I have wanted to know if anyone has used the Zithromax and also have B.Cepacia. My daughter has this and we have yet to start her on that. I'm wondering why our doctors haven't recommended we try it yet..Sounds like it is making a large difference. Our daughter is down to 30 % in her Lung function and we are looking into transplant. Duke is the only place that may even take her on and put her on the list. I would love to avoid it if possible. <img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"><img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0">
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has anyone used Zithro and have B.Cepacia?
- Thread starter anonymous
- Start date
Hi My son is 25 and has cepacia, his pft's are also about 34% and he has been on zithromax for about a year now and wishes he had known about it sooner. He has also done testing for transplant but is not quite "sick enough" for one just yet but Drs. wanted to get testing done while he was well enough to go through with it.Sandy
I can't really respond to whether those with Cepacia are on Zithro, I would assume they are and it might help.I am not sure where you live, but I have done phone calls and surveyed all the lung transplant centers in the U.S. a couple of times for various reasons. There are presently about 6 centers in the US that will do cepacia. I was just going over the list last night for a young woman who needs a tx and has Cepacia. I did not realize that there were no centers on the west coast that will do Cepacia. Anyway, here is a list of centers that will do Cepacia - Duke, UNC, UPMC, Univ of Cleveland, Sentara Norfolk, Children's Wisconsin. One center was going to start it, but may of stopped - UAB.If you have any questions, feel free to email me. luckylungsforjo@aol.comJoanne Schum
My son cultured Cepacia a little over 2 years ago. He was taking zithromax prior to that. After culturing Cepcia they were going to take him offf of it as he showed resistance to it but research shows that it does help even if resistance shows in the culture. The biggest improvement we found was wen they started him on Aztreom. Prior to this his lung functions had made over 20% drop and they just seemed to keep dropping. Since starting on inhaled Aztreom, we have remained stable. His lung functiopn have remained in the low 60%