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Thu, May 9 10:40pm · Tobramycin side effects in MAC & Bronchiectasis

I’m sorry you’re going through a difficult time with Toby and God knows we are determined to win. Have you tried calling the nurse? I think it works faster. Also I only do once a day until I can tolerate it better. My doctor said it’s better than not doing it at all. But I always check with my doctor before I make any changes. I believe the best thing for moment is to speak to your dr or nurse especially since you are having difficulty breathing! We are all going to have a different reaction to Toby and some may be able to use it and some may not. So good luck.

Thu, May 9 5:57am · Tobramycin side effects in MAC & Bronchiectasis

auntnanny, I am also on Tobramycin. I had problems with it also. I used for the first month and it was fine but I went back on it I had horrible experience with my throat and mouth. It was difficult to eat and swallow but I also have Sjogrens so it makes hard without saliva. But because I know for myself it is good for pseudomonas and Mac I just wanted to not give up. Spoke to the dr he said stop it and I did for a while. But when I saw him I explained that I really want it to work. He then told try it 7 days on and 7 days off and that’s what I’m doing. It’s working and I am determined to destroy this disease. From my experience talk to your dr and see maybe it’s something else is going on or you can work
Out a different way to use it. All the best

Sat, May 4 8:57am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Terri! Thanks it was very sad. He lives in our hearts forever. They did a biopsy and said it was idiopathic and and don’t know how he got it. He never smoked so I’m not sure how things just happened. I wish we had more options for IPF and NTM. But for now there’s hope. I hope you’re having some fabulous days. I have had a few not so good days but I am getting back on track. Hugs.

Fri, May 3 10:42am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi windwalker and all! This is interesting because IPF reminds me of NTM! I never heard of this disease until I got it! Well in 2002 it was the very first time I heard about IPF. That’s when my late husband of 29 years was diagnosed IPF. We lived in NY at the time and I tried to get him the best doctors in NY. But he did not get a transplant and he died 18 months later in 2004. I hope and pray that this will be available soon and people could get some help. He was only 54.:) life goes on! Rita.

Wed, Apr 24 1:33pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I did this 2 years ago and I also did the vitamin cocktails! I have a lot of energy with them both or maybe just the vitamins but I was tested last year and I was positive for Mac. I spent a whole lot of money on it and also for my daughter. I don’t believe I’ll do it again.

Wed, Apr 24 12:58pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi! I’m not sure if this is the same therapy but I did something called oxygen therapy at Life Works! It’s a place for natural healing. It was infusion like getting an IV. It was for Mac and inflammation and many people did it for Different diseases.

Thu, Apr 18 4:24pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have dr leventhal! He knows more than any dr I’ve seen in the past. He gives me choices and he’s very caring! I see him next month and we’ll discuss treatment for Mac! I hope for the best and see what comes up! I also live in the Tampa area so you somewhat close 🙂