Hello Ali, welcome to this Forum .. I think you will find a lot of information and support here .. there are a lot of good people!

If I was sitting in your shoes .. I really like Cila's idea pf requesting a Bronchoscopy .. IF you are not willing to wait for the additional sputum tests and time required .. since you have trouble producing enough sputum. Perhaps your doctor can find enough medical reasons to get Medicare to cover the expense.

In terms of dealing with the antibiotic treatment I would encourage you to read through the pages of this Forum .. you will be amazed how much you will learn about this disease .. remember "Knowledge is Power" .. AND Knowledge takes away Fear! Fear of the unknown is what holds us captive .. like the child who is afraid of the dark .. when they know darkness holds NO boogieman .. they lose their fear! When you do your "Due Diligence" and gain knowledge about the antibiotic treatment .. you will lose your fear.

Plus remember .. we on this Forum are here for you .. we are all on this shared journey together! Sending you a Hug! Katherine

I too would recommend a Bronchoscopy, to see how widespread the disease is. I've had 2, plus a lavage (lung wash) over the past 8-9 years. It was painless for me and not uncomfortable at all.

Hi Mimi,
I was recently diagnosed with bronchiectasis and MAC. Discovered because of a CT scan after some chest pain I was having. That has gone away and the only symptom I have now is a little fatigue sometimes. I'm waiting until my symptoms worsen before starting the antibiotics. If you read up on this you'll find that the Medical professionals that deal with this all the time or are the experts - Mayo Clinic, National Jewish Health, NTM, and sometimes recommend waiting to start the treatment until your symptoms worsen. Katherine's doctor - Dr. Aksamit wrote a paper that talks about waiting. Read number 5 in his article http://www.resmedjournal.com/article/S0954-6111(13)00379-X/fulltext . There are a LOT of doctors out there that don't know enough about this. I'm thinking mine might fall in that category. I'd go to Dr. Aksamit if I could but I found out I'd have to pay for it out of pocket - my insurance wouldn't cover it. So, I will make an appt. with an infectious disease Dr. that is listed on the NTM website http://www.ntminfo.org/ . I checked him out and NTM, in particular MAC is his clinical focus and area of research. He should be better than the pulmonologist I have. He can tell me how often I should be checked for growth, what tests to have, etc. We have to do our own research it seems and these message boards are invaluable. You have to do what makes you comfortable. Just do your homework and ask questions. Everyone here will try to answer any questions you have. It's helped me sooooo much! Good luck! Janet

Hi Janet,
Thank you so much for your reply and this information. I will definitely check out the sites you gave me, and look further into this. I am glad to have found someone else who has been tested but with little or no symptoms. My pulmonologist is leaning toward starting the treatment now to get a head-start on it. I will keep in touch with you as to what happens next week when I talk to my doctor further about the lab reports. Thank you again and for your concern.

I went into the site you gave me for NTM Healthcare Physicians, and it asks me to register before being able to go any further into the site. I started to, but it looks like it's for only doctors, etc. Did you have to register? If so, what about the questions they ask after your sign-in info?

Hi Mimi,
You shouldn't have to login unless you are trying to access the message board and then you would have to set up an account. One good thing to check out - If you can see the header bar - click on Healthcare, then Physicians Referral List, then your state. You will come up with a list of providers that specialize in MAC/MAI. Then click on the other items on the header bar for all sorts of information. I hope that works! I will continue to work with a pulmonologist but I'm going to see the infectious disease specialist Dr. listed for my state (NC) as he is the expert at that in my state. I want someone that has a better idea about when I should start treatment. I'm just not confident that my pulm. Dr. really knows that. Probably due to all I've learned here. The people on this site have done more to empower me and make me feel confident that this will just not be a problem. It's something I'll have to deal with, but things could always be worse and I have a support group to give me all kinds of hints on dealing with everything imaginable. What a weight lifted off my shoulders!!

Let me know how your tests turn out. I just had a bronchoscopy this last Wednesday so I should be getting some results in a few weeks I think. Take care. Janet

Hi Janet, I found the doctor referral list, unfortunately there are none listed within a couple of hundred miles from me (Vermont). I will keep searching though. Thank you again for your help and good luck with your test results; let me know how you make out. Mimi

Hi Janet, be sure to let us know how your bronchoscopy results turn out .. sending you lots of positive energy! Hugs! Katherine

Mimi, what WONDERFUL information you have shared with our Forum .. WOW! Such EXCELLENT resources .. thank you! Especially for resources of doctors in case your insurance will only pay for certain doctors. I have really found by googling the doctor .. finding out where they went to school .. their area of "interest' .. their specialty .. all those kinds of things help me evaluate if that doctor might know enough about MAI/MAC to be a good fit for me. THEN I for sure want to know how many patients they have treated for MY disease! I have NO interest in being their guinea pig .. learning curve! I've learned the hard way with my own .. and my husband's health to be careful in this manner .. you have done a GREAT job at this Mimi .. I applaud you! Thank you for sharing all your research!