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What to do in life before the Big 3?

MAC & Bronchiectasis | Last Active: Jul 25 8:51am | Replies (24)
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Profile picture for Sue, Volunteer Mentor @sueinmn

@letsjustbreathe All helpful to know - I'm guessing you are headed for antibiotics, maybe for Pseudomonas first, then MAC.

If you do start the antibiotics, NJH will advise you well on the exact protocol to follow, ut those who have been "in the trenches" will add thrit own advice.

Here is mine - get eye and hearing exams as a baseline, and as often as recommended by your doc to catch any side effects early. If you experience nausea (common), ask if it okay to take the meds at bedtime to minimize discomfort. To keep your intestinal flora functioning, eat live culture yogurt, fresh sauerkraut, kombucha or take a wide-spectrum probiotic. At the first hint of weight loss, get on a high calorie eating plan. (There are lots of discussions about it in this group.)

Above all, know that you can do this, and with good docs backing you, the journey will be much easier.

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Replies to "@letsjustbreathe All helpful to know - I'm guessing you are headed for antibiotics, maybe for Pseudomonas..."
letsjustbreathe | @letsjustbreathe | Jul 21 8:21am

@sueinmn
Do you know why we start with antibiotics for pseudomonas first? It's been around a long time (1st seen in 2024), so there's no eradicating it. The sputum loads for it have been (in order of samples):
1. 2+
2. <1+
3. "Rare" (at NJH)
4. "Rare" (at NJH)
I'm really scared of antibiotics because of the gut-to-brain connection. My parents have parkinsonism symptoms, and I sure don't want to get Parkinson's Disease because I've destroyed my gut microbiome with antibiotics.

".... to catch any side effects early."
What side effects? Am I going to lose my vision and/or hearing? All kinds of things come to mind-- retinal tears, glaucoma, etc etc. I am very near-sighted so I'm at risk for retinal problems to begin with.

"Above all, know that you can do this..."
Here's the thing-- I'm not sure that I can. That's why I'm trying to find out what life will be like for those 18+ months. Prepare for the worst and hope for the best.

Thanks for your help!

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