To start or not to start the antibiotics?

Posted by benniej23 @benniej23, Aug 19, 2023

Hello,

I’m a 50 year old female, I was diagnosed with Bronchiectasis last year and MAC a month ago. For about 3 years I haven’t been able to really lay down in certain positions without coughing for 10 minutes. I finally went to have my lungs checked out last year and was diagnosed with Bronchiectasis. My current doc is not at Mayo, but I found this forum because I wanted to hear about others’ experience with the disease.

I’m trying to decide if I should start the antibiotic treatment now. I’m not coughing much these days, I’m eating well and the disease isn’t really interfering with my daily life. My doc said it was fine if I wanted to wait and have another CT in 6 months to see how things are.

I read one of the side effects of one of the drugs is losing color vision and blurred vision. I’ve been profoundly deaf since I was 4.5 years old and it scares me that I might have vision problems from the drugs. Has anyone experienced this? If you stop taking the drugs, does vision return to normal??

I also have acid reflux so I’m worried about how the drugs will affect my gut.

Thanks for any feedback you can give!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

irene5 Irene Estes | @irene5 | Aug 21, 2023

If your doc says it’s ok to wait another six months that’s fine. I waited a bit before starting them mostly because some doctors do prefer to wait and see. We moved away for a year and that state’s and doctor attitude was “We treat here.” Whichever you decide, 6 months with MAC should not be a problem if you feel ok. I never had vision issues on the medication. Irene5

healthybon | @healthybon | Aug 21, 2023

In reply to @irene5 "How are you doing on those two meds Bonnie? Good girl!! I know it’s hard for..." + (show)

Irene, I am in a terrible spot. Maybe you can give me your input. I wrote to Dr Swenson Friday (pulmonary). I’m not sure if it’s the meds. I am so sick Irene. My ears started ringing, hurt inside. My blood pressure is off the charts….my fibromyalgia is off the charts, my hearts pounding, vaginal burning (waiting for insurance co to give me exception for my hormones); tongue hurting burning for ten months now, headache, I feel so damned sick. I’m scared and I feel like I’m slipping through the cracks Irene.

benniej23 | @benniej23 | Aug 21, 2023

In reply to @irene5 "If your doc says it’s ok to wait another six months that’s fine. I waited a..." + (show)

Thanks, Irene! Glad you didn’t have any vision issues on the medication.

irene5 Irene Estes | @irene5 | Aug 21, 2023

In reply to @healthybon "Irene, I am in a terrible spot. Maybe you can give me your input. I wrote..." + (show)

I am soooo sorry Bonnie. Please know this is only my opinion. It seems to me the meds don’t agree with you . Here’s what I would do, and I’m not you. See if because the meds are making you sick you can take inhaled Arikayce. That’s what I did, and it killed the MAC. Arikayce is for people who can’t tolerate the oral pills. It is expensive, but there are many payment options. You have given the meds a try. Good girl for that. Ask about Arikayce. I used that and had no side effects - only one- it finally killed the MAC . Irene

healthybon | @healthybon | Aug 21, 2023

irene how long were you on the arakayce? what side effect did you get? did the antibiotics make you sick irene? i'm so scared.

mimifeels | @mimifeels | Aug 22, 2023

In reply to @rstel7272 "Ethambutol can cause color blindness issues in 5% of patients. Once stopped, the color is usually..." + (show)

Wow, Rick, 40 months! Was it how long it took for you to get rid of MAC?

Rick | @rstel7272 | Aug 23, 2023

In reply to @mimifeels "Wow, Rick, 40 months! Was it how long it took for you to get rid of..." + (show)

My sputum was clear after 6 months, continued the recommend 12 more month, then the CT did not have "radiological clearance" so we continued another 10 months. Stopped for 6 months then symptoms came back and them up again for 12 more months. Turns out the recurrence of symptoms was not from MAC but Aspergillus. I also have cavitation, scar tissue, Bronchiectasis, COPD, emphysema and even some Alpha-1. But I get along Ok, I played 18 holes of golf yesterday in 96 degree weather.

alleycatkate | @alleycatkate | Aug 23, 2023

Hello All,
I've come across an article for anyone taking antibiotics regarding foods not to eat that will bind to your antibiotic and make it less effective.
https://www.samhealth.org/about-samaritan/news-search/2022/10/07/antibiotics-foods-to-eat-and-foods-to-avoid#:~:text=Multi%2Dvitamins%20and%20antacids%20%E2%80%93%20These,and%20keep%20it%20from%20working

alleycatkate | @alleycatkate | Aug 23, 2023

In reply to @irene5 "I am soooo sorry Bonnie. Please know this is only my opinion. It seems to me..." + (show)

@irene5 You have rid yourself of MAC!!! Wonderful News!!! Hope you are feeling good.....my very best to you.
Kate

sue22 | @sue22 | Aug 23, 2023

In reply to @rstel7272 "My sputum was clear after 6 months, continued the recommend 12 more month, then the CT..." + (show)

Hi Rick
That is such a prolonged period of MAC treatment. Very sorry to hear you went through that. During the second 19 month period and again another 12 months were you just symptomatic of we’re you having any positive cultures for MAC? And if you were doing sputum cultures during those 2nd and 3rd rounds, did Aspergillus keep showing up?
Thank you if you want to share.