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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
@anniepie I am a retired Veterinarian of 43 years. My favorite dog breed is the Standard Poodle thus the name poodledoc. After being diagnosed with bronchiectasis and MAC in 2019 I researched medical patient forums and found this one from Mayo Clinic Connect to be far and away the best one out there for my lung condition. There are many very informed people willing to share their first hand experience with our condition. If anyone is a newbie here, there is a lot of good information in this particular thread (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS which was started in 2011 and now has over 1500 posts. Regarding susceptibility testing, in my opinion it should be mandatory for MAC or other NTM infections that are going to require long term multiple antibiotics each with known side effects. Why not be sure your bacteria are even capable of being killed by the antibiotics before using them.
Replies to "@anniepie I am a retired Veterinarian of 43 years. My favorite dog breed is the Standard..."
I thought so -- you know your antibiotics well.
I agree the susceptibility testing should be mandatory, of course -- there is no point using other drugs that won't help.
But my own experience is bit disappointing really -- we can't rely on a quick treatment just because the susceptibility test shows the best drugs to use.
When I was diagnosed in 2018, the pulm. doctor said my m.Intracellulare was found to be "extremely susceptible" to Macrolides -- Clarithromycin or Azithromycin.
But after 2 and a half years on the Macrolides with other drugs, I still haven't got rid of the m.Intracellulare yet.
The issue is that ALL of the Intracellulare lives inside a very tough biofilm inside my lungs -- so very little of the bacteria is found in the 'young' and temporary planktonic stage that antibiotics are able to attack. Antibiotics have a difficult time getting into the biofilm to fight this bug. That's why it can take so long to treat this disease.
And susceptibility testing is maybe a little bit artificial if you have m.Intracellulare. For susceptibility testing, they just test in a petri dish whether the drug can fight the PLANKTONIC stage of the bacteria only, not whether it can get through the biofilm first to fight the older bacteria inside of that.
(This biofilm can be very tough, so it's hard for drugs to get through. In the environment, mycobacterium biofilm is even found on rocks straight underneath waterfalls! That's a lot of shearing force the biofilm must withstand -- and it does withstand it!).
Sorry, that's a long explanation -- LOL
But I definitely agree with you that this is the best online site -- I'm so grateful for all the help I've had from people in this forum.
Good luck to you
How do I find that thread?
Thanks,
Ellen
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@poodledoc I completely agree about the susceptibility testing, very important for us MAC patients.