Pseudomonas Help!

[Shonkie]

I am going through a perfect storm with Pseudo, RA, AS and a leaking heart valve. This has reduced me to considerable breathlessness, fatigue, palpitations and disability. Has anyone had any treatment for pseudo? I cannot take floxacins as they exacerbate the AS and my lung specialist has never given me any other treatment. I haven't seen her for 6 months nor rheumy though she promised an urgent appt (not sure what the word urgent means in that context!). Any positive experiences with Pseudo treatment i can hope for. The NHS dysfunction currently is beyond bearing.

[Minehead123]

Hi shonkie I live with pseudomonas a of the lung and it is hard going sometimes. I take a rescue pack of ciprofloxacillin 500 twice a day for 14 days. It's the only one that works apart from iv which you probably need. I hope you get sorted soon. x

[Patk1]

U should speak to yr dr for advice and treatment as,on how to proceed.maybe worth ringing consultants ssecretary x

[Bingofox007]

always had ciproflox for pseudomonas too. See gp for review for sure. Take care 🦊xx

[Hidden]

Hi Shonkie, I'm really sorry to hear that you are going through such an awful time with your health, I have read that medical grade Manuka honey is good for treating the dreaded pseudomonas, a table spoonful a time which can be mixed into warm water to drink if wanted, but in moderation, obviously it's jarred honey not the stuff in the tubes that can be bought, I might even try it myself, I have just been floxed for a pseudomonas as they say, can't say that I'm impressed with the ciprofloxacin, it's left me feeling very chesty...I hope you get the treatment that you need very soon..

[Shonkie in reply to Hidden]

Thank you, Manuka honey sounds more attractive than some of the other options!

[Alberta56]

You need to go back to your GP. Ask him/her to try and get the consultant to see you. Also try the consultant's secretary. I'm afraid we lungies don't get the help we need unless we make a fuss, which is not easy when you're feeling rotten. Good luck.

[tonymarl]

Floxacins are the only one that will fight phusedomas. You could try doxycycline. I've had phusedomas for over 6 years with two breaks of a year each. Phusedomas is always in the system, the antibiotics weakens it. But if you have a weakened immune system it will keep coming back. I've emphysema and I've been bedridden since last year. And because of it, I'm now on oxygen 24/7. I'm only now able to get out of the house with ambulatory oxygen. Try doxycycline, its worth a try. My rescue pack for home contains ciprofloxacin and steroids. Sorry to hear of your predicament hope they find something that will give you some relief.

[MarieW-F]

I recently had pseudomonas and it was treated with ciprofluoxin (sp?), I saw my consultant a few weeks later and he said that next time he’s want me to have nebulised colomycin I’d I get it again. Not sure if this is an option for you ?

[Lfcpremier]

Hi. I have pseudo & ciprofloxacin is not an option. My consultant has suggested nebulised colomycin which is taken regularly to suppress it.You need a trial at hospital to see if you react OK & I would ask if I could start on the weakest dose possible because Dr's tend to give too strong a dose of drugs to patients. I don't tolerate any drugs well.

Good luck!

[Mooka]

if you can’t tolerate cipro you will need iv antibiotics to get the pseudomonas numbers down. I had two weeks of two different iv antibiotics to kill it and have nebulised colomycin ever since. (6 years). This has kept the pseudomonas at bay. Good luck it sounds like you need to go back to your doc and insist on some proper treatment.

[bwp91]

I’ve nebulised colomycin twice, first time for two months, second for four. Each time I really felt so much better by the end - as though my lungs were cleared out. I imagine the dreaded pseudomonas is still lurking but I’ve been really well since, about 4 years now. Good luck!

[poppyshola]

Hi Shonkie .... I wholly sympathise with you ..but don't lost hope ... you just need to find a consultant that spends the time to figure out how to treat you as an individual without relying on the quick and easy ciprofloxain to do their work . If you cant tolerate you CANT and that's it ... I have had Pseudomonas so many times and colonised too .. it even didn't show up on my results after being colonised so either it found a good hiding place or it went away for a while ..

I'm under the Royal Papworth heart and lung specialist hospital and I have so much admiration for every single consultant and the Lung Defence Team ...

As a patient you are treated with respect and understanding and they do their absolute best to figure out and treat every infection that pops up...

I've had Pseudomunas A, Staphylococcus and Aspergillus..

GP will use Ciprofloxacin because it often works...for me Ciprofloxacin made me so ill after just one pill so NO WAY will I use it .. and my consultants respect that ..

I am set up with IV antibiotics I do at home.... which is tried in you before you go home... but it's a brilliant system ... I I have any problems at all .. I can ring and speak to a member of lung defence they will pass my details on to a Consultant and they will discuss what will happen and with what they will treat it ...

And if I have any worries at all I can email or ring and I'm never forgotten..

I would dearly love many of my fellow Bronchs to be treated by them ...

If only you were close by or didn't mind travelling ... you could ask to be referred there ... people come from all over To go to them ...

[poppyshola in reply to poppyshola]

Sorry forgot to tell you the meds they use are Meropenem and Ceftazidime... they do the trick