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C

I have had asthma most my life then in 97 I was termed copd. So its emphysema, chronic bronchitis, bronchiectasis and mild PH. I was diagnosed with bronchiectasis in 2015 by ct scan. I never coughed or had mucus unless infection till this happened. Last year March ended up in hospital with a exacerbation and never been the same since. In Oct 15 thru February one infection after another. Antibiotic and pred burst every month. Missing half of my pulmonary rehab each of those months. Asking my pulmo who is over 100 miles away about taking zpak 3 days a week he said no. Well after having so much trouble he finally agreed to it. So I take zpak 3 days a week so far so good off pred totally. I do 7% saline in neb or mycomyst 20 in neb if that dont work but the saline usually does it. Also he doubled my daily vials of pulmicort rather I have steroids that way than pred all the time. I am doing ok I have trouble its not easy but keep plugging along. I go to pulmonary rehab 3 days a week some days are good some are not. Been 4yrs this May since I started. I was wondering about tobramycin for bronchiectasis. Its used for CF but can be used for bronchiectasis. Do you have to prove the bacteria before the pulmo does ok this to use? I also seen a study on the floxin made into a inhaler for bronchiectasis. Its in the works yet. Had to add a nodule we are watching not caner yet just watching. Most of the nodules are not cancer.



Latest Activity: May 11, 2016
17
2 Replies

Replies

L

Hi Cathi,

Not knowing your health issues, I would be a little worried if you are again culturing positive for another NTM bug. What does your pulmonologist tell you? What is the third MAC bacteria? I tend to be a proactive person when it comes to things like this.

Do you have other NTM symptoms like: fatigue, weight loss, fever, etc?

Latest Activity: May 10, 2016
9
K

I have had asthma most my life then in 97 I was termed copd. So its emphysema, chronic bronchitis, bronchiectasis and mild PH. I was diagnosed with bronchiectasis in 2015 by ct scan. I never coughed or had mucus unless infection till this happened. Last year March ended up in hospital with a exacerbation and never been the same since. In Oct 15 thru February one infection after another. Antibiotic and pred burst every month. Missing half of my pulmonary rehab each of those months. Asking my pulmo who is over 100 miles away about taking zpak 3 days a week he said no. Well after having so much trouble he finally agreed to it. So I take zpak 3 days a week so far so good off pred totally. I do 7% saline in neb or mycomyst 20 in neb if that dont work but the saline usually does it. Also he doubled my daily vials of pulmicort rather I have steroids that way than pred all the time. I am doing ok I have trouble its not easy but keep plugging along. I go to pulmonary rehab 3 days a week some days are good some are not. Been 4yrs this May since I started. I was wondering about tobramycin for bronchiectasis. Its used for CF but can be used for bronchiectasis. Do you have to prove the bacteria before the pulmo does ok this to use? I also seen a study on the floxin made into a inhaler for bronchiectasis. Its in the works yet. Had to add a nodule we are watching not caner yet just watching. Most of the nodules are not cancer.



Latest Activity: May 11, 2016
8

Comments

C

Thank you Laura and Kandy, I have MAI, I had a bad bleed in 2014, It was discovered then. No meds were given. In fact, I had no appointment for 3 months. In August 2015, another bad bleed. Had bronchoscopy and cultures sent to Denver. Yes, definite Avian. Definite Bronchiectasis.
No meds then either, even with super bad bleed. I have been seeing same group since 2005. I am worried. This group is the biggest in our area, and supposedly very good. I also have an ID dr..
I have asked for meds when I do cough. They say no. I have life threatening allergies to Clarithromycin and Zpak. I was told nothing else works on MAI, so we wait....I say wait for what?
I now se a nurse, and never the doctor. I know more about my lungs than she ever could. I use no inhaler, nebulizer, oxygen, etc. I walk about a mile or more each day, but I have been concerened for a while, because of the lack of interest in me. I don't know what to do.

Latest Activity: May 11, 2016
5
C

@Cathi No, I have no symptoms, as of yet with this new one. The other 2, I was extremely sick

Latest Activity: May 11, 2016
3

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