My MAC and bronchiectasis treatment

@marthachs Hi there. I always worry too about people stopping their meds completely when they have finished their time. My dr was a firm beliver in 'maintenance' meds; which is what I am on now. (You can click on my photo icon and read about that) His philosophy was that mac usually returns because the reason you got it in the first place hasn't gone away, i.e. bronchoectasis.

Thanks Terri. I brought in a sample on 1/29, first one since October, and, no surprise, I haven't heard anything yet. You may recall that Dr McShane left ME (waaaa!) for Tyler so the specimen sample was given to my general pulmonologist. Unfortunately, it appears that she only ordered the test for ntm and I also had pseudomonas and klibsiella. Those were gone for several months but I continued treating with Arikayce which I had to stop at Christmas. I'm concerned with whether they have come back and hoped for good test results but no test = no results. Sigh.

Dr. Mcshane is going to treat me from Tyler. I was waiting for test results but I'm going to reach out to her this week. I need to get her contact info in Texas from her nurse.

I use a Smartvest, aerobika and 3% saline 2x per day. My lungs which are compromised with severe chronic bronchitis as well as bronchiectasis cannot tolerate 7%. Rita

Rita, it sounds like you need to take the bull by the horns and INSIST your sputem be tested for the things you have had before, along with a suseptibility test. And INSIST on it being sent away to either Tyler, Mayo, or NJH for lab testing. Local labs like Labquest, etc., do not cut it.

Terri thanks for your interest. My various organisms were susceptibility tested at NJH and Mayo last year. Azithromycin and ethambutol were effective against my MAC and my sputum samples have been negative since last summer. Arikayce was effective against both pseudomonas and klebsiella.

The testing for NTM requires that the sample be "washed" of all other bacteria prior to culturing. So, it is too late to test for these other bacteria with this specimen. I am waiting to hear what Dr Mcshane wants to do about future testing, i.e. will my samples be tested at U of Chicago or will I send them to Texas.

I first saw my new doctor at the University of Chicago in 2010 for a second opinion with respect to my shocking diagnosis of copd and bronchiectasis. Her opinion was that I was receiving optimal treatment from my Northwestern pulmonologist. Because all of my other doctors were, and are, at the more convenient Northwestern campus, I stayed there until the radiologists who interpreted my many ct scans reported that my nodules were indicative of mycobacteria. My Northwestern pulmonologist disagreed with the radiologists and said it was the bronchiectasis spreading. When she refused to test my sputum, I made an appointment for treatment with my second opinion doctor at the U of Chicago. At my first appointment with her, she gave me a specimen cup. When the test came back 7 weeks later positive for MAC in November 2018, she immediately referred me to an ntm expert, Dr Mcshane, who recently left Chicago for Tyler.

My pulmonologist is not an ntm expert and has no interest in becoming one. She is, however, a copd and bronchiectasis expert and, as a full Professor, teaches those diseases and mentors students in the U of Chicago Medical school. She told me that she will treat my underlying diseases but, if it doesn't work out with Mcshane in Texas she can refer me to an infectious disease doctor at the U of Chicago. She said that was her usual practice with patients who test positive for an ntm and that is what she did in referring me to Mcshane.

I'm sorry this is so long but I believe you have the wrong impression of me. The bottom line is that due to Dr Mcshane's treatment, I have been negative for all the crud that has shown up in my specimens since last summer. It is really bad luck for me that she left before my year of negatives was up. Rita

Thanks again, Terri, and Sue as well, for your interest and support. You're the BEST!

I talked to Dr. McShane in Texas yesterday and she reassured me that she will treat my bacteria from there. The concierge at Tyler has contacted U of Chicago and Dr McShane's records with respect to me are being sent. I hope she will have all the test results, including ct scans and the bronchoscopy as well as her notes. Everything from the year I saw her here. I am so very glad to be her patient because she is such a great doctor and we have a wonderful rapport. We are in agreement with respect to everything, including my water aerobics in an indoor pool, my use of tap water and that my U of Chicago pulmonologist has no interest in treating lung bacteria.

I was anxious to hear what Dr. McShane would say with respect to my stopping Arikayce at Christmas. She said that I was right to stop and she does not want me to take it again. However, she wants me to continue the oral antibiotics until June, one year after the first negative. She had said that I might be able to stop earlier but has decided that she wants me to have the full treatment so long as I am tolerating the drugs.

I will be sending my sputum samples to her in Texas and will send one for that second test that wasn't ordered in Chicago. She said that, after two weeks at Tyler, she knows that the lab receives samples from all over but she doesn't know the procedure. She will find out and let me know.

As for going to Texas, I told her that, if she believes it is necessary, I will come. But I don't want to!

It was wonderful to talk to her again. Rita

Hello Rita, I wonder if you could share why your arikayce med was stopped. I have been using my Aricayce nebulizer every other day for 4 months now and will see my pulmonologist in March to review. I will be submitting a sputum sample tomorrow., but it will really be too soon to expect any results. Best to you, Candy, ( sounder).

Hi Candy, when I started Arikayce daily in July it triggered an exacerbation of my copd (chronic bronchitis) after only 5 days and my doctor said to stop. It took a couple of weeks to be able to resume some activities. On August, my doctor told me to try it again but only 3x per week or every other day. I opted for 3x per week and it seemed fine for a while.

In December, I realized that I was almost homebound. It crept up on me slowly. I forced myself out for errands and occasionally to my health club. But I had a dogwalker for all 3 walks. I also was coughing up what I called marbles of mucus and once I thought I had broken a tooth again but it was a thick sputum glob about the consistency of a gummy bear. I basically sat on the couch watching television or reading.

I stopped at Christmas. I know some people thought I shouldn't quit without talking to my doctor but it was impossible to reach her until after Feb 1 because she was moving to Tyler. Also, I was negative since last June so I was using Arikayce as insurance and also to kill pseudomonas and klebsiella which had also been negative for several months.

My breathing has improved a lot since I stopped. I'm back to walking the dog all 3 walks and going to the health club for water aerobics 3x per week. I'm also getting some things done in the house when I'm not totally fatigued. I still spend way too much time on the couch though. So tired!

I hope my relating my experience helps you. It's a fantastic drug and I believe the only drug developed specifically to kill ntm's.

Thanks Rita, I am using the Aricayce every other day. I am not coughing at all... well maybe just a bit when I’m using the nebulizer. I had bronchitis before the holidays and coughed up quite a bit at that time but it has been difficult to cough up any sputum samples since then. I am so glad that you are doing so well at this time and can be so active. I am still designing kitchens part time, but I find that deep exhaustion is sometimes debilitating. It is disheartening since I used to teach aerobics and yoga before I was diagnosed with ntm/ Mac.
Best and continued good health to you, Candy, ( sounder)