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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hello Melissa,
My pulmonologist has given me a sterile container to use to collect sputum, and then to drop it off at the nearby lab for analysis the same day that I provide the sputum. I've only needed to do this once; he usually depends on other tools as to how I am doing. Also, I learned that MAC or it's other species are extremely difficult to differentiate. I retired from a university recently. Two years ago, a student in the clinical laboratory science program -- those are the technicians who analyze our specimens -- did her senior research on MAC and its closely related 'offshoots' (avium-intracellulare and other close infections). I went to her presentation before the Health Science professors, and learned it takes very specialized equipment and time to differentiate between MAC complex and other diseases. So most pulmonologists diagnose people with MAC until there can be a further differentiation. But I believe the treatment is the same (similar to TB).
Your situation, Melissa, is rather involved, due to the VA limitations and other extenuating issues. Please keep us updated.
Hello Katemn,
Glad you're learning about keeping your body strong and injury-free. Yep, as we get older we need to find what works for each of us. Strengthening the muscles around our spines so extremely important -- for all kinds of balance issues and to keep our backs strong to support our torso. Best wishes!
Paula
Replies to "Hello Melissa, My pulmonologist has given me a sterile container to use to collect sputum, and..."
Paula, really interesting info on the difficulty of differentiating MAC .. I again feel blessed to be going to Mayo Clinic where this is not an issue. But to be fair .. my Minneapolis Pulmonologist sent my sputum culture just to I think a "regular" lab .. came back as MAI/MAC .. then sent me to an Infectious Disease Specialist .. that lead me to finding a MAI/MAC specialist which was Dr. Aksamit at Mayo Clinic. So perhaps being in a larger city helps in getting to a lab that will diagnose MAC first thing?
Hi thanks for all your posts, does the medication stop the mac from getting worse at all and stop bronchiectasis from worsening or forming? or is it gradually getting worse? Im in New Zealand and my doc is going to a conference on MAC in Seattle in May so hope they have some new info.
Hello heathert,<br />
From my experience the antibiotics DID stop the MAC from getting worse! It<br />
took time .. but I finally had 12 months of negative cultures after 30<br />
months of 4 antibiotics. Keep in mind I also had TWO mycobacterium's ..<br />
not just one. Also remember MAC can only be "stabilized" .. NOT cured. In<br />
terms of the Bronchiectasis .. I do not have that answer .. have never<br />
asked the Doctor. If you google it you will find a great deal of<br />
education. Just one source is:<br />
http://www.familydoctor.co.nz/categories/chest-problems/bronchiectasis-a-patients-guide/<br />
Personally I have found a lot of my coughing stems from various causes:<br />
GERDS .. sinus issues causing post nasal dripping .. as well as the<br />
Bronchiectasis. All these things I think resulted in a diagnosis of:<br />
Reactive Airway Disease. I absolutely did not understand this .. positive<br />
my coughing was caused by an allergy to dust mites .. UNTIL an allergist<br />
tested me .. nope .. not allergic .. BUT told me this:<br />
<br />
If you get hit on the head .. you are NOT allergic to being hit on the head<br />
.. but you DO REACT to being hit on the head! SO .. Reactive Airway<br />
Disease .. I REACT to MANY things .. and cough cough COUGH!!<br />
<br />
I think you will find that many internists/doctors are not well versed in<br />
MAC. GOOGLE/READ all you can until you can educate YOURSELF .. you are<br />
your OWN best advocate!! Good luck on our shared journey!<br />
* Katherine*<br />
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Am I the only person whose Pulmonologist has me using a nebulizer with saline solution twice a day? He says it's important to keep the lungs clean. I have recently discovered that, when I exercise more than 5 minutes, my blood oxygen plummets. I have a diagnosis of MAC (from a surgical lung biopsy) and bronchiectasis. <br />
Thanks!<br />
<br />