MAC again

Hello Shifra - Everybody is different, with their own physiology & other medical conditions to consider. Was the return of MAC diagnosed with multiple sputum specimens, or is this an assumption based on symptoms? I would be sure the MAC showed up in multiple cultures, and that sensitivity tests were conducted before I even considered the meds a second time. There are people on this list (like Terri) who have worked out alternative regimens with their doctors. Make sure you have a pulmonologist and/or infectious disease specialist who is well-versed in MAC on your treatment team. Good luck!

Hi Sue,
Once again my sputum had been negative for a few sputum test (and then positive and negative again) and now positive. What are your thoughts on these ups and downs? I see my infectious disease doc in Feb and decided I won’t go back on the big 3 again. Obviously it doesn’t work for me and after ototoxicity from Azithro I am done having the “cure” be worse than the disease. Is it common to have positive and negative sputum ad infinitum? Sorry for the frustration seeping out. I just can’t do it for a third time.
Thank you! Carolyn

Oh Carolyn, I feel for you! I never had the elation of a negative culture, but I too will not do the antibiotics again, I was WAY too miserable.

If I was in your situation, I would dig into the current research on when to treat, and additional alternative treatments to add to my airway clearance. Also, maybe to ask your ID doc if there are any clinical trials you would qualify for?

I will be waiting to hear what you and the doctor figure out.
Sue

Thanks Sue! When I feel like researching alternatives I will do so but for now I am so done with the entire thing. Still am careful and still do dry salt inhaler but I have never been plagued with phlegm…yet. Thanks for the encouragement. I will keep you posted.
Happy New Year!

I just started on the first 2 meds (Azithromycin and Ethambutol) of the Big 3 and will begin Rifampin in 5 days. If you don't mind my asking: what negative side affects did you have and how long were you on it? I have been extremely anxious about starting this treatment and also question is anyone really going to permanantly eliminate this disease from our bodies? I can't live in a bubble in order to cure this and I read all the ups and downs people go through mentally. Trying to stay positive but it is very overwhelming.

Hi there. I am new to this support group in UK. Do not know my one else with these pulmonary conditions. Recently diagnosed for second time with mycobacterium. MAC this time. Had Mycobacterium abscessus first time but same horrible 3 med regime plus others for nearly 3 years first time. Not sure I can do treatment again as side effects and loss of ‘life’ for so long seriously affected my mental health. Any comments and thoughts on treatment options gratefully received

Susie

Sorry to hear you are going through this. Must be discouraging. I am getting ready to start treatment for m. Abscessus. Three years. Wow. Since I am new and so far untreated I don't have any insights, just supportive thoughts and feelings. Hope you find a way through that doesn't make your life miserable.

Hi Susie, I am in the UK too. I had MAC and abscessus in 2022. I was on the horrible trio of antibiotics. I was clear for a year and the abcsessus is back. I was not aware of the potential side effects I was told to take all 3 antibiotics first thing every morning. I felt so ill, lost my appetite and 2 stone in weight. I had to trial a few different anti sickness meds and finally got given Ondansetron - it was a life line. I had not been told about taking probiotics which might have prevented me getting recurrent thrush. I was not told about airway clearance either. I am curious to know if you were given more information. I asked lots of questions but was told that very few people get side effects. Like you it was not good for my mental health. I took 6 months off work but had to return. I survived but have had to go part time very alien to me after 35 years as a primary teacher. Not the ideal environment to work in as exposed to so many germs. This year I have had no time off but there were days when I should have been at home. I do not know if I can do treatment again. I feel ok but cough a lot some days but I think doing airway clearance daily helps. I have pain in my lungs and when I take paracetamol 4 times daily I am not too bad. My bladder was affected too think the rifananpicin caused that. I was so thrilled when treatment stopped after 14 months and I never thought it would come back so quickly. Appointments get cancelled and I have underlying bronchiectasis too. I never smoked and I have always been healthy and full of energy then bang your life changes drastically. Sorry for rambling but it is lovely to hear that we are not alone. I have watched webinars about NTM and do lots of research. I do not know how you coped with 3 years of treatment - well done! If you don't mind me asking do you work? So much information on here it is great and we must remain positive. Not everyone reacts badly to antibiotics. Wish you well

Hi there, make sure you ask lots of questions. Take probiotics, do airway clearance and walk daily if you can. I wish you well. You might be lucky and not have any problems with the meds. I have a friend in Ireland who has taken the 3 antibiotics 3 times a week for the past 10 years. She is very careful and rarely socialises but she is still here. Different countries do different things. Best of luck when you start treatment!

Do you know what you will be given to treat M. Abscessus? I saw an ID doctor in February and when I told her I was going to NJH, she told me she wanted to wait until after my appointments. Problem is, I told her I should get into NJH in 6 weeks and that was extended to 2.5 months (last 10 days in May). I just had a major flare up, so getting concerned.