(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
@heathert Hello...saw your post on nebulizing saline. I am using the 4 ml that is premeasured but here is the difference ....it takes me more like 12-14 minutes to inhale it and then another 3 or 4 to huff and then to cough up the phlegm. Are you sure you are using 4ml as your nebulizing time seems very brief? From what I read you should breathe in and out slowly and deeply. Kate
@alleycatkate I could use some help with nebulizing. Are you suppose to breath in and hold it before breathing out? And if yes,, then a lot of the mist escapes into the air.Flib.
@flib Hi Flib...I am pretty new to this but go by this from a bronchiectasis.site...pretty simple. They even have a video but here is the site and the nebulizing info: : http://bronchiectasis.com.au/physiotherapy/techniques/inhalation-therapy-via-a-nebuliser
Sit in a well-supported chair with a neutral lumbar spine – this enhances the function of the diaphragm and the pelvic floor and minimises musculoskeletal stress (Fig. 1)
Use a mouthpiece *, if possible, and place it well into the mouth on top of the tongue
Instruct the patient to breathe in slowly, with varied inspiratory volumes
Hold the breath briefly before exhaling
Continue until the nebuliser bowl is empty
@flib ...also when you hold your breath for a few moments, the nebulized saline should stop misting. (at least that is what happens on mine) ??
Thanks Kate, I will time it today. I have a Pari eflo which I think is fast but that is very fast.
@windwalker....I totally agree with boomer expert...our partners need to be apart if this journey, so bringing him to all appts from here on....men r wired differently to women, and when they here it first hand from a specialist, they’ll understand it better...
@heathert my saline treatment takes about 30 mins to get through.
@flib 'Frying pan' ha ha ha!
@tdrell Thank you Terri. What you are sending must be working. The symptoms are waning!
@america Thank you Rita, I am actually pulling out of it (I think). How are things going at Mayo?