Just saw a consultant re my bronchiectasis (following an episode in September which has left me with a productive cough and feeling unwell)

A sputum sample has grown MAI. He's not sure that I have it so more samples over time. Has anyone heard about this? I made the mistake of reading the net (again) and it doesn't sound good. Consultant talked about 2 years of meds if it is the case. I didn't ask about outcomes. I know I am jumping the gun because I don't know if I have it yet.

Any thoughts or knowledge out there. Thank you. Johnboy

6 Replies

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  • Thank you so much for taking the time to reply to me. I have been feeling physically low since my last infection and I am now putting 2 and 2 together to make 6. I know I haven't even had the confirmation yet. I will follow your advice and call today. Thank you again - it's really helpful.

    John

  • Hi Johnboy

    Sorry you have grown MAI hun but as your consultant says he is not sure yet. Do you know when your next sample is due, how many and how frequent before he can be sure. If it is positive then hopefully a combination of abs over some time will eradicate it.

    I'm pretty sure there are some folks on bronchiectasis r us who have had mac, if not, there will be some knowledgeable peeps who may be able to give you more info.

    As you say you may be jumping the gun and I really hope the rest of your samples are negative, but whatever the result best to get it sorted.

    Let us know how you go on Johnboy and I wish you the best.

    love cx

  • Sorry flib posts crossed again. xxx We must stop meeting like this!!!!

  • I really appreciate your taking the time to reply. I have been feeling physically low for some time now and I think I have to work at putting this all in to perspective. I will let you know how I get on. Thank you again. Johnboy

  • Hi Johnboy

    So sorry to hear that you have MAI? It is not the end of the world and one does recover from it.

    I have Bronchiectasis since I was 10, now coming up to my 71st birthday. My consultant said the doctors need three positive samples over six months taken by bronchcospy before they will treat you.

    I had MIA about three years ago and was put on a cocktail of drugs, I.e. Clarythramycin,Revampison and Ethambutol (not so sure about the spelling there). The course is one year, but I only stayed on them five months as I got eye problems from Ethambutol and had to come off the tablets. I have to say that it was five very hard months. I felt sick nearly all of the time. I wanted to stay in bed all day and overall I felt dreadful. If you do take the tablets, watch out for Ethambutol as it can cause blindness.

    Now having said all that, the three subsequent samples taken by bronchcospy were negative for MIA, but as my consultant said just because it didn't show does not mean I don't have it! I was infection free for eighteen months after coming off the tabs. So apart from infections once or twice a year, I feel very well. I try to exercise as much as possible and get out of the house as much as I can. All going well, I'm off to Australia in January for six weeks. So keep your fingers crossed.

    Good luck Johnboy and there is a light at the end of the tunnel.

    Stay well

    Tamara

  • Hi Tamara.

    Thank you so much for replying and taking the time to tell me about your experiences.

    I am sorry that you were unwell when you had the medication. It's good to know that you are doing so well now. I will keep in touch with my progress. I still have to have the diagnosis confirmed from further culture samples. I will keep in touch.

    Thanks again Johnboy

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