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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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Katherine, hi. It's Mary Jo. Just read your note about the bronchiectasis and desire for more information on this forum. As I have told you before, I have that disease and iit was caused by a mycobacterium. It was diagnosed in 2009. It is a progressive disease, no cure, just maintenance. Your constant work is to not get a cold, bronchitis, pneumonia , you get the drift. Each lung infection makes your widened airways worse, especially the severe coughing associated with these illnesses. Each person I know with the disease does different scheduled things- ABX, nebulizers, airway cleaners, vitamins, the Vest. I can only say what I do personally. I started with arithromycin for awhile, bactrim when I had green mucus coughed up or some bleeding when coughing(infection). That worked for quite awhile keeping me from getting really sick. Right now I take doxycycline for 14 days, 2 weeks off, then Keflex for 14 days, then 2 weeks off, then repeat. If I feel infection starting I take levoquin for 10 days. I have tried saline in the nebulizer, but it was not for me. Many others do use the nebulizer daily. I tried a number of inhalers, again, no effect on me. I take NAC daily and try to walk a lot. Every day I lie down, get out my Aerobika, and clear my lungs, usually for about 45 minutes. I use a lot of Kleenex! I do cough a lot, as you said. Very embarrassing! The time to clear is not always predictable for me. I just feel my lungs tightening, and I cough, and it is pretty yucky. I do get more fatigued than I used to, so I try to pay attention to that, and sleep a little more. Hope this is a bit of help if you have been diagnosed with bronchiectasis.
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1 Reaction@david1952, David and @maryjo2sell, Maryjo, thanks so much for jumping in! MAN! what a LOT of good advice for @david1952, David! I think I am going to start a new Bronchiectasis note page .. keep track of different tips our Group posts. I have reams of data I collected when I was diagnosed if people have an actual question that I can then refer to .. BUT I think the BEST is the kind of advise/help/every day dealing with the disease that our members like you post and use in real life! Thanks again .. just can't beat our great group of people! Hugs to you! Katherine
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1 ReactionLinda, another member just posted this good information .. thought I'd share it. But would also appreciate that link from anyone who has it! Hugs! Katherine
Taking 4 antibiotic pills prescribed (such as Ethambutol) at a time. Per both doctor and pharmacist re dividing dosage .. both checked the literature and found no permission to do this. They said a drug needs to hit the bloodstream at full strength. A weak dose may not knock out the bacteria and let it morph into a different bacteria that resists the medicine.
Hmmm...I'll have to check with my doctor. The Ethambutol rx was written 1 pill 3 times a day. So do you hit it all at once like your research shows or keep it in your system though out the day? I will call on Monday and see what he says. I checked the bottle for my Rifampin and it does say 2 pills once a day so I took both first thing this morning with my probiotics. Thanks for your input Katherine! I'll let you know what I find out. Linda
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1 Reaction@lindam272, Linda, ABSOLUTELY do check with you doctor .. BUT do ask him to check the research .. BECAUSE you have a "friend" who's doctor AND pharmacist said "the a drug needs to hit the bloodstream at full strength. A weak dose may not knock out the bacteria and let it morph into a different bacteria that resists the medicine." That way it requires him to do his "due diligence" and actually check .. NOT just write out a quick prescription!! Unfortunately we ALL must be our own BEST advocates .. it is OUR body and we must take darn good care of it! Hugs! Katherine
These tips are what's keeping me sane ... well perhaps I have gone too far. So important to understand how best to take meds. I am hoping to go to Denver for 1/16 first appointment with Dr. Drummond. I will ask her questions and let everyone know her thinking on all. I am confident it is the same as Dr. Huitt's. Bless all of you for everything that you do to be of such help and comfort to all - especially we newbies. It is all so frightening and overwhelming. I am hoping to be able to continue to work even on these meds. We shall see. Thanks to you and to all,TerryPS: For the first time, I look forward to going to my email. I have two email addresses and both are usually filled with nonsense or work related stuff from my students (love them - but they are needy - then again, so am I). I am so happy to see the mail that comes from this site. You are all so caring -- it is truly unbelievable and beyond remarkable. You are my biggest comfort.
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1 ReactionThanks. We will just miss each other. I will ask for extra copies of my CDs, that have already been sent, as per your suggestion. I am so grateful to have the opportunity to come to Denver. I have heard nothing but great stories about their professionalism and kindness. They have a satellite operations at Mt Sinai in NY, where I live, but it is NOTHING compared to Denver. Wishing you much success and healing.
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1 ReactionJust sent a blank message -- sorry. Thank you for helping me NOT to cry. I have felt like crying and just couldn't ... but I felt that the tears were there and needed to come out. Your email and others have helped me to no longer feel that need. Thank you just seems so inadequate - that said, thank you.Terry
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1 ReactionThanks so much. I just downloaded it. .
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1 ReactionYou mentioned your students. I wonder how many of us teachers have MAC ?? Irene
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