<br><br><br><br><br>Thanks!<br> <br><br>

@pamelasc1, Pamela this is REALLY a question for your doctor! I have really been on very different routines .. from monthly when I was on the antibiotics to quarterly .. to now only when I see Dr. Aksamit. Really across the board .. that is why you should direct this to your doctor .. it will really depend on their judgment. Hope this helps! Hugs! Katherine

@jillnc .. Jill, this is ALL about 'due diligence' and being your OWN best advocate! I personally would NOT feel comfortable with 'said only if I felt the symptoms again. ' Personally I would upon ending antibiotic treatment request a 6 month follow up appointment with a sputum culture and Xray .. IF that still showed me as being 'stable' .. then I'd be fine with another 6 month OR maybe even 12 month follow up .. BUT merely ME deciding to play doctor and making treatment decisions!! No way!! These mycobacterium critters are sneaky buggers .. and we do NOT want to end up like Terri needing a lung transplant because doctors did NOT do their 'due diligence' .. SORRY .. but unfortunately we as patients must do our OWN 'due diligence' at times .. it is OUR OWN bodies .. and NOBODY cares about our bodies as much as we do! Sorry if I sound a bit preachy .. but I've just seen too much .. heard too much NOT to be an advocate! Hope I'm not stepping on any toes! Hugs! Katherine

No toes damaged here 🙂 thank you for your opinion and you are correct about not wanting to have a lung transplant. I also have a restrictive lung disease I'm dealing with as well from sjogren's syndrome so my lungs are really taking a hit this last year. Thankfully there are meds available and the MAC ones appear to be working and just started one for the lung disease so we will see. I'm thinking someone will always be looking at my lungs in one way or another. Take care.

I am trying to locate a post i wrote today but had to stop in the middle to check something on google before i posted itl so i just skipped to google and then went back to find the post i did not send? I have spent hours trying to find it but maybe it was deleted cause i didnt actually send it. I am new so i did not know how to get it back. Do i type it over again? Blessings

@georgette12, I've done exactly the same thing myself! What I've tried to do is:
1. go back to the message I was trying to respond to .. OCCASIONALLY my partially typed answer will be there
2. MOST often I have to start all over and it is SO frustrating!
3. so most often when I want to google something I make sure I open a separate page so I don't mess with my posting page! However I don't always remember to do that!
Good luck .. glad you are with us! Is your name Georgette? Hugs to you! Katherine

<br><br><br><br><br>Hello Pamela!   In answer to your questions.... I was diagnosed <br>with MAC in 2005. One pulmonologist of three wanted me to start the three drug <br>treatment. I declined. Was given standard antibiotics off and on over the <br>following months and that was enough to knock the MAC infection down. I remained <br>sickly and short of breath over the years. And got worse. Finally, sought <br>treatment at the Mayo in 2013. I was then put on monthly prophylactic <br>antibiotics that were switched out bi-monthly as to not build a resistant strain <br>of MAC. I believe they do not want to treat me now with the triple drugs is <br>because I do not have time on my side. I may need a lung transplant at any time. <br>I am doing fine right now, but am told I could go downhill unexpectedly. (I have <br>numerous comorbid lung diseases) The tobramycin acts fast. It knocked down <br>the six colonies I had in a month, but within a month I have some kind of <br>infection back. It is a vicious cycle really. Just not as bad as the full blown <br>MAC. I am a very active person and feel better than I have in many years. I <br>started on the alternating Tobi five months ago. I stopped coughing altogether <br>after the first month on it. I walk a good distance and ride my bike about four <br>miles a day. It's mainly the stairs in my house that get me out of breath. My O2 <br>numbers have increased. I was at 91 for years, now, I am at 95 and 96. I hope <br>this info helped. Hugs -Terri M.<br> <br><br>