Ever Discouraged Not To Take Antibiotics?

Posted by Beth Kiefer @mrf5629, Sep 22, 2020

I’m confused by my pulmonologist’s discouraging me from taking antibiotics for exacerbation because “based on the CT scan my Bronchiectasis is mild and there appears to be no infection. Even though I religious follow my airway clearance and nebulizer protocols, my sputum had turned from my usual clear raw egg whites consistency to thick, dark colored and very difficult to cough up, and my O2 sats had dropped to 90, so I was asking if I could start an antibiotic. This confuses me because doing a ZPak is the only thing that helps break it up when an infection is starting. Has anybody else received similar advice? It seems so counterproductive to allow the mucus to get thick and damage my lungs further rather than to treat exacerbation early. Most of what I’ve read indicates patients need to get rid of that stuff to minimize the damage.

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@irene5

@derbeltal I can hear your anxiety about all this in your writing. I don’t know if this will provide you with any sort of comfort, but changing the meds can help with ear and eye problems. And for those of us who still struggle like yourself there is always the clinical trial of Arikayce. My own life before MAC and now with MAC and medicine are very different. I think I have gone through the stages of grief ten times over! My doctor at UMASS told me there is also a new drug out there on the horizon not yet approved by the FDA for MAC. Don’t give up! @irene5

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Thanks for all the advice. I just do not know what to do but know the meds are out.

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@derbeltal

Thanks for all the advice. I just do not know what to do but know the meds are out.

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Are you nebulizing 7% saline twice a day by any chance?

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@windwalker

Are you nebulizing 7% saline twice a day by any chance?

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No I am not doing anything since I stopped the meds.

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Hi @derbeltal . I understand your concern with your meds and how they have impacted your eyes and ears. That must be very frustrating.

I am wondering if you've shared these concerns with your doctor and if he/she has made any reasonable recommendations that take your current issues with eyes and ears into account? If not, would you consider having that discussion?

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Yes they know that i can no longer take ethambutol and azithromycin. Seeing two doctors this week as to what we do now.

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@derbeltal

Yes they know that i can no longer take ethambutol and azithromycin. Seeing two doctors this week as to what we do now.

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@derbeltal Eye issues are scary from ethambutol. I wasn’t allowed to drive when I was prescribed it in Tennessee. And I have the color blindness app on my phone. Sometimes dose can affect that side effect. Azithromycin can be swapped for clarithromycin. Dosages and frequency can be a game changer. And Rifampin is not necessarily necessary. Good luck to you. No bueno as one of my children always says – so sorry you are dealing with all this. irene5

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@derbeltal

Yes they know that i can no longer take ethambutol and azithromycin. Seeing two doctors this week as to what we do now.

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derbeltal, sometimes the ethambutol is substituted with amikaycin. I think that is better because you can get the inhaled version that targets the lungs precisely. May want to ask your dr about that.

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Hi, I was recently diagnosed with MAC , was given a choice to try lung hygiene for a while vs. antibiotics. Was told by my doctor that 1 in 5 people can cure without antibiotics.(I would love the link to that study). I am questioning myself now because I got a cold from my grandchild (not COVID-she’s in my pod), and it has ended up exacerbating my Mac, despite 2x daily 3%ns nebs and aerobika. Sending sputum samples tomorrow. Tested negative for COVID

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Hi welcome I recently just joined myself and was diagnosed with Mac myself . my pulmonologist has me on arickayce since dec 16th and I'm just getting to know the medication and its effects of it all. how did they find Mac on your lung? I did 2 lung biopsies one this past June and a bronchoscopy in aug. I was sick back last December with a bad cold which turned into pneumonia which I did not not know I had Mac yet which Meds are you on again for Mac?

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@jr2366 My MAC was always found with a mix of sputums and bronchoscopys, both have to be positive for MAC. The antibiotics I take are Azithromycin, ethambutol, rifampicin, if these do not do the trick then they add in Arickayce. for me Arickayce has the least side effects which is nice. It is quite a journey, hoping for a cure soon. Take care Heather

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