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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join usMAC & Bronchiectasis | Last Active: Mar 22 8:32am | Replies (9232)
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Replies to "Hello All, I am going to say something that may not go over well .. BUT..."
I was diagnosed with MAC on july 5 2016. I dont feel bad at all but kinda freaked out regarding the side effects of the meds. Cried and cried until spmeone prayed for me and i know i have to think positive to be healed…
Welcome Sophie, I am glad you have found our Forum .. I feel confident you will find a LOT of good information if you can find the time to read through the posts going back to the beginning. Plus you will find many kind supportive people who are here walking the same journey you are on .. we are all in this together. Personally I have been off the antibiotics since May 2014 . . so as you said .. THINK POSITIVE! You have a great attitude .. you just keep it up and you will be just fine! Sending you a hug! Katherine
Hi Sophie, You are right to think positive! I was diagnosed with MAC and Bronchiectasis in beginning of March and didn’t see a pulmonologist until mid-April. I also feel fine at this point so I probably won’t be starting treatment at this time but I will discuss it with Doctors that specialize in this in August when I go to a clinic here that treats just Bronchiectasis and also MAC or NTM. I think the most important thing you can do is research. Its scary at first but focus on the success stories – there are many of those too. And by success, I mean learning to live with this disease, to accommodate it, to work around it. And find doctors in your area that know a lot about this. You need an infectious disease specialist along with your pulmonary doctor. What state are you in? Katherine is absolutely right – read all the past posts on this board. You will learn so much. You are not alone in this! Hang in there. Janet
Did you have any side effects with your meds? Any eye problems????
I haven’t started the meds yet. My Dr told me it could affect my hearing but, it shouldn’t bother my eyes. What mycobacterium do you have? Do you have abscessus?
No I don’t have that. Just the non tb mac. So far I’m doing okay on the meds. Had a little diarrhea, which the doc told me about but that went away. My doc told me that any side effects should occur within the 1st 30 days, if any, then everything should go smooth.
I so agree with your message about not letting us ‘become our disease’.
While technology may be a wonderful thing, we can get so wrapped up in searching online for medical information or the messages on this blog, that we let disease encompass our day. There is a life to live out there. I don’t ever want NTM, MAC, Bronchiectasis or any other disease define who I am. No way! 🙂
@katemn, your message yesterday was among the strongest, most sensible and reasonable, reassuring I have seen here or heard among my associates in my senior community. Too many of my neighbors dwell on the information they have — and the information they still want — about their infirmities (better word than “illnesses” or “diseases”). Their attention is dominated by the physical and mental miscues (better word than “accidents,” “foul-ups,” “injuries” and the like) they catch themselves enduring. I can’t say better what you have said above, so I hope everybody will read your solid affirmation of who you are and what you are not. Thank you so much.