Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (15)

Wed, Jun 24 8:29am · Mac + lung cavity in MAC & Bronchiectasis

Sue, its so good to hear from you a 'good new'. I have two pulmys one who is far less experienced with mac than Dr Landa my other pulmy. THe reason for the decline is simply because of the difficulties of staying on it. I actually have a new growth (the hope its a mucous plug) only Im not feeling hopeful. Im scared. Im scared it would mean another biopsy to make sure its mac an not something else. This is why I wonder to get a work up at the Jewish Federation.
I hope i can in a way so to be completley thorough. And I tend to get respiratory infections in the fall and winter so I may decide to do what you brought to my attention and go off them til the Fall only I need to check with my doc The body does and can become resistanct and inconsistency off/on with the big 3 is not the way to go. So lots of decisions to make.
I think your very strong dealing with the pain and I hope the tinnitus has lessened or lesseneds in time. I hope to hear back soon,
Thankyou so much,

Tue, Jun 23 12:28pm · MAC Medication and long term side effects in MAC & Bronchiectasis

Hi Sue, I would first like to thankyou for your throughtful response to my inquiry. Yes I have what seems to be chronic mac at this point. Post the 18mths and a cat scan I have a new growth (I hope its a mucous plug more than likely its a mac growth (I have a fair bit of scarring) and probably not cancer as I have none in my history. Im warned to be very careful due to the pandemic.
I look forward to hearing back soon. (My concern is that its a mac growth that will then require another biopsy (thats how i discovered I had mac thru biopsy) and so then this leads to my query of going to the Jewish foundation in Colorado for an abosolute thorough check up. I look forward to hearing back soon.

Mon, Jun 22 3:22pm · MAC Medication and long term side effects in MAC & Bronchiectasis

Hi Everyone, I wonder if someone can inform me: I have just decreased an 18 month regime of daily big 3 to three times a week to keep away the bugs during covid. My question is to the suceptibility negative effects to the liver, the reduction in bone marrow, and other possible medical issues that can arise with chronicty of mac and on going meds? Does anyone who is without secondary medical issues have any experience of this?


Hi everyone.,
Im taking hikes most days in places where there are few to none! I live alone and everyday feel thankful for the big three ( 3months more to go) I try not to get nervous about it coming back and have no idea of the protocol if it does. I don't think people are allowed to keep going back on the big 3 is that correct? Im kinda nervous.
Im the mean time i bird watch, paint read and play the piano. And general telephone chatter with loving friends.
If anyone has answers to my questions I'm all ears!
Kee safe. Keep Well everyone. We will get through this with diligence through support groups, friend groups and the good doctors we have.

Sep 5, 2019 · Extreme fatigue with MAC in MAC & Bronchiectasis

Im so sorry to hear of all your going through. I can tell you of my experience with MAC that the exhaustion has had serious bouts to the point of barely wanting to or being able to move. My last bout of it I went off the big 3 as prescribed and it seemed to stop the cycle. I think only a pulmy with experience in MAC could tell you whether to get treated. I have a feeling its the meds that cause the fatigue .I could be wrong. ONly the truth is the meds are very strong and everyone has there ways of adapting/ or not, biologically that is. For me I think the meds cause the fatigue only if I get the flu and Im not on the meds I dont pick up again and usually its a sign that the bacteria are still lurking around. The other thing that helps with the fatigue is finding just the right balance of exercise and good solid rest are I think top priorities in steering clear of possible problematic side effects.
I hope you are under good care that you trust and keep up the work, its worth every moment.

Jun 12, 2019 · fatigue and muscle weakeness in MAC & Bronchiectasis

Thankyou Jennifer, When I read your post I felt relief that someones out there and notices and to know you are thinking of me is even though I dont know you is soothing. Thankyou 🙂


Good to hear from you. Im so glad the phnemonia cleared! What's good news is the bacteriais very slow growing so it gives us a chance to make it dealable with. Im on month 7 of big three it's a slog another year to go! Energy levels can really take a swooping slide at times. Getting better though at keeping a 'working modus operandi' going it's a skill! Keep up the good spirits 🙂 Deb

May 30, 2019 · fatigue and muscle weakeness in MAC & Bronchiectasis

Thankyou so much. Another 8mths of the big 3! Does anyone know what cause this immense fatigues? Can it be harmful is the main question? Im so grateful for this o have no family at all no children my dad died this Jan and I have to run a business a home Im grateful I can take off without getting fired!!! It's no joke!