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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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Good morning all, My husband just had a sputum test and once again the results are pseudomonous aeruginosa. This time it is +3. Does anyone know the difference between +1, +2 and +3 pseudomonous? My husband also has MAC but is currently not taking anything because the big 3 caused him to lose quite a bit of weight and get very run down. We see the Infectious Disease and the Pulmonologist doctors next week.
Hey goood morning guys, I hope everyone had a great thanksgiving. I’m so sorry to ask for help but I am so sick. I have a sore throat for more than a week now and I have tried anything that I read and heard. But I don’t know what do do. I cannot eat now and when I drink it hurts like really bad. I have Sjogrens and that caused a of dryness in my mouth and throat and only one vocal cord works. It’s bees a really rough week and I don’t know how to stop this. It causes my ears and head to also hurt. I am on Tobramycin and the nurse keeps telling me don’t stop but what do I do? Anyone any suggestions please help!!! I really appreciate it. Thanks Rita
hi America. have you been to your family Dr. To get your throats checked to make sure you don't have something else or strep.
I have been to my family yesterday but this has been more than a week now. Oh my gosh I hope it’s not. I have an appointment tomorrow morning with my primary care doctor. Thank you for your quick response. Rita
@america Maybe it is Thrush from the antibiotic. You may need a oral Nystatin Swish and Swallow or Mycelex troche. You should get checked. Maybe even Urgent Care.
Thanks so much! I’m on the way to the urgent care. I have an appointment tomorrow but I can’t wait. Thanks so much Rita
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1 Reaction@heathert ..... in addition to a sore throat and loss of voice for s few days on the Arikace trial did you have any other side effects? My upper airways are irritated and feel raw almost like I have sharp razor blades in my lungs. I’ve been on Ariksyce now for 2 weeks. Also did you use a bronchial dialator and nebuluzr saline before each application? Thanks so much... since this drug is so new Doctors don’t have much advice or direction.
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1 Reaction@america Hi Rita. Keep me posted.....feel better!
@america and @hydrang3a Heather has used throat lozenges called Strepfen and said they worked for her. They consist of concentrated honey and lemon. I used to eat spoons of honey when my throat hurt. Honey thick and soothing, and it is also a natural antibacterial.
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2 ReactionsHi guys! I went to the urgent care and I did a streptococcus test and it came back negative. But I have inflammation in my throat and it’s coming from drainage. I just got word from Mayo and I will need to stop my Tobramycin 🙁 I am not a happy camper but he knows best. I will keep you all posted and thanks for all the help.
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