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@barbjh Welcome to our Forum .. glad you found us! Do you have a first name .. Barb? .. more personal. I agree with Colleen .. my understanding is that at Mayo the doctors work as a "team" and do consult. I also see Dr. Aksamit and have since 2007 .. from working with him I get a strong sense that the decision to start or NOT start antibiotic for a doctor is like putting a BIG puzzle together .. the components are CHANGES IN: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. AND my responses to his VARIOUS medical questions. He then puts it all together and decides if I need to come back in 3 mos .. 6 mos .. 12 mos. It ALL depends on the changes .. ie progression of the disease .. and ONLY the doctor can put that puzzle together! But THAT is the importance of proper frequency of follow up appointments .. the mycobacterium is a sneaky critter that needs to be watched and followed! You do NOT want to start antibiotics if you do NOT need them .. BUT when/if you need them .. START! When I was diagnosed in 2007 this Forum did not exist .. I was a "lonely only" .. it was SO scary .. I felt SO alone with so little information that I refused treatment UNTIL I got a second very serious "abscessus" type mycobacterium .. bad news .. I always regretted refusing treatment initially .. it then took 30 months of 4-5 antibiotics to get rid my MAC. SO @barbjh , my advice to you would be .. listen to the Mayo doctors .. do NOT go on antibiotics until you NEED them .. then if you do need them .. trust the experts. That is what I would do if I was in your shoes .. Mayo is "Mecca" .. people come from all over the world .. why wouldn't we trust them?
In terms of the Bronchiectasis .. they should be able to tell from the Xray I THINK! I agree .. you should be aware of this medical condition if you have it.
Hugs to you! Katherine
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Hi Katherine, sorry for the delay in getting back to you. I have not been feeling the best - mostly GERD and stomach issues. I also am still trying to get clarification on whether I have bronchiectasis. I asked at my appt and he did not seem to know for sure so I emailed him and asked for clarification. Still have not heard back - they said the email got forwarded to Dr Aksamit. Since they do not want to see me for another year it is important to get answers to all my questions. Dr Aksamit is great at that. They suggested using their Mayo clinic nasal spray and you mentioned you used it. Does it work well for you? I have been using the saline rinse which seems to help and Flonase but hate the smell of the Flonase. You have been through a lot. It is always kind of scary knowing I have these nodules growing in my lungs along with this infection. But on the flip side my mom had it and was never treated, and she is 92. Barb