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Not Treating MAC
So I had my visit to the Mayo clinic last week with tests that included chest Xray and Pulmonary function test along with TRYING to get a sputum sample, that never works for me. At this time everything is stable and they have decided to not treat. My function tests have not changed much and the xray showed no major changes. This is good news but I still get nervous knowing that I have these nodules in my lungs and that I am a former smoker. I still have not got clarification on whether I have Bronchiectasis. I sent an email out today to get some more clarification. I did not get a chance to see Dr Aksamit - he is so hard to get into now - becoming popular, which disappointed me since I have seen him in the past. Hopefully his assistant that I saw will at least confer with him. My trust level with Dr Aksamit is so much higher, he truly takes the time to discuss everything and give you the answers, and compassionate to boot. Are any others on this site not being treated and how did they decide it?
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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?
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1 Reaction@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
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.
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2 Reactionsboomerexpert....AMEN! Terrid
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1 ReactionWhy 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
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1 ReactionNo 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.
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1 ReactionHi 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
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1 ReactionSorry 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.
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1 ReactionI 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!
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1 Reaction@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.