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Sun, Jun 21 2:04pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@pamelasc1 – That's a new one on me! Keep us posted please and good luck with your healing. I'm glad they figured out what was causing your symptoms. Linda

Thu, Jun 4 5:04pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@lorifilipek – Of course! I talked to my CF doctor yesterday on our teleconference call and mentioned this to him. This is not yet FDA approved but has been given orphan status so that it can be fast-tracked for development. Still encouraging!

Mon, Jun 1 2:19pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Good information in my cystic fibrosis newsletter that applies to infectious disease patients also. It interferes with the formation of biofilms which protects the bacteria which forms in our lungs when infected. https://cysticfibrosisnewstoday.com/2020/06/01/pravibismane-granted-fda-orphan-drug-designation-for-cf-lung-infections/
Be well~ Linda Martin

Dec 10, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi, Everyone, I haven't been active in a while but follow all the emails. I thought I would check with my MAC community to see what compressors you use if you do nebulized solutions. I have had the Pari Vios and the Pari Trek for travel for a few years. I'm on my 3rd Vios compressor as they tend to lose force. My treatments are much longer than the typical 10 mins per med. Their customer service has been great in exchanging at no cost to me but my last one only worked at peak performance for a few months and I'm tired of dealing with it. Anyone else have good luck with other brands? Would love a quieter one as well! Linda M

Apr 24, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@sounder27 I looked into the stem cell therapy at the Lung Institute a few years ago. I talked to my Cystic Fibrosis doc about it and he asked me questions that I wouldn't know to ask. I asked them of the rep I spoke with at the Institute and here is what I found out: The trial that they did was very small so results are inconclusive. The white paper they have has never been published. My doc says that because they are injecting the blood into your arm instead of directly to the lungs, you can't be certain how much of it gets to the lung tissue. In other words, a very expensive procedure with little chance of success. I have bronchiectasis, MAC and CF. Linda

Jan 23, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@america – I just Googled the name when I couldn't find on Amazon. You will see options for ordering when you do that. Let me know if you still don't and I'll try again. I've never ordered but wanted to have the info for if/when needed. Linda

Dec 7, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@anniepie I had tinnitus off and on from back in the early 1990's. It was never too loud and would go away often for long periods of time. My tinnitus became pretty severe this past summer and it is either from the azithromycin or tobramycin – it began when I was finishing up the Tobi and starting on the azithromycin, so I'm not sure which one got it going but now it's loud and almost constant. I have learned to ignore it a good deal of the time, but sometimes it's just not possible. Just another new "normal." I have seen a commercial on TV about a group that can help people with this and read an article about it. If you Google, you can probably find some information but my ENT told me it is what it is. Linda