Hello, I wonder if anyone else has this experience. I have had a chest infection on and off since Christmas. Sputum results showed staff or strep (can't remember) but it is the bug that is normally treated with Doxycycline or Clairythromycin. Unfortunately I throw up with the former and when I tried the latter in January I got the lightheaded/dizzy symptoms etc and the doctor told me to stop taking them immediately. He gave me two weeks of ofloxacin which worked for a bit but gradually my lungs got worse. So far I have had three lots of ofloxacin this year and finishing the third lot today (no doctor's visits or sputum samples due to Covid). I exercise vigorously and do chest clearance three times a day. One of the nurse practitioners said they were the only antibiotics that would work for me.
So couple of questions: does that mean I shall just gradually succumb to the infection and die or are there other antibiotics I could take?
Plus use Qvar inhaler and gargle after inhalation as it can lead to thrush in the throat which I had once - is this the same bug and if so should I keep using the inhaler or is it different once it goes in our lungs?
Thank you and hope everyone is doing well
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Fionafish
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So sorry to hear about your problems. I have problems when taking either Co-amoxicalv or Doxycycline. I feel so sick its unbearable. Last infection I was given Amoxicillan which was fine. I find it hard to believe that there isn't an antibiotic out there that will help you.
Yes you need to gargle when taking the inhaler again I've had thrush a lot and it's unpleasant. I believe it is caused by the powder remaining in your throat so would say it was a different bug but maybe someone else has more knowledge.
You really need to speak to your doctor, they are still working and wouldn't want you to continue with this infection.
Aww Fiona, no darling it definitely doesn’t mean that! What a stupid thing for the nurse to say to you. Of course you’d immediately worry, who wouldn’t?!
Lots of us have problems tolerating various antibiotics, but there’s always another one they can try, though of course some can only be given intravenously, and a few are kept for hospital use only & used very sparingly so as to avoid resistance.
Amoxicillin is usually good for strep. And for staph, flucloxacillin works well. Both of those can be prescribed by your gp. So don’t worry, you’ll be ok. If your gp isn’t sure what to try next, ask him/her to speak to a microbiologist at your local hospital for advice. My consultant has done that sometimes when she’s scratching her head over what to try next. They always seem to find something though!
That is so reassuring and helpful Hanne62 - thank you.
I have been taking amoxicillin for a year as a prophylactic. I was meant to see the consultant in December but it didn't happen but I was wondering about stopping it as summer plus not going out as partner is shielding. Would like to give my body a rest from ABs but did take it this morning - tricky to know. Talked to doctor in the week but brain wasn't working properly and forgot to ask about the amoxicillin so will ring again Tuesday.
I'm sorry to hear about you being unwell. I'm also sorry I can't really advise But I do see you have some good advice from Jozey and Hanne. I just wanted to say hello and long time no see. I hope you've been managing okay through this crisis. Take care.
Have been very busy learning new things - apart from missing daughters badly we are all fine here and I feel very fortunate to live in a place with lots of trees and birds. There are blue tits nesting in a box outside the kitchen window and we saw the baby for the first time this morning - so wonderful. Have you been busy and how is life without your daughters (was going to write about the one that has recently left but then had memory that you might have another one)?
I love that you can see the birds 🐦 especially the little baby so close up. It must help the days go by very pleasantly. I have struggled a bit with the side effects of the post transplant medication I take. But I have since accepted that there is a price to pay for breathing better and I will willingly endure this and adapt. My girls are fine, and doing well thank you. My oldest turns twenty seven today. My youngest will be twenty three in June. Time flies. Take good care. Love to you too. xx 💕
Hello Caspiana, thank you. There are two baby blue tits and they are doing fine, touch wood, its so wonderful to see them every day.
Sorry to hear about the side effects, that's tough. I've been following the Stoic philosophy for decades, some times more successfully than others (!) and am guided by the idea of what is in our control and what is not - and you remind me of the serenity that can be gained.
Your daughters are a year younger than mine - another daily blessing. The younger one has been struggling with anxiety with the lockdown but is working on strategies and will hopefully emerge stronger. It is a hard time for youngsters which adds to the enormous pressures they are under (guess you are aware of our lazy, incompetent and heartless leaders).
Doxycycline and Ammoxciline are the only 2 antibiotics I can take. I don’t know what will happen when I get immune to them, I get chest infection one after the other, in between chest infection I take Azithromycin 3 times a week to try and keep the infections down but for the last 10 weeks during lockdown I haven’t had a infection no idea why. Carol
Thrush is a fungus, so antibiotics won’t help with that. Gargling after using the inhaler is helpful to try & prevent it.
Your GP can prescribe things like Nystatin or Dactarin Gel to help get rid of it.
I get it quite a bit & get v frustrated that you take medication to help one bit of you & then due to side effects of that drug you get something else which means you need to be prescribed something else on top of what you’re already taking & so on ......
Thanks for the information. The last time I bought ointment from the chemist - think it was Dactarin. Tasted lovely but bit tricky getting it on the back of my throat - cue gagging!
Carol gardener I too take the same antibiotics swap between them be pending on how bad the infection is.
Was also pating myself on the back about having no chest infection since lock down 🤔lo&be hold A&E last night (scared to go but huddy insisted) another infection 😞
I have taken amoxiclav ,erythromycin,and now on azithromycin,can’t tolerate ciproflaxin as gives me severe joint pain ,there are many antibiotics available so chat with your go and try some probiotics as they ease the after effects ,hope you get well soon and don’t give up xx
Sorry to hear you have had a rough time. Last year I had episodes of infection that cleared then came back again & again .On Doxy regularly then Co Amoxiclav for rescue antibiotics but the last lot came me diarrhoea so swapped to Clarithromycin. Finally cleared and since then 6months no problems. Guess what trying to say in roundabout way is that Bronchies can gave a rough period then feel pretty well for ages so hang on in there
Have you tried taking the doxycycline with food.? That certainly helps me with the nausea. I'm not sure why you can't give a sputum sample to your GP....it's all enclosed in the bottle and then a plastic bag. Mind you the ones I give in to the GP scarcely ever come back having grown anything. I think they take too long to get to the hospital lab.
I find ciprofloxacin works really well for me when all else fails because I have had pseudomonas and presumably it has stayed. Sadly the last time I took it I developed awful palpitations and stopped taking it after 10 days. The abnormal heart rhthym took about 6 weeks to right itself. has that happened to anyone else?
Thanks stones93, the last time I tried doxycycline was early last year and I am pretty sure I took it with food. Do remember drinking lots of water with it too which helped when it all came back up anyway (sorry, bit graphic). I haven't tried ciprofloxacin but would that be really close to the ofloxacin that I have just finished taking? Maybe its one of the mixes?
Agree with you about samples and also not growing anything. I can't just produce phlegm at the surgery but bring up the most after ten minutes of active breathing or really vigorous exercise (on carbocisteine so it is easier) but then there is the delay.
Sorry to hear about the palpitations, that's rough. I had them years ago along with my heart skipping a beat every ten beats or so, it was not pleasant. Anyway knew acupuncturist so told her and she sorted it out in five minutes.
Does your GP not supply you with sputum sample bottles and forms to keep at home? I have 2 at home all the time, then you can do the sample at leisure and take it in. The form is already filled out you just have to insert date and time and the whole thing is encased in a plastic bag. I agree, producing a sputum sample to order is well nigh impossible. They always ask me to at the bronchiectasis clinic and I have never succeeded.
Keeping weight on is so tricky with this condition. I have been too thin for a long time but since December I have been trying to eat 3000 calories a day and have put on a stone (mostly on my gut and arse I am afraid to say but hey!)
My children are grown up but I still worry about how they would be if I died young (I'm 62 and don't feel very old). Can barely imagine how much extra stress you are going through with young children.
I agree with Hanne, your nurse made a silly remark which has frightened you. I think she was probably looking at your latest lab results. They usually only put on the few antibiotics which the bugs were shown most sensitive to. So not only will there be other options for the bacteria you are growing but they are only a guide in any event.
I empathise with you so much having intolerances to antibiotics. Personally I am intolerant to many medications, including many antibiotics, including many of the macroloids (most of the mycins and cannot tolerate Cipro which is pretty much the only oral med for pseudo. However I can tolerate a couple of IV antibiotics which are licenced to use at home. We are all different and the 2 oral abs I can tolerate are Doxy and co-amoxiclav.
To answer your question: No it doesn’t mean you just gradually succumb to the infection and die and yes there will be other antibiotics you can take.
You don’t say why your December appointment with the consultant didn’t take place. If it were me I would telephone consultant’s secretary, to see if you could have a telephone consultation. At the very least you need to get back to your GP. Btw does your consultant have a special interest in bronchiectasis? Makes a difference.
I don't know why the consultants appointment did not happen and was going to get in touch December/early Jan but we were on holiday for a lot of it and then Covid was starting to get more known about so I didn't bother as thought they would have bigger fish to fry. He does have a special interest in bronch and I will take your advice and ring both on Tuesday.
Hi Fiona - Sorry to hear about your issues. I too have Bronchiectasis. I was officially diagnosed in February last year but suspect I have had this for most of my life. I am now 42 and have been struggling for at least the last 5 years to the point where I got used to being very sick and barely being able to breathe. My partner often worried that I wouldnt wake up in the morning and urged me to find out what was going on. Before that I just kind of accepted this as normal and battled on.
I did alot of research and stubled upon a book called Beating Bronchiectasis written by Daniel Pecaut. This is basically just a story of his journey and how he managed to get healthy despite having this condition. What he did was pretty intense and he basically threw the kitchen sink at it doing a range of different stuff.
I had been loosely folowing this for about 8 months but never managed to do everything at once as it is basically a fulltime job to get it all done!Recently I have been doing all of the main stuff aside from accupuncture and my health has improved greatly. Last year I had more than 10 infections and kept swapping between doxycycline and amoxycillan but the latter appeared to stop working so I no longer take it. At the moment I am just on a 3 month course of doxycycline and continue to do all the various health routines at the same time. Doxycyline can be a bit nasty for my stomach especially when I switched between the two antibiotics but i seem to have got used to it now.
I do a little buteyko breathing, make sure I do at least 30 minutes cardio a day while being disciplined enough to only breath through my nose even if it means a huge drop in intensity. I alternate between cycling and walking up a steep track - Daniel ran daily I think but I am not a fan of running. Nose breathing is the core of what I do having retrained myself to breathe pretty much. My nose used to be so blocked that i hadnt taken a breathe through it in years. I do nasal lavage twice a day which is basically flushing it with salt water. I actually tape my mouth shut at night so I ensure that I only breathe through my nose while asleep- but it is a risky thing to do I suppose. This was something I did off my own back and seems to help me sleep better and actually wake up wth some energy. I also nebulise L-Glutathione plus twice a day. I bought a product from theranaturals. I like you also do lung clearance and this is very important - I just do it twice daily laying on my side. I have a pari -o-pep device for lung clerance but rarely use this.
For me it seems like the key is to not just rely on the doctors and antibiotics but instead try a holistic approach and attack this from many angles. I also work really hard with my diet eating lots of fruit and vegies (avoiding bread and limiting dairy and alcohol) and take a few supplements. Mainly just fish oil, cod liver oil (Vitamin A) and vitamin D. Trying to stay positive is also important I find - when I am struggling with that I start doing a grateful journal which helps to put things into perspective. Other than that I try and keep busy in a slow paced way and with no stress. I have been doing alot of vegie gardening lately which seems to be a good activity for mind and body.
This is a constant journey for me and i doubt I will ever be completely free of this. But I hope to get well enough to wind down alot of the routines and live a normal-ish life eventually. sorry about writing so much! - but I hoped that letting you know what i do might help in some way. Have a great day
Morning Russconz, thank you so much for your detailed reply - much appreciated. Also so sorry for late response - I only check in periodically and missed your post.
Gosh, it does sound like you have had a real struggle but have found a way to cope. I really like all the things you have written, but struggle with the nose breathing. Will give it another go. One doctor said to exercise till you are hot and sweaty with your heart rate way up so tend to keep my heart beat around 140.
Agree with you about the diet and I also take vitamin D (but not A). Hardly ever eat dairy food or sugar. Have started taking vitamin C because of Covid as it is good for the immune system but have heard differing opinions about whether it is good for people with lung issues so take it every other day (sitting on the fence haha). I am back on the amoxicillin once a day so have also started taking probiotics a couple of hours after the ABs.
I find I have to put so much time into managing the condition and motivation is tricky as sometimes I will dither before starting breathing and have to give myself a kick to get going. I don't like running either as worried about damaging knees so I have a cross trainer set up by a telly so I can watch Netflix (lifesaver - currently watching Breaking Bad for the second time). Your gratitude journal is such a good idea - we started one at the beginning of lockdown and it is now a habit to do it at the end of the day - will keep it going!
It is really lovely to read about your experience, so thank you again from a friend on the same journey
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