emergency antibiotic withdrawal

[fleur24]

I saw my GP last week because I needed to use my emergency antibiotics (amoxicillin) when I was away at my daughters for a few weeks.( I have haemophilus bacteria) and I wanted some more emergency anti b's He told me that he will no longer give them to me and that I had to try and get rid of infections myself first then go and see him if this isn't working. Surely with bronchiectasis, I should have these antibiotics at home for emergencies. I am really worried because my infections flare up quickly and are severe. Does anyone else have this problem with their GP?

[Toci]

Some GPs........

I would contact your consultant, or their secretary, and explain. They can then write to the surgery to tell them you are to have an emergency pack. I know others this has worked for. Good luck.

[tigershay1]

Thats not good definitely get your consultant to write to them. Same thing happened with my daughter shes on a coctail differentdrugs including high dose steroids etc took a very firm letter from her consultant to stop all the questions and rejection repeat prescriptions .xxx

[cofdrop-UK]

Fleur as a fellow bronchiectatic colonised with HI I can empathise with you. What is his reasoning for this decision - did he explain? I could understand it if he was going to contact you specialist.

I saw a GP - she wasn't arrogant but is into natural stuff - she advised me about diet to help GI which I have found really helpful. She also wanted me to try and ride the HI infection out, which from experience I was dubious about, but she still gave me a prescription recognising this may not be possible. I tried for 5 days with a high temp and my consultant said to start them.

I get a sample down if at all possible and then the medics and myself know what we are dealing with, but always start abs straight away and up the nebbing and physio. Until the results come back my guess is as good as theirs, as is yours, as without culture and sensitivity there is no certainty which is the right ab.

Do you have an appointment with your consultant soon hun? I would defo speak to him/her as you must feel so out of control of your own condition, especially if you become ill over the weekend or holidays. Then to have to wait for an appointment. Grrr.

Hope this gets sorted out for you soon.

love c

[fleur24 in reply to cofdrop-UK]

Hi cofdrop, thank you for your reply. He said that people are getting resistant and doctors are unable to do anything about it. Fair enough but I don't want my lungs to get worse with another HI infection. Love fleur

[fleur24 in reply to cofdrop-UK]

I agree I feel totally out of control which is stressful and not good for the condition. Thank you for replying love fleur

[fleur24 in reply to cofdrop-UK]

Forgot to ask............what is the diet that is is helpful for HI? cheers

[cofdrop-UK in reply to fleur24]

The advice given by GP was for GI reasons not for HI - 'trying to ride it out' was because of GI reasons too. There is a lovely very good friend of mine who is a member here who isn't taking abs for HI, although she doesn't get the high temps and she feels very strongly this is largely down diet. It is not my place to speak on her behalf but I am sure if she sees this she will contact you hun.

I understand for many years abs have been over prescribed and often not taken properly in the usually fit and well, but we do need help when we get infections. Just wondering if this guy really 'gets' non cf bronchiectasis. I bet he wouldn't deny a patient with CF abs, but in lung terms we are talking bronchiectasis!!!!!!

Great you are seeing a senior GP. You go girl - fight your corner.

love cx

[zube-UK in reply to cofdrop-UK]

Hiya there c, spurring us all on while struggling yourself again with the persistent HI, hope your temp spikes have dropped now ?

You are so right, some gp's just don't "get" bronch full stop, some have refused me when I have definitely needed help while my husband with a heart condition is prescribed pills by the bucket load, like as if the gp has been "radicalized" by the pharmaceutical companies !... but can we get ab's desparately needed for an aggressive infection.. sometimes no !

We fight on.... xxx

[cofdrop-UK in reply to zube-UK]

Hi hun - no spikes at present

Lost count number of the times GPs tried to prescribe 250 amox for 5 days. Might as well use them as a suppository!

love cx

[zube-UK in reply to fleur24]

Hi fleur,the others are right, specially my good mate cofdrop who like me has lifelong bronchiectasis, and HI at present.

It always annoys me when gp's refuse ab's for people with bronch, it's happened to me in the past when I had a particularly bad infection one Christmas, even though I explained to him that I had half a lung removed he refused to give me more than 1 weeks amox 250ml which led to that infection causing more damage in my right lung, mucus still catches there now, years later.

My last few samples came back HI but after the high temp died down I decided to stay off abs to see if I could recover without them, using diet to help, it's a worrying thing to do, you keep wondering if it is quietly colonizing inside you but if we take the abs they have side effects and knock the immune system about.

The diet is not a "diet"..... I eat as much as I like of vegetables,fruits and wholefoods, and always include some "raw green" veg, usually shredded into salads or smoothies. Also some fish and meat but that needs to be eaten separately from starchy foods - it is called food combining... the Hay Diet.

The idea is to keep the body with a healthy alkaline reserve, Infection can not thrive in a healthy alkaline body.

You will prob know that 80% of the immune system is in the good gut bacteria so I take VSL3# probiotic powder, it is strong, just using yogurt may not be enough and dairy can cause mucus.

Touching some wood now, I feel reasonably well and I never did before this diet change, I had pseudomonas, HI, strep pneumonia, morraxella and other nasty stuff but bit by bit I have improved over the last 6 years. Lovely cofdrop has helped me a great deal, I am so grateful to her, many others here and BRUS.

All together then - fight your corner, or as the lads say... kick ass !

[fleur24]

Thank you all for your answers. They have given me the confidence to tackle my surgery again and also my consultant. I also have made an appointment for the end of the month for a health review with a senior GP (second opinion). How are you all coping with this air pollution (those of you in the area). I've stayed indoors but my cough is worse even inside. Hope you are all taking care.xx

[peege in reply to fleur24]

Glad you're seeing a senior GP - I was going to suggest you see another one. That other was just not good enough at all. Could you be able to give the BLF helpline a call for advice and what exactly you need to ask the GP for. It would be nice if you can speak really confidently with the doc to ensure you get your needs met - including a very good antibiotic that works. All the very best to you

[happyfeet59]

Oh dear! Here we go again! Another 'lets cut down on antibiotics' campaign and everyone, regardless, gets swept up in it. Do you think gp surgeries get money for every antibiotic they don't prescribe?!

Sounds like your gp has been on a course! (and not of antibiotics!) He needs to be made aware of the nice protocol for bronchiectics recommending an 'emergency' pack. I would just see another gp.

Having said that we do owe it to ourselves to try and not start taking abs too early. My gp always tells me off for waiting too long but sometimes/occasionally I can ride the storm if I wait.But I do send off a sample for analysis at the start and I am usually right.

[zube-UK in reply to happyfeet59]

agree with you happyfeet, gp's seem unaware of the bronch protocol, I carry a blue coppy of the "BTS Guideline for non-CF Bronchiectasis" so the gp can see I am interested now.

[fleur24 in reply to zube-UK]

Hi where do I get a copy of this protocol? I didn't know about this. Thank you for heads up.x

[cofdrop-UK in reply to fleur24]

thorax.bmj.com/content/65/S... - page i5 - oral abs guidelines.

cx

[fleur24]

Thank you again for your encouragement . I really do appreciate it . I am defo going to try that way of eating... anything that helps and you certainly seem to have benefitted. Also thanks to you all, I will not let that GP control my illness. Where can I get a copy of that protocol. I didn't know about it. I shall wave a copy of that in front of him for sure. Kicking ass all the way folks xx

[george68]

Yes. My gp won't let me self medicate

[zube-UK in reply to george68]

Hi george, I am very lucky with my present gp, it was with his agreement and that of my lung consultant who often tells me to "see how it goes first", between us we get there and luckily it is working at the moment. What they never mention is how good fresh vegetable (to include some raw) foods eaten every day in correct combinations can help so very much, actually doing this has made the difference to me.

[cofdrop-UK]

It's wrong that they see it as self medicating It is in both your interests and that of the wider NHS that your bronchiectasis is well managed. Your GP is still the one who has to prescribe medication, and whilst I appreciate there may be circumstances where the doc feels it is not appropriate to leave the decision of when to take to meds (vulnerable, new to condition, other probs with alcohol etc), the majority of bronchs are very savvy and sensible, more so in a lot of cases than some GPs.

cx

[zube-UK in reply to cofdrop-UK]

yes, that's exactly how I see it c x

[fleur24 in reply to cofdrop-UK]

Agree totally.x

[fleur24]

Cheers cofdrop....will sort out a copy. f x

[onamission]

My old GP was like that I came down with the flu phoned the surgery asked for ab's and steroid told her I had COPD they would not give me any but said I could see doctor in 2 weeks I was on my own couldn't get out I had run out of morphine so I changed my GP and now I have meds in the house at all times.

[fleur24 in reply to onamission]

Wow that was outrageous. Thankfully you now have a better service from your new GP. Take care love fleur x

[onamission in reply to fleur24]

New GP's are fantastic however it has put me off taking strong pain killer for fear of this happing again so now its just spine blocks twice a year and climbing the wall the rest of the year.x

[fleur24]

Totally agree f x