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T

Just received message from pulmonologist that they want to start treatment for MAI as it MAY be dominant cause of radiographic findings. Says treatment will not affect ability to later treat chelonae abscessus.......anyone else have this happen?

Latest Activity: December 9, 2019
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2 Replies

Replies

L

Hi Tracer - I get so confused by all the terms... they all seem related to NTM, just different strains of the bacteria? What will the treatments be for mai and for chelonae abscesses? Are either of them the 12-18 month antibiotic treatment?

I am diagnosed with MAC and will find out next week if i’ll start the treatment. We’ve tried everything we can think of to avoid the treatment, but have run out of options I think as pneumonia’s are every couple of months now.

Latest Activity: December 7, 2019
5

Comments

T

Hi Lvo. I will find out some time next week also. Originally I was told abscessus/bollettii.....I am now being told that they "think" this (MAI) may be the dominant cause of radiographic changes. So pulmonary doctor, infectious disease doctor & doctor from National Jewish are suggesting to start treating the MAI (mycobacterium avium intracellular) as the treatment is safer and better tolerated. I am also being told that this treatment will not affect later ability to treat chelonae abscessus.......I feel like a ping pong ball! One week told one thing, next week another. This sounds to me like eventually I'd have to be treated for the abscessus....crazy. I guess I'll know more after talking to infectious disease doctor next week. Just doesn't make a whole lot of sense to me right now.  I hope you're feeling better and stay that way!!

Latest Activity: December 8, 2019
1
K

Lv o,

Hello! The pamphlet below may assist you with some answers re: meds. Katie

https://www.ntminfo.org/insight-patient-pamphlet/

Latest Activity: December 9, 2019
8

Comments

T

thank you! just in time....waiting for call from ID doctor about possible treatment. :)

Latest Activity: December 9, 2019
1

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