I had MAC 3-4 years ago, I have Aspergillus now but all MAC tests are negative. ID Dr at NJH wants me to have a RUL lobectomy but I have to have an Amikacin IV for 6 weeks. I have challenged him on this, has anyone else been in this situation?
Thanks, That's an excellent summary. I will get another opinion from the Mayo.
Has anyone else transferred treatment from Nation Jewish to Mayo Jacksonville?
@patbrennan I do not know of a particular ID doctor who treats aspergillosis in the Chicago area, but I do have a few thoughts. I have MAC, aspergillosis fumagatos, and now over a month with RSV. I noticed that Chicago has Loyola University which has several ID doctors. If you look a few of them up they will say what they treat, and my guess is if MAC or HIV is on their resume they treat Aspergillosis. Usually the first question I get by doctors at an ER is , “ Do you have aids?” I do not, but invasive aspergillosis with pneumonia put me out of commission for quite some time. My UMass doctors are all over it because it is a teaching hospital. Their follow up with me is awesome. They ( and lots of prayer) have literally saved my life. I am hoping Loyola is similar. The treatment is usually Vfend or the more expensive Cresemba. I have been on Vfend. Aspergillosis is a no bueno but is more easily treatable than MAC. Good luck! @irene5
@patbrennan I do not know of a particular ID doctor who treats aspergillosis in the Chicago area, but I do have a few thoughts. I have MAC, aspergillosis fumagatos, and now over a month with RSV. I noticed that Chicago has Loyola University which has several ID doctors. If you look a few of them up they will say what they treat, and my guess is if MAC or HIV is on their resume they treat Aspergillosis. Usually the first question I get by doctors at an ER is , “ Do you have aids?” I do not, but invasive aspergillosis with pneumonia put me out of commission for quite some time. My UMass doctors are all over it because it is a teaching hospital. Their follow up with me is awesome. They ( and lots of prayer) have literally saved my life. I am hoping Loyola is similar. The treatment is usually Vfend or the more expensive Cresemba. I have been on Vfend. Aspergillosis is a no bueno but is more easily treatable than MAC. Good luck! @irene5
@patbrennan I do not know of a particular ID doctor who treats aspergillosis in the Chicago area, but I do have a few thoughts. I have MAC, aspergillosis fumagatos, and now over a month with RSV. I noticed that Chicago has Loyola University which has several ID doctors. If you look a few of them up they will say what they treat, and my guess is if MAC or HIV is on their resume they treat Aspergillosis. Usually the first question I get by doctors at an ER is , “ Do you have aids?” I do not, but invasive aspergillosis with pneumonia put me out of commission for quite some time. My UMass doctors are all over it because it is a teaching hospital. Their follow up with me is awesome. They ( and lots of prayer) have literally saved my life. I am hoping Loyola is similar. The treatment is usually Vfend or the more expensive Cresemba. I have been on Vfend. Aspergillosis is a no bueno but is more easily treatable than MAC. Good luck! @irene5
Thanks, That's an excellent summary. I will get another opinion from the Mayo.
Has anyone else transferred treatment from Nation Jewish to Mayo Jacksonville?
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I have not, but my friend had COPD, and they never treated his Aspergillus - he eventually died of an unrelated (non-lung) infection.
Here is what Mayo Clinic has to say about Pulmonary Aspergillus:
https://www.mayoclinic.org/diseases-conditions/aspergillosis/diagnosis-treatment/drc-20369623
Sue
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7 ReactionsThanks, That's an excellent summary. I will get another opinion from the Mayo.
Has anyone else transferred treatment from Nation Jewish to Mayo Jacksonville?
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2 Reactionsgrandma5
Hope you are doing well. I thought I would check in since or situation are so similar. Thank you for sharing, Jeff
@patbrennan I do not know of a particular ID doctor who treats aspergillosis in the Chicago area, but I do have a few thoughts. I have MAC, aspergillosis fumagatos, and now over a month with RSV. I noticed that Chicago has Loyola University which has several ID doctors. If you look a few of them up they will say what they treat, and my guess is if MAC or HIV is on their resume they treat Aspergillosis. Usually the first question I get by doctors at an ER is , “ Do you have aids?” I do not, but invasive aspergillosis with pneumonia put me out of commission for quite some time. My UMass doctors are all over it because it is a teaching hospital. Their follow up with me is awesome. They ( and lots of prayer) have literally saved my life. I am hoping Loyola is similar. The treatment is usually Vfend or the more expensive Cresemba. I have been on Vfend. Aspergillosis is a no bueno but is more easily treatable than MAC. Good luck! @irene5
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6 ReactionsIrene, Here is a must read paper. I even forwarded it to my pulminologist. At least it seems to explain this aspergillus rage.
https://www.mdpi.com/2309-608X/6/4/346Rick
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2 ReactionsHope you are doing well. Have a good Christmas.
Hope you are getting the answers you need.