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How many have had the Big 3 cure, then relapsed?

MAC & Bronchiectasis | Last Active: Jul 22, 2023 | Replies (19)
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@healthybon

Hi Sue,
I guess I’m not as brave as a lot of our fellow bloggers. I know I have written to you many times. You seem knowledgeable and strong.
I’m struggling Sue, really badly. Mentally. Since I saw Dr Swenson the other day. He said he’s concerned…..

Maybe you can share with me how you deal with all of this.. I just got Diagnosis this past year. Dr Swenson wants to start me on Azithromycin and ethambutol, slowly because I’m so sensitive. I guess he feels the MAC needs to be treated so it doesn’t turn into cavities etc. I am so terrified….I can hardly function. My reaction to antibiotics is not good…I get so sick. The thought of being on them for such a long time freaks me out. It’s like I’m boxed in a corner.
My entire rib cage hurts and he feels the infection and inflammation is exacerbating my costochondritis. When I wake up in the morning and open my eyes, I am immobilized with fear at the prospect of taking that medicine for such a long time….., and/or what will happen to me if I don’t. I pray……
As soon as he speaks to my Opthomologist he wants me to start first with the azithromycin three times a week, then add the ethambutol. He wants my eyes checked every three months.

He said if it makes you too sick you will stop. So then I could develop cavities and not be able to breathe. I’m so discouraged and very scared Sue..

Sue, how did the meds affect YOU.
Any suggestions? Bon

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Replies to "Hi Sue, I guess I’m not as brave as a lot of our fellow bloggers. I..."
Sue, Volunteer Mentor | @sueinmn | Jul 22, 2023

Bon,
I am going to recommend something I TRULY wish I had done - ask to be referred to a counselor with whom you can share your fears. I was a mess for the first 6-9 months of my treatment - didn't feel like I was getting the best care, scared, very sick (from MAC and Pseudomonas at the same time.) I tried to be strong for my family, my daughter was in a difficult pregnancy... I just became a couch potato unless my 2yo grandson was with me.

By nature and upbringing, I was taught to be strong for everyone else, whether I was or not. I should have stopped saying "I'm okay" to my PCP and asked for help. Talking things out, getting some coping skills, maybe even temporary meds, would have been the best thing.

As for the rest of your questions, the antibiotics aren't pleasant, but not all of them cause reactions in every person. Your doc has your back!

I recommend two things for you to do now:
1) Ask Dr Swenson to have his nurse or assistant available to coach you through the first few weeks. I needed help from my doc's nurse to figure out when to take (bedtime worked for me but everyone is different), how to take (together and with a little starchy food worked best for me) and that certain foods didn't taste good to me while I was on the meds.
2) Ask your primary to refer you to someone you can talk to about your fears.

Can you try these?
Sue

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