Katemn....how was your visit with Dr Aksami???
I am talking about questions folks on this site might have re MAC or NTM That they have that i would ask during the 7 days with National Jewish.tdrell

Terri, oops! Misunderstood! Good luck! Wrote extensively on my visit today .. but basically STILL STABLE!! YEAHH!! Hugs! Katherine

katemn...so happy for you that you are stable ...when do you have to return to Dr A at Mayos . Just had a thought....Would that all of our doctors would say "you are totally free of NTM....no reason to return"....what a dream at this point !! tdrell

Hi Terri! I do not need to return for a follow up appointment with Dr. Aksamit for 5-6 months .. so probably late April 2017 or so to make sure I am still "stable"!

But don't forget .. we are NOT "totally free of NTM". I STILL have mycobacterium in my lungs currently .. it is just considered "Negative" .. ie .. not colonizing at this time. That is why I/we must continue our follow up appointments with our doctors .. those nasty critters CAN rear their ugly heads again! Because we can become "Stable" after antibiotic treatment as I have been since May 2014 .. but I am NOT "TOTALLY free of NTM" as you mentioned .. or "stable" like some others labeled "Asymptomatic" .. not needing antibiotic treatment at this time. That is why we MUST continue to be diligent in our "self care" .. healthy eating .. exercise .. seeking serenity ie limiting stress that affects the body .. maintaining healthy relationships with others .. being kind to ourselves ie "filling our cups" .. whatever that means to each individual person. THAT dream we CAN fulfill .. self care! .. and THAT I KNOW you are making every effort to do! Hugs to you! Katherine

I am new here and have read all the posts but have not read anything about eye issues until today. Before I was put on " the three," I had to have a baseline eye exam for color vision with a repeat in six months. But more importantly I was not allowed to drive anymore because of the possibility of color changes (not being able to identify a red light). I have not read about any of you dealing with this issue. I am an extremely independent woman, and that was a very bitter pill to swallow! Thank you. Irene

Welcome Irene, SO glad you have found us! Great that you had the baseline eye exam BUT that sounds absolutely goofy that you have lost the right to drive! If I was sitting in your shoes the FIRST thing I would do is go right back to the Ophthalmologist you saw who did your baseline. THEN get a written statement from that Ophthalmologist that CLEARLY says that you CAN identify the color red plus all other colors. THEN get a written statement from your Pulmonologist stating that you do NOT have ANY vision issue that could curtail your ability to drive.

Then take those two written statements to the Driver's License Bureau .. request to speak to a SUPERVISOR .. do NOT be put off by some underling who doesn't have the authority to correct the problem .. remember "The squeaky wheel gets the oil!" .. then when you have the ear of the Supervisor remember "You get more with honey than vinegar!" .. but be FIRM. Indicate that a mistake has been make .. a bureaucratic error that you are SURE he/she will be happy to help you correct with the complete documentation you have brought! Do NOT give up until you have gotten the problem resolved. Keep going higher up the chain until you get results!

Irene, in my opinion there is ABSOLUTELY no reason for this to have happened to you .. UNLESS the Ophthalmologist has already found you have lost your color vision .. at which point .. your Pulmonologist should have taken you off Ethambutol ANYWAY!! Keep in mind that EVEN when I did lose some of my color and distance vision due to Ethambutol .. NO one even suggested I should lose my driver's license. This is ridiculous!

Irene, take the above steps and let us know what the outcome is .. we will be thinking of you! Sending you a hug! Katherine

I have not reported in lately. My last dr. Visit was 1 mo after discontinuing the meds. I'm feeling well. I will see dr. in dec for 3 month check up. Praying I'm still clear. I, too, lost weight after diagnosis and implementation of the 3 antibiotics. I have gained back over 50% back as my appetite has improved. After a while I think my body adjusted to the meds. and I did not feel as tired. As I understand the eye issue, if the Ethambutol does affect vision, it will be a dramatic change. This info was from my Opthmologist during a routine visit. Good to hear from others and feel blessed that I have done as well as I have. My treatment began in June 2015, Negative sputum in August. Took meds. for 12 months after negative sputum. I had a large appearing infiltrate. Each x-ray showed resolution. Last one was completely clear. After reading others stories, I hope I don't have a false sense of security and it will not come back.

Hello Elaine, good to hear from you! It is good for new people to hear that your body DID adjust to the antibiotics .. it gives them hope! For me the Ethambutol vision change was caught EARLY luckily .. so it was not a "dramatic change" in my opinion. But I guess I didn't actually ask the Ophthalmologist that particular question .. for me it was checking my vision against my husband's as we were driving .. noting that he could accurately read road signs before I could. The color vision change knowledge came when the Ophthalmologist checked my color vision .. I don't think I actually was aware of it prior to that. That is why I would tell people to be very aware .. because for me it was not "dramatic" .. yet it took me a year to fully regain my distance and color vision.

Don't be concerned about a "false sense of security" of it coming back. I have been "stable" since May 2014 .. just had my most recent check up last week! NO ONE knows what the future holds .. all we have control of is to take good care of ourselves .. be happy and live our lives as fully as we can! SO glad you are doing well .. put a big smile on my face! Keep us posted! Sending you a hug! Katherine