We all need each other and encouraging one another is one of the greatest tools to keep us going. I am blessed by your courage!!! Hugs
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Fri, May 31 10:47am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis
I do remember having flu like symptoms also. Rifampin did make me sick 🙁 MAC makes us sick. Grateful for this group and help from Windwalker (Terri) I am much stronger. I have a lot going on in my body and sometimes I feel like staying in bed all day but when I think of how many of you are going through difficult times… I get going and I know and hope we will find a better way to treat Mac. My prayers for us all to keep going!!! Hugs to all! Rita
Mon, May 27 10:43am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis
Hi, I have been diagnosed with Mac and some of his friends 🙂 6 years ago and I am on the same dose of synthroid and never had a problem. Some of us can’t use the generic and need the real thing! Also it’s very important to talk to your doctor because if your thyroid is not functioning! You are not going to function also!! All the best 🙂
Sun, May 26 9:04am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis
Hi! When I took the big 3… I would wake up around 5:am and take my Synthroid and it worked well. It was 3 hours away from the big 3. But I am not sure the time you’re taking yours.
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.
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.