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Posts (172)

Thu, May 23 8:30am · Negative sputum results without treatment in MAC & Bronchiectasis

Oh @jkiemen Jo Ann…I am so very sorry to hear your news on the MAC still being active. How difficult. Terri's thought was interesting…wondering if you have discussed an alternative treatment option with your Dr.?? I wish I could add good advice other than try to stay strong and positive. My heart goes out to you and my thoughts and prayers are with you also. Keep fighting the fight.

Wed, May 15 1:13pm · Negative sputum results without treatment in MAC & Bronchiectasis

@pfists Shari, That is very exciting news. It sounds promising!

Tue, May 14 9:23am · Negative sputum results without treatment in MAC & Bronchiectasis

@windwalker …thanks Terri….I will check it out!

Tue, May 14 4:49am · Negative sputum results without treatment in MAC & Bronchiectasis

Just saw this article on the positive effects of NAC on bronchiectasis. I have taken this supplement for several years and seems helpful. https://bronchiectasisnewstoday.com/2019/05/09/n-acetylcysteine-potentially-beneficial-bronchiectasis-patients/

Mon, May 13 5:27pm · Negative sputum results without treatment in MAC & Bronchiectasis

@sayaboleh Mary…Hello! I was looking for the original post (yours) mentioning the sputum conversion but could not find it. Your posting was the first that I had heard of this possibility and it is so very promising. I wonder why it is not more publicized? It does give a lot of hope. I appreciate your wake-up on this possibility. Thanks You! Kate

Mon, May 13 10:16am · Negative sputum results without treatment in MAC & Bronchiectasis

@pfists @windwalker Regarding the 40-60 conversion sputum rate, I was happy to find the following article that helps substantiate those numbers. https://www.ncbi.nlm.nih.gov/pubmed/28275170


@jkiemen Hi Jo Ann, I had the same issue with my insurance. I did find a Dr at Mayo that I wanted to see (excluded from my ppo) and asked my primary care physician for a referral. Then called my insurance and told them the only Dr available on their list was not helpful and I needed a second opinion…It took a while but they made an exception. Problem was that they would not pay for tests done at the facility on the spot….I called the Dr office at Mayo and explained the situation when I made my apt. I asked what the Dr would most likely want to see in the way of tests and got my primary to write the script for a catscan. I had already had a bronchoscopy with a diagnosis of MAC. Just brought all of my paperwork with me and had the scan on disc. It was a roundabout way to get to Mayo but sure made me feel better and rest easier. I know that if I run into problems in the future, I will probably have to change my insurance to include the Dr at Mayo as I am most uncomfortable with the pulmonologist on my insurance. I am fortunate that my case is mild. At least my insurance was somewhat flexible. Good luck in finding a Dr to take care of you….If this doesn't work for you, I really believe that it is so important to trust the Dr that has direction over your well being and it might be worthwhile just to bite the bullet and go out of network. Wishing you the best. Kate

Fri, Mar 15 2:17pm · health at diagnosis in MAC & Bronchiectasis

@nannette, @windwalker Sleep is so important. On bad nights I was actually sitting straight up too. I was so happy to get
Dr Leventhal's directive on the Acid reflux…I had been to my GI Dr and he was just trying to push meds which I refused. This was such a simple solution that I almost did not believe that it would work as I had tried so many other approaches. I am thrilled that it has (along with cutting out trigger foods) Anyway, Nan, if you still have the reflux maybe you could try a lower wedge or maybe one of the memory foam ones might be more comfortable???…..Just a thought. Good luck! It is always a dance. Good health to you both! Kate
Windwalker….haha…the pet cuddling might just be the most important part of therapy in my opinion. You would have died laughing seeing my bed at one point with 14 cats roaming and cuddling during the night. (tolerant husband) Thankfully, I am down to 2 cats in the bedroom now.