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@robynmar

Hi, I'm new to this forum. I was first diagnosed with MAC in 2001 and was treated with the 3 antibiotics and prednisone for a year. I recovered, but now it is back. I had radiation in 1988 for stage 4 breast cancer which pretty much destroyed my left lung. I beat the cancer but the radiation made my lung vulnerable. This year I was first diagnosed with chronic bronchitis, then bronchiectasis, and COPD. I'm still waiting for the lab report for the MAC bacteria. My symptoms are lots of mucous, extreme fatigue, loss of appetite, periodic low fever and chills. I am now 89 years old and trying to learn to live with this. I mostly sleep a lot. The doctor says he won't treat me because of the severity of the antibiotics. Also, I read that a recurrence is very hard to cure. I live close to Stanford, but they seem to be working with Amikacin (antibiotic) which has serious side effects. They have been running clinical trials. I might ask for a referral to them if I thought they could help minimize my condition. I'm hoping that a minor antibiotic might help. Does anyone have any information about someone in my position? The Kaiser doctor says that the MAC won't kill me but pneumonia would. So I am staying close to home. Thanks for any input. Robyn

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Replies to "Hi, I'm new to this forum. I was first diagnosed with MAC in 2001 and was..."

@robynmar Hi
Robyn. I know that inhaled cipro has been in clinical trials and looks very
promising. It is supposed to be released in the next six-12 months. Not sure,
but you may have to go to somewhere like Stampford to get that trial. - Terri
M.
 

 @robynmar Robyn,
you can also ask about the regimen you and I have discussed before at your next
appt.
 

@robynmar, Robyn Welcome to our Connec Forum .. so glad you found us! I can only tell you that I did inhaled Amikacin for thirty months for my MAC .. at age about 70 .. did my "Due Diligence" .. got the proper testing and was able to stabilize the mycobacterium. I have now been stabilized since 2014 .. I answered you with a Member's recommendation for a doctor at Stanford .. hope you find that helpful! I would ABSOLUTELY get myself there for a second opinion!! I would recommend you read the past pages of our Forum to educate yourself to our shared MAC disease .. YOU must be your OWN best advocate .. and you cannot do it until/unless you have educated yourself to your options! Read .. then come back to us with any questions you might have .. we are here for you! Hugs to you! Katherine