New to lung community here so hello everyone.
I have a chronic cough for over 10 years and misdiagnosed. Recently diagnosed with mild bronchietasis and sputum positive for Mycobacterium avium complex.
Not sure if that means that I have had MAC all this time?
CT shows signs as well. Under watchful waiting at the moment.
Does anyone know if it is worth avoiding aerosol showers, composts gardening, lakes and rivers etc.?
Welcome to the forum. I’m sure you’ll get some knowledgeable responses soon. Xxx
Welcome to the forum. I have mild bronchiectasis and I've never been told to avoid any of those things. Can't help you with MAC I'm afraid.
Avoiding compost when you have damaged lungs is advisable because of the risk of aspergilla fungus. I don't go into spa baths either. My doc described them as pseudomonas soup! I have been lucky enough to avoid MAC so far.
thanks very much Swizzy and all of you for your reply. Looking online it states that the non TB Mycrobacteria are in the soil and water, the advice about avoiding it is contradictory. Once you have it I wonder if it makes any difference although I suppose the infection load could be made worse.
It is confusing. There are so many organisms. I asked a consultant about avoiding them- not walking in wet leaves etc. He said that they are everywhere. Even on windowsills, up corners, on carpets. That they find them in us because they are looking for them. Most 'well'' people never get tested but have them or reactions to them. Reading so many contradictory ideas I have come to the conclusion that as with so many other things such as why do we get colonised with pseudomonas- they don't know and so they fudge and treat what is in front of them rather than the cause. Sounds cynical but I have been around these medics for 73 years and it was ever thus.
Thanks Swizzy, Blimey, not good to know they are everywhere!
I also believe that we with lung issues must avoid compost, rotting leaves & taking care in farmyards. I also believe it's very remiss of our medics not to warn parents of lung compromised children to steer clear of the above (asthma, bronchiectasis, cystic fibrosis etc). It's highly likely that the aspergillus fungus spores can settle in our lungs (& multiply). I only found this out when researching aspergillosis when being investigated for it in 2013. Luckily my allergy to it is low. Last year a young asthmatic friend was hospitalised with legionnaires disease after using a spa with hot tubs etc. He was really ill so best avoided imo.
PS Pebbleheath I just googled Mycobacterium avium complex NHS, very good information came up. Very best wishes. P
Thanks for this Peege, Yes I was surprised to learn that we could be infected from this. I have had a chronic lung problems and saw the pneumonologists every year, not once did they warn me or take a sputum specimen. Finally I have moved and they have found this. I had never heard of Non TB Mac, finding out how dreadful it is and how difficult to get rid of I feel upset that it was missed. Whats more I have been gardening all that time and digging in the dirt to lay paths etc.etc.!!
It is utterly maddening when this happens and I do feel for you. I think it would definitely be worth calling the helpline where you can speak to a professional, I'm sure they'll give you guidance on how to get the best treatment going forward, the questions to ask and about clearance techniques. Other bronchs will tell you of the importance of lung clearance so there's little of the perfect warm wet environment for any bacteria to multiply. Helpline: 0300 222 5800, 09.15 to 5pm, Mon to Fri
Thank you very much Peege, I am very grateful to the consultant for his thoroughness looking for MAC, also they have kitted me out with airway clearance tools. There is no conversation for avoiding, soil, showers, etc., because they say that Mycobacterium Avium is everywhere.
Welcome to our forum, you will get great advice and support from the members. Just to reinforce peege's advice- do call if you would like to chat to us for advice about your lung health - you can find more details here- asthmaandlung.org.uk/helpline
Take care
Helpline Team
Welcome to the forum.there are a few of us with bronchiectasis here
Hi, I've just been advised to send 3 sputum samples in as it was found last year and I had a bad time with coughing blood. So here we go, otherwise I feel OK, but you never know whats going on. I do wear a mask when gardening just to minimise risk. Hope you have good results regarding the MAC.
I feel for you Heaven 20, mine has not got to that stage , lets hope that you get results that are negative for MAC.
Welcome to the forum. I have Bronchiectasis and I was advised to avoid spas and hot tubs for obvious reasons. I think chest clearance is key though, and getting the right antibiotics when you need them by sending off sputum samples. This forum is filled with useful advice from knowledgeable people and you can use the search bar above to see past discussions on specific lung issues. Best wishes.
Thank you Rosco59, thats very helpful. I will have a search on NTM mac.
Hi Pebbleheath and welcome to the site. I had to look up Mac and found this on the website:-Raise the temperature of your household water heater to at least 130° F.
Use a vent fan in your bathroom, kitchen and other steamy areas
Stay away from hot tubs, spas and other recirculating hot water sources indoors
Wear a dust mask when working in the yard
Wet down potting soil to reduce dust
I am sure the medical people dealing with your case know what they are doing and will educate you re the do's and dont's. As peege says give the helpline a call I am sure they will have a working knowledge of this and be able to advise. It's always a shock when we are diagnosed with an illness , but for me the worst of it all is being left without information, as most of us are, to fumble our way around these things. I have learned more from this site than any hospital. Let us know how you get on x
Thanks for your advice Izb1, I will post back when I see what is going to happen next.
If I have to handle soil or fine dust I use a disposable N95 mask. Can't do very long as it's hard to breathe in it, have to break it up into short sessions. I avoid steam rooms and saunas , as the only time I used a steam room I went down with a chest infection within days.
We are different though, I have bronchiectasis and asthma. xx
Thats tricky for you Collienut, working with soil and fine dust! Do everything you can to avoid getting MAC.
Good morning,
Sadly I'm facing this too. Currently on IVs for a persistent pseudenomas infection.
I was referred to Papworth in October due to number of infections. First appointment recently in January and had to submit three sputum samples. First one grew pseudenomas (currently treated with IV meropenem and aztreonam). Second one positive for MAC. I'm now waiting to find out which MAC strain it is.
I'm feeling very vulnerable about it all and not knowing how to compute it all.
My Mum also has bronchiectasis. I'm worried that I'll not be able to see her in person for a long time until I'm clear of MAC, otherwise I could give her MAC. Cross infection is very worrisome.
So stuck at home on IVs wishing my life wasn't this way 😥
Sorry to hear all that you are going through Beccles82, have they told you that it will be transmitted person to person? . It may be OK to see you Mum if you wear a mask.
hi,
Snap! I was recently diagnosed (last year) in similar way, after cough and what they said “asthma” for 10 years, ironically the consultant has discharged me following diagnosis and GP referred me to community physio. I’ve been trying to be referred back to consultant care, GP not so keen, it’s appalling. ☹️😐
Good luck and keep us updated
S
That's not good SunnySunny.insist on referral- they need to manage yr bronchiectasis + asthma.plus mac x
Sunny Sunny, Thats most odd, I agree with Patk1, you need respiratory consultantto follow you through with this and be ready when and if you need the antibiotics. Physio will be good to make sure you have everything for airway clearance.
welcome. I’ve never been told to avoid those either xx
new diagnosis
New diagnosis
Bronchiectasis with MAC
I'm new and awaiting GP diagnosis
Pneumonia then bronchietasis when can I exercise?
