Long-term Antibiotics for Bronchiectasis & MAC

Posted by pejohnston @pejohnston, Feb 26, 2018

Diagnosed w/Bronchiectasis in 2008, MAC in 2011 and have been on many medications since then. Under control for several years, but reinfected a couple of years ago while on antibiotics. My body became somewhat immune to some of meds I was on. I am now taking several more drugs that have pretty significant side affects. Fortunately, I've been okay with them. Anyone else been on antibiotics for this length of time?

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@auntnanny

windwalker I just wanted to report that I received a note from Dr Moua in Rochester in response to my recent culture. He says that there was 1 MAC noted but he did not feel it needed to be addressd at this time. I've been fortunate..... I have just shown minute amounts of MaC (so it seems to me). He went on to say that there was an abundance of pseudomos and that he is prescribing two weeks of Levaquin 500 mg. I have just finished 3 weeks of Cipro and am still coughing moderately. So..... going for a different med. Thought you might be interested that again, a Mayo doctor is holding back on the Big Three.

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@auntnanny Did the Levaquin help your cough and what kind of side effects did you have.

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@spencersok

@auntnanny Did the Levaquin help your cough and what kind of side effects did you have.

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spencersok -- I wanted to say also that I've been having fairly good luck just using Benadryl capsules (two at a time). I use two at night and that kind of dries up the nasal drip and helps me get through the night without being awake and coughing. I don't know if it would help anyone else, but it has helped me.

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@spencersok

@auntnanny Did the Levaquin help your cough and what kind of side effects did you have.

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spencersok ---- I'm wondering -- did you do a sputum sample and see exactly which antibiotic might work? I hope your doctor is not just choosing one out of thin air.

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@spencersok

@auntnanny Did the Levaquin help your cough and what kind of side effects did you have.

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spencersok -- it looks like my first post did not address your question. I didn't have any significant side effects from the Levaquin. It helped the first couple of times but this last time, it didn't. Further testing and a cat scan of sinus showed a deep infection that they think is causing the cough at this time. I was told at the ER that it is possibly too deep for antibiotics to reach and I'm set up with an ENT in two weeks to see if they can get it out. But..... I think you'll be okay with 500 mg Levaquin. I tried the 750 once and didn't get along well with it.

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@windwalker

@pejohnston , Hello, and welcome to the Connect community. Do you have a a first name that you would like to use? To answer your question about long term antibiotics; you will see that many of our members are on a long term regimine. Most that are taking antibiotics are taking the 'Big 3' cocktail. People usually are on them anywhere from 18 months to 3 years. I am on a different kind of ongoing regimine. I have been taking alternating singular antibiotics on alternating months. I have been doing this since 2013. It is known as a prophylactic approach. My doctor explained that he liked this approach because it is more tolerable for the organs and prevents the mac from becoming resistant to the antibiotics.

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What exactly is your med regime?

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Help! It's Saturday (of course) and I had chills last night for about an hour starting at bedtime. They subsided eventually and I was able to sleep. I've been on "the Big 3" since September 10. What do you think is going on? Could the chills be a symptom of lung infection from the MAC even though I'm on the meds? If so, what's the treatment? Should I bother to see an urgent care doc today? If so, what could they do for me? To make matters more complicated, my husband is in the hospital today because of a bad fall he took on Monday. He'll have surgery on Tuesday. Should I go to the hospital to see him if I feel well enough or should I stay home? Olivia

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@onana

Help! It's Saturday (of course) and I had chills last night for about an hour starting at bedtime. They subsided eventually and I was able to sleep. I've been on "the Big 3" since September 10. What do you think is going on? Could the chills be a symptom of lung infection from the MAC even though I'm on the meds? If so, what's the treatment? Should I bother to see an urgent care doc today? If so, what could they do for me? To make matters more complicated, my husband is in the hospital today because of a bad fall he took on Monday. He'll have surgery on Tuesday. Should I go to the hospital to see him if I feel well enough or should I stay home? Olivia

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@onana Olivia, sorry to hear about your chills last night, it can be frightening if this is the first time you experienced it. My experience is this - I had chills and hot flash episodes during the day AND at night while trying to sleep. I have heard that either of these could mean active OR worsening infection, but looking at your earlier posts, I think I understand that you've been on the big 3 for just a few months, not nearly enough time to kill off MAC. If the chills come and go, if it were me, I wouldnt go to Urgent Care, but would perhaps call my doc on Monday. I'm also so sorry to hear about your hubby's upcoming surgery and your worry about being there at the hospital for him or not. Once again, and plz correct me if I'm wrong, looking at your previous posts, you have had bronchiestas for years, NTM and lung cavities as well. I've learned thru this site that hospitals and especially ICU's are where theses nasty superbacteria lurk. You may want to BE THERE for your dear husband but he may want you to BE HERE after his surgery and when he comes home. Not trying to be dramatic or frightening, but depending on the stage of our disease(s) it's a deadly gamble for us when we choose to not consider the consequences of our actions. It's a tough call to make I know. My bronchiectisis and MAC/MAI is not at a threatening level yet and I did attend to my partner in ICU twice in the last 3 months. I was praying the whole time that I wouldn't get more sick. It really is a personal choice. I hope you are feeling better re your chills. Love and hugs, Margie

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@onana

Help! It's Saturday (of course) and I had chills last night for about an hour starting at bedtime. They subsided eventually and I was able to sleep. I've been on "the Big 3" since September 10. What do you think is going on? Could the chills be a symptom of lung infection from the MAC even though I'm on the meds? If so, what's the treatment? Should I bother to see an urgent care doc today? If so, what could they do for me? To make matters more complicated, my husband is in the hospital today because of a bad fall he took on Monday. He'll have surgery on Tuesday. Should I go to the hospital to see him if I feel well enough or should I stay home? Olivia

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@onana Hi Olivia. @margiebanks is right; hospitals can be potentially dangerous and in some cases, deadly for people with mac. Visiting him in a regular hospital room may be ok. AVOID the bathrooms in those rooms though. A study showed 95% test positive for lots of mac bacteria in them. I would avoid the pre-op room and the recovery or ICU. Those are the places the Super Bugs are caught. The fact that you are experiencing chills makes me feel like your immune system is struggling. You may want to purchase a N95 paper mask that allows good breathability to protect you if you go to visit him. Wishing him luck with his surgery and that you stay safe.

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@margiebanks

@onana Olivia, sorry to hear about your chills last night, it can be frightening if this is the first time you experienced it. My experience is this - I had chills and hot flash episodes during the day AND at night while trying to sleep. I have heard that either of these could mean active OR worsening infection, but looking at your earlier posts, I think I understand that you've been on the big 3 for just a few months, not nearly enough time to kill off MAC. If the chills come and go, if it were me, I wouldnt go to Urgent Care, but would perhaps call my doc on Monday. I'm also so sorry to hear about your hubby's upcoming surgery and your worry about being there at the hospital for him or not. Once again, and plz correct me if I'm wrong, looking at your previous posts, you have had bronchiestas for years, NTM and lung cavities as well. I've learned thru this site that hospitals and especially ICU's are where theses nasty superbacteria lurk. You may want to BE THERE for your dear husband but he may want you to BE HERE after his surgery and when he comes home. Not trying to be dramatic or frightening, but depending on the stage of our disease(s) it's a deadly gamble for us when we choose to not consider the consequences of our actions. It's a tough call to make I know. My bronchiectisis and MAC/MAI is not at a threatening level yet and I did attend to my partner in ICU twice in the last 3 months. I was praying the whole time that I wouldn't get more sick. It really is a personal choice. I hope you are feeling better re your chills. Love and hugs, Margie

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@margiebanks and @windwalker Thank you for your prompt, thoughtful and caring responses. You speak from experience and heart. I've tried to protect myself at the hospital, but I was the only one in the area who could be with my husband. I just didn't feel I could not be with him. I hope I don't have to pay a big price. The observation that my immune system seems to be struggling is right on. I know I'm exhausted and I know my lung condition reduces my resilience. It helps to hear your voices of wisdom. I pray for wisdom during a challenging time.

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@onana

@margiebanks and @windwalker Thank you for your prompt, thoughtful and caring responses. You speak from experience and heart. I've tried to protect myself at the hospital, but I was the only one in the area who could be with my husband. I just didn't feel I could not be with him. I hope I don't have to pay a big price. The observation that my immune system seems to be struggling is right on. I know I'm exhausted and I know my lung condition reduces my resilience. It helps to hear your voices of wisdom. I pray for wisdom during a challenging time.

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@onana I couldnt stay away either, I do understand. I will be keeping both you and your husband in my prayers. Please keep us posted about his recovery and your continued good health. Hope the chills have gone away so you can rest tonight.

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