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In shock after MAC diagnosis

MAC & Bronchiectasis | Last Active: Nov 1, 2022 | Replies (136)

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@jkiemen

@sylvermoon8 The diagnosis is a blow. It is hard to know that you may have a chronic condition. I have had all the tests more than once. Generally I do not have allot of symptoms. I wear a mask in the Garden N95 type now. I am being changed from three times a week to every day (smaller daily dose of Azithromycin and Ethambutol and same dose of Rifampin. Have many of you made that change? If so how, did you notice much difference? They told me that if anyone is on any type of estrogen replacement, it could make it less effective. So for post-menopausal people like me it may make the cream less effective. They said it can also strengthen beta blockers.

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Replies to "@sylvermoon8 The diagnosis is a blow. It is hard to know that you may have a..."

Thought to share my experience with those who are treated with 3 antibiotics. Recently it has been confirmed that my vision loss was due to a year treatment of 3 antibiotics. The culprit was Ethambutol. My vision gets a bit improvement about two months after stopping the treatment. Good to know that the process seems reversible. During treatment I have been monitored by a ophthalmologist, the problem was discovered at ~11 month treatment. Please note that not everyone will have this problem, please discuss with your doctor about this issue.

@jkiemen I was also changed from 3 times weekly to daily. My infectious disease doc was unhappy with changes he saw in my lung CT and wanted to get more aggressive. At first I had more gastro-intestinal issues and FATIGUE was back like before treatment. Now after about 2 months, the fatigue seems to be less, but I am still losing weight -trying to find a regimen of eating that works again. I have talked to the ID doc and he wants me to try to push through this in hopes that we can get the MAC under control. When I was switched to daily meds, the audiologist did another baseline hearing test and asked to see me every 4 months or immediately if anything changes. The opthamologist sees me every 3 months, and was adamant about keeping the schedule - she does a full visual field exam plus dilated eye exam every time (I also have mild glaucoma.) The ID doc has ordered full blood counts, EKG and liver panel every month, and I see him every 3 months.
As for the beta-blockers, I had to stop taking those a while ago because they interfered with the effectiveness of my asthma medications (which are a beta-agonist.) Hence the frequent EKG to monitor mild heart issues.