Has anyone else got pseudonymous ?

I was diagnosed with pseudonymous about 18 months ago, have had the normal antibiotic's ans steroids but they don not touch it, had 2 weeks in hospital in IV antibiotics, fine for a few weeks then the trouble started again, I also have COPD and asthma, so I am breathless most of the time now, my question is what treatment have people had and has anyone been told that they could have an infected part of the lung removed? Thank you for reading in anticipation!!

20 Replies

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  • I have Aspergilloma - fungal infection treated with Itraconazole just had a bad set back in hospital for 3 weeks on IV antibiotics for 14 days Val

  • So sorry to hear this Valm, I am discovering all types of conditions I have never heard of and yours is now an addition! what type of relieve did you get from the antibiotic Itraconazole ? do you get very breathless?

  • Yea breathlessness still there on oxygen 24hrs think they are throwing everything at me at the minute, going for a trial for inhaled antibiotic’s via the nebuliser next week x

  • Marian-Anne, I have bronchiectasis and had pseudonymous diagnosed from mucus sample, they treated it with Flucloxacillin 500mg and Tetracycline for 2 wks. I keep "draining" my lungs with a simple device, 3 times a day, every day and so the next sample showed I had got rid of the pseudonmous... if you clear the gunk then it can't get a hold.

    Also, in 1972 they found infected/damaged part and removed half my left lung, this helped but there is damage in middle of my right lung too, I just keep clearing it and keep away from people with infections. late summer is when I manage my life best.

    hope this helps. su

    val, did they say where you got that Aspergilloma from ?.. I got some black mould on a wall and I am frightened of it !.. we keep washing it down with strong bleach, I keep mask on there.

    anyway, hope you are comfy back home and put that set back behind you.

    su

  • No they didn't say sorry, going very slowly knocked me for six x

  • not sure if either of you want to hear this, about Aspergilloma or the Aspergillus but if you want to find out more read on here:

    blackmold.awardspace.com/as...

  • thank you Zoee, that link had loads of useful info. my mind is always searching for solutions, you will think I am nut's when I say that I am now thinking of a way to completely line my walls in salt tiles !!

    help the breathing no end, easy to clean with a damp cloth, no mold on that.

    su

  • Hi. Please can you tell us all what the simple device to drain lungs is that you use. ta julie

  • hello julie,

    yes the device is a pep... positive expiratry pressure, just a sealed mask covering mouth and nose to breath in and out of. the pressure can be altered and I can feel the secretions being loosened after 20 or so. there is a pipe and pressure gauge too, so you don't strain too hard.

    There is another similar, better device which oscillates to disslodge secretions, it is an acapella. I need one but have not been given one yet... It is rediculous that still some people with lung problems are not given these things, they are suitable for copd, bronch and Cf, anyone who wants to clear their lungs.

    You can also use Autogenic Drainage which is a very good breathing sequence, it is gentle and effective for some.

    hope this helps julie, sorry for delay, struggling with not well hubby !

    su

  • Hi su, thanks so much for this info. Hope your hubby is feeling better soon. Julie

  • yes, he's rapidly picking up now he stopped taking atorvastatin ! it caused very bad leg pain, stopped him walking or sleeping well.

    I see on www.wddty (what doctors don't tell you) that statins damage arteries, will speak with gp.

    hope your ok there.

    su

  • Hi Marian-Anne , I have had Pseudo twice the last time was late May . It was treated with Oxytetracycline . So far no repeat of the infection but the Dr was not happy that I had it in the first place, apparently 'health' people are not affected by it ;-(.

  • I must say they are having a hard job getting rid of it, but here is hoping this week I will get some answers and a treatment plan, as long as I can rid myself of one of the infections life may be a bit easier, thank you for answering.

  • Marian Anne I do hope you are better soon, it's scary isn't it having these odd infections to cope with on top pf everthing else.

    Take care....

  • It certainly is, and I hope we all have a better winter this year, thank you for your kind message , i will put up the results of the consultants visit as it might help someone else.

  • Hello

    i have had a year with the same problem, GP's well mine are not educated in this area., i started to take fish oil + vitamin A .D,B12 zinc ecinatia and kelp tablets to boost my immune system and eat loads of fruit and exercise every morning and i am getting better again and no pseudonymous so far,

    if that's of any help

    regards Richard

  • Thank you Richard, I will try anything!!! I was actually talking to my partner about going back on ecinatia so will add the others to the list, I hope you stay free and well this winter, Regards Marian

  • Hi Marian-Anne

    I assume you mean pseudomonas sweet. It is a very difficult bug to irradicate. We have many peeps on Bronchiectasis R Us who are colonised with pseudomonas. This doesn't mean they have problems with it all the time, but it does rear it's ugly head from time to time. Most of them have been prescribed Azithromycin Mon, Wed and Friday or one a day as a maintenance programme, usually after it has been controlled. As I undrstand it the Azith inteferes with the bugs making biofilms and have anti inflammatory properties, but you would be best to ask them on the site or contact BLF helpline. Are you under the care of a respiatory consultant?

    I had lung surgery 49 years ago, which they would not do now as my bronchiectasis is scattered. However they do sometimes resort to surgery but only if the damage is localised. No quick fixes really, but it can be well controlled if treated properly.

    Good luck

    XXX

  • I also suffer with COPD and asthma and was diagnosed with pseudomonas a few years ago, my GP hit it with everything he could at the time and it appeared to have gone. Unfortunately this was not the case it just laid dormant and twelve months ago it reappeared, By then I had moved home and my new GP tried lots of antibiotics which would calm it for a week or so and then a new infection would start.

    The inevitable repeated dashes to hospital and two week stays followed,until the Consultant diagnosed pseudomonas and tried several types of IV antibiotics but in the end admitted that this bug is almost un-killable.

    I have been using Colomycin through a nebuliser twice a day since my discharge in November. Although I picked up another totally different infection I feel there is a definite improvement, I able to breath through panic attacks(which have reduced dramatically) and know that I have more control, but twelve months of infections and stays in hospital have left me very weak, just have to remember to take it slowly and not do anything silly. Just waiting for an appointment with Rehab, the last two appointment clashed with being in hospital.

    A final word, mould. Our washing machine sprung a small leak and soaked under the laminate flooring, black mould formed, the result was while in the house breathing was very difficult once outside it improved. After one really bad attack and a stay in hospital a Doctor suggested that we check out the house to find what was causing the reaction, this time it was easy on return from hospital we could smell it, once the laminate was gone and the floor sealed I was able to breath and my wife's cough that had been there for weeks also stopped almost overnight. The fortunate part was the insurance company paid for the new floor and for the sealing.

  • Thank you so much for you reply, we found mould in our last house and had to have it treated but I am convinced that this is were the problem started. I like you have been on everything going to no avail but have found that if I keep on a low dose antibiotic and low dose steroids it does appear to keep it in check. I am being threatened with hospital today!!! intravenous antibiotics again as my left lung is really bad, but until the D&V bug has gone I will fight it at home!!! stay as well as you can, glad both you and your wife are feeling better.

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