@auntnanny .. Jan, NOW with this post I am understanding you! Welcome AGAIN! Now that you have posted .. you are IN .. you are now part of Mayo Clinic Connect! I am REALLY glad you found us! MANY of us had never smoked .. myself included! You may be newer to MAC/Bronchiectasis .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all are on this shared journey .. we are here to help you .. support you in any way we can. We have "been there .. done that". Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum! Many pages? Phooey .. you will read a book for pleasure .. you won't read the past pages of this Connect Forum to educate yourself to our shared Bronchiectasis/MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,... concerns .. cares. We will be here. Sending you a hug in this tough time! Katherine

Jan, while I am thinking of it .. you said: " Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers."

From my File Cabinet:
MAC-TREAT OR NOT TO TREAT I felt like my Mayo Clinic doctor put the 'puzzle' of to treat or NOT to treat with antibiotics JUST like a great big puzzle. The puzzle pieces were put together based on the results of the sputum culture results/Bronchoscopy if needed/CT scans/Xray/Pulmonary Testing. THEN deciding whether to treat with antibiotics NOW .. go to quarterly checkups, semi annual .. then to annual .. sometimes then back to semi annual checkups. It is ALL up to your GOOD Infectious Disease doctor who is (IF) KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up checkups to CONFIRM that the MAC in your lungs is STILL "stable"/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still "stable"! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene!

Hugs,

   Katherine

I have been doing many sputum tests and sending results to Dr. Moua. He has not asked for another CT scan -- would the MAC possibly not show up on the sputum tests? Each time I start coughing again I do a sputum test to determine which bacteria is causing the problem....... for a while it would be MRSA ..... then maybe MSSA, ...... or pseudomonas...... and each would require a different antibiotic. I am usually free of coughing for 3-5 weeks after 10 days/2 wks of a selected antibiotic. Then, it's all to do over again. Clindamycin has been a good one for me. But I don't understand why the tremendous coughing and phlegm and no bacterias to treat. He selects one (usually clinda........ and I do it and calm the cough for a few weeks. But there has been no MAC in the tests for the last year........ and nothing except normal flora in the last four sputum tests. Does this mean the testing could be erroneous -- has anyone else experienced quite the same????? Thank you -- Jan

@auntnanny .. Jan, is he doing the below .. Hugs! Katherine

From my File Cabinet:
SUSCEPTIBILITY PANEL TESTING Susceptibility testing is used to determine which antimicrobials will inhibit the growth of the bacteria or fungi causing a specific infection. The results from this test will help a health practitioner determine which drugs are likely to be most effective in treating a person's infection

Not sure I understand the question, but if there is a bacteria, the lab gives a list of suggested antibiotics to use but when the test is negative, there is no list. Does this answer what you're asking? So, there hasn't been a list for the last four times. However, Dr. Moua will go ahead and prescribe an antibiotics to take for 10 days anyway. Believe me, that part I do not understand. His card says he is Senior Associate Consultant, pulmonary and Critical Care Medicine and Assistant Professor of Medicine -- Rochester. I don't know if that is a great title to hold or if everyone there fits that bill. Jan

@auntnanny, Jan, as I understand it, coughing and excess phlegm do not mean you have MAC. These are the symptoms of bronchietasis. So even though your sputum tests come back negative for MAC, it does not prevent you from coughing with a lot of phlegm. You can catch MAC when your bronchiectasis prevents your bronchial tubes to freely move/expel excessive phlegm like the bronchial tubes of someone with healthy lungs, bacteria such as NTM mycobacterium can be trapped in there, causing infections like MAC.

Thank you for your post -- there's so much more I do not understand than what I do. Appreciate your taking the time. Jan

@auntnanny, Jan, give yourself a break .. this is a LOT to digest .. you don't need to understand it all at once .. remember the saying "How to you eat an elephant? One bite at a time!" That is how you will learn about all this information! "One bite at a time"! Just give yourself permission to be wherever you are on THIS journey .. wherever you are is JUST FINE. Take your time .. we will be here to walk the walk with you! Hugs to you! Katherine

@auntnanny, Jan, I CANNOT advise you what to do .. I can only tell you what I did in your situation. I did my "Due Diligence" .. went to Mayo Clinic, Rochester website and researched UNTIL I found a doctor who's medical bio indicated an INTEREST in MY diseases: MAC/MAI AND Bronchiectasis. Because my beloved Dr. Timothy Aksamit has become internationally famous and travels all over the world speaking to educate about our shared disease .. I researched and FOUND that he worked as a "team" with the Pulmonary Department. YOU can choose to call 507-284-4348 .. request an appointment with Dr. Aksamit's Pulmonary Team.

If you check Dr. Moua bio at http://www.mayoclinic.org/biographies/moua-teng-m-d/bio-20055546, you will find his "Conditions Treated" and "interests" stated is " Interstitial Lung Disease" ( http://www.uchospitals.edu/specialties/pulmonary/interstitial-lung/faq.html ) Frankly that would not suit me .. nice though he is. Just me and my opinion.

Jan, to make sense of your situation .. I had to go back on your posts .. this is what I came up with:
a. Diagnosed with Bronchiectasis 3 years ago at Mayo
b. MAC bacteria in sputum testing done at Mayo .. none for over a year .. no treatment
c. doing many sputum tests and sending results to Mayo
d. if begin coughing again .. sputum test to determine which bacteria is causing the problem. For a while it would be MRSA .. then maybe MSSA .. or pseudomonas and each would require a different antibiotic
e. I am usually free of coughing for 3-5 weeks after 10 days/2 wks of a selected antibiotic. Then, it’s all to do over again.
f. My last four sputum tests have come back negative — which I don’t understand. I did them only because my coughing had recurred and was producing tremendous amounts of green phlegm.

My opinion ONLY:
1. call 507-284-4348 as I stated above .. they have all your records .. tell them you are VERY ill and need an appt ASAP!! "Fake until you make it if necessary! You have been fed so many antibiotics over such a long period of time who KNOWS what is going on with your body!)
2. Pseudomonas is a SERIOUS bacteria that DOES not CURE!! It is a nasty green mucus and NEEDS TO BE treated! Because I am currently dealing with Pseudomonas I have done a lot of research .. not to frighten you but to make sure you take action .. a mere bit of which is: The bacterium appears to have an inbuilt resistance to antibiotics, as well as the ability to mutate into new, even more resistant forms. It is difficult to treat people with Pseudomonas infections. The bacteria have long been notorious for their resistance to antibiotics. More recently, scientists have discovered that individual Pseudomonas bacteria differ considerably from one another, meaning we are not necessarily fighting a single foe. The bacteria's genetic make-up differs, as does their virulence - their ability to cause disease. Some strains seem particularly good at spreading from one person to another, resisting antibiotics, surviving in the environment, or even causing death. They are also constantly evolving. In this project, researchers are studying the genetic differences between a wide spectrum of different Pseudomonas aeruginosa bacteria. They are identifying and sequencing sets of genes that enable the bacteria to cause serious infections in man, and studying the role of these genes. They aim to emphasise the enormous genetic diversity between different Pseudomonas bacteria by studying strains collected. https://www.action.org.uk/our-research/secrets-superbug-what-makes-pseudomonas-bacteria-so-deadly
3. use the Mayo Clinic Portal to start MONTHLY requesting they; Please mail me a copy of my Sputum Culture Report to include both Mycobacterium and Bacteria

Jan, I hope you find the above helpful .. it is ONLY what I would do in your shoes .. BUT YOU must trust your own best instincts! It is YOUR body and YOUR life .. ONLY you can make your own decisions on what is best for you. We will all honor what you feel is best for you and be here every step of the way whatever pathway you decide! Hugs to you! Katherine

@ling123, Ling, great advice to a Newcomer .. thank you! Hugs! Katherine