1. < MAC & Bronchiectasis

In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Aug 17, 2019

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot...have been doing it for years. This year we had a new mulch supplier...... I could use a pep talk, if anyone has that for this!!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 17, 2022
In reply to @mikemolnar45 "My pulmonologist thinks birds are prime suspects for MAI which I have. I have another year..." + (show)
@mikemolnar45

My pulmonologist thinks birds are prime suspects for MAI which I have. I have another year of antibiotics to go. I discovered my MAI from lung cancer CAT scans. So it was caught early on. My treatment is working, but my cancer is incurable.

Good luck and don’t get pet birds.

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Have you rehomed your birds?
Sue

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 17, 2022
In reply to @crepass "Hey Sue, just an aside… a little mockingbird with the sweetest songs is knocking on my..." + (show)
@crepass

Hey Sue, just an aside… a little mockingbird with the sweetest songs is knocking on my car side mirror every morning this week, do you think shes lonely? ( we dont get many song birds in the city anymore)

Jump to this post

Her friends probably already headed for my yard in Deep South Texas, and she's lonely.
Tell her it's time to go, before she gets caught in sleet or snow.
Sue

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1 reply
molnarviolin@gmail.com | @mikemolnar45 | Oct 17, 2022
In reply to @sueinmn "Have you rehomed your birds? Sue" + (show)
@sueinmn

Have you rehomed your birds?
Sue

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I gave the birds away before I was diagnosed with MAI. BTW, there is no proof that I contracted this from the birds. It just seems highly likely.

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crepass | @crepass | Oct 17, 2022
In reply to @sueinmn "Her friends probably already headed for my yard in Deep South Texas, and she's lonely. Tell..." + (show)
@sueinmn

Her friends probably already headed for my yard in Deep South Texas, and she's lonely.
Tell her it's time to go, before she gets caught in sleet or snow.
Sue

Jump to this post

Thats what i think…just a little worried. Tho we havent had snow in n.o. For years. ⛄️

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sallyb827 | @sallyb827 | Oct 31, 2022

I was diagnosed with Bronchiectasis and MAC in 2017. CT scan showed improvement in 2020. Now the CT scans and breathing 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)
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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shirleye2 | @shirleye2 | Nov 1, 2022

I take the 3 antibiotic plus Arikayce daily. My IBS kicked in initially but I do yogurt everyday plus Align extra strength daily and everything has settled down and negative sputum for 5 months. Try the yogurt. I do the probiotics at breakfast and the yogurt mid afternoon and all the antibiotics an hour before bed on an empty stomach. It looks a month or two to adjust.

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