Hello Mary Jo, Welcome to our Forum .. so glad you found us! Well, I had to google Kansasaii .. a new one for me! I found:
"M. kansasaii disease tends to occur more in patients with underlying emphysema giving rise to more cavities and often a tree in bud." .. am I on the right track? Question: Did you have " underlying emphysema" .. or did your disease come out of the blue? Just curious.

No, people with MAC do not automatically have Bronchiectasis. But it IS very common. In fact my doctor at Mayo Clinic said it is a bit of a chicken/egg thing. They really don't know which comes first: Bronchiectasis/MAC/GERDS .. it could be either/or. I was diagnosed with BOTH Bronchietasis AND MAC at the same time. Who knows which one was first. Frankly I don't much care .. I just plain have to battle BOTH!

I really know zero about Mycobacterium kansasii but if I was you I would be very concerned if a doctor told me my Mycobacterium was "gone". At least I know that my particular form of Mycobacterium (Avium) are sneaky little critters that can be "stabilized" but NOT CURED/"gone". If I was sitting in your shoes I would seek out a: INFECTOUS DISEASE DOCTOR. They specialize in our kind of disease. They are also Pulmonary doctors .. you can't go wrong with one of those. Personally I can't recommend one but check out this link .. Mayo Clinic has a clinic in Florida .. I think it would be WELL worth it to drive if you must! Mayo works as a team .. they can consult with the very BEST doctors in Rochester MN if need be. That is where I go and boy was I glad to find them!! Check out this link:
The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

Or maybe someone on our Forum can recommend a doctor somewhere else in Florida? Please jump in and help if you can!

Please do send this link to your Aunt .. she will find SO many kind supportive people who will support her on our shared journey! BUT
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182
BUT keep coming back to our Forum yourself if you'd like .. after all Mycobacterium kansasii is similar to MAC .. you certainly are welcome! Hugs to you! Katherine

Hi Katherine, thank you for the reply. I was treated for the Kansasaii by a infectious disease doctor for over a year. I had to stop the treatment because of liver issues. He hoped the micro bacteria was gone. I had no more trouble for many years. When I did have the bronchoscope done in 2009, the pulmonary doctor found no Kansasaii. However the disease had ruined my lungs. I did have staph at that point. Right now if I go to the emergency room for anything, when they do a lung X-ray, they want to send me to a TB room! It has happened. I carry the info around showing I just have scars. I hope that the patients on this forum have good doctors. You are right- they are hard to find! There are few that know MAC and less that know bronchiectasis. It can be such a rough road and you need to be your own advocate! Thank you for helping so many find the help they need!
Mary Jo

Hi Mary Jo, what a rip about the liver issues .. it certainly can happen!

I agree about traveling with info on your disease! I ALWAYS travel with a little brochure put out by the NTM about MAC just in case .. but your info about "if I go to the emergency room for anything, when they do a lung X-ray, they want to send me to a TB room!" is REALLY good info for our Forum! Thank you! Since I have not been in a hospital since my two children were born .. I had not given this a thought .. GOOD info to share!

Mary Jo, keep coming back to our Forum .. we are all this journey together .. helping each other! Hugs! Katherine

Hi Maryjo. I have MAC w/bronchiectstasis. I see a pulmonologist at the Mayo Clinic in Jacksonville. His Name is Dr. Jack Leventhal. This man has saved my life I am sure. I was put on alternating monthly antibiotics for three yrs. that worked for awhile. Now I am on alternating months of an additional antibiotic called tobramycin. It is super expensive but it has totally dried up the infection. It is what they commonly give to CF patients to help keep the myco-organisms at bay. If this is the closest Mayo clinic to you, I highly recommend you get yourself there. Best of luck to you!

Terri .. thank you SO much for jumping in with a personal referral for those close to a Mayo Clinic in Florida .. it may help SO may people close to that location! There is nothing better than personal experience to make people trust a doctor .. you have really helped some people .. again thank you! Hugs to you! Katherine

Thank you so much for the reply! I am waiting for 2017 health insurance to go through, then will call Mayo and Dr. Jack. It is so difficult to find a doctor who treats bronchiectasis. I am in Cocoa Beach, so it is only a couple hours to Mayo. I am so sad to leave my Duke doctor but they won't take the insurance anymore. If you can believe it in this day and age, he would reply to my email within hours when I was not feeling well. My second doctor in Florida had told me I had lung cancer and needed a pulmonary surgeon. This was in 2009. I called my allergist in North Carolina and she got me into Duke. Within 1 week I was told I had bronchiectasis with staph at the moment. This was such a relief to know what is wrong! (And not cancer!) I found a webpage last night with more MAC info and its connection to bronchiectasis. My son told me he read there are "hot spots" in Florida, and Philadelphia where they are researching a large number of cases of MAC and other mycobacterium. I will try to relocate the webpage and put it on the board here.It may be a repeat of what you all know, but sometimes there are a few new facts.
This is a wonderful forum. So glad I found it. Thank you again for the info!!!

@maryjo2sell Maryjo, we are ALSO glad that you found our Forum .. in numbers we have strength! I also have MAC as well as Bronchiectasis. I have been stable with the MAC since May 2015 but find the Bronchiectasis is no fun either .. all the coughing etc!

Please do let us know the website you found helpful .. we all learn from each other on this shared journey! A couple of websites I've learned from are: http://www.patient.co.uk/health/bronchiectasis-leaflet and http://emedicine.medscape.com/article/296961-clinical
Happy Holidays to all and a Hug to all! Katherine

I live in Viera and have been going back and forth to Mayo for several weeks and next appointment is Jan 6. Let me know maybe we can share rides some time. <br><br>p.s. btw I don't know what your opinion is but our experience at Mayo (wife and I ) has been nothing but fantabulous!!!<br>

Very happy to hear you are so pleased with the Florida Mayo. I do not have an appointment yet. it has been difficult to find a good pulmonaligist locally.

<br><br><br><br><br>Hello bboxer,<br> <br>     I too love the Mayo clinic. Will be headed there <br>myself Jan 7.  Take care -Terri<br> <br><br>