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(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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@flib..hi... It was me that suggested the Garden of Life to Sue. It is pretty tasty but has a grainy quality so you really do need a banana blended in there to thicken it up and make it yummy. I hope you enjoy it. Very good ingredients compared to most of the other shakes. Let me know if you like it. Kate
@windwalker ..Hi Terri...do you use the acapella device for clearing your lungs? If so, which one?
Thanks, Kate, will do.
@alleycatkate No. I do not use an acapella device. I only do the nebulized saline. My lungs are pretty clear, i don't bring up anything ever until I do the nebulizer. The sodium causes the phlegm and what little i cough up is clear. I guess if I had gunk in my lungs that I couldn't get up easily; I would get an acapella.
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1 ReactionWindwalker ---- thank you for this post. I have been doing what I think is pretty well for about 10 months now. Have had only two sessions of antibiotics in that time. (Better than when I started with every two weeks). I have been nebulizing once daily with albuterol followed by saline (as told by Mayo doctors in Rochester. Also, I have been using two Benadryl capsules each day which it seems to me have been really helpful. I worry, though..... wondering if I am masking symptoms. After the saline, I can usually cough up a little bit of phlegm -- but not much. I'm hoping that is all that's in the lungs but wonder if the Benadryl is detrimental. I do have allergies and I don't have the nasal drainage when I use it. I feel okay (I think) -- sometimes I wonder if I truly know how I feel. But, I'm not short of breath -- have never been -- and doing what I am, I'm not coughing much. One session of the saline seems mighty helpful in that if my throat needs clearing often, it feels clear after the saline. I started with 3 mg of saline but as I purchased more through Amazon, the last I've had is 9. I just sit a little longer and do the larger amount and am assume that's okay. Do you have an opinion about this? Appreciate your comments are you are without question -- quite knowledgeable. Thank you
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1 Reaction@auntnanny. I thought the saline could only be obtained with a prescription but you say you purchased it o Amazon? Flib
flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer and it's 9 cc but I thought if I didn't want to use that much, it was still less expensive than a prescription. I've used this for about a year now and as far as I can tell, it's the same as a prescription. You might look at the inhalation saline there and see what you think.
@auntnanny, Thank you auntie, very useful, flib
@auntnanny what is the exact labeling on the saline you purchase from Amazon. I would like to look it up. Thanks!
@auntnanny Hi Jan. So glad that you are maintaining. I remember how sick you were when you first came aboard. Question: what percentage is your saline? (That would be the strength) For example: I am using 7%.