1. < MAC & Bronchiectasis

Complementary treatment

Posted by bozziva4 @bozziva4, Oct 8 12:26pm

I was recently diagnosed with MAC after a follow up CT scan for mild bronchiecstasis showed atypical pneumonia followed by 2 confirming sputum samples. Before knowing the results ID had pulmonologist prescribe doxy and ceftin x 7 days. I didn’t realize that atypical pneumonia would respond differently than regular pneumonia. There was no change post med use. In the interim the sputum sample was positive for Chimaera. I have no symptoms so it all seemed very strange. I did what I usually do, which is a lot of research and read many professional journal articles so that I could be as informed as possible. After meeting with the ID doctor and realizing the full treatment and possible side effects, I am pretty discouraged. I also met with a naturopath. My question is, has anybody used berberine as part of their treatment plan? I am also doing things to reduce inflammation and optimize gut health. I have always eaten healthy, mostly plant based low inflammation diet and keep active. I am very reluctant to go down the traditional treatment route.

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

Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 9 10:31am

@bozziva4 Welcome to Mayo Connect. This support group has a wide variety of experiences with Mycobacteria infections and bronchiectasis. M. chimaera is a fairly recently isolated slow-growing variant of MAC - Mycobacteria Avium Complex and is usually treated with what we refer to in the group as the "big 3" - azithromycin, ethambutol and rifampin.

When you were diagnosed with bronchiectasis, did the pulmonologist recommend daily airway clearance to help remove mucus from your lungs and help keep them free of infection? Quite a few asymptomatic people here have been able to avoid antibiotics with this daily regimen.
Here is a great video about Bronchiectasis and airway clearance by one of the experts:


Here is a good chart explaining the protocol for when to "wait and watch" a case of MAC, and when to treat: https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf

Alternative and complementary medicine is used by many of us, along with airway clearance and regular monitoring, to stay healthy, whether or not we choose to treat with antibiotics.

Is your pulmonologist familiar with MAC? Many doctors are not because it is a rare infection, affecting fewer than 1 in 1000 people in this country.

REPLY
1 reply
bozziva4 | @bozziva4 | Oct 9 6:05pm
In reply to @sueinmn "@bozziva4 Welcome to Mayo Connect. This support group has a wide variety of experiences with Mycobacteria..." + (show)
@sueinmn

@bozziva4 Welcome to Mayo Connect. This support group has a wide variety of experiences with Mycobacteria infections and bronchiectasis. M. chimaera is a fairly recently isolated slow-growing variant of MAC - Mycobacteria Avium Complex and is usually treated with what we refer to in the group as the "big 3" - azithromycin, ethambutol and rifampin.

When you were diagnosed with bronchiectasis, did the pulmonologist recommend daily airway clearance to help remove mucus from your lungs and help keep them free of infection? Quite a few asymptomatic people here have been able to avoid antibiotics with this daily regimen.
Here is a great video about Bronchiectasis and airway clearance by one of the experts:


Here is a good chart explaining the protocol for when to "wait and watch" a case of MAC, and when to treat: https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf

Alternative and complementary medicine is used by many of us, along with airway clearance and regular monitoring, to stay healthy, whether or not we choose to treat with antibiotics.

Is your pulmonologist familiar with MAC? Many doctors are not because it is a rare infection, affecting fewer than 1 in 1000 people in this country.

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Thank you, I don’t seem to have any mucus that I am aware of. Would the pulmonologist teach me how to do that? I appreciate the links.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 9 6:45pm
In reply to @bozziva4 "Thank you, I don’t seem to have any mucus that I am aware of. Would the..." + (show)
@bozziva4

Thank you, I don’t seem to have any mucus that I am aware of. Would the pulmonologist teach me how to do that? I appreciate the links.

Jump to this post

He would have a respiratory therapist, respiratory tech or nurse show you how.

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meg2024 | @meg2024 | Oct 19 7:57pm

I have just started taking Berberine and have just ordered Mullein capsules. The leaves of this European herb is used as an anti- inflammatory, expectorant to treat Lung Disease and NTM.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 19 8:34pm
In reply to @meg2024 "I have just started taking Berberine and have just ordered Mullein capsules. The leaves of this..." + (show)
@meg2024

I have just started taking Berberine and have just ordered Mullein capsules. The leaves of this European herb is used as an anti- inflammatory, expectorant to treat Lung Disease and NTM.

Jump to this post

If you take any prescription medications please check with a pharmacist for potentially harmful interactions. Both of these herbs have significant lists of potential issues. I recently had to make a full evaluation of all my supplements due to a change in meds.

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