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How MAC patients have tolerated taking the 3 antibiotics
sallyb827 | @sallyb827 | 17 minutes ago
I was diagnosed with Bronchiectasis and MAC in 2017. CT scan showed improvement in 2020. Now the CT scans and breathing tests indicate the disease is worse and the Docs want me to start the 3.
I am terrified of taking 3 antibiotics a day. I have IBS-D already and 3 antibiotics a day will make it worse. I fear living my life in the bathroom.
How have other people tolerated the antibiotics?
I have started exercising pretty heavy again ( slowed down during COVID) to move the mucous and bacteria out.
I take a lot of natural supplements including Enteragam(prescription drug) and probiotics daily. It keeps my IBS under control.
Any comments on how you tolerated the 3 would be helpful!
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I would be more terrified not taking the antibiotics. I formed a 10 cm cavity in my upper left lobe waiting to start treatment. I've been on the big 3 and only had a bit of "bathroom" issues but nothing that Imodium didn't help.
I also do the inhaled Arikayce, nebulize Levalbuterol and Saline twice a day with lung clearance.
Best of luck through treatment. It's do-able.
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5 ReactionsAny side effects from the Arikayce? I’m scared to death to start my treatment after reading all the side effects
I couldn’t handle the 3 drug therapy so discontinued the riamfaprim. Sadly after 18 months of taking antibiotics I still have Mac. I’m about to add to the therapy arikaycee along with another 18 months of antibiotics. I’m scared to death of the side effects of the arikaycee. And who knows how my gut microbiome is😢
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1 ReactionI have been on Arikayce for 3 weeks and haven't experienced any side effects so far. I am far less fatigued and coughing less during the day so it seems to be helping. I am aware of the negative side effects and what to watch for but concentrate on all the encouraging reports I have read and maintain my hope that this will make a difference.
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3 ReactionsThank you for encouraging words
I wish you the best!
It takes some getting used to. Coughing alot during treatment is typical at first. I also lost my voice for several days but it resolved. I found doing the treatment at night and gargling with really warm water after removes any medication off the vocal cords and allows them to rest during sleep. It really was a game changer for me in improving my condition
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5 ReactionsI took all three with dinner on a daily basis since July 25. I take clofazimine instead of rifampin. So far I have not lost my appetite.
I also paid a lot of attention to what I eat. Usually if they are not the right food, my abdomen will feel it, and then I cut it off or reduce the amount. I have sensitive guts so I have to eat the right food! Then I am fine.
I took a gluten free, dairy free supplement to help with gut lining. But it caused foot burning sensation so I don't take it any more.
Great to hear everything is going on right! I am on Amikacin for 10 days, except my ears feel heated up sometimes, I don't feel anything wrong. Do you have the same feeling with your ears? Are you taking any supplement to help with it? I am taking NAC and Glutathione, both are strong antioxidant.
Thank you no other side effects?