Bronchiectasis and MAC

[shirley29485]

I am 49 years old and found out about 8 months ago I had Bronchiectasis..I was feeling sick with Bronchitis symptoms. A CT was done and they determined I had that and MAC. Due to the fact that I am having symptoms of joint pain and all together not feeling well they have decided to do treatment. I can not tolerate meds very well and I am hoping that I can go through the long process of getting sick to get well. As my doctor put it. I am new to this website and find it hard to find any groups in US that can relate to what I am going through. I guess Bronchiectasis is not something that people get all the time here. I would like to know if anyone has gone through the treatment and how did they do.? I know everyone is different. Thank you

[Hidden]

Welcome, I have bronchiectasis. I am afraid I dont know anything about MAC. Can you tell me, please. I am sure that someone will be alone to help. Annie80x

[shirley29485 in reply to Hidden]

Thank you for the welcome..I am enjoying the site.

[libby7827]

Hi, like annie80, I had never heard of MAC either but have had a look on the internet and found a US site dedicated to the disease which appears to have a forum too. It may be that you have already found this yourself.

maclungdisease.org

Not saying you should leave now that you've joined us! There are a few people here that have bronchiectasis that will be able to help you with questions you may have. Best wishes, Libby

[shirley29485 in reply to libby7827]

It is Mycrobacterium Avium Intercellulare Complex... We all have it already in our bodies. But shower heads, dirt, air filters, and dust etc. Help to float in the air and then we breath it in. Us you have Bronchiectasis would probably get it if inhaled. Shower heads are the worst...its a slime that grows inside the shower head. And as the steam builds up you are inhaling the bacteria into your lungs. Its even in bottled water just most people can fight it off...

[lisalewin]

There is another US website dedicated to MAC and other pulmonary NTM diseases. Go to ntminfo.org It's a non-profit group dedicated to education, research and patient support. They also maintain an active Facebook page at facebook.com/NTMinfo

Best of luck,

Lisa

[shirley29485 in reply to lisalewin]

Thank you very much lisalwin this information has a lot of info and was very helpful..thank you again.

[Hidden]

Hi

Yes - we have come across this before - not the most common type of infection - give us a call on the Helpline -03000 030 555. I'm sure we have some UK sourced information.

Thanks

Mark

[shirley29485 in reply to Hidden]

Mark I would call the helpline but I live in the United States. And it really is not that common to have NTM here.

[Hidden]

Patient UK has info on MAC and also on the British Thoracic Society website.

Mark

[shirley29485]

Thank you guys for the information. I am checking out the websites now...lots of info.

[thatcham1939]

high shirley welcom to the site, i have bronchiectasis, mine has been caused by T.B scarring from 55yrs ago, i became very depressed, still get bad. i have steriod inhaler night and morning because i cannot have tablets as this will put my diabetis sugar up the wall.