Hi everyone, hope you are all as well as can be. Sadly, I have not been at my best for quite some time. Since September (possibly before, I cannot remember) I have had repeated infections that don’t seem to be clearing up properly. I’m on antibiotics most of the time as a result but they keep using the same one which clearly isn’t working. I’m supposed to only have mild bronchiectasis yet it doesn’t feel mild when I’m constantly at the gp’s getting yet more ab’s. I think, since September I have had 7+ infections and I suspect it’s the same one just not clearing up. Back in late October I had an ambulance out as I couldn’t breathe and they told me to get the gp to supply emergency meds but the gp refused. They never check sputum either. I have run a low level temperature almost permanently throughout this time. Right now, I can hear the wheeze and the noise audibly and my upper back hurts. It’s become so sensitive that anyone touching it causes me pain, even from a light touch. I need to ring the gp again today (last lot of ab’s finished Monday) or risk things getting worse over the weekend.
I haven’t yet had my letter through for my consultant appointment as it hasn’t been six months since I saw her.
I can only assume this is not normal so what is going on? Should I try contacting my consultant since the gp surgery seems reluctant to try anything but amoxicillin or just wait until I see her? Should I push for those ab’s?
P.
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ladytelita
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Oh dear, don’t start me on the ignorance of GPs! You cannot go on like this because the constant level of infection will further damage your lungs. I suggest that you phone your consultant’s secretary. Tell them how poorly you feel and that the GP is simply letting it go on and is not treating it sufficiently. Ask very nicely but very firmly if they can fit you in now. Tell the consultant the problem that you have with the GP. Make sure that they write to the GP with their instructions and send a copy to you. I am afraid that with bronch we have to be very proactive in our own interests. If the GP proves to be a brick wall we have to go over it.
Amoxicillin has never worked for me. I take azithromycin.
Amoxicillin is about as good as a box of smarties for bronch. By now your GP should at least have sent off a sample of mucus to try to find out which bug is in there and which antibiotic reacts to it. These labs are not always accurate and often come back that nothing is there but it is worth a try whilst you are trying to get an answer from your consultant. Get a pot from the GP surgery and take a sample in early the next morning.
I agree with all the above. Also you need to write a letter to the practice manager of your GP surgery (I know it's pain, but legally they need to follow it up), explaining what's been going on.
You need to have a specialist take a good look at you, I would suggest you may need a CT scan to have a good look at what's going on.
Insist a sputum sample be done, I believe that is NHS protocol for this condition anyway. Also a good treatment of continuous abs, atleast 21 days with no break and ask for Clarithromycin as it's generally the best one for upper respiratory infections, also it can be used alongside a penicillin such as Augmentin for an even better result. E.G you can take the Clarithromycin for 21 days and the Augmentin for 7 or 14 days.
There is no point in giving you the same ab if it's not working, and if it's Amoxicillin then we'll it's not really up to the job, even Doxycycline doesn't always clear an infection.
I'm so sorry that you feel awful but unfortunately you are going to have to be proactive and firm in the your treatment or you'll just keep getting fobbed off.
When you see the specialist ask for a device to use to help clear your mucus, such as a flutter device or an Acapella as that should help you a great deal and I think some people also nebulise with saline.
I assume you have a daily routine of the active cycle of breathing? This is vital and you should be referred to a respiratory physio for help with this.
I hope you get this sorted as no you should not be suffering like this, it is avoidable with the right help.
I have the same issues until cultures are done to identify the correct strain of bug .mine turned out to be Hemophilous influenzae bug and is treated accordingly.often case pneumonia and hospital stays.please make a nuisance of yourself and push to be seen or get in touch with the respiratory physio they are great in helping and good luck
The same, now colonised with Haemophilis and need Doxy and Augmentin Many GPs only seem to know about COPD and need specialist advice for B'sis patients. Am on Doxy 3times week over winter
It's horrible in a cycle of infection goes on for ages, I have been put on doxycycline today because I can't shift a cough.trouble is it's the unseen pneumonia sepsis worry if you don't take antibiotics
So sorry to hear you are having such a hard time with your GP who obviously do not understand your condition, you are damaging your lungs more by constant infection and clearly need a change of antibiotics, I had been on Amoxacillin but it stopped working so was changed to clithromycin for flare ups, but I am on Azithromycin three times a week each winter all the time you really need to do regular sputum and get your Consultant to write to your GP ASAP.
Sometimes a call to secretary may get you seen quicker due to repeated infections.
Iam also on Azithromycin3 times a week but has not helped been unwell for 4 months now on 50 mg pedestalone not sure how it’s spelt plus Doxycycline still can’t breath .lve used every device there is but still do not cough up any phlegm
Reading your post, if that was me I would phone the Consultants office. It is inconceivable that a gp will not give you what you need and what is standard practice. When you feel better I would suggest that you pursue that. It simply is not right. If you do not get the treatment you need then the condition of your lungs can only deteriorate.
I was told y a pulmonologist at an early stage in my bronchiectasis 'career', having mentioned that amoxicillin did not seem to be working for me as well as previously, that 'most people' of my age (then 63yo) that have had a lived a life with modern medicines in western countries - he was Thai, but trained in US - will have developed some immunity to amoxicillin on its own. It's a relatively early stage penecillin and is cheap as chips which is which is why people in state health systems tend to be fed a lot of it I reckon!
Amoxicillin plus clavulanic acid (brand name "Augmentin" in the UK) remains an important tool in the rescue pack box though so we shouldn't write dear old amox off too quickly as being useless.
Standard guidelines for bronchiectasis patients with frequent infections are that 'experts agree' that rescue antibis should e taken for 14 days. Maye your GP has been shortchanging you ladytelita?
I had the same problem as you until last June. I was having a chest infection once a month and, like you, I felt it was just the same infection not really clearing. Then I got a urine infection at the same time and the doctor had to change my antibiotic from amoxicillin to one that would deal with both issues. I can't remember what it was but it worked and my chest has been ok since then which seemed to prove that it had been ongoing and the abs weren't shifting it. I've been put on Doxycycline for the winter to keep further infections at bay - will see if it works! The consultant has named two different antibiotics that my GP can use if I have a flare up. Maybe if you can get to the consultant he can do something similar. Good luck xx Moy
Thank you to all of you and your wonderful advice. I went back to the surgery yesterday and saw the oncall person (medically trained but not a full gp). He has seen me before and listened when I explained it wasn’t working. I am now on Clarithromyacin (spl?) as I am allergic to something in Doxy. I have been given another weeks worth with instructions to come back next Thursday if I am still not better. Right now I am so tired. I know it’s the medication but I can barely keep my eyes open. Feel a little nauseous too with a bad taste in my mouth but still hoping this works this time.
I will contact my consultant next week to see if an earlier appoinment can be made and she will probably write yet another stern letter. We had terrible trouble at my previous surgery over meds they weren’t willing to give me. Ended up ill for the best part of a year and on steroids and ab’s most months. Kinda hoping this surgery listens and takes thr consultants recommendations seriously!
I have also wondered if maybe nebulised ab’s might not work better? I don’t currently have one but have had to use them on occasion including a few months ago. Might suggest it as a possibly alternative. Does anyone have any experience with them at all?
If you can see a consultant who specialises in bronchiectasis then do so. Ask for immunity tests if you haven’t already had them. Also, how well are you doing with clearance?
I’m not sure if she specialises in bronchiectasis. I know she sees patients with copd etc also but we are limited to whoever ia available here in Cornwall.
Never had immunity tests done and since being on Carbocistiene clearance does not happen so easily. I have an appointment on the 27th with a respiratory physio so maybe they’ll be of some help.
I do have other health conditions including asthma and inhaled allergies. I also suffer from fibromyalgia, hypothyroidism and I can almost guarantee any attempt at pushing myself, either by taking a walk or just not resting enough will result in an infection. It’s devastating since just six years ago I was fit and healthy (had asthma but that was my only diagnosis back then).
Your history has parallels with my OH. He too has asthma and mild bronchiectasis. He had a long period of back to back infections. He saw a new consultant who specializes on these diseases earlier this year. She immediately saw that his history did not correspond with the fact that his bronchiectasis was classed as mild. She ordered immunity tests and we now know he has widespread immune deficiency (called panhypogammaglobulinaemia). He is colonized with pseudomonas.
Long term nebulized antibiotics and better clearance has resulted in a more stable situation. I am sorry that you cannot locate a bronch specialist because that is what you need right now. You also need to do something about clearance. This is crucial in order to keep infections at bay. Like you, OH uses Carbocystine, in his case three times a day. He also uses a Flutter Valve, Aerosure PEP device and Smart Vest. As has been said, there are other devices and some are prescribable. Nebulized mucolytics such as normal or hypertonic saline can be beneficial. You need to keep on top of the mucous, not wait until you are bubbling up. Active Cycle Breathing techniques may help too. As has been said, a robust approach to this illness is vital.
Your reply has really made me think. My mother has immunity issues (takes her three times as long and will be hit by any cold/flu/virus/infection three times). I don’t know if she’s ever had a proper diagnosis for it but she’s had some seriously near misses with her life a couple of times.
I will take your reply with me when I next see my consultant. She tends to be good at listening to what I say so hopefully she will get me tested although it can be like getting blood from a stone with my veins.
I also take carbocisteine 3 times a day. Before doing so I was always coughing and bringing up gunk to the point of embarrassment. It never stopped! My daughter used to complain of me coughing in my sleep but I don’t think that is as bad now.
I am hoping the respiratory physio will help with removing gunk. I can’t imagine what else they would do and won’t find out until the 27th.
I would follow you but cannot work out how to so I can let you know how it goes but I will post them anyway.
Thank you for your words. This may bring about much needed change in my health.
I wish you well Pamela and hope that a new course of action will help you achieve stability. If you do have immunity problems your care needs to be managed jointly between the respiratory and immunology consultants. That is in the British Thoracic Society Guidelines on the Management of Bronchiectasis. New guidelines are about to be disseminated in early 2019.
Immunoglobulin treatment is sometimes offered for immune deficiency but it is not without risks. We do not yet know whether he will need, or be offered this but just knowing has been useful because you then understand the issues and plan accordingly.
In my experience good clearance goes a long way to reducing infections, plus the nebulized antibiotics. The one he has now is mixed with saline and that helps loosen the phlegm.
As has been said, sputum culture and sensitivity are really important in order to get the right antibiotic. I’ve lost count of the number of courses of Doxycycline he’s had and which have been useless because it wasn’t suitable.
Who is it you see? Sarah Coulter? She is very nice but I am paying to see Professor Michael Loebinger tomorrow as I want to see someone who really knows the disease!
I too was like you but now I send in a sputum sample straight away and start my rescue pack until results are through ,I alternate between doxycycline ,clarithromycin and augmentin,As littlepom says we are in charge of our bodies and self management is a priority.Good luck ,by the way have now gone over 4 months with no infection due to postural drainage and acapella usage x
Hi Ladytelita, same thing happened to me this year - took amoxycillin for two weeks when it started to clear up but then as soon as I stopped it came back again. Was put on clarithromycin for two weeks, then amoxy for two weeks, then back to clarithro full time (and incidentally if you do try these they make you feel rubbish for the first day or two) but the infection just got worse. The practise nurse then gave me doxycycline about two and a half weeks ago and I'm feeling pretty good now (though it has been going on so long I don't want to talk too soon). It does sound like your infection is getting really bad so you need something and it also sounds like your doctors are rubbish - that's rotten for you. And the practice nurse was more knowledgeable and helpful than the doctors too. Sending best wishes
It’s a shame I’m allergic to Doxy. I’ll never know if it would work for me. Suspect the next option is inhaled ab’s through a nebuliser if this doesn’t work.
That is a shame - sorry to hear that. It is such a worry when the antibiotics don't seem to work and so wonderful when they do. Still feeling good here, touch wood. All the best
I take in sputum samples to the GP office whenever I feel there is an exacerbation. 2 years ago I was like you...6-7 infections one winter. In the end ciproflaxin cleared it. Since then much better...daily clearing of lungs with breathing exercises, and lots of exercise...zumba, swimming, tai chi, walking etc. The physio at the Brompton was very helpful in recommending that. I always have doxycycline with me, and that is on repeat prescription with the GP. You really do need those regular sputum tests, and the right antibiotic.
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