Non tuberculosis Microbacterium. NTM. - British Lung Foun...

British Lung Foundation

48,123 members57,234 posts

Non tuberculosis Microbacterium. NTM.

Realityrock34
Realityrock34

Rebecca's story was featured in today's newsletter. I can empathize with her as I have NTM. (None tuberculosis mycobacterium ) and also bronchiectasis. Like TB it is the most debilitating disease; no two days are the same. For nearly 4 years now I have been taking TB medication with no success. I am now on the last line of treatment taking inhaled amikacin as part of the therapy. The drugs are highly toxic and have all kinds of side effects that have to be managed or tolerated.

I would be interested in finding out how many people have this rare disease. I have come across no one near me.

Good luck to Rebecca and thank you for telling your story.

Elizabeth

11 Replies

Good evening Realityrock34 and what a horrid time you've had,certainly over the last 4 years and probably before that with your Bronc. I have to say I'd only read of a few people who have NTM and it certainly sounds to be very debilitating. I hope your treatment works as you seem to have tried various medications to no avail. Please do come back and let us know how things are. Hoping you have a good weekend.

Hi I have it (MAI) and know lots of people with it, if you look at the Mayo site for MAC and bronchiectasis there is many of us with lots to offer for you. We are growing in numbers to exceed TB. I was also on Inhaled Amikacin and it was great for me as the big 3 diddnt help me much. Good luck

Rockrose34
Rockrose34 in reply to heatt

Thank you so much for replying. I'm going to check out the clinic now. So good to make contact with people who are in the same situation as myself.

For how long did you use the amikacin? I've been on it for about six months as well as my other antibiotics. I seem to be more congested these days. Let's hope there is improvement.

heatt
heatt in reply to Rockrose34

Hiya, I was on the big 3 for 4 years and was on Amikacin inhaled for 1 year, have you had any clear sputums on the Amikacin yet. and are you on the big 3 daily or thrice weekly. I changed to daily big 3 when I went onto the Amikacin so not sure if it was amikacin or daily meds that helped.

Realityrock34
Realityrock34 in reply to heatt

Hi I'm now taking 2 antibiotics and prednisolone..last line. The big 3 was unsuccessful after 2 years. I had an awful time changing to other drugs..liver problems and intolerance. The sputum is not clear yet. Very chesty and difficult to clear.

Are you stable at the moment?

heatt
heatt in reply to Realityrock34

I am stable at the moment. I have heard that the big 3 stops them reproducing rather than killing them so maby that is what happened to us. All these drugs are so awful, but Amakacin was fine for me, I hope you get improvement on it soon and start feeling better.

hi there....I also have MAC, MAI and Bronchiectasis...am also hooked up with Mayo Clinic

Rockrose34
Rockrose34 in reply to Neville33

Thanks for replying Neville. I shall check out the Mayo Clinic now.

Keep smiling 😊

Morning

Mayo clinic is a good site. I couldnt see a support group to join?

heatt
heatt in reply to Realityrock34

It is under Mayo clinic connect.

Realityrock34
Realityrock34 in reply to heatt

Ok I'll try again. Thx

You may also like...