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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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@heathert....thank you for sharing your experience with Arikayce. The Stephen lozengeges Box says don’t use more than 3 days. Also wondering if they conflict with the big 3? When you say loss of voice do you mean you were hoarse or do you mean you could not speak? And for how long?
@tdrell I was diagnosed with bronchiectasis and MAC in 2011. Took triple antibiotics for 12 months and was MAC free for 7 years. I saw my pulmonologist last month because I was having more frequent dry coughs plus occasional productive coughs. He ordered sputum culture and AFB. Sputum culture was positive for staph aures. My pulmonologist was on vacation when the results came out so the covering physician ordered Levaquin for 7 days. After Levaquin, I’m back to baseline. Saw my pulmonologist last Friday and he said I have mild MAC. He ordered CT scan because the chest xray done last month looks worse than my chest X-ray 3 years ago. He’ll decide on what to do next when he gets the result of CT scan. For now, I feel a lot better, just occasional dry coughs. He told me to continue with nebulizer twice a day and the flutter valve (acapella -green) daily.
@hydrang3a I lost my voice completely for a few days and then it could get a bit croaky on and off during the year and that was when I would have a half a strepfen. They are just strepsils with neuofen that only goes to the throat and I had them with the big 3 and they were ok, just check with your dr. Let me know how you go.
Jasmine321sounds like you are in good hands...as was said...7 years clear is awesome...glad you are feeling better. ..we will await your primary Pulmonologists thoughts tdrell
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1 ReactionHello everyone, i have question about Sodium levels. Does anyone have problems with low Sodium? I am struggling with my Sodium being to low and I ended up in the emergency room on Friday. I tried eating extra salt but it’s not working. It’s supposed to be 135 -145 and mine can’t even get pass 128. The doctor said I may need to stay at the hospital to slowly get a Sodium IV every 12 hours. I do not want to be there so please anyone can help. My primary care says eat extra salt. Thanks Rita
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1 Reaction@america..are you on a diuretic?? How long have you had the low sodium issue? Wonder if an endocrinologist is indicated? Folks on anti NTM meds....is this a possible side effect? Tdrell
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1 ReactionHi tdrell, no I’m not! But this low sodium started about 8 months ago. I’ll try to reach Mayo Clinic tomorrow and get some information. I’m not sure about the meds because I’m not on any at this moment. I have started inhaled Tobramycin for 28 days but that’s only 2 months ago. This has made my body so weak and tired and I can’t get back to where I was a month ago. It’s so frustrating! Thanks for your help.
@america....another name for lonsodium is hyponatremia.....I just googled it....two more questions....how do your kidneys function? Are you getting immune globulin treatment?? You really need the condition investigated. Tdrell
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1 ReactionMy pulmo who specializes in MAC keeps it simple...no symptoms? No need to treat...
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1 Reaction@boomerexpert Mine seems to share the same opinion about treatment or no treatment.