1. < MAC & Bronchiectasis

Hello, just recently diagnosed with a case of Bronchiectasis

Posted by Lana @lolabell, Nov 12, 2023

Hello, I have always been a healthy gal and recently i came down with a case of walking pneumonia which was diagnosed by x ray which showed GG Opacities. I recovered quickly was on 2 antibiotics.. I had a follow up x ray a month later and the Opacities were still on x ray. I then had a CT scan which showed the Bronchiectasis. I am symptom free and feel normal My Dr said there is nothing to treat at the moment. I have my next Ct scan scheduled for February. I have Kaiser Permanente HMO insurance at the moment and i am considering making a change now that i have this diagnosis. If anyone has any information to pass along i would be very grateful. Thank you for this support group! I am learning much by reading the posts.

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

pacathy | @pacathy | Nov 20, 2023
In reply to @hsl "Thanks for the info. So you are still seeing Dr. Dorgan? So you also went to..." + (show)
@hsl

Thanks for the info. So you are still seeing Dr. Dorgan? So you also went to Mayo?
I don't know how to do a pm on Face Book. I have only seen the new primary once and I had other issues to discuss. . She is in an internal medicine group with no sub-specialists (except the one Infectious Disease doc that retired)]

It is next to impossible to find a primary care dr at Penn or in some Jefferson groups.

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Yes, I went to Mayo just to get a diagnosis and plan. Initial pulmonologist told me he didn’t think I had cancer, but we’d do tests in April to get diagnosis, 8 months after first “terrible CT” and second CT essentially the same, per doc. He went on emergency leave with no one covering patients and Penn appointments were months away.
I plan to continue with Dorgan.

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1 reply
Rick | @rstel7272 | Nov 20, 2023
In reply to @pacathy "Yes, I went to Mayo just to get a diagnosis and plan. Initial pulmonologist told me..." + (show)
@pacathy

Yes, I went to Mayo just to get a diagnosis and plan. Initial pulmonologist told me he didn’t think I had cancer, but we’d do tests in April to get diagnosis, 8 months after first “terrible CT” and second CT essentially the same, per doc. He went on emergency leave with no one covering patients and Penn appointments were months away.
I plan to continue with Dorgan.

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pacathy, have you had a pet scan?

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1 reply
pacathy | @pacathy | Nov 20, 2023
In reply to @rstel7272 "pacathy, have you had a pet scan?" + (show)
@rstel7272

pacathy, have you had a pet scan?

Jump to this post

No. Initial pulmonologist mentioned it after second CT hadn’t improved, but wanted to wait 3 months and get another CT first. He was on leave when test were due and I went to Mayo. Mayo doc repeated CT and didn’t think PET was necessary.

I have appt with Penn again in 3 weeks and will ask.

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jbud12 | @jbud12 | Nov 21, 2023

Hi,
Reading others stories is very helpful. I am pretty new to this and was diagnosed with MAC. It seems like a lot of people here have mentioned sinus issues. I have had a sinus infection for 3 weeks. I just finished an antibiotic ( doxycycline) and I still have drainage and a heavy head. Is MAC and sinus issues common? Thanks

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1 reply
scoop | @scoop | Nov 21, 2023
In reply to @jbud12 "Hi, Reading others stories is very helpful. I am pretty new to this and was diagnosed..." + (show)
@jbud12

Hi,
Reading others stories is very helpful. I am pretty new to this and was diagnosed with MAC. It seems like a lot of people here have mentioned sinus issues. I have had a sinus infection for 3 weeks. I just finished an antibiotic ( doxycycline) and I still have drainage and a heavy head. Is MAC and sinus issues common? Thanks

Jump to this post

@jbud12 Sinus issues often go hand in hand with bronchiectasis but I am not sure about MAC. I've had my share of sinus issues but I do not have MAC. Have you tried applying mupirocin ointment (Rx only, similar to bactroban) in each nostril three times a day for 2 weeks? Your PCP ought to be able to prescribe it willingly.

A random thought - recently I thought I was having increased sinus pressure pain headaches. Really bad, around 7-8 pain wise. Turns out, I believe, that my very mild TMJ (jaw) pain flared up from gripping the nebulizer in my teeth. Now that use my lips rather than my teeth, the pain is slowly subsiding.

A last thought...do you rinse your nose 2x day? If you have chronic sinusitis consider asking your ENT or allergist for budesonide to add to your nasal rinse.

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jbud12 | @jbud12 | Nov 22, 2023

Thank you for the suggestions! I will look into these! 🙂

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