roxanne - what 2 antibiotics are you taking - I got the ok to stop the meds from pulmonary drs. but was told once you have ntm you just have it, so expect a reoccurrence, but if i need a break go ahead and stop the meds. (it has been 16 months now) - but than my new primary doctor calls and tells me DO NOT STOP the meds if I am still living in a house with a bird and he went on to explain about MAI which is the ntm I have and how it is connected with birds, I thought no one has mentioned this before to me - the only time I knew there was a problem with the bird was about 8 years ago when I was tested for allergies and I was allergic to parrots, but this was before I knew anything about ntm.'s, I went to an allergist to see if he could find a cause for the bronchiectasis - the allergist told me to get the bird out of the house or at the very least out of the area of the house I am in most of the time - so Zoey (yellow napped amazon) was moved to the dinning room which is away from my daily life, we got uv filters for the bedrooms and the best hepa filters for the air/heating system and life went on until the MAI showed up, but still no one told me about ntm/mai and the bird connection - anyway I researched on-line and found a bunch of stuff about birds and ntm/MAI - so I am still taking the meds - I will be going to my sisters for 3 weeks, she lives in maryland, I live in florida, while my hubby finds a home for zoey and de-birds the house - So I was wondering which 2 meds you take as I plan to stop the clarithromycin as soon as I get to maryland because that one causes me the biggest problems - so if anyone reads this and has ntm/mai and a bird you may want to say "bye bye birdie" just a bit of humor as I really am sad about Zoey.......norma

hi merry - the side effects got easier the longer I took the meds, but they never just went away - I took my meds in the evening over a 3 hour period and was able to sleep when the worst systems were kicking in, neausea stomach ache just your general felling bad, I did find other ways to cope - I think there was a connection with what foods I ate for dinner because some nights were worse than others but I never really spent much time trying to figure that out, also i found over the counter med called nauzene to be really helpful, ginger tea, and also smelling rubbing alcohol helps stop nausea, a home health aid gave me this advice - so the short answer YES it got better for me - hope it will for you also - norma

As I told before I am on 3 days a week zpak. I didnt know that has something to do with the heart. My pulmo ordered me a EKG and was wondering why. Then he told due to being on zpak have to watch it I guess. My number was 717 and you dont want 800. I never heard about this before. We did echo cause of mild PH wanted it checked have no information on that yet.

Kandy, When I started my clarithromycin (same family as zpak) I had to give up my Celexa (for depression/anxiety) because they told me that both of them can affect heart rhythms. I'm glad your doc is on top of it!

Norma, the clarithromycin is bad for me too and I also take it before bed to sleep through the nausea. But my worst one these days is Levofloxacin (brand name Levaquin). Lots and lots of joint pain.

Levofloxacin levaquin is black boxed antibiotic. There has been many warnings out on that. I have told my drs over and over but they still give it to me. They do affect our tendons. I have taken alot of leviquin over time. It did once the back of my legs hurt so bad I could hardly walk. I had read somewhere if you keep that and pred separate it wouldnt bother dont know if true or not but I have did that would do pred in morning and leviquin at night had no problem. This is only if I have a bad flare up.

Yes, my knees are the worst. Really hard to get up and down stairs. I walk like a zombie and feel like I'm 90! Told the infectious disease specialist when the joint pain started along with swelling of my knees, but they said stay on it. Luckily I haven't needed any pred so far.

Diagnosed with NTM over 2 years ago. I have been on the 3 antibiotics for 2 years. I have a Bronchoscopy with bronchial washes to obtain specimens since I do not have a productive cough. I am still testing positive for NTM. My pulmonologist says to stay on the 3 meds for 1 year after the first negative specimens. I am not having any symptoms except a dry cough.

@Margaret
I also have to go through a bronchoscopy for specimen collection, Margaret. So expensive. My pulmo gave me several sterile specimen containers to keep at home because if I get a cold, it usually results in a nasty, productive cough. So far this winter, no colds!

I never have had a bronchoscopy but think my pulmo should to see what bacteria is down in there. On zpak 3 days a week not sure if you can get a good diagnoses then or not.

hi merry - sorry this took so long to answer - the whole time on the meds was a struggle, nausea being the worst, just not feeling good - towards the end it was almost intolerable for me - had endoscopy which showed chronic gastritis, and a schatzki ring, which they dilated, i think it all was caused by the meds being so harsh, the drs wanted me to start prilosec but i refused because of the side effects they can cause but agreed to take zantac which i still use on an as needed bases - at the time i went off the meds we had also re-homed our bird and by the end of a week i was feeling so much better....i could actually breath through my nose again - all the feeling bad and nausea also left - i do saline neb each night which helps get the goop out, i have noticed the past 2 weeks that i am having more coming up and it is getting back to my hour of coughing every night which can be exhausting - i had talked to my pulmo last visit about 1 week of antibiotics each month (they started this in 2005 when i was first dig. with bronchiectasis, but was stopped as new protocols came out) i have read that some drs and research centers feel this should be implemented again, and i asked my plumo dr about his thoughts, and he still does not like to do the antibiotic treatment unless there have been 2 illness in a year and than the protocol would be azithroymicin 3 times a week.......i did have pneumonia in oct, and bronchitis in nov. but the dr said lets just start counting in jan and so far so good.....no illness dec and jan "happy dance" - i also ask about being sure the ntm was gone or just laying low and he said that there is no way to know and only time will tell, he has patients that go years and some only months before it is back or been reinfected - me, i am shooting for years

prayers to all - norma