CT results following NTM positive sample.

[Ortho10]

I have just received the news that I have nodules of 4mm in my lungs, which would indicate damage to my lungs due to NTM.

My background is mild Bronch, Asthma and pneumothorax.

Unfortunately my Consultant seems reluctant to treat the NTM, especially as my last sputum sample was clear (although I was taking AB's at the time).

Also I have been taken off of Azithromycin which was really helping me.

I feel unwell most of the time (SOB, tired, and sore ribs) and really unwell during an exacerbation.

I guess my question is, in regard to Bronch, should I feel unwell all of the time, or is it NTM that is the culprit (if I have it at all).

I have handed in a couple more samples although it takes months to grow.

Many thanks in advance of your replies.

[cofdrop-UK]

I am sorry you are experiencing these problems. ``you may find it helpful to phone BLF and speak to one of the knowlegable nurses on there.

Hope you find some answers.

Cx.

[24cc]

I'm in a similar position to you - mild bronch and asthma, and CT evidence of NTM. The NTM was investigated but they couldn't work out which precise one I had so, as it wasn't causing me any symptoms, we decided to leave treatment aside. The treatment is pretty unpleasant apparently. That was 18 months ago, but now I'm starting to have low grade fever. I'm waiting for the results of a routine CT scan and then I'm going to phone the Infectious Diseases team and ask to be seen again. I get short of breath and tired, and now I'm often running a mild temperature. My chest doesn't feel great, but I've got used to that.

Good luck with things.

[Ortho10 in reply to 24cc]

Thanks for the reply, will follow your posts if that's ok?

My Bronch is so mild that the Radiologists don't pick it up on the scans, but Consultant says it's there.

I feel so rough at the mo, I hope the NTM is what is making me feel ill because at least there is treatment for that.

[24cc in reply to Ortho10]

There's some comfort in knowing of someone in a similar position. Good luck with getting things sorted out. Fingers crossed for both of us.

[davecarol2]

hi sorry to not know but what is ntm ?? thanks Davy boy xx

[Ortho10 in reply to davecarol2]

non tuberculosis mycobacterium, just another bug!

[Covenham]

Hello Ortho10

I’m very sorry to hear you have Bronchiectasis, Asthma, Pneumothorax, and NTM, which I had to Google as I’d not heard of it before..

I have Bronchiectasis and Asthma, and consultant always puts me onto Azithromycin three times a week, from late October to mid April, as we are all more susceptible to infection during those cold, damp winter months; along with having compromised immune systems.

I have always found that Azithromycin works well for me.

However, if my sputum test shows that I have a return of the dreaded pseudomonas, then my consultant will take me off Azithromycin and put me onto Promixin, which I inhale with a saline solution through my Philips’ iNeb inhaler twice a day. This is only until my sputum is clear again,

Hope this helps but I’d give the BFL nurses a call as they are really clued up.

Best wishes.

[Inamoment]

I've got ntm too, i think I've got everything. The trouble is the treatment is two years on a couple of antobiotics, which may well not work. I don't fancy two years on antibiotics

[Ortho10 in reply to Inamoment]

Thank's for the reply, it's interesting what you say, do you find you can cope with the symptoms OK?

The way I'm feeling I would pay for the treatment myself.

[Inamoment in reply to Ortho10]

I don't know which symptom relates to which disease, i have several. Antibiotics don't do your insides much good, two years i wouldn't fancy

[Oshgosh in reply to Inamoment]

2 years on antibiotics does sound like a long time.

Do you know the long term implications of this

[Inamoment in reply to Oshgosh]

No i don't. I've got pah so long term isn't a worry

[syntax]

Having COPD & Asthma,l also had nodules on lungs.Dr suggested

Radiotherapy,and l am glad to say they started shrinking within two

weeks. !!

[Janzo54 in reply to syntax]

I was told over 8 yrs ago i had nodules and they didnt know what they were. Never heard of ntm?! I had repeat cts for 1 year to see if they grew ( at the time they hadnt) but then was discharged after consultant saying they havent grown so nothing to worry about! He said i could have a lung biopsy but didnt recommend it as its painful.

No follow up nothing since.

I struggle sometimes with painful lungs and sweating and feeling breathless.

I have COPD which is not severe but this last year have struggled more.

Should i ask for referral back to respitorary clinic and ask about the NTM?

I havent had a CT scan in last 9 or so years!

Interesting that it comes up here about what the nodules are!! He said i had multiple small ones, who knows if they affect ones health and how!!

Puzzling!

Janzo

[Ortho10 in reply to Janzo54]

Ntm is not picked up on a routine sample, it takes months to identify.

[syntax]

You should have gone back years ago,if they do start to grow it is

quick. As l said l had a larger one they had not even mentioned 4 yrs

ago.

[Janzo54 in reply to syntax]

Oh really they just discharged me and i never heard anything more about things!! Thanks

[syntax]

And they would have contacted your Doctor,so

they should have seen you !!