi.nlm.nih.gov/pubmed/20622910 > > Do a search on PubMed on Hyper IgE Syndrom - It looks like Boston also has had > success with it. > > > I gave the article to my Doctor - If I qualify for the treatment - I'll sure > become someones research paper. It involves finding a bone marrow doner and > accepting the fact that I will carry two sets of genes for the rest of my life - > which is just fine with me. I don't know what the cost of this procedure is - > but my shots are close to $6,000 per month. (3 shots every two weeks) > > Anne > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Addie, I gave my pulmonary dr the article in Pub Med. She said she is sending me for a bunch of blood work including genetic testing to rule out this treatment. I have a number of the symptoms of Hyper IGE including frequent infections (just spent three months on 40 mg of Pred and 7 different antibiotics - and 10 days in the hospital on IV antibiotics because of a psudemonis infection). They took me off of Xolair when I was so sick and just started it back up last month - While in the hospital they checked my IgE again and I spiked up to 8,000 after being down as low as 3,000. After I get all this blood work done I will let you know about the results. I told her I was willing to become a research paper if necessary. I am so sick of being sick. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2010 Report Share Posted November 21, 2010 Please let us know what you find out. I hope you can find some relief! Addy > > Addie, I gave my pulmonary dr the article in Pub Med. She said she is sending > me for a bunch of blood work including genetic testing to rule out this > treatment. I have a number of the symptoms of Hyper IGE including frequent > infections (just spent three months on 40 mg of Pred and 7 different antibiotics > - and 10 days in the hospital on IV antibiotics because of a psudemonis > infection). They took me off of Xolair when I was so sick and just started it > back up last month - While in the hospital they checked my IgE again and I > spiked up to 8,000 after being down as low as 3,000. After I get all this blood > work done I will let you know about the results. I told her I was willing to > become a research paper if necessary. I am so sick of being sick. > Anne > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2010 Report Share Posted November 21, 2010 I, too, hope you can find some relief! From: pyle456 <jamcculloch2@...> Subject: [ ] Re: There may be a cure Date: Sunday, November 21, 2010, 6:21 AM Â Please let us know what you find out. I hope you can find some relief! Addy > > Addie, I gave my pulmonary dr the article in Pub Med. She said she is sending > me for a bunch of blood work including genetic testing to rule out this > treatment. I have a number of the symptoms of Hyper IGE including frequent > infections (just spent three months on 40 mg of Pred and 7 different antibiotics > - and 10 days in the hospital on IV antibiotics because of a psudemonis > infection). They took me off of Xolair when I was so sick and just started it > back up last month - While in the hospital they checked my IgE again and I > spiked up to 8,000 after being down as low as 3,000. After I get all this blood > work done I will let you know about the results. I told her I was willing to > become a research paper if necessary. I am so sick of being sick. > Anne > > > > > > Quote Link to comment Share on other sites More sharing options...
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