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Thanks for starting this discussion, Barb.
I'm bringing @boomerexpert @tdrell and @windwalker into this discussion because I believe they did not treat MAC with antibiotics. I'm relying on my memory, so forgive me if I'm remembered incorrectly.
Barb, I know it's disappointing to not have seen Dr. Aksamit. However, you can take comfort in the fact that he and his team members work very collaboratively. Why did they decide not treat you with antibiotics? What are your next steps?
Replies to "Thanks for starting this discussion, Barb. I'm bringing @boomerexpert @tdrell and @windwalker into this discussion because..."
boomerexpert....AMEN! Terrid
Why did they decide not to treat you? They said because I have no fever, chills, night sweats that I do not need to be treated at this time. I never have an appetite though, could be something else. I have been having major GERD and sinus issues and suffer from some depression - not sure why I always feel so crappy. I am still waiting to hear back on confirmation as to if I have bronchiectasis. I sent an email to get clarification last week and have not heard back. Do you have yearly chest xrays or CT scans? Just wondering how they monitor your nodules? Barb
No symptoms same reason my doc decided no treatment warranted at this time...also my last scan (PET this time) showed areas with new MAC and areas where it had healed itself; moving about vs. increasing. As to no appetite, untreated GERD + depression is a one-two whammy for no appetite. Recommend treating both.
Sorry for the delay in getting back to you. I guess at this time the treatment would do more harm then the MAC. Because my Xray showed no change and my pulmonary function tests were good, no fever or chills, they are not treating. I have some GERD issues and other things going on too so they are not sure how much of it is the MAC and not the other things. I have gained back 10 lbs which is good, I was concerned because I had last 15 lbs - with out needing to.
I too lost weight wo/trying at one point, but realized it was due to upsetting goings-on in my life that caused me to eat less...now that life is better, so is my appetite and I gained it all back!
@barbjh .. do you have a first name? Much more personal. @barbjh, below is from my File Cabinet:
ANTIBIOTIC .. TREAT OR NOT TREAT
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 .. 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!
@barbjh , this said .. DEFINATELY .. there SHOULD be a follow up plan in place for you. WHEN do they want you to come back? Each time I have a check up it is with: sputum culture, Xray and various pulmonary testing .. then discussing my current physical condition with the doctor. IF you are NOT given a follow up plan I would definitely question it .. but I would be very surprised it you are not. Keep us posted! Hugs! Katherine.
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I, too, am a former smoker...have a nodule, bronchiectasis, RA, and MAC that doesn't yet require treatment. That is a blessing. Means your body is currently doing a good enough job of fighting it without help. May it remain that way for us.