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Posts (37)

Dec 22, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

TO THE GROUP! I receive emails from Bronchiectasis today and there was one that was very important to us as a whole! PLEASE READ THIS! There is a FDA decision on a new drug to treat bronchiectasis and NTM. They want our input but we only have a short time to write in. Please go to https://bronchiectasisnewstoday.com and look for the section on FDA and Linhaliq. It will show you the story and how to write into the FDA and the Advisory committee. The more people who input, the better. We have a very unknown and ,to me, ignored disease. We need all the help we can get to fight infections and stay alive and well. The drug would particularly help with PSEUDOMONAS AERUGINOSA, which right now it very difficult to treat! Just please read the story. Have a wonderful holiday season . Fondly, mary Jo

Dec 22, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Katherine, no words for how badly I feel that you are feeling so poorly! Hopefully your visit will provide some answers! Please stay in touch with the group and let us know how you are doing! Fondly, Mary Jo

Sep 24, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Terri .Sorry I took so long to reply! Evacuated, then tried to return home, but no water or electric so headed back to a hotel. But condo is fine. Thank goodness. Glad your place was okay! Did not look good there for awhile.
Guess the excitement and travel did not do well for me. Ended up getting sick and had to bring in my big guns- Levoquin and prednisone. But they helped!
Just curious- on another site, another Bronch person just moved to Vegas for drier air. She lived in South Carolina, very humid. She said she already felt better and less sputum. Would love it if anyone knew if this could help? I looked all over the internet but did not find any proof. Wouldn’t less “stuff” be fabulous?
Thanks for your thoughts Terri!
Fondly, Mary Jo

Aug 27, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the “exophaila”. The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a “black fungus” growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

Aug 24, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi all, have not been on the site in awhile. Have been to Mayo in Florida twice since last checked in. During a bronchoscopy there was evidence of mycobacterium, mine being kansasaii. Also strep and another fungus. Did not see the main bronch doctor there, but was very pleased with the physician I was assigned to. The good thing is that all tests and cat scans are looked at by the head of the department. I was prescribed the nebulizer with saline and aberterol. I am continuing the keflex alternating with doxycycline. I had some problem with the pulmonary function tests so was told to use oxygen as needed. I have found that to be helpful if short of breath from exertion or in extreme humidity and heat. On the recent visit last month, the sputum test did not detect the MAC, so I did not have to do the ” cocktail” again. However, budesonide was added to the nebulizer to try to prevent exerberations. There was a bad one in November with coughing up blood, ugly color sputum and feeling unwell. I cannot compliment Mayo enough. Everyone is so kind there. The physician seems to honestly want to help. I loved his comment, ” I am going to try to make your lungs last as long as the rest of your body”. That seemed like a very good idea to me!
Fondly, Mary Jo in Florida

Jul 6, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I want to add that i spoke with Aerobika early in their release. My original one would ” stick” and not vibrate. They immediately sent me a new one and couldnt have been nicer. They did tell me that after cleaning please use distilled water to rinse thoroughly so Aerobika would last longer and not stick. Mary jo

Jun 21, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

The NAC was suggested by my doctor in Raleigh. I tried it last year and did not see a lot of difference. However, as stated, I think I did not take enough per day. So I am trying it again. I ordered to from Amazon. The Mayo doctor did not think it would be helpful, but would not hurt so I am trying again. Let’s face it- we will try almost anything to try to get our old, normal life back! 🙂 Have a good day. Mary Jo

Jun 21, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Wow, looked up this Ambroxol/Muscosolvan. Very promising. And you say it does help you. I see it is only available in foreign countries. I was thinking I would make a special trip to Mexico just to get it. Then my husband reminded me we are going on a cruise in Sept and it stops in Cozumel! I looked up pharmacies and I am going to call one we have seen in the downtown tourist area and see if they have this product. I am very excited to try it. Fingers crossed. Have a healthy day all. Fondly, Mary Jo