Hi @internalmeddoc,
Thanks for joining the conversation. As you can see from reading through all the messages on this forum, our Connect members are very knowledgeable and have invaluable lived experience with MAC.
We look forward to getting to know more about you. Where do you practice? Do you see commonly see MAC patients?

Dr....thank you for adding to our insights re NTM. I Have some questions re statements you shared:
-what is a PCR?
-What might be found when doing peripheral lymph node biopsy ( those enlarged or inflammed)
-Why MRI/lung scan prior to brochoscopy not CAT scan?
It is encouraging to know Internists are aware and researching NTM! And took time to share info with us! Tdrell

Thank you so much for your info!!! I was diagnosed last January MAC. Yes, MAC is very difficult to detect especially if one goes to the doctor and is not aware of the disease. My symptoms were pain, burning, spasms in the chest, and coughing up stuff. In December, after my EKG looked good but my chest X-ray looked suspicious, the doc sent me for a CAT scan which revealed  bronchiectasis.  Through the bronchiscopy, I was diagnosed with MAC in the lungs.  Thank goodness for the big 3 meds I am currently on for 18 months. The question is, how does one keep from getting re-infected?  Thx, again-Filis

@afcardieri, Fillis, you need to be aware that at least Dr. Aksamit of Mayo Clinic feels that mycobacterium can be "treated" and "stabilized" but that when it becomes stabilized it is still in our lungs .. becomes kind of dormant so to speak .. becomes just a FEW of those darn little critters in my mind .. just waiting for me to become lazy about my "lung clearance" .. exercise .. healthy living .. healthy eating .. serenity. THEN when/if my immune system gets bad .. those nasty critters can then multiply into "colonies" and will have to be treated yet again .. OR since our lungs have become weakened by the MAC/MAI .. unfortunately they could be invaded by various bacterias like mine were this year. It is just a fact of life for us. What is .. IS! We MUST remain vigilant once we have ended our MAC/MAI treatment with regular check ups.

From my File Cabinet:
TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmonary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine

Hello, I learned at a MAC conference last month that the experts think we
may be getting re-infected by the biofilm of MAC in our hot water tank and
pipes. They suggested turning the hot water tank temp up to at least 120 degrees
or higher. Run your faucet water a few minutes before use to flush out any MAC
that have collected in the faucets. If you have water filters, they need to be
changed at least every two months. Soak showerheads in vinegar for several hours
every six months by tying a baggie with vinegar in it over the showerhead with a
twist tie. Other habits to break that may have been a source are hot tubs,
swimming in indoor pools, pond water, and lakes. These are only a few of
the possibilities.
 

@windwalker Terri, again.. great advice .. thank you! Going to add your post to my File Cabinet! Hugs! Katherine

Wind Walker et al re how high to put water heater....at 140 Dr falkingham the microbiologist doing research on NTM discovered that a stronger heat resistant NTM formed...so they recommend 120 degrees .
tdrell

My understanding is that the bronchiectasis keeps reinfecting the mac, but not sure. Anyway, I know one man who was diagnosed when he was young, took the pills for 18 mths and got rid of it ! But people my age, not sure if that can be cured. I think we need some low level maintenance forever, can't keep taking the pills, too strong, but what Katherine said sounds good. xo

@unicorn .. Christa What that really means is that even after your MAC antibiotic treatment ends .. you MUST continue your "lung clearance" .. BECAUSE the mucus becomes a "breeding ground" for the mycobacterium or other bacteria. I will put the below from my File Cabinet for now AND the future what you should be doing for "lung clearance". Hugs! Katherine

Member notes on AIRWAY CLEARANCE DEVICES : AEROBIKA http://www.aerobika-therapy.com/order-today/ https://www.monaghanmed.com/Aerobika

AEROBIKA PURCHASE: https://www.amazon.com/AEROBIKA-Oscillating-Expiratory-Effective-Clearance/dp/B00O96GQUO https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika http://www.aerobika-therapy.com/order-today/ https://www.youtube.com/watch?v=iy2oYadhF9Q https://www.youtube.com/watch?v=fqZUt3cAb0g
https://www.trudellmed.com/products/aerobika https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika

Members @decosmo and @maryjo2sell who have given great info about the Aerobika in the past.*Aerobika. I highly recommend it. I love mine. I have two. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. (I use a bit of antibacterial dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water. 2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap. ) I have had mine for at least 2 years.

*Acapella device did not help me.

AEROBIKA-MY ROUTINE-INHALERS/LUNG CLEARANCE HYGIENE/AEROBIKA Below is my particular routine in using my Aerobika
1. use my 2 inhalers PRIOR to brushing my teeth
2. use a "huff" cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Then use the Aerobika device per the instructions. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. I have found using the Aerobika you are able to " pull" mucous out of those lower lung airways in a way you cannot without the device. Personally I do this twice a day.
3. using peroxide to dampen my toothbrush and toothpaste to brush (purchased a squirt dispenser for the peroxide)
4. rinse my toothbrush .. then using peroxide for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm

Ok good to know, I thought now coughing up blood so what is the point of clearing mucus, but will keep it up. My doc wants me to do 1/2 hour of aerobics a day, plus nebulizer (with albuteral and salt water vapor) then acapella.