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.

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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@crepass

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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Crepass, let's begin by taking it as a given that you're gonna be one of those "1 in 5." The thing is, 3% saline concentration is to 7% what O'Doul's is to Brewmeister Snake Venom beer. My apology for any discomfort caused by the metaphor, but three percent is a weak sister. Try it. I think you'll feel the7% announce itself in your throat right-off-the-bat. Don

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@crepass

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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@crepass Hi and welcome to our group. I'm attaching a link to an article that shows the efficacy of different saline solutions. If you drop down to chart 2 it shows that MAC is eradicated by a 6% or greater solution of saline. (I use 7% saline) This is a study done invitro but I like to think it corresponds to our lungs also. I was diagnosed with MAC and Bronchiectasis several years ago and have done beautifully with just nebulizing. Since your Dr is giving you the option of meds or lung hygiene it sounds that perhaps you have a mild case as I do. I would love to see that study that says 1 in 5 can be cured without antibiotics….any chance you could find out what the study was and share? I wish you good luck on your journey….and with knocking out your cold. Best of luck. Kate
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/

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@heathert

@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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I see ok I wonder why my dr put me on Arikayce only yes Ive been through so much this past year 2020 how long have you been on your medication? I started dec 16th 2020 I’m wondering how long it takes for the medication to start working also. Good luck to both of us hope your side effects are not bad do you have any. After a week on Arikayce I lost my voice it’s starting to get little better now I gargle after treatment/nebulizer and I eat lozenges which helps as well.

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@jr2366 This time I have been on the big3 meds for a few months, daily, and they have lengthened my Heart QT interval which is a pain, however the first time I had MACMAI(Intracellulare) I was on 3 antibiotics for 5 years and at first I was only on them 3 times a week which was awful, lots of side effects, GERD, queasy tummy, tiredness, achy, just awful. For the loss of voice on Arikayce I used strepfen (lozenge, buy online) which were fantastic, I would wash mouth out and gargle (water)after Arikayce, nebulize Arikayce just before bed so I didn't have to talk after. I am not sure how Arikayce will take to work, I had mine along with 3 antibiotics and it took around a year to 18 mths, I was in the trial for Arikayce(then called Amikacin) I feel that the Arikayce did the trick. Please let us know how you get on, just with the Arikayce. Take care Heather

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@crepass

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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I stopped the antibiotics in December 2019, while still positive for MAC but asymptomatic because the antibiotics were wreaking havoc with my system and my life.
I went on 7% saline nebs with Aerobika plus levalbuterol as needed. I have had no recurrence of MAC symptoms and fells 95% better – not sure if there is still MAC in my lungs, but it certainly has not progressed with the saline regimen. I don't have the cite for the paper your doc referred to, but will find it later today or tomorrow.
Sue

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@jr2366

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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Hi , I also had a flu relapse last January. Ct scan in January and July verified and two sputum samples. Showed MAC. Just using symbicort and 3% ns nebs and aerobika and Pepcid for reflux.

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