Pseudomonas and breathing

[Saadi-Malik]

Hi. I was diagnosed with broncheactasis in 2013. At that time my sputum culture showed no bacteria and u was sent home with lefloxin and was told that whenever I get infection I have to take leflox. I had no major infection in 2014 but in August 2015, I had a severe attack of broncheactasis. My Spo2 levels decreased to 34% and I was admitted in military hospital. There I had CT scans that showed my both lower lungs lobes are damaged and somehow middle lobes too. Sputum culture again did not show any bacteria. I was sent back to home with ciprofloxin and steroids and was told that come after 1 month for sputum test. After 1 month the sputum culture showed pseudomonas aeroginosa. My breathing again became worsened and spo2 level dropped to 74%. The doc told that the only solution is use of inhalers, 15 hours oxygen therapy and a course of cipro once a month. I was not satisfied as after 2 weeks again I felt that I cant breathe and It has effected my daily tasks. I went for another private doc. He looked at my sputum test and the antibiotics sensitivity and gave me cipro along with the IVs of ampicillin and sulbactam for 8 days along with steroids and cipro. I didn't find any difference so according to his prescription I started a course ceftazidime IV inj along with cipro for 12 days. I felt better for 2 weeks. But again fell ill due to toothache and sore pimples on my face and breathing issues. The private doc asked me for the sputum culture test and that showed no pseudo again. still he asked me to start azithromycin and fotrum. I went to military doc and he told me why are u taking antibiotic now as ur sputum culture test showed no pseudomonas this time so stop it and just nebulise with atem and clenil and keep the mucous out. But its now 4th month im not well and does not knows what will happen further. I'm already fed up as no one guides me properly. Any one who knows other treatment or natural remedies that can help me to be back in normal life. My spo2 levels are quite low I.e under 75% and im on 24 hours oxygen now a days and just stays on the bed as I cant breathe properly I cant walk properly I become breathless. Iam 26 years old and want to live a normal life but all in vain and it seems I wouldn't be normal now. . I'm going into depression. I don't know how to cope up with this disease and to bring back my breaths that I really miss now. I was never on oxygen therapy before but now iam totally reliable on oxygen. Please help me out

[Hidden]

Oh dear Saadi Malik, how awful for you. They really have thrown everything at you haven't they. Well this can happen because very few medics really know about bronchiectasis.

I have had extensive bronchiectasis since 1953 and I am colonised with pseudomonas for which I take cipro, nebulise ceftazidime and very rarely (4 times in my life) I have had IV of other drugs. This is to keep down the levels of pseudo. Once colonised it is rare to get rid of pseudo completely, whatever the tests say. You can live with it.

I have lived a full and active life despite my condition and do not need oxygen. I am concerned that you have not had a complete or accurate diagnosis of your condition because you are so poorly so quickly. Needing 24 hour oxygen makes me wonder if you have some other lung condition, more aggresive than bronchiectasis but misdiagnosed or alongside it.

Are you in the UK? If so, was your diagnosis by CT scan under a consultant who specialises in bronchiectasis? This is the most important thing because until you know which condition/s you have, you cannot get the correct treatment or management plan.

So, demanding a proper diagnosis is the first thing. As I don't know where you are I cannot advise you how to do this. In the UK it would be to demand to be referred to a consultant at a big specialised centre for lung conditions. It should all follow on from there

Now regarding your sputum. Very often these tests come back clear when pseudomonas is actually in there because their level of accuracy is quite low. You did have one come back with pseudomonas so it is highly likely that it is in there. Pseudomonas on its own can make you feel pretty rotten but shouldn't be so bad that you need oxygen, especially if treated with cipro and IV ceftazidime.

Do you have someone who can support you in your dealings with the medics? I'm sorry that I cannot be of more help but I have tried to clear a path through all of the confusion so that you can get the help which you so badly need.

[Billiejean_2]

I agree with everything Still Standing says in her reply to you. I also have very extensive bronchiectasis and have recently had Pseudomonas as well. Whether I still have it or not, I won't know until the next sputum test.

At age 26, it seems unlikely to me that Bronchiectasis would leave you bedridden and on 24-hour oxygen therapy. Don't lose heart, just persist until you get a proper diagnosis. You are still young and with a correct diagnosis and suitable treatment, there's a good chance that your condition might improve. Good Luck !

[Pseudosufferer]

I am so sorry to hear of your situation. For information, I'm a patient at the Royal Brompton hospital, a specialist heart and lung hospital as you probably know. My lungs are colonised with Pseudomonas but it doesn't always show in a sputum test - my doctors tell me that sometimes the sample just fails to catch it. So the fact it hasn't shown up in your sample doesn't necessarily mean it isn't there. It is extremely difficult to get rid of, which is general knowledge.

I had seen various chest specialists - my symptoms were repeated chest infections every six weeks - and none was getting to the bottom of the problem of it and I was just getting worse with constant breathlessness and fatigue (I also have asthma tho it's well controlled mostly) until I was recommended to this hospital. They discovered the pseudomonas which none of my other specialists had and prescribed antibiotics which are effective against it (there are just a few. The ones I take are Augmentin alternating with Ciprofloxaxin. Azithromycin, which you mention, is often prescribed for long term use, 3 times a week. You don't say if that is the regime you were prescribed). It sounds as though none of your specialists has got a handle on your condition and perhaps you need to try yet another hospital. It's not for me to advise you, but that's what I'd do.

You mention natural remedies: If you are in reach of London you might consider asking your GP for a referral to the Royal London Hospital for Integrated Medicine (used to be called the Royal Homeopathic HospitaL). They specialise in hard to treat conditions. I saw a herbalist there who had a number of suggestions and has prescribed a tincture to boost the immune system. They don't prescribe anything that will clash with a patient's existing medication. There are also chest specialists there - all properly qualified doctors btw, all working within other NHS hospitals.

Old fashioned remedies which I've found help and which I use on a daily basis - constant hot drinks, raw ginger in hot water as a drink (and then I eat the ginger. It eases the tightness in my chest immediately), foods containing chillies, a soup made from chicken stock with chopped garlic, ginger and chilli in it - just chop them and heat for a few minutes in a microwave. Inhaling olbas oil over hot water (I have a facial sauna with an attachment for inhaling menthol etc. I plug it and inhale for half an hour while watching TV). None of these is a cure but they have all helped with my breathing and loosening the mucus so I can cough up more easily.

You could also ask if there is a physiotherapist who specialises in chest problems you could be referred to. They can teach you breathing exercises to help shift the mucus. And have you been given a Flutter or Acapella device to use to help with mucus clearance after your nebulising? They are excellent for helping you cough up. I was an in patient at the Brompton recently and I saw that we all had them. I wouldn't be without mine. I still get regular chest infections but I am well between times.

I hope you soon get some help and see an improvement, you're in my thoughts.

[Scouser58]

You are going between two doctors one private and the other military, why are you with the military one?? ,,,have you been tested for emphysema ? and what hospital specialist are you seeing,,,,,could it be that you need to see someone more experience in your condition and have one treatment plan ?,,instead of two?

I read your post and thought about how difficult things have gotten for you,,, and how you miss your good health,,,, take time to consider all the things and then make a choice,,,,ttfn from Karen.