It’s been a few years since I posted my one and only post but I’ve been following, if not commenting, on and off over those years and, as always, appreciate all the information I pick up. I have a general query now as my condition has changed quite a bit since Covid and the lockdowns etc. Prior to Covid I was getting one or two chest/lung infections each year and my main concern was getting breathless when out walking. During 2020 I stayed well, but that was because I was isolating so much. Then with the relaxing of restrictions and the exposure to the outside world once more, I began to contract infections here and there and in November 2021 had pneumonia which meant I was in hospital for a couple of nights, followed by intravenous antibiotics etc. (my first hospitalisation for lung related issues).
I now have three grandchildren who constantly pick up infections from nursery, plus I travel on public transport quite a lot so I pick up colds easily which these days always become an infection.
This year has been the worst so far - I’ve had 6 chest infections, some relatively mild, some not so good but all responding quickly to antibiotics.
I was referred to the Royal Brompton for potential LVRS but after 3 video consultations it was concluded (having looked at my lung function test results etc) that LVRS would be of no benefit to me at this stage, so I’ve been referred back to a respiratory team local to me.
It has been suggested (from the RB team) that I start prophylactic antibiotics but I’m a little reluctant, partly because I’m not totally convinced that this is the right long term solution for me (I’m still hopeful that I can build my immune system back up again and that these persistent infections are a hangover from the Covid lockdown period) but also because I have had tinnitus now for a couple of years (since the pneumonia I think) and I understand that the antibiotic used for prophylactic treatment (azithromycin ?) can cause/exacerbate tinnitus and cause deafness, so I’m not sure I want to take that risk.
It has been mentioned by the RB consultants that my current changes may ‘reflect a degree of bronchiectasis and distal pneumatoceles’ because of the persistent infections….hence the recommendation for prophylactic antibiotics, I assume.
I just wondered if anyone else has had increased infections during this post Covid period and, if so, how they are dealing with it. Also i would welcome input from anyone who is taking antibiotics as a preventative and if there are alternatives to azithromycin.
I’m seeing a respiratory consultant at the beginning of September and hope to get some positive input and suggestions but also want to be as fully informed as I can be prior to that meeting.
Sorry for such a long post, any input welcomed….
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ZedKH
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I have bronchiecstasis and severe asthma. I was ok during Covid because I basically didn’t go out for 2 years and then only gradually increased outings, but I don’t use public transport. A few years ago, after I’d had a chest infection every month, I was prescribed Azithromycin by my lung consultant. I’m on 500mg because the higher dose apparently helps with asthma. I’ve only had 1 chest infection in the time I’ve been on Azithromycin, and that was in the first year, when the consultant said nobody had been on the antibiotic all year so stop it in the summer months because ‘nobody gets chest infections in the summer!’ We ll I did! I don’t have any side effects, so no tinnitus.
Thanks for your response - I am leaning towards trying a preventative as I’m currently unable to plan anything very far ahead, plus am constantly cancelling things due to being unwell. My consultant also suggested just the winter months or a short course to ‘reset’…. So I’m considering various options currently.
That’s a bit concerning as all of the infections have been manageable - a few days of feeling unwell (sickness, sore skin, really tired etc.) then on the mend. So I don’t really want to start then stop the preventatives, risking getting a much worse infection, which is why I’m having a think about it first and getting as much info as possible.
I have found thrice weekly all year round azithromycin extremely helpful. Had the odd chest infection but have took it in my stride whereas previously an infection would certainly knock me down . Why not try it
My husband Pete has COPD and used to get 3-4 chest infections a year. He was put onto azithromycin three times a week some years ago and has never looked back. The last chest infection he had was after covid in March. Fortunately he wasn’t too bad as he’d had antivirals prescribed too.
Thanks for this … I think the constant infections this year have really made me think seriously about a preventative and it’s good to hear such positive comments… I’m just a bit worried re the tinnitus but if that’s a fairly rare side effect maybe i should try it..
I was you 2009 to 2014/15. Endless infections plus pneumonia 5 times in less than two years (since pneumonia vaccination in 2013 no pneumonia) . Since going on prophylactic winter abs Nov to April on three days per week, much much fewer infections since. Basically, continuous infections aren't good for us leading to irreversible lung damage.
Those who can't tolerate Azithromycin take Doxycycline as a prophylactic. Due to chronic infections I developed CFS which is a total flipping pain in the a*** which i wouldn't wish on anyone.
Good luck, P
PS there is a product called Nasal Cold & Flu guard, I use it before during and after visits with small grandchildren. Zinc lozenges are good too. I drink an effervescent vitamin c 1000mg at 1st sign of a snuffle to give the immune system a boost
Thank you - It’s good hear about your experience… it really helps get things in perspective. I’ve been worried about what these continuous infections are doing to my already damaged lungs….Interesting also that doxycycline is an alternative. I’ve had a bad experience (once ) with doxycycline but took it on an empty stomach so that was probably why..
Great advice re the protective measures when seeing grandchildren - I didn’t think of that but it makes sense and I’ll try anything ! Thanks again…
I think the infections are doing more damage than azithromyicin 3x a week. I’ve been on this regimen for yrs without issue. It definitely helped with infections. I don’t get them near as often
Also, (sorry wrote the first reply too quickly) do you find that taking prophylactics just Nov to April you are staying fairly infection free during the summer months?
Plus after my pneumonia in 2021 my consultant said my antibody levels were really high hence I didn’t need a vaccine…. Now I’m thinking maybe I should get them checked again. I had no idea you could get it again so quickly. I’m glad you haven’t contracted it since having the vaccine…
Actually I should add that I'm no medic, I mention Doxy because a friend (who has tinnitus coincidentally) takes it as a prophylactic. She has asthma, bronchiectasis and aspergillosis, is also under Royal Brompton. I know you must stay out of the sun whilst taking Doxy. Because I've a dodgy tum I never take medication or even paracetamol/vitamins/supplements on an empty stomach. The one exception is omeprezole 1st thing in the morning.
Yes, I've found taking Azithromycin on 3 days a week from November to April sufficient at keeping clear of infections since about 2018/19 when I started. Until this year when I had a humdinger all of January then a three weeker in July - fingers are crossed that things aren't changing and that it was because an exceptionally cold winter & I had the heating on low (I did catch something from family at Christmas 🙄).
I've never had an antibody test to my knowledge but thank goodness for the jab!
After all those pneumonia & constant infections years ago I bought a book on supplements , vitamins & minerals and bought the ones that seemed suitable to rebuild my immune system which I was positive was shot to smithereens.
Back then I lived & worked in London so used mostly the Tube, I learnt to never ever touch anything with my hands & also wore a fine Buff (a snood) to pull up over my nose & mouth to keep bugs out. Nowadays masks are so acceptable thankfully.
I learnt most of the above from the good people on this forum when I joined in March 2013 and try to pass on tips that have changed life for me.
Take care, you're doing the right thing by asking questions here 👍 👌 😀
I use the nasal flu guard everytime i go out as I travel on the bus , well I used to before this flaming hip went on me. I started using this when covid began and haven't looked back since x
Prior to covid I was getting 2-3 infections a year. Since May last year I have been getting them virtually every month, culminating in a stay in hospital due to a nasty infection last November. I’ve had an elective surgery cancelled 4 times now due to repeat infections and truthfully can’t see it happening any time soon. I was on a 3 month prophylactic course of doxy earlier this year. It did help reduce the severity but I was still unwell whilst on them. My consultant wants me to start a 6 month course at the beginning of October to get me through the winter. I’ve also had to increase my airway clearance in a bid to reduce/prevent further flares. Like you I am reluctant as have had a ridiculous amount of antibiotics over the last year, but I also know how much worse I feel with each infection I get. I don’t think I’ve ever felt as exhausted as I do now. I work full time and try to stay active, but it is getting harder each time. Shielding definitely helped keep infections to a minimum, up I don’t feel as though I have any immunity these days.
I can relate so much to your response - thank you for replying…. although I’m no longer working which I’m sure makes a massive difference with recovery etc
I also feel as though my immunity is non existent- I’m taking various supplements plus turmeric shots daily. Maybe it all helps but I’m still getting those infections every 4-6 weeks….
Is the airway clearance you refer to the breathing/huffing exercise? I’ve been doing this more regularly on the advice from the Royal Brompton. I do think it helps clear the gunk to an extent…
I’m sorry you’re feeling so exhausted - I actually think it’s mentally wearing having these constant infections… I barely start to get back into minimal exercise - walking mainly - when I get another one which brings me down mentally as well as physically. If you’re working it must feel like a never ending battle. I hope the six month course helps- I’m beginning to realise that I’ll be taking antibiotics monthly anyway if I don’t start the prophylactics so maybe the preventative is a better option. I think it probably is based on the feedback from people in this forum…
On my last big infection my daughter sent me some Ginseng and Royal Jelly and can honestly say i haven't suffered since. They were called Ginseng Feng Wang Jiang and certainly helped my immune system x
Give them a week or so to get into your system, I really hope they work for you as they did me. I had three boxes and took most of them. Anything that improves your immune system has got to help. Good luck x
I agree - I also bought 3 boxes so will take them daily until they run out….
I went to 4 chemists today trying to get the nasal cold and flu guard - no luck. I’ll try online - is that where you bought yours? There were a few options online so was a bit confusing hence trying the pharmacies. Z
Hi ZedKH, I'm taking azithromycin as a preventative 3x week. I've been taking them for about 6 months now & they really help. I have still had a couple of chest infections but get much better quickly than previously. I'm with the Royal Brompton still, I was referred for the valves initially but have a leak in the fissure between lobes so wasn't a candidate. I then went for testing for another clinical trial to fix the fissure but couldn't have that either due to chronic bronchitis. Referred for another trial to fix the chronic bronchitis. It's well worth trying to get referred back to the Brompton if you can they're amazing.I have tinnitus anyway not caused by medication, it doesn't seem to be any worse since taking them. Hope you can get some help from your respiratory team.
Hi and thanks for your response . Yes I felt I was given a lot of information by the team at Royal Brompton and will ask for a further referral down the track if necessary.
I’m glad they are being so proactive on your behalf and hope you get some resolutions quickly..
I’m not sure what caused my tinnitus initially - I’ve only been aware of it over the last couple of years - more so lately, hence some reluctance to take azithromycin. Yes I hope the respiratory team will have some positive input for me … fingers crossed!
My Husband has COPD for a few years now, but this year, he had Covid as did i at Xmas, but thought we were both over it, but this year has had bad infections, finally diagnosed with Pseudomonas infections, by the micro biologists to detect this, it is a harmless one for anyone with normal lungs, but if not, is a very serious issue, he has been on anti B drips 3 times a day for nearly 3 weeks, and now out of hospital a few days ago, but the infection they said colonizes in bad lungs which is his situation, they say if not cleared which is very very difficult to do, it can remain in there for years and keep coming to the fore. We had no idea of Psuedomonas until now, a minor virus until it infects already damaged lungs.
But of course with lung conditons as they deteriorate, more and more infections occur anyway in a year, sadly this indicates the worsening which we dont like to think about but have to be realistic. My husband first diagnosed 12 years ago, he is now 78. All together not a good prospect, its a terrible condition has turned a fit tall man who never stopped doing something to someone who walks slowly now and even a few steps makes him extremely breathless, no real quality of life is it.
So sorry to hear this Nightmare2 it sounds horrendous. I hope the intravenous antibiotics are able to deal with this severe infection.
Yes it’s a worry that once the lungs are damaged we are susceptible to the more nasty bacteria. I’ve submitted two sputum samples to eliminate any mycobacteria or other bugs which are not covered by antibiotics I’ve been given.
It’s hard to see someone who was previously active become breathless and unable to do things. I hope he improves with the current treatment..
Hi ZedKH,Some years ago I did some classroom volunteering, with class 1, during 6 months I had 5 chest infections, I was put on Azithromysin, I've not looked back, I also have tinnitus but the antibiotic hasn't affected that in any way, my advice would be, give it a try, and if possible, when the children have a cold, which they do, keep clear for a few days, to cut the risk of you picking it up. Hope this helps you.
I have Alpha-1 Antitrypsin Deficiency which has caused emphysema, also bronchiectasis.
The more feedback I’m getting the more I’m veering towards taking the azithromycin- I’ll keep everyone posted!
I don’t see the grandchildren a lot really - they are all a train journey (or lengthy car drive ) away so I make arrangements and hope they will all be cold-free for my visit! I’m usually with them for a couple of days at a time so if they’re coughing and have runny noses I always anticipate catching something….think the nasal cold and flu guard is definitely worth trying plus zinc lozenges…
I’ve been tested for Alpha-1 antitrypsin deficiency but apparently my levels were normal…
I haven’t been diagnosed with bronchiectasis but it seems I may have it now, alongside the emphysema … hey ho… onwards and upwards
I have Bronchiectasis and went for 4 years without any infections until I got pneumonia last December. I’ve had 2 infections since. My respiratory doctor put me on co-trimoxazole three times a week. He did offer azathromycin but said that clarithromycin wouldn’t be as effective if I needed it. I turned it down as it’s upset my stomach in the past. I also nebulise colomycin daily for pseudonymous. Good luck I hope you improve soon.
That’s a new one on me… I’m taking loads of notes to take along to my meeting with the respiratory consultant in September so will add this to my list…
Hi Zed,The trick is to get out of this repetitive cycle of infection and acute treatment. In my case (bronchiectasis, asthma and recurring bronchitis) it took a year of not so low dose of prednison and 3 days a week azitromycine and switching to nebuliser for my regular inhaled
Yes that’s exactly what I need to do. I thought the summer months may make a difference but not so far… so like you I need the impact of preventatives…
I’m glad it worked for you - that’s very encouraging- as are all the positive comments I’ve received …
Hi Ahem, When things got out of hand, they gave me steroid injections and oxygen in the emergency room, and then oral prednison in high dose for a week (60mg). The plan was to go down after that ,but twice it happened that at 10 mg I ended up in the emergency room again. And had to start all over, so after that several months of 30 mg and azitromycine, then without azitromycine and 20, 15, 10, 5. Mg of prednison.In total a year of prednison and an another year to get a bit fitter again.
I posted something similar earlier in the year, as since I have been diagnosed with copd I seem to get every thing that’s going round but nothing to what you have got. Everyone said that it’s part of it. I try and steer clear if anyone with anything, I live on my own with no family so into k I lucky that I don’t really see lots of relatives etc, I hope you keep well x
Yes I also keep away if people have any bugs - I’ve cancelled so many things because it’s either me that’s unwell or a friend keeping their distance to keep me safe!
I’m still wearing masks on trains and using hand sanitizer and now I’m going to use the cold and flu guard too….
I have told this tale numerous times, but here we go again. I would say that since moving into our current home in Aug 2013, I have had countless chest infections. Had quite a few in the previous house as well. My consultant put me on azithromycin which I took 3 days a week, but it gave me a terrible ulcerated mouth, so soon stopped that. In 2016 I had loads of infections, so in 2017 I kept a diary, and counted 18 infections, various bugs, in that year. In Apr 2018, we had our bathroom converted into a walk-in shower room. When the bath was removed, it revealed the floor to be 70% covered in Black mould. The floor was replaced with new floor boarding, and since then I have had NO chest infections, that is except for a 10 day stay in hospital with pneumonia and pleurisy. In 2014, I was infected by a bug, Staphyllocccus Aureus, which lasted from the end of Mar into Nov. Oral AB hardly touched it, but in Nov I was seen by the consultant in the hospital, had a CT scan, which showed I now had bi-basal bronchiectasis. I then had a course of intravenous AB which knocked the SA on the head. One week later I had another infection, which was sorted by an oral AB. Anyway, have a look around your home for mould which will form anywhere it is damp, so due to leaking roof, leaking pipes or drains in your kitchen or bathroom. Ours was due to bath drain leaking. I also believe, that maybe, the long stint with the SA infection caused my contracting bronchiectasis, and the bout of pneumonia and pleurisy could be why I now have Heart Failure. I also now wonder if our previous home had black mould.
Hi, just wondered if you're wearing a mask when indoors? Me and husband are in our 50s, he has bronchiectasis, and I have a heart condition, and we still try to meet people outside or also wear a mask when indoors even with family. He used to get a lot of chest infections, which was causing more lung damage. Luckily we can both work from home and have no need to use public transport these days but if we did we would definitely wear a mask(respirator). We are not recluses we are always out and about, just mostly outside and wear an FFP2/ FFP3 when indoors. We have a few Cambridge masks which are equivalent to FFP2 respirators. Also we have an air purifier with HEPA filtration. I would definitely have that on close by if we had visitors. We also use Boots dual defence anti flu spray but nasal flu guard looks interesting too. I hope you feel better soon x
I don’t tend to wear a mask indoors Shec, I have thought about it when around the little ones when they have coughs and runny noses but as yet I haven’t. I do wear a mask on trains and am often the only one…. but I feel it’s a degree of protection at least. I tend to wear the KN95 type- I don’t know the ones you mention but I’ll look into it…
I have lots of chest problems - emphysema, Fibrosis and nodules in my lungs, Dr me a name for that and I have forgot.
My point being I had " tinnitus" that has nothing to do with lung or lung treatment as I had " tinnitus" a while before I had lung problems so I never knew what cased it. Good luck with your condition and treatments,
Yes I haven’t mentioned it to my doctor. The consultant at the Royal Brompton said to let my gp know so I will at some stage but not sure what they can do…
I would let your GP know. I never got treatment but your GP is better knowing in case it could be part of something sometime. I have learned to live with the row, sometimes it's worse than others.
Hi ZedKH, I have ILD and also bronchiecstasis and small airways disease. I was getting lots of infections and my immunologist and my ILD consultant didn't like the yoyo effect of getting ill, taking antibiotics for short periods, then when off the anti biotics getting another infection. So Autumn 2022 I was given Doxycycline anti biotic and also an inhaler (Fostair Nexthaler). These addions to my existing medications have made such a difference. I haven't had an infection this year and my unwell days have drastically reduced. The immunologist was so keen to tip things in my favour, that is exactly what happened. I also have a supply of an alternative anti biotic should I get a breakthrough infection. It's been working so well. I have recently had a break from the anti-biotics (June July and August) and so far so good, I haven't had any infections. Will recommence Doxy in September. Hope this helps.
I completely agree- I feel I can make a much more informed decision now, having received such fantastic input.
Thank you everyone for taking the time to respond to my queries - I’m going to my meeting armed with various questions and feel I am much more aware of the benefits of prophylactic antibiotics…
I was put on Azith 3 times a week after getting a nasty lung infection in the summer of 2020. I haven't had an infection since. I had tinnitus long before I developed lung problems, but it's got worse since I had a fall earlier this year. That also seems to have affected my hearing, but I doubt if the Avith has anything to do with either problem.
Interesting- thanks Alberta56… just so hard to know where the tinnitus came from… still I’m glad you’ve been infection free since taking the azithromycin- that’s great!
For at least 2 years I continually got infections either 1 after another or lingering ones I couldn't shake off. Both myself and my GP attributed them to my COPD and asthma. Finally a doctor ordered a simple immunoglobulin blood test measuring my IgG, IgA and IgM. It came back showing I am immunodeficient (low immunity whereby my body is unable to fight off infections). It is not curable, only manageable. Since then I have been getting infusions monthly and have far less infections than I used to get. And the few I've had have been quickly resolved with a short dose of antibiotics. Also I was fortunate never to get Covid, nor did I ever get the vaccine. Ask your doctor to order a simple lab test for immunodeficiency.
I think I’ve had this blood test following the pneumonia- I’ll need to check through the file. Otherwise I will ask for this when I see the consultant. Thank you Vicki..
I too had persistent chest infections & was prescribed Azithromycin 3 x weekly which didn’t help much. However, this was increased by my respiratory consultant to 250 mg daily which has made a huge difference. I wouldn’t hesitate to take it if you have been offered it.
My husband has bronchiectasis and COPD. He has taken prophylactic doxycycline for about 15 years. When azithromycin came out he changed to that but had breakthrough infections. He changed back and despite being severe, has been pretty steady since then. If he feels an infection coming on, he doubles up the doxy for 2 weeks. He doesn't have noticeable side effects. He has a trimbow inhaler, plus other stuff, but it is the doxy which keeps a lid on things. I hope you find the right answer for you.
I have bronchiectasis (from childhood - through hooping cough) and COPD. I’ve had repeat chest infections for many years. I’ve found it difficult to know when I have a chest infection so have taken antibiotics early (rightly or wrongly) which I believe has helped to keep me going so long (I’m 74 and have played sports all my life). Towards the end of last year I started being short of breath which was not helped by taking antibiotics. Sputum tests revealed haemophilus influenza bug. After 2 weeks of doxycycline (lab tests of the sputum showed Doxy to be effective!) test results still positive! More Doxy x2, but still positive x2. X-rays & CT scans showed nothing nasty. Specialist said lungs colonised with HIB… which had been mentioned before. I was prescribed 3 months of Azithromycin - 2 weeks @ 1/day then @ 3/week. I did feel better but still not right so I’ve been prescribed Azithro long term!… so, I’m getting to the point now… I’ve decided not to take the Azithro but started self treatment as shown on vids by Dr Myhill. I’m taking 3 to 5 gms of Vit C daily… I’ve got a salt pipe and add 2 drops of iodine and sniff that every day. I add 2 drops to the salt pipe every other day (as the iodine evaporates fairly quickly). Iodine is Lugols 15%. The theory is, the Vit C protects and kills bugs from the inside out and the iodine kills bugs from the outside in. Both substances are very safe but kill ALL known bugs. I’m hoping the iodine will eliminate the colonised HIB from my lungs! Does anyone else have any experience with Vit C, salt pipe+iodine regime. It’s early days but so far so good… & no antibiotics!
It would be interesting to hear what your consultant says!?
I’m always interested in alternative remedies and have tried a few myself - not quite as drastic as your very high doses of Vit C. Are you spacing these throughout the day and is it the pure vitamin C you’re taking (powder form for eg)?
I’ve not heard of taking iodine via the salt pipe - I need to look this up and the alternative practitioner you mention. I’m interested to see how you get on - it’s always good to hear of alternative options.
For now I feel I need a reset to get me off this cycle of infections and I’m gathering all the info kindly given by the people on this forum (and yes, I’m making a note of your info too!) and will come up with a list of questions for the consultant in September.
The HIB doesn’t sound good and I hope your self treatment makes a big difference and gets rid of those bugs! Keep us posted please!
I’m always interested in alternative remedies and have tried a few myself - not quite as drastic as your very high doses of Vit C. Are you spacing these throughout the day and is it the pure vitamin C you’re taking (powder form for eg)?
I’ve not heard of taking iodine via the salt pipe - I need to look this up and the alternative practitioner you mention. I’m interested to see how you get on - it’s always good to hear of alternative options.
For now I feel I need a reset to get me off this cycle of infections and I’m gathering all the info kindly given by the people on this forum (and yes, I’m making a note of your info too!) and will come up with a list of questions for the consultant in September.
The HIB doesn’t sound good and I hope your self treatment makes a big difference and gets rid of those bugs! Keep us posted please!
Hi Zoe… it’s only once per day and yes, the Vit C is in powder form.
The iodine is just 2 drops in the salt pipe every other day but I’m still experimenting with this… and I may go with just 1 drop every day & see how I go on. The salt pipe contains sea salt or Himalayan salt but the salt is used purely as a delivery medium.
All the very best… and please let me know how you get on.
i had azrithromycin on and off for 4 weeks. My phlegm has been green in colour since 2019 and all I got was " PROBABLY THE RIGHT COLOUR FOR YOU"
How wrong can GP/Consultant,/Chest Physician/Pulmonary Rehab people be. Luckily a young nurse listened to me, had a word with the pre-op team and did a spiutum test - RESULT was pneumo monas a bacterial infection of the lungs - hence several infections a year. Unfortunately my hip operation had to be cancelled as I was then proclaimed "unfit" - I was all set to go prior to sputum test. Needless to say I have NOT been tested by anyone after all the antibiotic to find out if I still have this bacteria but am seeing Orthopaedic Cons in October so maybe he will listen and oblige me by doing a test.
Ask whoever you are seeing to do a sputum test as sputum SHOULD - as we laymen know - be CLEAR.
Hello and thanks for your input. I did have a sputum test just before my most recent infection to test for any underlying bacteria not treated by the antibiotics I had been taking. Initial results were clear and I’m waiting for the follow on results which take longer..
I hope you manage to have further tests to confirm you are now clear…. And that you can soon have that hip op!
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