Sorry to hear you are struggling. Wishing you to feel good! I haven't been on the big 3. May I ask if you were symptomatic in any way before starting the antibiotics?
I had Covid twice in 1 year-hospitalizations both times. 2nd time I had pneumonia. I have lots of Long Covid symptoms, (fatigue, muscle pain, etc). Have been of oxygen with activity since 2nd Covid. Terrible cough, and diagnosed with bronchiectasis and then MAC.
Tree in bud CT’s with positive sputum. When I think of 18+ months of feeling so sick with the treatment, I’m not sure I can do it.
I had Covid twice in 1 year-hospitalizations both times. 2nd time I had pneumonia. I have lots of Long Covid symptoms, (fatigue, muscle pain, etc). Have been of oxygen with activity since 2nd Covid. Terrible cough, and diagnosed with bronchiectasis and then MAC.
Tree in bud CT’s with positive sputum. When I think of 18+ months of feeling so sick with the treatment, I’m not sure I can do it.
How are you taking them? All together or spaced out? With food? And are you taking probiotics? Are you 3x per week or daily. Your Dr may be able to adjust things as needed to help. Agree they are difficult to tolerate for many people. My ID Dr has me space them out instead of taking them all at once and I do feel like taking the probiotics helps. He did provide guidance for a FODMAP diet if needed but I haven’t gone that route. Good luck, it’s tough and you’re in good company with lots of support here.
Hello all, I've been on the Big 3 for a few weeks. My ID started me on my first antibiotic for a week and then added the second, followed by the third. I take them at night an hour apart before bed. I haven't experienced any side effects thus far. Today, he asked if I wanted to add on Amikacin IV, 3m times a week for 12 to 16 weeks. I am taking this week to do research and this website has been very helpful. Though I'm finding air clearance to be so effective for my breathing and also my state of mind. It gives me a sense of being able to help my lungs and physically I always notice improvement upon completion.
I was told to take them with my evening meal. I do take a probiotic and eat things like sauerkraut and yogurt.
I spent yesterday in the ER. Got super sick Sunday evening -couldn’t keep anything down for two days. Teeth chattering chills. I also have Long QT and that was really high, so I got fluids, potassium, magnesium IV.
Was told to go off both rifampin and Azithromycin for now. I have a virtual appointment with ID doctor tomorrow. Not sure where to go from here, but this is no way to live.
I got the worst flu symptoms from Rifampin after 2 or 3 days, I was so sick. My idiot ID doc told me to stop it for 3 weeks and start again in case it was just the flu… of course I got worse reaction. I no longer go to him.
I got the worst flu symptoms from Rifampin after 2 or 3 days, I was so sick. My idiot ID doc told me to stop it for 3 weeks and start again in case it was just the flu… of course I got worse reaction. I no longer go to him.
Nancy- FYI: Many on the site have stated that they are not being required to take Rifampin with the Azithromycin and ethambutol. I also was not prescribed the Rifampin to take when Dr. McShane suggested I go on the medications.
Have you noticed or been able to read about Rifampin and what others have said, lately, on the site here about what they have been told to take, the medications.
Also, are you seeing someone who you believe stays abreast of what is new and most recent in the medications for MAC/Bronchiectasis. This does make a big difference for us.
Barbara
I am seeing ID and Lung doctors at Mayo, so feel like I am in good hands. I took medications exactly as I was told, but had major issues with first the ethambuthal and then the Rifampin.
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Sorry to hear you are struggling. Wishing you to feel good! I haven't been on the big 3. May I ask if you were symptomatic in any way before starting the antibiotics?
I had Covid twice in 1 year-hospitalizations both times. 2nd time I had pneumonia. I have lots of Long Covid symptoms, (fatigue, muscle pain, etc). Have been of oxygen with activity since 2nd Covid. Terrible cough, and diagnosed with bronchiectasis and then MAC.
Tree in bud CT’s with positive sputum. When I think of 18+ months of feeling so sick with the treatment, I’m not sure I can do it.
How are you taking them? All together or spaced out? With food? And are you taking probiotics? Are you 3x per week or daily. Your Dr may be able to adjust things as needed to help. Agree they are difficult to tolerate for many people. My ID Dr has me space them out instead of taking them all at once and I do feel like taking the probiotics helps. He did provide guidance for a FODMAP diet if needed but I haven’t gone that route. Good luck, it’s tough and you’re in good company with lots of support here.
Hello all, I've been on the Big 3 for a few weeks. My ID started me on my first antibiotic for a week and then added the second, followed by the third. I take them at night an hour apart before bed. I haven't experienced any side effects thus far. Today, he asked if I wanted to add on Amikacin IV, 3m times a week for 12 to 16 weeks. I am taking this week to do research and this website has been very helpful. Though I'm finding air clearance to be so effective for my breathing and also my state of mind. It gives me a sense of being able to help my lungs and physically I always notice improvement upon completion.
I was told to take them with my evening meal. I do take a probiotic and eat things like sauerkraut and yogurt.
I spent yesterday in the ER. Got super sick Sunday evening -couldn’t keep anything down for two days. Teeth chattering chills. I also have Long QT and that was really high, so I got fluids, potassium, magnesium IV.
Was told to go off both rifampin and Azithromycin for now. I have a virtual appointment with ID doctor tomorrow. Not sure where to go from here, but this is no way to live.
Curious how many here have had to discontinue treatment because of side effects.
I got the worst flu symptoms from Rifampin after 2 or 3 days, I was so sick. My idiot ID doc told me to stop it for 3 weeks and start again in case it was just the flu… of course I got worse reaction. I no longer go to him.
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1 ReactionWas it stomach like flu? I have had no diarrhea-just feel weak, nauseous, and sick
Nancy- FYI: Many on the site have stated that they are not being required to take Rifampin with the Azithromycin and ethambutol. I also was not prescribed the Rifampin to take when Dr. McShane suggested I go on the medications.
Have you noticed or been able to read about Rifampin and what others have said, lately, on the site here about what they have been told to take, the medications.
Also, are you seeing someone who you believe stays abreast of what is new and most recent in the medications for MAC/Bronchiectasis. This does make a big difference for us.
Barbara
I am seeing ID and Lung doctors at Mayo, so feel like I am in good hands. I took medications exactly as I was told, but had major issues with first the ethambuthal and then the Rifampin.