Hi has anybody had any experience with treatment for NTM. My son has CF along with a number of diseases in his lungs and is undergoing very severe treatment fro three moths...was just wondering if there was light at the end of the tunnel!
Stay well everybody x
I just want to wish your son well with his treatment. Hopefully there is light at the end of the tunnel.
Best wishes to you. Xxxx
Hi Jamesmum,
I have lifelong non cf bronchiectasis but haven’t come across NTM personally. I hope someone comes along soon who can give you reassurance from personal experience. I believe there are a few folks on Bronchiectasis R Us who have experience of NTM. Also on this wonderful site there is a lovely man who has a daughter who is younger than your son who has CF. Hopefully he will not have come across it with his own daughter but is very knowledgeable and may know people within the CF community, so I hope he sees your post.
On a more general note the 4th World Bronchiectasis & NTM Conference will be held in Barcelona on 2-4 July of this year.
Here is a link from the European Respiratory Society Patient Priorities - Bronchiectasis, which I was involved with as one of the Patient Advisory peeps. If you take a look at the videos on the bottom of page 1 there are discussions between clinicians and the 6th one is on NTM. It is meant for clinicians but you may find it of interest. It’s the one with Dr. Stefano Aliberti and Charlie Howorth, both of whom contributed to the PP-B.
europeanlunginfo.org/bronch...
I understand they have a good NTM centre in Manchester but I note from your last post our very knowledgeable and lovely Hanne discussed consultants with you at the RBH, so hopefully you are sorted.
Sorry I can’t be of more help.
I wish you and your dear Son well.
Love cx
Hi cofdrop - thank you very much for this link. I have bronch, asthma and have been told I know have two versions of NTM. Will be seeing the consultant early next month to discuss what action, if any, is proposed. The video gives me an idea of what might happen.
You are so kind to provide the attached...I will read with interest. I really appreciate your support and assistance.
Best wishes xx
You are very welcome Jamesmum. I am aware that the link is non cf bronchiectasis specific and I have found this link to a webcast on NTM in CF from the CF Foundation
cff.org/Life-With-CF/Daily-...
Hopefully someone may come along tomorrow with personal knowledge of NTM.
It might be helpful to contact the BLF team - they are very helpful.
You are a great Mum Jamesmum.
Love cx
Thank you... You have no idea what that means to me xxx
Hi Jamesmum, cant offer any advice on this but wanted to wish you well, it must be a very worrying time for you both and hope that you will see the light at the end of the tunnel soon. Irene x
I have severe emphysema along with NTM just to keep things interesting. The only treatment they have done is to do a CAT scan every 4 months or so (it likes to move around) and then decide to keep monitoring it! Have been on Amoxicillin 7 days a week for a few years and that is the only treatment so far. The next step would be daily IV antibiotics for 18 months but thankfully they are putting that on hold.
Hope your son does well and all will be better...xx
Hi Jamesmum, I’m the dad lovely Cof mentioned - I have a 12 yo daughter with cf. She’s had chronic pseudo for the last 8 years, has a best fev1 of 75%, and generally likes to be a complete pain in the bum medically: if there’s a weird or unusual way to do something cf-wise, you can almost guarantee she’ll do it.
Which NTM has your son cultured? Whilst no NTM is great, the two that are a real ‘worry’ in cf are m.abcessus, and to a slightly lesser degree, mycobacteria avian complex aka MAC, which can involve a number of different specific NTM including m.intracellulare. Mush had a single positive isolate for MAC back in October, but our centre policy is 3 positive cultures in 3 months before treating, the reason being that treatment for both MAC and Abcessus runs to between 12 and 18 months post 12 months of clear cultures, and both require 3 different lines of antibiotics for the duration. We’ve had a really rough 12 months from a chest perspective, but whatever it is we’re (still) missing, she’s had no further positives for MAC so we don’t believe it’s an untreated NTM infection at present.
The light I can give you, is that NTM is treatable, and it can be eradicated in cf. The bit that dims the light slightly is that like all bacteria with this disease, not everyone manages to fully clear them once they’re resident. Hopefully, with adherence to treatment, your son can get on top of the situation, but that has to include good, twice daily physio - as with all infections, the antibiotics are actually only half the solution.
Hope that’s been at least a little bit useful. Whilst I’m sorry that you’re here due to the situation, it’s quite nice to have another cf family here.
Of course thank you... James has the m. abcessus sadly and once he finishes this iv stuff 5 a day) not pleasant, he will take the rest orally for the 18 months. I can cope with that if he can beat it.
Such a cruel disease CF and as a parent you are helpless.
We just t have to keep going and stay positive. Thank you so much for contacting me, it is very much appreciated.
Best of luck to you and your family xx
Hi thank you for contacting me...sadly James has the dreaded one, m abcessus and that along with cf, aspergillus, pseudemonus. Mrsa... Not the best! He is10 weeks in his ivs which are pretty gruelling but we stay positive... We have to. Hate to see him suffer so much, of course you will be all too familiar. Lots of love a d good wishes for your daughter and of course her devoted family xxxx
Hello
My mum was diagnosed with A typical TB - (M. avium complex). Not sure if that's what your son has but I'll tell you my mum's situation.
My mum was prescribed a combination of drugs due to the bug's resistance (rifamycin (usually rifampin or rifabutin), (clarithromycin or azithromycin) and ethambutol.)
This was for 2 years! Your consultant would be giving the relevant treatment for your son's treatment I expect.
My mum was supposed to be cured totally after that but unfortunately after 2 weeks she had to stop as she got acute hepatitis - I think being elderly with low weight and her other medications making some pills needing to be taken with food, others without, food intake was difficult to increase. The consultant tried her again on 2 of the drugs but it got worse so they couldn't give her a third time.
This side effect is rare apparently so hopefully your son should be fine after 3 months. Just watch out for any rashes or other side effects and makes sure he eats healthy and well. The time will fly by when you look back.
Thank you - your son's consultant should have a respiratory team. Hopefully you cankeep in contact with the respiratory nurses (by phone to stay away from hospital). I found it difficult to get through and wish I'd been more persistent so I advise to contact with any small issue (or question) to save it becoming bigger.
Hope you son gets better soon too.
Hi there. I was diagnosed with NTM four years ago, mycobacterium avium complex to be exact. I have non cf bronchiectasis. I have been on antibiotics for four years now, rifampicin and clarithromycin. A bit complicated, I also have colonised pseudomonas and a question mark re aspergillosis. The reason I have been on antibiotics for the MAC for so long is that my ct scans are still not very good. I am also on nebulised colomycin for the pseudomonas. I must admit that considering all the infections that seem to be having a party when I feel well I feel very well and I am lucky not to have lots of other conditions tocontend with. I have a rescue pack of doxycycline which I take when I feel unwell. There is light at the end if the tunnel. I am seeing my consultant at the end if the month and am ever optimistic that I will get the all clear. Hope this is helpful for you and your son.
How thoughtful of you to give so much detail... Thank you very much. James has many of the diseases you ha e so I feel much better. His nurse is coming in the morning so I can ask some pertinent questions. I am so grateful... Be well xxx
I get lots of useful info from this site so it's nice to give a little something back xx xx
Yes I agree, there is so much we don't know so it is great to get an insight and offer support.
Best wishes and thank you xx
Hi Jamesmum. I have m. Avian complex and have been on the antibiotic regime for 4 months. After a rocky start...nausea, loss of appetite and extreme tiredness I am now feeling better than I have done for a couple of years. I have bronchiectasis and asthma. The side effects have mainly abated and I find the regime tolerable.
I hope your boy gets some relief soon and my very best wishes to you both. Kate x
Hi Kate thanks so much for your input. It really helps to know that you are out there giving support. Your help is really appreciated. Stay well yourself xxx
I have NTM and have been in the big 3 meds for 1 1/2 years...minimal side effects..no NTM at present
TUBERCULOSIS AND TREATMENT
Non TB Mycobacterial infection 
Newly diagnosed with non small cell lung cancer stage 3A
MiCRO ASPIRATION - advice please
Coughing non stop
