Bronchiectasis and mycobacterium avium

[Manuker]

I was diagnosed with bronchiectasis last Dec.

Last Friday, the doctor told me that mycobacterium avium was found in my sputum from the bronchoscopy procedure in Sep. Now I have to leave a few more sputum specimens with the hospital again to see whether it was still there. I just don't know what this mycobacterium avium is as i have pseudomonas aeruginosa already. Would anyone out here has info on this mycobacterium avium and the treatment required?

Help really appreciated.

Manuker

[Alberta56]

I'm sorry I can't be much help. I looked it up, as I expect you have. What doctors will do seems to depend on the severity of the infection, but there do seem to be strong antibiotics if needed to keep the little blighters in their place. I think your GP or consultant is the person to ask. best wishes and good luck.

[Manuker in reply to Alberta56]

Thank you for your good wishes. Janedivney has given me a good weblink for more information in a separate post. that's very helpful.

[Alberta56 in reply to Manuker]

That's good.

[LissacFrance]

Bit of info re MAC infection. Note this article is 4 years old, so ma not be the most appropriate. Note this is a USA report. Have a good day, Chris.

The therapy, amikacin liposome inhalation suspension (Arikayce®), was approved by the Food and Drug Administration (FDA) in September 2018 to treat people with treatment-refractory Mycobacterium avium complex (MAC), a common cause of NTM pulmonary disease.Jul 6, 2020

[Manuker in reply to LissacFrance]

Thank you, LissacFrance.

[Izb1]

Sorry Manuker i have never heard of this. Perhaps give the helpline a call 0300 222 5800 they may be able to give you some idea of treatment x

[Manuker in reply to Izb1]

Thanks, Izb1.

[VirginOil]

Hi Manuker, I am in exactly the same position as yourself, waiting on results of third sputum spec. I find it all very worrying and scary.

[Manuker in reply to VirginOil]

Yes, it's really very stressful with these bacteria in the lung. Glad that there are so many in here who could share their experiences with us. They are really a help.

[Osha]

hello manuker I had avium about three years ago. I was put on azithromycin 3 times aweek. It got rid of that particular infection. I now take it as protection. Hope you’re feeling better best wishes

[Manuker]

Thank you for sharing your experience, Osha. Wish you good health too.

[Clareyg]

Hi Manuker

Whether your consultant decides to treat it depends on how severe your symptoms are as the treatment of the Big 3 antibiotics can be gruelling for the patient. The standard treatment for MAC which is a slow growing NTM is rifampicin ethambutol and either azithromycin or in my case clarithromycin (previous treatment with azithromycin gave me tinnitus). The treatment takes a long time to complete as you have to stay on it for 12 months from when you show a series of clear sputum samples.in my case I took them for 22 months. I finished in September 2022 and they retest me for returning NTM at least once a year now as there is quite a high risk of returning NTM. So you need to have a risk versus reward discussion with your consultant once they have all three of your screenings in. You need to go in with an awareness of the side effects of the very specialised antibiotics. My digestive system really struggled and for the first month it took me some time to adapt but I completed the entire course and I felt so much better after about the first six months of starting the treatment course and really well by the time i completed it. So for me it was worth the side effects for the outcome but I have a brilliant consultant and we had a very in depth discussion about pros and cons before starting. It hasn’t returned so far - downside afterwards is other bugs got in and turned into superbugs plus various fungi so now dealing with those. So if it’s not causing you big trouble the doctor may say keep a watching brief before advising treatment as the Big 3 can be difficult to complete the course due to side effects. Listen to your physician and have an informed discussion. Hope that helps. I’m glad I did it and got rid of that bug and hope it stays that way! Good luck to whatever you decide. C

[Manuker in reply to Clareyg]

Hi Clareyg,

Thank you for sharing your valuable experience. It really gives me a better understanding of what it can be like. I have just given my third sputum sample to the hospital. I feel stressed with the upcoming results. A big thank you.

[Jack70]

yes I have this and was treated by a so called specialist at Manchester infirmary infectious diseases department. The man completely ruined my life by completely ignoring the serious side effects the antibiotics we’re having on me. I became so ill to which he just kept blaming the infection for. I insisted he do an autoimmune screen and turned out I had drug induced lupus. But he decided to keep this information to himself for a and carried on the treatment for a further 6 months. It’s left me some kind of connective tissue/ muscle wasting disease, nerve damage and intestinal damage to name a few. I had no warning whatsoever that this treatment can such damage. It was the Ciprofloxacin that did the real damage.

[Manuker]

How horrible this! Wish you have recovered by now.