Tests show Mycobacterium Chimaera

Thanks for sharing - it sounds like your doc is following the standard protocol - now that he is not seeing infection, treat for one more year. Mycobacteria grow very slowly, hide very well in our lungs, and are hard to eradicate, so if we can tolerate it the choice is to treat.
Sue

Do you not get treated for gondonae? I was just diagnosed, ID i think i was his first patient gave me big 3,,NJH says not to treat, im scared of both

Hi, I'm new on this site and don't know if I should be on the MAC/Bronchtectasis or the M. Chimaera site. My open heart surgery was 28 months ago and just two month's ago a cyst appeared on the surgical sternum site. I was immediately thrown into the crazy world of "fungal infection"; many strong antibiotics; more surgery; side effects and long-term treatment. As you all know, very overwhelming. I am seeking to connect with others who have, or are, experiencing this journey. Did you find anything to relieve your mind regarding whether all this would ever be over? I usually do not take a negative approach on anything. This infection, however, has me baffled. I want to be pro-active in my recovery. The approach of the doctor's seems very daunting. Also, I would like to hear other people's reaction to the drug Clofaximine. Thanks.

I have been diagnosed with Mycobacterium Chimaera in my index finger, most likely came from a splinter that was removed years ago. I was first diagnosed 2 years ago with tenosynovitis. 2 surgeries later and multiple rounds and varieties of antibiotics it's still a problem.
I go up to Mayo on Monday and hope to get some answers and a treatment plan that works.
So far it is localized in my finger. I don't have any respitory issues, but I'm concerned it might spread, and when that happens, the mortality rate is a bit scary.
Has anyone had this infection in their hands, and what was the treatment?

Ho scoperto di avere questa infezione per esclusione. Stavo male già da un paio di anni ma nessun medico aveva pensato fosse una micobatteriosi. Ora sono in terapia con i 3 farmaci da un mese. I miei polmoni sono seriamente danneggiati (cavitati) e temo di non poter guarire. Sono preoccupata per la mia salute. Se qualcuno si trova o si è trovato nelle mie condizioni gradirei sapere se la terapia funziona. Grazie

ENGLISH translation (automated using Google translate)
I discovered I had this infection by exclusion. I'd been sick for a couple of years, but no doctor had ever thought it was mycobacteriosis. I've been on the three drugs for a month now. My lungs are seriously damaged (cavitated), and I fear I won't recover. I'm worried about my health. If anyone is or has been in my situation, I'd love to know if the treatment is working. Thank you.

@dantur I am sorry you are not finding good assistance where you are located. This support group can help - we are patients living with a similar diagnosis.

The treatment for mycobacteria infections (called MAC or NTM) take many months to eradicate the bacteria as it is hiding deep in the lungs. Do you see a lung specialist? They can add other treatments such as using a nebulizer and breathing techniques to get mucus out of your lungs. This can help make the antibiotic treatment more effective. Also, it is necessary to monitor, using sputum samples, to determine whether the amount of bacteria is decreasing, and then finally gone. If you have cavities, periodic x-rays or lung scans are needed to track your progress.
Here are two European resources that might help you also:
https://europeanlung.org/en/information-hub/lung-conditions/non-tuberculous-mycobacteria-ntm/
And in Italy:
https://www.amantum.org/
Are you able to use a translate function to read our forum?

@sueinmn grazie per avermi risposto Sono seguita dal reparto infettivi della mia città ma non so se è necessario rivolgermi al centro che mi ha indicato, giusto per avere un parere di un altro professionista in libera professione (es Policlinico di Milano) oppure attendere almeno la prossima tac o broncoscopia (dopo un mese di terapia mi hanno detto sia troppo presto poter vedere risultati). Cosa mi consiglia? Dove vivo non hanno terapie alternative oltre quella antibiotica che sto seguendo.