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Mon, Jan 13 8:06am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

THanks for this info Sue: so if I took off my shower head and boiled it, would that get rid of any MAC? If so, this is a better solution than having to replace it. Pam

Sun, Jan 12 8:44am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello and thank you Sue and others who replied to my question about using a Britta filter: my tap water is from deep water wells run by the town… so it is municipal. Thanks to your answers I will not longer drink the water cold from the Britta. However, if I pour it in the tea kettle and bring it to a boil , do you think it is safe? Or should I boil it twice? Pam

Tue, Jan 7 7:58am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello – I have a question about using a Britta water filter. Is there any reason NOT to use the Britta? Pam in Sudbury, MA

Wed, Jan 1 9:18am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Irene – thanks so much for sending more information. I will pass this on to my friend Bonnie, who will be joining us at some point. (I have to show her how to navigate the system.) I am so sorry for all that you have gone through with this; I do know that Bonnie will find some comfort in knowing she is not the only one with these sorts of symptoms. Are the doctors you mentioned ones you have worked with? If anyone else has anything else to offer on my questions, I would greatly appreciate hearing from you. Thanks so much, Pam

Dec 31, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Irene – thank you for responding… can you give more information as to how you dealt with learning that your MAC was still there after a year of the Big Three regimen? What did you do at that point? And what did you do when you had the very strong pain in your lungs but had no cough? Were you able to resolve any of these issues? Pam

Dec 31, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Terri and others – this is Pam in Sudbury, MA I have just met someone who has recently moved to the Boston area and she is dealing with some serious issues with her MAC. I told her I would reach out to my group at Mayo to see if any of you have any experience with the following:
She was diagnosed with MAC last year and began the 18 month treatment. But as of a few days ago, her doctor called to say that the MAC is still there (she has been on the meds for 12 months now). She knew something was not right as her lungs were really hurting, especially at night. She has never coughed with her MAC; she just has searing pain that moves around in her lung area. She thinks it is Intercellulari, but she is not 100% about that. The last test was sent to NJH. She says that nothing will make her cough ( she has tried saline, etc.) so she feels the infection is very deep. She is going to try the vest soon. While I help her find a new doctor here, she has no idea what she is supposed to do at this point. Here are my questions:
Has anyone had the MAC come back while taking the 18 month regimen of meds?
Has anyone had the symptoms she has with no cough but serious lung pain?
Can anyone suggest a new “route” to take? She is very scared. She has already signed up for a phone consult with Jewish. I would be most grateful if any of you can address my questions so that I can pass on something to give her hope. Thanks so much, Pam

Aug 20, 2019 · N-A-C and apo-Lactoferrin helping MAC and Bronchiectasis in MAC & Bronchiectasis

To Eileen and to all of my Mayo Connect Family – as to taking NAC (the same one you take) – I have been taking this since January 2019 and when I went in for my usual breathing test in April, I was up 30% from the last 3 tests. I was amazed as the NAC was my only "new" supplement. Clearly it has had an affect on my lung capacity. My lung doctor at Brigham and Womens in Boston told me to keep taking it ( I take two a day); he was aware of NAC but really did not have a lot of information on it for those with MAC, bronchectasis and psedemonas ( all 3 of which I have had or have) . I know doctors at one of the major hospitals in San Francisco have just begun studies on NAC with patients with lung issues – It will be interesting to see how that tracks over the next few years. I have decided to take it for the rest of my life. As to the coming winter ( when I usually get very sick with pneumonia from catching colds from little children) I will be interested to see if I get as sick as I was last December and January, before adding NAC to my regimen. I take one in the AM and one in the PM – I open the capsule and dump the powder into a small glass of smoothie – it has had no side affects for me. I still take 2 puffs of Symbicort twice a day and one puff of Encruse daily. I have another breathing test later this month and I was waiting to see if my lung capacity was still 30% better before writing to the group. Thank you Eileen for this post. I will let you know more after I have the test in late August. Pam

Jan 25, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks so much for this info on taking Clear Lungs. I did call the company and they said it was fine to mix the powder in yogurt or applesauce, so I have done that. I will hope I see a difference soon! Best to you, Pamela