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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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Jkiemen,as has been stated before....try to watch videos pisted here from the May 2017 conference and NJH from SEpt 2017 national jewish health. Tdrell also RN
Right! They just move right into our lungs with neither rhyme nor reason and certainly without an invitation! How rude!
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1 ReactionHi Jill: I remember that tiredness. I would get up in morning, have breakfast and then go back to sleep! So unhealthy. I drank a little coffee, and just kept walking my dog, so at least I was doing something. I remember having to eat more bread and pasta to try to gain weight, but I got kind of skeletal. After awhile even the probiotics did not work, food just moved through system too fast. I am off pills now as MAC kept coming back, using aerobics and nebulizer. My infectious disease doc At Massachusettes General wants to put me on antibiotics every day , but I think they will kill me, so I have to have a conversation with her. It's a process, we have to try everything. Nothing seems to work 100% Try this, then try that, talk to your docs A LOT, find out alternatives. Stay on this site for tons of info. xo Christa
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2 ReactionsConsider it written down as a question to be asked. I am presently living in the NYC area in a home but hope to move to an apartment in the Atlanta, Ga area at the end of December. I, too, have been a teacher (college) for anyone interested in keeping tally of teachers/nurses in our population. Scary to ponder retirement at the end of the Fall semester. I am already obsessing on the fact that I will not be in control of the water temperature! Building was erected in 1987 so pipes etc are old. If you have any other info on your shower faucet that would be helpful for them to know at NJ (manufacturer, etc.) , please feel free to private email me if you wish. What a pleasure to do a little something for you who has done so much for the rest of us. Terry
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1 ReactionKatherine, The booklet that came with my Aerobika sites the Electronic Steam Sterilizer (baby bottle sterilizer) as the recommended method. It says, "The four disassembled parts may be disinfected using an electronic steam sterilizer for baby bottles, following the manufacturer's instructions for use (e.g. AVENT Electronic Sterilizer). The disinfection cycle should last approximately 15 minutes. Allow the parts to cool and air dry thoroughly before reassembly." I'm only microwaving for 6 mins but maybe need to up that. It seems like the other components for the nebulizer should be okay. They are all plastic. One of the alternative methods described is the microwave steam bags but says to use distilled water. "For HIGH LEVEL DISINFECTION: If clinically necessary for the patients' disease state, the device may be cleaned after each use and disinfected once each treatment day. STERILE distilled water must be used for rinsing. To sterilize distilled water, boil it for 5 minutes." Hope that helps.
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1 ReactionIrene5...and Crude!!!
@jentaylor,
Jen, I hear you. I have intentionally not traveled to Africa , Thailand, and a
few other places because of the weird crap you can pick up, i.e. elephantitis,
and that other one you can get from dung beetles, etc. I have watched "The
Monster Inside Me", a show about mycobacteriums, and strange parasites picked up
in foreign countries. My immune system is so weak, that I feel like I'd be a
target in a strange land. People DO come back from travels abroad with
illnesses that drs here are dumbfounded by.
@jkiemen,
Jo Ann, I had GERD for years without a dr ever suggesting that I may have it.
(these were pulmonologists who should have been aware that this is common with
many COPD diseases.) I would often complain to my drs that my throat burned
constantly and they never even took notice. It wasn't until I went to the Mayo
that they listened, took a scan and sure enough, I had esophageal erosion going
on! From acid reflux! It is not that uncommon, so it really pissed me off that
it went undetected or treated for so long; even though I complained about
it.
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2 Reactions@jkiemen,
Jo Ann, I am a carrier for that gene. YES! There is a connection. They haven't
figured out exactly what that connection is. I want to go to an institution that
is HIGHLY SPECIALIZED in that field. I spoke with a Dr. who does specialize in
Alpha-! at the D.C. Conference this past spring about it. I asked her about
correlations with that gene. She said yes, it is known that 'carriers' can
and do get just as ill as full blown ZZ people. Because that info is still 'off
label', so to speak, there is not enough scientific studies yet on that. But,
they have a lot of 'carriers' like myself that are in dire straights concerning
their lungs. - Terri M.
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1 Reaction@jkiemen are
you a carrier of the Alpha-1 gene?