Have you ever been diagnosed with Non... - Lung Conditions C...
Have you ever been diagnosed with Non-tuberculous mycobacteria (NTM)?
Non-tuberculous mycobacteria or NTM are found in water and soil and can sometimes infect the lungs.
People who have other conditions affecting the lungs such as COPD, bronchiectasis, cystic fibrosis, alpha-1 anti-trypsin deficiency, primary ciliary dyskinesia (PCD) or another lung infection, may be more susceptible to NTM.
It is not clear why some people get infected and some don’t.
There are many different types of NTM. Some are readily treated with two or three drugs, while other types can be more difficult to treat.
I was diagnosed with upper right lung cancer 5 yrs ago at age 70 . No biopsy was done . Both the pulmonologist and surgeon Said I had lung cancer . They removed my upper right lobe (lobectomy) . After a week in hospital and at one point in isolation for TB, the Mayo Clinic diagnosed an Mai or Mac Bacterial Infection. I never sued although I certainly had a case ! I now have moderate COPD .
Hi Ben
I was diagnosed with Tuberculosis in 2009 and was treated with 16 month of Treatment never came back but the damage was far greater that I have serve copd broncechtisis etc know
Sorry to hear that the treatment for TB damaged your lungs in the longer term Foxy79 . How severe is your COPD? NTM is actually a different infection to TB. While rare, it is more common for people who have underlying lung conditions. You can find out more information here: blf.org.uk/support-for-you/...
Hi dodgylungrunner
I didn't know about mtb I got it checked before it was passed to me got it treated it's gone but damage to my lungs was to much I have server copd 78 cert of lungs gone I have other health issues as well thanks for replying thanks
I never heard of that. I have COPD.
Hi Ben I have NTM, I did have TB in 2014 which was treated and now I have COPD, Bronchiactis, Psdeuomonos as well, I cannot tolerate Colomycin or Tobramycin and my consultant is fearful about trying Gentamicyn as my hearing is already very bad and all these drugs tend to interefere with hearing unfortunately. I have been waiting to hear the results of the NTM from a bronchosopy I had on 11th January. I have seen my consultant since who confirmed that psdeomonos is present but that they were groing the bacteria for NTM.
Hi angie26 thanks so much for taking the time to complete the poll and leave a comment. It's over a year now since this post. I hope that the bronchoscopy went well and that the treatment hasn't been so bad - it sounds like you've had a bit of a rough time!
The BLF have actually just published some online information on NTM which might be of interest to you: blf.org.uk/support-for-you/...
There's now also a really great blog by someone who also has COPD which I thought might be of interest: blf.org.uk/your-stories/my-...
Wishing you all the best going forwards. NTM is a condition which few know a lot about but I do know that research is being done into developing new treatments as we speak.
Nope!
Do they regularly test for it or is it only tested for when they have ecluded everything else and don’t have a diagnosis?
Hi mauschen this isn't something that's regularly tested, no. It's very rare but it is an infection that people with a underlying lung complaint are more likely to pick up.
The BLF has recently published some new online information which might be a good starting point for information: blf.org.uk/support-for-you/...
We've also recently published a blog by a lady who has NTM which is also a really interesting read: blf.org.uk/your-stories/my-...
Really hope you're well and thanks for taking the time to do the poll and leave a comment.
would you test positive in a mantoux test, and borderline/indeterminate in a t spot test? if you had been infected?
It seems that those who replied cannot differentiate between NTM and Tuberculous.
It's certainly confusing for many people which is why the BLF have now published some information about NTM which also addresses the differences between the two which hopefully will help to raise awareness of the difference. Here's the link: blf.org.uk/support-for-you/...
I was positive for a TB skin test a few decades ago. I didn't need drugs but I do keep up a screening x-ray every 5 years. Always negative.
Good to hear that the TB skin test continues to come up negative, BonnieSue long may that continue to be the case. NTM is actually different to TB and the BLF have put together some information on it which has really helped clear things up for me as this was an area I also had very little knowledge of. Here's the link: blf.org.uk/support-for-you/...
Thanks so much!
Luckily I have only had Aspergillus.
No i haven't but have unknown bacteria in my lungs and they think it's related to TB but won't grow outside the lung
Sorry to hear that you have unknown bacteria in your lungs Sjf129903 Did the doctors ever get to the bottom of what was wrong? NTM is an extremely rare infection which few have heard of. Here's a link to some more info if you're interested: blf.org.uk/support-for-you/...
I have recently been diagnosed with NTM, I was being treated initially for TB but after a further blood test the result came back as Non Tuberculous Mycobacteria. I will be on quite strong medication for at least 18 months. Nobody has said anything about developing problems with my hearing though one of the drugs Ethambutol is know to cause problems with the eyes, though this is in a small percentage of people (approx 2%]. Because I already have severe COPD naturally I'm concerned about the damage such a long term infection is going to cause.As they say "just keep taking the tablets"!!
Hi there....I justed started the big 3...I suggest u read up on drugs and sideffects, hearing loss etc....before taking these drugs u should have gotten a baseline hearing test, and an eye test, and blood wrk monthly. I hope u r see a pulmonary dr as well....the percentages of hearing loss and color blind issues r higher then 2 percent......the chances of getting NTM are low, but we've got it.....Mayo Clinic connect will give you a lot of needed information....just saying✌️
Thanks for the information, I will get my Dr to sort out a hearing test.
cloggboo1 I hope everything's going alright with your treatment? There are a number of side-effects with existing treatments and I know that research is being done into developing newer and less harmful treatments. The BLF are here to help in any way that they can and have also developed some online information which might be of interest to you: blf.org.uk/support-for-you/...
Hi Megan321 thanks so much for getting in touch. I hope that the treatment is going ok and that you haven't suffered too much from the side-effects which I know can be severe. The BLF have recently put together some information on NTM which is well worth a read too: blf.org.uk/support-for-you/...
Yes I have MAC I have been on 3 antibiotics for 3.5 years now and will stay on them another year at least(they are very nasty and so is MAC).
Why so long. The average time is 1 1/2 years. even with Cavities it's not usually that long, unless other things are going on
Yes...MAC, MAI
yes
I developed what at the time was being called MAI from my physician's overuse of steroids. I took Rifamprin, ethambutol and biacin for two very long years, remained clear (supposedly) for about six weeks and had to remain on those same med's for over two years more. A thoroughly miserable experience. My skin turned lobster red for roughly six and half years from the rifamprin and I nearly died.
I hadn't read the replies to this poll as I haven't been diagnosed with NTM. The other day I searched this forum for 'hearing loss' but didn't find this thread. I'm sure this is off topic to the original question but, my reason for having searched is because my hearing has very suddenly deteriorated. It was fine. Now I hope I'll catch a few words of what's being said so that I can get an idea of what they're saying. Sometimes I don't even manage that. It's so sudden and severe that I wondered if medications could have caused it. Looking at these replies, it can, although I'm not taking any of these medications mentioned here. It's really scary and I start to panic when someone talks to me in case I can't catch anything they say. I can't think what medications I've taken in the past that might have caused this, I don't think it can be anything I'm taking now like Fostair! Or maybe it is just hearing loss. 🤔 I'm early 40s.
