Suffered with Asthma all my life & got diagnosed with Bronchiectasis in both lungs 10 years ago, I'm now in my early 40's and have psudanomas in my lungs constantly suffering, coughing blood up etc .... I'm so low tried colomicin via nebuliser & had I.v For 2 weeks ... so low & scared got kids & wife and worried for them 😞
I can't exercise I'm short of breath just from getting dressed in the morning having a real hard time I've now developed headaches & short term memory loss .... Any help guys ? Or suggestions
Was told I'm amunne now to the std antibiotics (ciprofolxin azithromicin)
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Al39
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I am sure others will have useful info for you as I am new here although I just wanted to reply so you don't feel totally alone.
Do you have a respiratory nurse specialist ? If yes then do call and if it is answerphone leave a message asking for urgent help.
All the best
Ell
Hello A139. I'm so sorry that you are having such a rotten time. First of all you are not on your own. There are several of us on this site who have had bronch for up to 63 years. Most of us have been colonised with pseudomonas for years and know the frustrations of trying to keep on top of it. It seems to me. that although you have had two weeks IV the infection which is making you so ill has not been knocked on the head and you need more antibiotic. Nebulised antibiotics are usually only useful to keep the level of bacteria down once the initial exacerbation has been dealt with. I strongly suggest that you get in touch with your consultant. ( phone their secretary) and tell them that you are still ill. If you do not have a consultant go to your GP, tell them how ill you are and that you want to see your consultant or be admitted to hospital immediately.
By the way. Amoxicillin is not affective against pseudomonas. Ciproxin often shows as ineffective in the petrie dish laboratory situation but actually works in the body. 750mg bd for 14 days minimum. It is the only oral antibiotic which is truly effective against pseudo.
You will be feeling so low because exacerbations in bronch do that to you, without the added worry of caring for your family. Do get to your doctors immediately and don't take no for an answer.
Ive been plagued with Pseudomonas and have always been given 500mg for 5 days ...My friend mentioned the same thing as you and i will definitely be having a chat with my gp ....
Yes, i only spoke to my doc last week in the middle of another infection and he actually asked me what i wanted him to do about it ! .....I went completely silent on the phone so he said they will wait until im ill next time before they decide if they should give me something else.
Sad thing is i just said ok thanks because i didnt have the energy to talk to him. ""Im going to kick off next time"" is what i should have said
It does seem so and ive never had a clear sputum sample since 2014 so you would think someone would have worked that out by now as its the only thing that ever shows up when ive got an infection ....Now i know i will kick off
I despair I really do. One thing we all have to understand about pseudomonas is that once we are colonised with it, it is always there. The aim is to keep the numbers so low that the normal lab tests cannot detect it. Our clinic used to have access to the research labs at the QE in Bham where they could detect the tiniest numbers. However, that stopped when a new research protocol denied us those brilliant tecnitians and our samples go to the ordinary lab now. So often come back clear when there are actually a few of the little beggars in there, eager to start reproducing. I think that we are the best judge of when they are having a party.
Hi A139 you've obviously got Respiratory consultant as you have been prescribed Colomycin etc, but your Bronchiectasis does seem to be very severe . Are you under a specialist Bronchiectasis clinic? or specialist consultant? Being in your early 40's I should think that if you condition deteriorates rapidly you may perhaps be suitable for a transplant. Did the IV's clear your lung infection OK?
I'm no expert, no medical knowledge at all, but I find it hard to believe you have deteriorated this fast without some underlying reason, it feels to me you need more specialised treatment and help. Do you live near a specialist Non CF Bronchiectasis centre? if you are not with that centre already you should get your GP to refer you to one for assessment
Hi A, I really have nothing much to add to the excellent answers you've received but would just like to back them up on the urgency of you seeing a consultant. Don't think you're the only one who's had infections that didn't respond to IVs, nebulised antibiotics etc. it happens. It's happened to me and probably to several of us here. If the Pseudomonas is still there, then they'll have to try again to eradicate it by using different meds or different combination of meds. As regards Ciproxin on it's own as a treatment, I think it would not be strong enough to wipe out a stubborn colonisation of Pseudo. My last treatment for Pseudomonas was a month on nebulised Colomycin + Ciproxin. Taking both together certainly did the trick for me on that occasion.
Please see your doctor and let s/he know how ill you are and insist on a reference to the consultant you've already seen. I hope things improve for you soon. Bronchiectasis can cause bad spells for it's 'victims' but with the right treatment and control, it's possible to have lots of good spells too.
Please call your doctor ASAP. You shouldn't have to suffer this way. I hope you are better soon and let the forum know your condition after visiting the doctor. tbeth
Sorry you are having such a rough time. Have you mentioned the headaches to your consultant? I was getting headaches due to CO2 retention. Clearly you are most unwell at the moment and are needing some extra help. Great post from Stillstanding. Time to nag the medics. Take care.
Ahh! A139 I really feel for you as, although older now, I've suffered as you're suffering for many many years and it isn't good to always feel so low. As others have advised you need to get hold of your consultant and tell him/her that you need help. I'm sure they can get you feeling a little brighter/better. My consultant told me "I can't make you better but hopefully I can make you feel better", I sincerely hope yours can do the same for you. I have good times and bad but try to remember the good and strive to get back there. I too have Asthma (since a baby) and bronchiectisis with an almost permanent colonisation of psudanomas and aspergillosis. I'm very limited with activity but try and keep going, living alone I have to and manage to look after myself, home and garden. I hope you'll feel a little better soon and be able to enjoy your lovely little family. Joy.
Wow guys Thankyou so so much you feel so alone with this until I saw all this I actually posted it to get it off my chest I didn't think anyone would reply so Thankyou all.
well as for update I rang my specialists secutary & he managed to see me today at the end of his clinic. Been prescribed x2 750ml ciprofloxcin for 2 weeks for a bug that is present & to continue on inhaled colomycin x2 a day, he wants a new spit sample by the end of next week & to see me the week after, guys Thankyou so much for all your help advice & comments it really has cheered me up I don't feel as alone as I did ..... I have a memory test to go to Monday and to talk about the headaches.
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