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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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Hi all,
To help everyone find the NTM videos from NJH more easily, I've added them to the discussion thread that @Paula_MAC2007 started here:
- Videos, Articles and Resources about NTM or MAC and treatments http://mayocl.in/2pZDzR0
This is a useful library of educational resources. Please add any articles, videos or educational materials that have helped you on your journey of learning about NTM.
We are dry and safe except for the constant rain. We live on top of the bluff at Clifton Terrace hill off the River Road. We can not get to Alton via the river road right now.
Was happy with dr's appointment. In Dec my breathing function was at 71% and Fri is was up to 84%!!!!!!! Did a sputum sample Fri, Sat, and Sun so will wait the 20 days to see what that shows. Dr Anderson was very positive about the 3 cultures being negative because of how well I've responded to the meds since Jan 20th. If all 3 are negative he said he will start me on the 12 monthly negative sputum cultures. As far as all my aches/pains and hot flashes go he said nothing he could do but take me off the meds and unless I insisted he would not do that. Said if I stopped the meds and MAI came back I could be resistant to the meds so of course don't want that so will just suffer with all the side effects the meds have brought me. He did suggest an eye test but when I told him I'd read on one of the sites to read the stock page daily in the newspaper and if the small print was blurry 2 days in a row to call him immediately. He did not seem too concerned about the meds affecting my hearing. Told me to eat yogurt daily. He did blood work but haven't gotten that result back yet. Go back to him in Sept to see how my breathing is doing by then. We discussed the Smart Vest and are both in agreement that it has been a main thing in helping my breathing scores to go up. Flying to Ca. tomorrow to visit my nephew so will be my first experience flying with this heavy piece of equip.
katemn,,,,,,still thinking of you and hoping each day you feel a tiny bit better .....that all the financial medical issues are working out....and that your husband is also doing ok.....again...prayers and love as you have always told us are coming your way in mountains
terrid
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1 Reactionicolleenyoung thanks for posting the above...unable to watch HOWEVER.....On May 20,2017 as has been posted awhile ago by members....there is a NTM workshop...free in Washington DC area...by l believe Dr Landes and Dr falkingham and others....it is sponsored by NTMInfo.org.....l emailed their director to ask if it will be videod....she wrote back YES.....so l will try to check after that date...probably June...to see where it is posted.and let group know....there is still time for folks living near the area to go...
terrid
@becky33, so glad to hear your pulmonary function tests were better. Just wish he had some answers for your other symptoms. Have you had your thyroid checked the medications can mess with thyroid and other hormones too. i also think getting a baseline for eyes and hearing is imperative. If someting goes wrong you have a reference point for them to work from. It's just as important as your blood test and pulmonary function test. Im trying not to sound too overbearing, but your eyes and ears are really iimportant too!! Im so excited you are going to fly to ca. Traveing is a big deal with all of our stuff we need daily. I hope you have a helper. Ive only taken car trips but others have flown and might give some helpful hints if you needed any. Well have a great time and bring back some sunshine, we certainly need it.
Becky
@colleenyoung, i cant find it.
Becky
Oops. @tdrell and @chinasmom, I corrected the faulty link. Please check it out now and add your resource recommendations here:
- Videos, Articles and Resources about NTM or MAC and treatments http://mayocl.in/2pZDzR0
<br><br><br><br><br>Thank you Colleen!<br> <br><br>
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1 Reaction<br><br><br><br><br>In mountains Katherine!<br> <br><br>
<br><br><br><br><br>Hello Terri. Haven't heard from you in awhile. How are you doing? Terri <br>M.<br> <br><br>