Thats fantastic news! Im still doing ok, still on the inhaled amakacin and will have a ct at six months on it which I think will be in Feb nxt year, and still on the big 3 also. Just bought a aerobika so am going to try that to get something up and out with that. Just a waiting game, I would like to hear how the trial is going with everybody else but havnt heard yet.
Hope everyone is doing well and thanks for asking. Heather

Hello Rosie, thank you so much for the update! SO glad you got into see Dr. Aksamit! You can TOTALLY trust him! He puts ALL your symptoms together .. the CT scan .. the Bronchoscopy results .. the answers to the question he asks you .. ALL these things to then decide IF you need to go on the antibiotic treatment.

If you have read my recent posts you will see that I just saw Dr. Aksamit .. that YES I DO have mycobacterium in my lungs .. BUT based on all those above things I just mentioned .. he said he considers me STILL STABLE! That I am to come back for a check up in six months. I absolutely KNOW that when you see him in December ( I hope you already have your appointment set up .. he is hard to get into and appointments can only be set up 3 months in advance!) .. but when you do see him .. he WILL put the puzzle together and come up with the appropriate answer for you! SO glad you are with him! and happy you checked in! Let us know how things are after your appointment! Happy Holidays and sending you a Hug! Katherine

Hi Heather! Thank so much for the update! I so know what a pain the inhaled amakacin is .. I did it for thirty months .. only irritation I had because of the hassle .. BUT it did get rid of the nasty critters so I can't complain!

I had to google"aerobika" had never heard of it. Checked the reviews on Amazon.com .. seemed to help some people .. others not. What has been YOUR experience? I'm really curious because I'll try anything to get the most mucos out of my bronchial tubes. But I know for me the Acapella device didn't do a darn thing .. so wondered if this would be different? Really interested in your experience!

Glad to hear you're doing ok .. better than NOT .. right?! You're right .. it is a waiting game .. just waiting for the antibiotics to kill off those mycobacterium .. we don't have a choice .. it's us or them .. and I was NEVER going to let it be them .. we are WINNERS! Die Critters DIE!! It took me a while .. but I was patient and now I have been stable since May 2014 .. stick with it girl .. you'll be just fine! Sending you a hug! Katherine

Hi Kay, thanks for the update! Make sure you let us know how things go at Mayo In January. In terms of the nausea .. have you tried taking them at different times .. rotating which ones etc? It took me quite a while to find a routine that worked for me.

was told for me:
Azithromycin 250mg/Avelox 400mg-TAKE WITH FOOD/Rifampin 300mg-TAKE ON EMPTY STOMACH). Since Rifampin caused sleep disturbance for me .. I would take it first thing in the morning on an empty stomach. Then at least one hour later I could take the other antibiotic with food.

I found it REALLY important to get enough sleep. For me it was 10-11 hours sleep per night. Now that I am stable but with Bronchiectasis .. I still need 9 hours .. the coughing is pretty exhausting.

Yes, my dentist diagnosed geographic tongue. You can google it .. Images .. you can then see what it looks like. The dentist said NO ONE knows how you get geographic tongue .. being on the antibiotics from MAC cannot be ruled in or out .. No one really knows. BUT then on my next 6 month visit .. I spoke of pain. He said .. geographic pain does NOT hurt .. open up! Then "You have Oral Thrush".

So now I have been on a journey of TRYING to get rid of it! I am now on my 4th prescription .. this one from Dr. Aksamit .. a compound mouth rinse. Frankly after 2 weeks .. still hurts! Still not a solid solution.. I would DEFINITELY have it looked at before it gets worse. Mine did not get painful for over a year. Sooner is better than later, Keep us posted! Happy Holidays! Katherine

Oh Janet! I am SO happy to hear from you AND that you are doing so well .. AND that you have made so many good choices for yourself .. REALLY good "Due Diligence"! YEAH!! This is just such wonderful news!! What you are telling me as your game plan is EXACTLY what sounds smart to me .. AND pretty much the program I am on with Dr. Aksamit at Mayo Clinic now that I am stable. As with you .. he is holding off antibiotic treatment because my symptoms are mild .. AND I go in for follow up check ups! Due Diligence on OUR parts .. AND our doctor's part!

Janet, I ABSOLUTELY DO NOT think we are contagious to ANYONE on chemo!! WHY? Because Dr. Aksamit KNOWS my husband is Stage 4 cancer .. is on chemo .. is with me on EVERY appointment .. that we travel all over the world .. are on airplanes frequently etc! He KNOWS I am a person of integrity .. If he thought for a MINUTE that I could damage another person .. for SURE my husband .. Dr. Aksamit would tell me. No WAY are we contagious! Phooey!

So Janet , I am just delighted to hear from you .. AND don't let yourself be a stranger again .. let some of that sunshine glow on some of the new people on the Forum .. they LOVE good news like yours!! People who HAVE done their Due Diligence .. learned about our disease .. taken charge of their health .. AND charged forward!! We need you! You go girl! Hugs to you! Katherine

Hello Cila, I do a sputum culture which takes 60-90 days to culture .. he also does an Xray to compare with my last one .. breathing tests and asks LOTS of questions! Has your doctor NEVER done a sputum culture?

Cila, I looked back on your posts .. I found: I also saw another plum. Dr. to get a second opinion. Sure enough I have MAC and bronchiectasis. My question to you is: 1. did EITHER doctor culture the mycobacterium BEFORE putting you on the antibiotic
2. because UNLESS the mycobacterium IS CULTURED there is NO way to know for sure which antibiotic will be effective

Cila, I would like you to print out and read until you understand this information .. it is YOUR BODY AND YOUR HEALTH!
an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
GOOD INFO: http://maclungdisease.org/frequently-asked-questions

You must be your OWN best advocate .. educate yourself and make sure you get the best care!

In terms of sleep .. another thing that has helped me is Twinlab Magnesium Caps 400mg, 200 Capsules .. I take 1 capsule plus 1/2 Unisom at night .. for me it works .. can only speak for myself. I read about the Twinlab Magnesium Caps 400mg, 200 Capsules on a website for people having trouble sleeping .. ordered it online .. really made a difference for me. Not a perfect night of sleep .. but I can get to sleep .. when I wake up .. I can get back to sleep in a reasonable period of time. (my regular magnesium tabs didn't work)
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_a_it?ie=UTF8&qid=1479018295&sr=8-1&keywords=twinlabs%2B400mg%2Bmagnesium&th=1
Hope this helps! Hugs! Katherine

Jan, SO glad to hear from you! Sound like you had a really tough time of it .. wow! But it sounds like you have found a positive support group .. happy for you. Not all are like that. I tried just one .. found myself depressed after just a few times .. found the people "had BECOME their disease" so to speak. I never went back. I feel STRONGLY that MAC is just a PIECE of who I am .. my husband And I live VERY nicely in denial with health issues! Unless some issue smacks us in the face we just ignore it .. of course doing our Due Diligence in taking care of our health .. but being very clear it is NOT our focus in life. Our focus is having fun and living life to it's fullest! That sound just what you are doing .. good for you! Glad you have found a pathway that is working for you .. stay happy and serene .. that helps our bodies stay healthy! Happy Holidays .. sending you a Hug! Katherine

David, so glad you're improving .. keep on keeping on! But remember coughing up that sputum is GOOD .. getting it up deprives the mycobacterium of a breeding ground! Keep coughing! Hugs to you! Katherine

Kathryn, if they cannot reach the nodule for a bronchoscopy .. ask the doctor if your city has a facility for a "salt induced sputum culture". I do this every Mayo Clinic visit. I sit in a little booth ..breathe in salty air from a tube until probably my bronchial tubes and lungs are irritated enough that I can cough up sputum. I then spit it into a sterile cup. It gets sent into the lab to be cultured. From that culture they identify the mycobacterium AND what type of antibiotic will be effective against it! Make sure you keep at it until you have a GOOD culture .. you can see yellow spots in the cup .. otherwise it will come back "Too Scant to Culture" .. meaning you did not cough up enough to specimen. Hope this helps! Katherine

@janovr Thank you for sharing this sound advice about living your life to the fullest. While I do not share your health issues, I do send you my prayers for strength and blessings. I am a liver/kidney transplant recipient, and I can relate to what you are saying and feeling. Have an enjoyable day.
Rosemary