About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (187)

Sat, Aug 1 4:16pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@ckscoville I definitely wouldn't wait that long. I have atypical cystic fibrosis, MAC and bronchiectasis. My CF doc prescribed my vest and Dornase Alpha Pulmozyme inhalation solution for me after my last major exacerbation in 2018. I haven't had to be hospitalized since then. The Pulmozyme is expensive – over $4,000/month. I'm fortunate that my insurance and supplemental insurance covers it. Definitely something to ask about. Linda

Thu, Jul 16 4:29pm · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

@nina1944 – You wouldn't necessarily need an antibiotic for bronchiectasis so you must have had an infection, I'm assuming to be on one. I too have horrible gut reactions to long term antibiotics. There are enzymes and probiotics you can buy to help with that. What is your doctor telling you? Linda Martin

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