My husband has had bronchiecstasis since 2019 for the first 3 years he was mostly asymptomatic but now his sputum samples show he also has an NTM which is Micobacterium Abscessus. He is now having exacerbations very frequently and his samples show Hemophlus Influenzae and other strains one after the other. With the Abscessus always in the background. He is trying literally everything to try and avoid intravenous antibiotics which we have been told is a very difficult regime over 18 months. When he takes oral antibiotics he normally feels much better after a few days but within 6 weeks he is having another flare up, Has anyone got a similar story? Feels really daunting and any support or advice greatly appreciated 🙏🏻🙏🏻
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Debbieingram6
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Hiya & welcome to the forum.ru aware that bronchiectasis requires a minimum of 2wks antibiotics? It's important to try to avoid infections as every one causes more lung damage.has he seen a lung physio to teach him lung clearance
Thank you so much. This time my husband is on a 2 week course of Doxycycline and now his consultant has said that he has to carry on taking 1 further pill of Doxycycline for another 6 weeks. He is also going to have a nebulizer assessment to see if that will help. He does practice active breathing every day and I do percussion on his back. He also uses a flutterer and takes 6 x 375mg of carbocistein every day. He is trying everything in the hope he doesn’t have to go on 18 months of intravenous antibiotics that have so many awful side effects.
Sounds like he,and u,are doing all u can and that consultants on it too.doxycyline,like azithromycin,is an anti inflammatory antibiotic so it may help.if after the 2wks the infections not gone,do see dr.sometimes it takes an extended course to shift it with bronchiectasis x
I had infection after infection when I was with my previous surgery and they only gave me a week or 5 days' supply of antibiotics. Since referral to a consultant and a change of surgery, things have been much better. The culprit in my case was also haemophilus. It seems much better controlled now. I am on 3 weekly azithromycin tablets a week and have done one and a bit Pulmonary Rehab courses, which taught me about controlled breathing. I do ACB breathing every day. I hope your husband can find some remedy for his present troubles. Best wishes.
Thank you so much. This time my husband is on a 2 week course of Doxycycline and now his consultant has said that he has to carry on taking 1 further pill of Doxycycline for another 6 weeks. He is also going to have a nebulizer assessment to see if that will help. He does practice active breathing every day and I do percussion on his back. He also uses a flutterer and takes 6 x 375mg of carbocistein every day. Because he has the NTM I don’t think he can have azithromycin, I have asked previously. He is trying everything in the hope he doesn’t have to go on 18 months of intravenous antibiotics that have so many awful side effects. I wish you well. 🙏🏻
You both are doing well, trying every possible way to avoid intravenous antibiotics. I hope your efforts will bear fruit. Has he been offered Pulmonary Rehab? I'm finding the course I'm currently doing is helping me. My breathing feels easier and my whole body just rather better. (There are people doing it who are really quite ill. One gentleman is on oxygen.) Good luck. xxx
Thank you so much. My husband was enrolled in pulmonary rehab but when he went he was have a good phase so the physio said that he wouldn’t benefit from the 6 week course. Do you take Carbosistein? I can’t see that many people mention taking it? My husband is having a Nebukizer assessment in a couple of weeks. I hope this will go well. I hope you are ok and so happy for you that your body is feeling better. I hope you go from strength to strength and thank you again for replying
Does your husband have a Respiratory Physician in charge of his care? Ie not a GP but is he being managed by a Consultant? If not he needs to be and he needs a thorough discussion with his consultant about treating his NTM and the ability to withstand the drug regime to treat it. All NTMs are difficult to treat and your husband’s is one of the most problematic as I understand it. I have had NTM MAC which is a slow growing NTM so was on 16 antibiotic tablets for 25 months and it was very tough- the Big 3 were very tricky to get used to but I managed the regime with a good result at the end although I was extremely glad it was finished after 25 months. I went into it with full knowledge of the side effects and my consultant is brilliant. I was really well lung-wise after about 3 months of starting the treatment and they keep testing to see if it has come back since which it hasn’t yet but sadly I am now colonised with proteus which makes me ill, so the treatment worked to rid me of MAC but I think it helped the proteus learn how to be drug resistant so now that makes me ill every 6-8 weeks or so so I do home IVs (meropenum) to try to beat that now. Your husband needs a good discussion with his clinical team about the probability of success and if it’s making him ill he may well want to consider trying the treatment to stabilise his infections and then improve his quality of life if he can complete the treatment and clear his infection. Hope that is of some help.
Thank you so much sounds like you really have been through the mill. I wish you well. My husband does have a Respitory Physician. This time my husband is on a 2 week course of Doxycycline and now his consultant has said that he has to carry on taking 1 further pill of Doxycycline for another 6 weeks. He is also going to have a nebulizer assessment to see if that will help. He does practice active breathing every day and I do percussion on his back. He also uses a flutterer and takes 6 x 375mg of carbocistein every day. He is trying everything in the hope he doesn’t have to go on 18 months of intravenous antibiotics that have so many awful side effects. What side effects did you have? Did they go once you finished the treatment? 🙏🏻
The MAC antibiotic regime made me feel sick dizzy and headaches for the first month and I couldn’t really eat. Then my body adjusted and I changed the timing of the morning ABs. For the rest of the time I had extreme GI issues and my husband said I spent 2 years in the bathroom and that was really difficult and unpredictable. I also now have tinnitus as a consequence but as I said I found it worthwhile going through as the MAC made me really unwell. I use autogenic drainage which really helps and have used nebulised antibiotics for the last 4 years including whilst I was on the MAC regime. That helps as well. I was changed to gentamicin in November and am to be changed again to nebulised mero later this year. It’s worth trying to see if his lungs will tolerate it. Did they tell you what drug they propose he nebulises? The only problem is the time commitment of doing this twice a day - I am often late for work so I’ve adjusted my hours to accommodate my morning medical regime. Good luck to you and your husband.
My husband is having to resort to intravenous antibiotics as he has had recurrent chest infections. The pseudomas bacteria has been detected which we are told cannot be treated with oral antibiotics as it ‘hides’ deep in the lungs. He starts a 2 week course of IV next week. Following our visit to the hospital next week I will administer this at home three times a day with a weekly visit to the hospital to check progress. It is daunting but this bacteria needs to be treated to avoid the flare ups.
I used to have infections monthly until my specialist put me on an antibiotic called arithromycin..I take one 3 times a week.I now only have flare ups 2 or 3 times a year.I have copd & bronchiectasis & cystic lung disease.It might be worth asking about it .
He has never taken Azithromycin. His community respiratory nurse did say he might have to take an antibiotic 3 times a week. However, the consultant at Royal Papworth Hospital has told us no oral antibiotics will help clear this bacteria as it lives deep in the lung and is resistant to oral antibiotics.
Thank you so much for replying. Unfortunately as my husband has micobscterium abscessus he can’t take the arirthromycin. This really is the hope eventually but he has to get rid of the NTM first. So happy to hear that your flare ups are not often and that you can enjoy a relatively good quality of life.
Hi, You don`t say whether he is on, what is regarded as best option for bronchiectasis, i.e. Azithromycin? My wife has been on azithro for the last 4 years, 3x per week. Last week on her 6 month visit to consultant, her oxygen levels had improved. In addition to the Azithro, ohysio 3x per week, and now approaching 10,000 steps per day. We have both had Covid, despite being fully vaccinated but hers was nothing more than a cold, whereas mine was more flu like. Do ask about Azithro. It acts not only as an antibiotic but also anti inflammatory. Good luck and keep us posted. Enjoy the Easter weekend, Chris.
Thank you so much Chris and hope you are having a lovely Easter too. Unfortunately my husband has Mycobacterium Abscessus which means he can’t take Azithromycin I really wish he could. This is the wish long term. Does your with take Carbosistein what does she feel is the best form of airway clearance? Has she tried Manuka Honey at all? Wish your wife well and that she goes from strength to strength
Hi, sorry to hear that Azithro is not suitable. My wife takes no ther medication other than Azithro, 3x per week, and physio sessions, 3x per week. We are fortunate that here in France physiotherapy is considered as front line medicine, and as a result is covered by our health insurance. have a good evening, Chris.
I am in a very similar situation, however my sputum tests haven’t shown any bacteria. I got to the stage where oral antibiotics weren’t helping and so, was in hospital for two weeks in January. The IV antibiotics have really helped. The exacerbations are still quite frequent but at least oral antibiotics help again now.
Is your husband using Carbosisteine to thin his mucus?
Also, I found a flutter device wasn’t any help and an Aerobika has cleared much more mucus for me.
I have very thick mucus but I have bilateral pleural effusion and pericarditis, respiratory are saying it’s through inflammation but I have had a kleb since December 23 and just finished my 4 th lot of antibiotics! Still don’t know if it’s gone or not as I’m just so breathless doing anything right now.
So sorry to hear you are breathless. Do you use Carbocisteine or any mucus thining device/medication? My husband feels breathless when he has phlegm and once he has cleared the phlegm he feels less breathless. I wish you well
Thank you so much for replying and really hope you are now stable. Yes my husband started Carbosisteine at the end of January. It definitely helps to bring up the sputum. Would love to know mire about the Aerobika is this something the consultant can prescribe or can he just get one and start using it? Have you tried a nebulizer? Hope you are having a lovely bank holiday
Hi Debbie, is your husband on Azithromycin? These tabs would cut down his infections. I am so sorry he is suffering this way. Last year I was in a similar state but happily this year I feel much better. Take care Maximonkey
As Azithromycin is one of the combination of drugs which treat NTM, it cannot be taken in isolation as this would lead to the NTM bacteria being resistant to it.
Thank you so much for replying and so lovely to hear you are feeling better this year. Unfortunately my husband has Mycobacterium Abscessus so he cannot take Azithromycin. This is the wish going forward. Do you take Carbocisteine for sputum clearance or any other suggestions? Hope you are having a lovely Easter weekend
Hi Debbie, I hope you have enjoyed Easter too. No I do not need any meds to help with the sputum yet so I only take the Azithromycin which works for me. Take care, Maximonkey
I’d just like to second the Aerobika for chest clearance. So much better and far easier to use than a Flutter. I won’t comment on meds as everyone is different but I do really recommend the Aerobika device. Good luck with your husband getting the right treatment.
Thank you so much for your message. Please can you share which Aeorbika device you use? Where should he get it from? We are in London so not sure whether this is something the consultant recommends. Hope you are having a lovely long weekend
It's just called an Aerobika OPEP device, if you Google it, it will come up. Does your husband have a respiratory nurse or physio? It was my physio that recommended it and wrote to my GP to prescribe it. You should be able to get it prescribed rather than buy one, I'm not sure where you could buy one. I think sometimes the physios and nurses know more about the clearance devices than the consultants! Quiet weekend but lovely, hope you've had a lovely Easter too.
I am 87 years old and have similar situation. Do not know the mycobacterium identity but trying to get rid of it with lengthy antibiotic treatment is worse than the disease for me. I recently had gallbladder surgery after which my bronchiectasis improved drastically. Probably the IV antibiotic treatment (sosyn-broad spectrum) did the trick. What oral antibiotic are you using at exacerbations?
Thank you so much for replying. I’m so pleased your IV antibiotics helped. My husband is currently taking Doxycycline and initially it was for 2 weeks but consultant has extended this for another 6 weeks as latest sputum sample showed the haemophlus influenza is back. Wish you well and hope you are having a lovely long weekend
Oh dear, this is a blow to you both. Any NTM involves 18-24 months of continuous treatment with 3 different antibiotics and, as Clareyg says, the side effects can be horrendous. I only know this because I’ve grown NTMs before in my sputum and the treatment has been explained to me. Luckily, so far I’ve not developed acute symptoms so they’ve decided not to treat it at the moment. I’m not allowed to take azithromycin though, because of the potential for resistance as you say.
My problem is proteus, like Clareyg . I couldn’t tolerate meropenem so am waiting for a different nebulised drug, maybe ceftazidime, to be approved. It’s taking too long! We bronchs are all at the mercy of these horrible bacteria. I feel under siege at times
Thank you so much for replying. So sorry to hear what you have been going through. What do you classify as acute symptoms? How do you manage your airway clearance? Do you use Carbocisteine?
Well, my understanding is that persistent night sweats are a significant symptom, together with extreme fatigue, weakness, increasing breathlessness & coughing up blood. I don’t think most people realise that, an NTM infection is in a class of its own, as is the treatment, which lasts such a long time & can be very hard.
I do twice daily AC, probably 45 mins each session. 4 cycles of 12 breaths each side (lying on sofa, watching tv!) with 2-3 huffs after each cycle. Then I sit up and do some more huffing. The physios at the Brompton say percussion has been shown to be unnecessary, which is certainly true in my case. I used to get my other half to do it, years ago, but since I stopped there’s been no difference. Also the percussion was quite tiring, even for me.
I’ve tried carbocisteine several times for at least a month each time, with zero effect. I rely on 7% saline. I use a PEP mask because I have EDAC and it helps keep my airways open. I’ve tried all the other gadgets available but none of them work for me, though I know others swear by them.
I do hope the NTM therapy works for your husband and that he tolerates it. It’s a long road but from what I’ve read it is possible to get rid of it.
Thank you so much for your very detailed reply. What single oral antibiotic have you taken if you have an exacerbation of Heamophulus? What symptoms do you have when you get a flare up/excacerbation? Would love to know 🙏🏻
I see you’re in London, Debbie. I hope your husband’s under the care of the Brompton? At least the best chest hospital in the south-east is on your doorstep! x
No not The Brompton but heard it’s fantastic. My husband’s consultant has reached out to The Brompton as I heard they were working with a very interesting microbiologist that I came across at Aston University in Birmingham who was researching nebulised Manuka honey with lower dose Amacacin. So my consultant is going to speak to The Brompton and maybe to the Dr in Birmingham. Who is your consultant at The Brompton? I’ve heard of Professor Lowbinger and Professor/Dr Jones?
Oh you must get a referral to the Brompton! Your husband needs a specialist hospital. You need the Host Defence Unit, which is run by Prof Loebinger. There are several other consultants working in the unit alongside him, and all are fantastic, as are the physios. The only Dr Jones I know there is Andrew Jones. He’s CF rather than bronchiectasis and in my experience isn’t really interested in bronch (I saw him a few times - long story). There’s another Andrew Jones -Professor Jones - who has a great reputation, but he’s in Manchester.
Do you have a link to the Manuka/Amikacin trial, Debbie? Nebulised honey! - I’d be interested in reading about that
Thank you so much for all your help. We will definitely speak to my husbands consultant about Professor Loebinger at The Brompton. I think this is definitely what we have to do before considering the intense 18-24 month intravenous regime. We want to avoid this at all costs. The strange thing is that the antibiotics always work so it’s not the NTM as this would be resistant to the normal oral antibiotics.
Please see link below it’s very interesting reading …..
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