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Posts (15)

Sep 19, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Welcome back and glad that you had a good holiday. I feel like I actually have some pretty good news. My ID ordered a CT scan of my chest before my last appointment with him which was about 2 weeks ago. He said that the scan showed that I have no nodules or cavities and that my lungs look good. He and my pulmonologist reviewed my chart and CT scan, and agreed not to start any treatment for MAC at this time, based on the scan and also because I really don’t have any symptoms. They did, however, agree that my pulmo doc will treat my bronchiectasis and the pulmo doc feels that by treating it, that may be all the treatment I will need. I have an appt with the pulmo doc on this Thursday, so am keeping my fingers crossed that he will get me started on the treatment and that I get some relief from the chronic cough and shortness of breath, which really are my only symptoms.

In the meantime, last Friday I had a heart catheterization as I have to have an aortic valve replacement in the next few weeks. I was diagnosed with aortic stenosis sometime ago, and have the cardio doc has been watching it with echocardiograms yearly. Because of this, it is sometimes difficult to tell if the shortness of breath is caused from the bronch or the stenosis.

I feel very encouraged and also fortunate that I am not going through the many symptoms and difficult treatment that many of you are having to endure, but please know that my thoughts and prayers are with each and every one of you. Also, I will continue to pray that a better, more modern treatment and hopefully cure will be discovered very soon. Linda (mimi68)

Aug 6, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I also am keeping all of these messages about how and when to take the meds. It will be helpful for when the doc starts me on my regimin, which should be soon.

Aug 3, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you so much for your kind words of encouragement. I am so happy that I found this blog and signed on. We are all in the “same boat” and it’s nice to listen and talk to others with similar issues. My ID doctor is familiar with this blog and he did put in a good word for it as well.

Aug 3, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I had my first appointment with a new infectious disease doctor that recently moved to our area. He is very familiar with NTM’s and I was able to get a lot of information from him. I have been waiting for the results of the last 3 sputums that have been at the lab for the past few weeks. My pulmonologist has been testing me for MAC since I tested positive on 2 previous sputums. Yesterday, the ID doctor said that the latest sputum tests are showing mycobacterium fortuitum, which is in the same class as MAC, only it is much faster growing than MAC and only requires 2 antibiotics for a minimum of 12 months, taken daily.

He also said there is a possibility that I have both MAC and m.fortuitum. If that’s the case, I may have to take 4 or 5 antibiotics. He also said there is much more research on MAC than on the other, therefore, I haven’t been able to access much on the internet about m.fortuitum. I have a follow-up appointment with him in 3 weeks and at that time he will have a more accurate diagnosis and we’ll discuss treatment.

I’m wondering if anyone out there has been diagnosed with m.fortuitum, and/or if any of you have any information about it.

Jul 23, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I may have underestimated my pulmonologist, as he has set me up with an appointment to see a new infectious disease doctor that has just come into our area. I will see him on Aug 2.

Jul 13, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I asked my pulmonologist about doing a bronchoscopy and he said he didn’t want to as it was too invasive. I have finally been able to get 3 sputum tests into the lab, the last one being today. I should have the results around the beginning of October. I still have no symptoms, and hope that continues. I can see from reading many of the posts that there are lots of people really suffering from the disease and the treatment, and I certainly feel for them all. I hope a better and more user-friendly treatment will be found soon. If my tests come back positive, I will see an infectious disease doctor who is familiar with MAC for a 2nd opinion before going on the treatment.

Jun 23, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Heathert, Since I am new to this site and also this blog, I felt I got some valuable information to discuss with my pulmonologist. They talked about symptoms, treatment, sources from which the infection comes, which some of this is repeat of what I’ve already read. I was mostly interested in the testing procedures for this disease as my doctor is rather set on treating it before we are even certain that I have it. They also talked about ways to prevent getting the infection. I feel that if you have access to SiriusXM, Doctor channel 110, it will be worth your while to listen to it. The part about NTM is about an hour long.

Jun 22, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Jan/GA,
I went into the Doctor channel this afternoon and was able to get the episode about NTM and it came in very clearly. Was able to listen to the whole thing.