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Bronchiectasis and lung infection

Posted by magwil01 @magwil01, Aug 12 6:31pm

I have Bronchiectasis, never been told I have MAC or NMT , I am on 3 inhalents by nebulizer and do ACT and have cystic fibrosis vest daily.
Now I have lung infection that started a week ago. Diagnosed by the pulmo just by listening to my chest. Said I don't need sputum test or blood tests. Gave doxycycline for a week. I am very suspeptible to any infections as I lack IGA and IGM. I received infusions every 7 days. I would like a sputum test. Last sputum test was 6 years ago which showed gram positive cocci, gram negative rods, cocci in pairs +4, gram negative coccobacilli. no fungus. Should I not get a sputum test to see why I got infection? Doctor on vacation for 2 weeks with no backup as he is changing affiliations. Where can I get tested without a prescription? Quest and labcorp don't offer this.

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magwil01 | @magwil01 | Aug 25 2:23pm
In reply to @blm1007blm1007 "Sue- Thanks for the detailed explanation. You have learned so very much in what I would..." + (show)
@blm1007blm1007

Sue-
Thanks for the detailed explanation. You have learned so very much in what I would consider a reasonably short time, from the time you were finally diagnosed with BE, the infections and the go round of antibiotics.
So far with two different results, one of my cultures received a statement of 7 Colonies and the following months's submission to Tyler stating the +1 both for MAI complex. Here's hoping I am doing right by myself with what I am doing to keep me from hearing....."we need to put you on anti-biotics." As I said before, that will require great thought, a well thought out decision, to start the rountine of antibiotics at my time in life. Now at 81 and 10 months into life. Hope your Sunday is filled with all enjoyable activities.!

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What were your symptoms before you tested for MAC?

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1 reply
magwil01 | @magwil01 | Aug 25 2:33pm

I sound like a horse when I exhale. My inhalation is down to 1000 instead of my normal 2500. My exhale is down to 125 from normal of 425. As noted earlier, doctor not concerned even tho my peak meter says to seek emergency aid if below 200. He says I have a tight chest. I don't know how to fix it. Doing my huffs and ACTs and getting 1 cup of mucus up easily. 4 hours a day of vest work. I tried but was unable to post a recording of my exhale noise. Anyone else have persistent noise when exhaling (not wheezing, but rough sounds that go on and on until I cough).

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annagh | @annagh | Aug 25 4:39pm
In reply to @sueinmn "These are different steps in culturing the same specimen. The culture is grown for 4-8 weeks,..." + (show)
@sueinmn

These are different steps in culturing the same specimen. The culture is grown for 4-8 weeks, then inspected under a microscope to see whether NTM is present, and what type. To a trained eye, the types look different; in some cases they can be further identified by genetic testing of the bacteria.
The next step is a "colony count" - if not requested, a number is not expressed - usually recorded as few, some, many...A more exact method is to count the number of NTM colonies growing on the specimen, which is expressed by some labs as an absolute number, and others on a scales (meaningful to your doc as +1 thru +5). This helps indicate the severity of infection, and can help the doc decide whether antibiotics are needed immediately or you can "watch & wait", and sometimes whether Arikayce should be added right away.
The final step is sensitivity testing - antibiotics are applied to the colonies to see which are effective against your "bugs" so the treating doc can decide which ones to use.

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I was able to watch this NTMir webinar in which Dr. Khare explained each step of the culturing process. Very informative. I tried to find a video to share, but unfortunately was unsuccessful. The webinar was August 12th.
How the Lab Works with Dr. Reeti Khare
Anna

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1 reply
blm1007blm1007 | @blm1007blm1007 | Aug 25 5:12pm
In reply to @magwil01 "What were your symptoms before you tested for MAC?" + (show)
@magwil01

What were your symptoms before you tested for MAC?

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It all started several years ago with having to clear my throat in the mornings and at that time it was only after waking up. It was/is an annoying feeling at the back of my throat such as mucus just stuck there and hanging. I would cough and draw it up and out from the back of my throat..... as I often have to do all day long now. Every once in a while I would bring up a yellow green gel like substance that my PCP thought nothing of. It gradually and eventually went from mornings to all day long with my needing to clear it out from my throat. I also started losing weight without realizing it until it got serious. Lost 35 pounds. Finally my PCP after my seeing him so often, because I just knew something was wrong ( my feeling was he probably was thinking I'm a hypochondriac) and my continually losing weight.....he ordered the CScan. He then called me back in, sat down with me, held my hand, and told me the results..... showing BE. That was in August of 2022, approximately five years after the start of my having to clear my throat in the mornings. It wasn't until October of 2023 at NJH that I found out I did have MAI. The local pulmonologist was doing NOTHING so onto NJH I went...... and so glad I did go up to Denver. To date NJH and Tyler, the BE specialists, do not feel I need to start antibiotics because of the MAI being so little and I haven't had an exacerbation. I am very fortunate in that respect. Hope this wasn't too much info.

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magwil01 | @magwil01 | Aug 25 10:10pm

Thanks for the info. I have had the voice clearing issue for years. My friends always said it was a nervous thing.
I wish I could go to Denver NJH but I can't fly. I have other illnesses (no immunity) and I can't be over 4,000 altitude. Looks like that don't have any places near me in Northern California.

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annagh | @annagh | Sep 10 9:51am
In reply to @annagh "I was able to watch this NTMir webinar in which Dr. Khare explained each step of..." + (show)
@annagh

I was able to watch this NTMir webinar in which Dr. Khare explained each step of the culturing process. Very informative. I tried to find a video to share, but unfortunately was unsuccessful. The webinar was August 12th.
How the Lab Works with Dr. Reeti Khare
Anna

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The recording of the webinar "How the Lab Works" is now available on YouTube, but only until November 9th, 2024.


This is from NTM Info and Research, http://www.ntminfo.org.

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