British Lung Foundation

Pseudomonas bug

Hi,

I was diagnosed with Bronchiectasis 5 months ago, although my consultant thinks I’ve had it longer.

I’ve just been on 6 weeks eradication treatment of cipro for Pseudomonas infection.

A recent test shows it didn’t work.

I’ve been to see my consultant today and he is referring me for twice daily nebulisers to do at home. I’m almost sure he said this will be forever.

Can anyone tell me, is this right?

Will I always have to use nebulisers?

Is my Bronchiectasis getting worse?

Do most of you work? I can’t offord not too 😞 so I’m worried if my condition stops me.

What can I do other than mucus clearance to aid me?

Does anyone take turmeric? Does it work? What dose ?

Thanks for your help xx

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Am sorry Dawn to hear all this. I’m sure more knowledgeable people than me will reply with more help..

I can say that in my case I certainly, on reflection , had Bronchiectasis definitely for over 2 years before diagnosis , maybe longer.

Yes I take turmeric which has added piperine which makes it more effective. Get from healthspan.

Also take a lot of vit D as well as all sorts of supplements.

And on advice of consultant take sterimar nasal spray ( just salt water) afew times a day as he said a lot of bugs can start in nasal passages/ sinuses.

Also on his advice am fanatical about hand sprays when go out.

Who knows if any of these help but think doing everything possible has to be worth a go!!

Cant say if nebulisers are for good but imagine it depends on your symptoms and how much mucus you have... an individual thing.

Hope you get other replies with other help/ tips.

Good luck Dawn! Xx

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Ps also take a stronger than I may need , asthma daily steroid preventor to help keep my airways open to aid mucus to come out

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Hi Dawn

So sorry to hear this, although I have bronchiectasis and asthma I am not well informed on pseudomonas but there are people on the site who can help you. I’ve had bronchiectasis for most of my life but it got worse when older. Clearance techniques and keeping exercising has helped me, and of course the Azithromycin I take as a prophylactic and Carbocisteine to help thin out the mucous, making it easier to clear. My partner has just bought some turmeric tablets as they seem to be in the news a lot these days. I haven’t tried them yet but have been having turmeric, black pepper and cinnamon in my porridge in the hope it helps with inflammation - yummy! I was concerned they might interact with my other medicines, particularly the Simvastatin so will probably ask my GP. I’m 65 and fortunately was able to retire at 62.

I’m sure you will get lots more replies and it’s good to be proactive. Take care and hope you get some answers soon.

Sandy xx

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tobramyacin is also a first line drug for pseudo✌️

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I was in the same boat but worked until I was 60, admittedly 25hrs a week but I’d had bronch nearly 20 years by then. They usually try IV antibiotics to eradicate it, not just oral cipro, have you not had those? But to be honest pseudo is almost impossible to get rid of once it takes up residence. I expect your consultant means you to nebulise twice-daily antibiotics, usually colistin (also called colomycin) which is usually very effective at suppressing the pseudo. I’ve been doing that at least ten yrs now. You’ll probably always have to do that but it doesn’t mean the bronch is spreading, it’s just that pseudo isn’t good for our lungs. Left uncontrolled it’ll cause havoc, so must be suppressed. You can limit the spread of bronch with daily physio. I hope he’s referred you to a chest physiotherapist to be shown the right technique as this is the best way of clearing your airways and keeping bugs at bay.

Ps I’m seeing a nutritionist soon for some expert advice on supplements eg turmeric. If I learn anything useful I’ll post about it.

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Hello i have been using a nebuliser twice a day for about 20 years. I was given it for asthma. I use sabutamol in the nebuliser. I have hAd sailine nebs and budisonide nebs.

Useing the nebuliser helps to keepy airway open. It is unusual these days to be treated in the home with nebuliser.

As to is it perminent i am not sure but very difficult to get off it

Hope you can sort it out

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Thank you hopetorun. It’s all about learning , i hope you stay well x

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I use turmeric Dawnsunny. Like Sandy, I have turmeric (organic) in my porridge, 5 grams, together with black pepper and coconut oil to help with absorption, as turmeric is fat soluble. (I also take cinnamon, ginger and 4 chopped cloves which are highly antiseptic - all organic).

On Trust Me Im a Doctor, they did a experiment with 100 people divided into three groups, taking turmeric three different ways - in capsules, with food and placebo - to see if it would affect precancerous genes. The only group which saw a difference was the one who taking it with food, possibly the doctors said because the fat used in the cooking process or in e.g. yoghurt which some of them mixed it with was helping with absorption.

This fits with an Asian friend telling me previously that turmeric has to be cooked to be effective.

Has it worked for me? I can't say for sure but anecdotally, I had very severe pneumonia three years ago and started the turmeric shortly after that had cleared up, together with vitamin D3, and Vitamin K2 which you need if you take D. Since then Ive stayed well with very few infections, the main one being this December when I had mild pneumonia, which stayed mild and cleared up with a fortnight's ABs (a fortnight being the basic protocol for taking ABs when you have bronchiectasis) and prednisolone which has taken a while to taper. I can't imagine previously having had pneumonia and it not having gone stratospheric but this was easily manageable.

On my experience I can only recommend it - I don't think there can be anything to lose by trying it.

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Here's the BBC link describing the Trust Me experiment.

bbc.co.uk/news/magazine-374...

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Thank you for your reply 02trees.

I watched a lady on good morning who’s cancer was stopped by using turmeric but in capsule form.

I need to get more details ... didn’t know how to put the link up for you, but if you google this morning and turmeric it will come up.

Can’t say the other ways of taking it sound tasty lol.

I take Vit D but haven’t heard about K2?

I do worry about all the infections I could get 😞 I m hoping a don’t get pneumonia.... x

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Vitamin D3 makes calcium available to the body and Vitamin K2 Mark 7 is required to direct this to the bones rather than floating freely round the body where it can cause problems by calcifying, e.g. kidney stones. Ive read this on several sites I trust but don't right now have a link.

It's not that I don't think capsules work - just that since reading of the Trust Me experiment and the advice of Asian people I know, I feel Im playing safe by cooking with it. If capsules are taken with food, especially food with fat in it, then that probably works the same way.

I'll check out the This Morning link, thanks for that DS :)

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What if you are using tumeric to strengthen your immune system. Have never heard that capsules don't wrk?? What do u mean when u sayAB's.....great info...do u have a web site to variety about Vit K... or web sites to variety Tumeric. I'm also involved in Mayo Clinic, and National Jewish in the states...any web sites would be helpful✌️

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I read that turmeric works in many different ways Megan so I take it with them all in mind. It's also meant to help counter development of alzheimers. Who knows? All I know is that Ive been amazingly well since starting taking it but I also think that may be to do with Vitamin D as well.

Im not at all saying that capsules don't work. Many report that they do and capsules are clearly the most convenient way to take it. Im merely relating things Ive heard, like the Trust Me experiment I talk about, where taking turmeric with food worked best. So I guess taking the capsules with food would work fine, preferably food which has fat in it since turmeric is best absorbed with fat. Since Asian people - one friend and a nurse when I was hospitalised - have said that cooking it works best, that's what I choose to do.

Oh, and ABs are antibiotics - easy for us old timers here to forget that not everyone knows all the abbreviations :)

I also find the Mayo Clinic site very helpful, and the National Jewish is one of the main specialist hospitals for copd.

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Hi again Megan. This link gives a good summary of the relationship of Vit D3 to Vit K. Bear in mind that it may be a commercial site which sells vitamins but Ive read this same information on many different non-commercial sites. It just seems to me to be a very clear explanation.

healthline.com/nutrition/vi...

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Could put a tsp of coconut oil in that porridge recipe you do it's good for stomach lining & thyroid too. The thing with prevention is, that you cannot prove that something works, but there is the fact that it simply doesn't happen😊

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Yes, I did mention about including coconut oil in my reply above Lily. It's necessary for maximum absorption and tastes good too. You're right about prevention, I think you can only look at it on a balance of probabilities. Having just had mild pneumonia I was still able to be up and working around the house every day and didn't feel terribly ill. And having spent my adult life since my 20s with an annual serious chest or upper respiratory infection lasting many weeks, even months, i can only conclude from my wellness the last three years that something is working.

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Sorry I overlooked that & I'll go back & re-read it. I would think that your wellness has everything to do with your being so proactive. Well done you, especially as we get very little, to no encouragement from orthodox medics although now it's beginning to change & herbalism & nutrition are starting at last, to get the attention that they deserve. Let's face it, the royal family have always used homeopathy & it's ridiculous that so many healing methods have been denied & even ridiculed in favour of pharmaceuticals. Medicine should be about all the various methods of healing that have had successful recovery. The various sciences of healing have always existed, whether 'scientists' have managed to work out how to decipher them yet or not, is another matter. Taking some responsibility to learn how to improve our own health & sharing successful methods when we can, helps everyone. Thank you for yours & everyone else's interesting contributions😊

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Thanks for the info. your right that National Jewish is top respiratory hospital in North America, that's why I questioned your info. But I thank you for being so informative. The more info we have the better it is, so long as it's correct info💞

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I also have Bronchiectasis, and have grown the Pseudamonas bug in the past. I was prescribed Colomycin nebs for about 8 months, after which I now nebulise with Ventolin and then Saline twice daily. I have now been nebulising twice daily for 3 years, but have regular infections, each time the hospital want sputum samples to ensure that I am on the correct antibiotics. I still work, part-time, but I work from home so that, if I need one, I can take a break when necessary.

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Thank you Mgharris01. Why did you stop Colomycin?

Why do you nebulise with ventolin and saline?

I’m hoping I can carry on working for a while yet, just worried about infections and how poorly I will be.

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I was told to stop the Colomycin by my respiratory consultant.

I keep nebulising with the Ventolin and saline to help with chest clearance but have still had 28 chest infections in the last 3 years, although none have grown the pseudamonas bug.

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Just to add to the above, I also have Bronchiectasis and have colonised pseudomonas. I take Azithromycin 3x a week which helps to dampen it down. At my last flare-up the Cipro (which I kept as my emergency pack) didn't seem to help so I was put on IV Tazocin which did the trick. I still have the Cipro but haven't needed it since. The most important thing is clearing the mucus otherwise the pseudomonas will take over. I am now retired (I was diagnosed after retirement, having previously been told I had asthma and then COPD - very different). The average GP doesn't seem to know very much about Bronchiectasis unfortunately so you need a good consultant. Last time I saw mine he took me off Seretide (he said the steroid in it wasn't helping re the pseudomonas) and also Spiriva. My inhaler is now Duaklir only.

Hope all this helps. They're a very helpful bunch on this website!

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Thank you for your reply Claudine.

How poorly are you when you have a flare up?

Mine has said he will change my seretide to something new but not sure what.

You have all been so kind x

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Washed out completely is probably the best way to describe it! Not functioning properly, breathless and useless! I forgot to mention that I have never had a nebuliser or needed one. I remember a physio coming to visit me in hospital to see my method for coughing stuff up and he said "There's nothing new I can teach you. You've found what works for you!. It's certainly a learning process. Good luck.

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Hi Claudine, I was really ill over a year ago, Before I was diagnosed i can def remember feeling the illest I have ever felt. I was out of it, def not functioning, I was in bed and just slept for about 4 days. I was breathless, coughing and brought up some blood. I was given antibiotics and sent for a chest X-ray.

I believe I had Bronchiectasis then and now I’m wondering if this was a flare up??

Got it was awful.... I hope I never feel like that again x

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I have also grow Pseudomonas, with several stays of 14 days in hospital on IV ABs. Last time it was 16 days as I had Pneumonia at the smae time. The first time I was sent home woth Cipro and Colymicin to nebulise for 3 months. Cipro gave me Tendonitis, so can never take that again. Oddly, I haven't had a colonisation for 2 years. In fact no exacerbation at all. Best wishes. xx

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Thank you for your reply Poemsgalore. That’s great news for you I do hope it continues x

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Hello, I also have bronchiectasis and asthma and colonised with pseudomonas. My first treatment was ciprofloxacin but it still showed in sputum samples. I spent 14 days in hopital on IV antibiotics to try and iradicate it. The treatment I now have is nebulising Colomycin twice daily. The treatment is for life but is keeping pseudomonas suppressed. I also do physiotherapy to try and keep my lungs clear. Hope this has helped. Majt

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Thank you for your reply Majt.

I feel well even tho Pseudomonas is showing. Is this normal?

When you had to go into hospital were you poorly?

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Hello Dawnsunny, I just had weeks of chest infections that couldn't be cleared. It affected my breathing and my sats dropped low. I had nasty mucus. But I have been nebublising Colomycin since May now and up till present I have been ok with pseudo not showing. 😊 X

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Hi Hanne62,

Yes I had 6 weeks of cipro to try and eradicate it but was still there after I finished. This is the second thing he’s said he’s trying.

I think the ab he said was Colomycin.

I don’t understand if it’s not making me ill why are we doing the nebs?

When it causes havoc, what shall I expect to feel?

I have a flutter from my physio to help with the mucus, however at the mo I don’t have loads to bring up, Thank the Lord!

Please do post about turmeric. Where to buy it and the dose. That would be very helpful.

Wish you well x

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Thank you for your reply Sandy. I’m taking carbocisteine 375 mg 2 tabs three x a day and I use a flutter device. I also go to the gym twice a week and walk most days, although the weather hasn’t helped with this of late, I’ve lost 3 stone 3lb, I’m trying soooo hard to help myself, I don’t want to be ill 😞.

Stay well x

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Be kind to yourself Dawn, I certainly don’t go walking in the cold or when it’s raining. I sympathise with your weight loss as I lose weight when I have an infection, and struggle to put it back on. I can see you are doing all you can to keep well.

Take care xx

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The nebulizer is probably for the drug tobramyacin. U will probably be on that for a month. This is a first line drug to be inhaled, if ciprofloxacin doesn't work. I'm going thru the same thing with psedomonas, Bronchiectasis and Mac..... I also take Tumeric and garlic pills to strengthen immune system.... extra strength....you will be ok....just make sure you are seeing a specialist I'd pulmonary dr, not a GP.......💖

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Hi Dawnsunny,

Your situation sounds very much like mine. I had a terrible chest infection 2 yrs ago. Saw three doctors and took three different ABs. I was still not breathing well, so it was determined that I had asthma at age 67...highly unusual. After a CAT scan for an abdominal issue one year ago, I was diagnosed with Bronchiectasis. I had a bronchioscope (sp?) and lavage, which showed pseudomonas.

I'm in the U.S. and didn't receive heavy doses of AB in an attempt to eradicate the pseudo...unfortunate for me. I've been on and off Levaquine for the past year, approx every 3 months. I'll feel good for a time, but coughing and increased mucus production build up over the 3 month period. I have a nebulizer with ventolin and saline that I use once daily in the a.m. and a ventolin inhaler that I use in the evening for mucus clearance. I've been to a physiotherapist to learn how to clear my lungs, and that was very useful. Like you, I am looking for homeopathic help. I take tumeric in capsule form, but after reading the info here, I think I will open it up and put on food. I've started taking organic, unrefined virgin coconut oil twice daily. I have not seen results from either, but will keep plugging along. I also take 2,000 - 3000 units of Vit D.

Good luck to you on your journey. Thank goodness we have this web site. It is so helpful in bringing us all together to assist one another.

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Hi 👋🏽 Dawnsunny, your situation sounds almost identical to mine. Bronchiectasis was undiagnosed for over 7+ years which caused a lot of scaring on my lungs. I was then referred to a Lung specialists hospital in Cambridge who are brilliant. However it's taken a long while for my treatment to be effective. After many courses and years of IV's, and Ciprofloxacin, to get pseudomonas under control (Dr's view is that it can't be completely removed/cured) I feel very well. I nebulise twice a day with coloymicin, do phyio twice a day or more depending on amount of mucus. What I have been doing which I feel has benefited me is keep to my exercise at least 5 times a week ( treadmill and walking). I'v completely changed my diet, more fruit and veg. Also like others above, I drink daily fresh ginger and garlic with cinnamon sticks ( my family are from the Carribean). I found that cider vinegar has helped. And I take vitamin supplements daily. You have got to learn how your body/lungs are from day to day. I'm understanding my lungs and body more and more. rest when you can, do extra physio when needed and just enjoy life, don't allow stress to build up. I know it's easier said than done but it critical for us...... I'm 46 and have been dealing with this for nearly 20 years. It's only recently I joined this forum and it has been such a blessing. People are here to support you on this journey so you can enjoy not endure your life. Keep hopeful, eat and drink well and keep active whatever that may be. God bless you... 😁

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Thank you MizzDiane.

Very wise words.... bless you too xx

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Hi Dawnsunny

I have broncihectasis had it since I was about 3 I was taught to do mucus clearance as a child this is the most important thing to do.....I had pseudomonas 2008 to 2012 I also did colomycin neb twice a day...my tip to you is clear as much mucus from your chest as possible then do your nebuliuser therefore the treatment can get right to the bug.....I have been clear of it since 2012 I now take athyromicin 1 tab 3 times a week and it seems to be working...I still do mucus clearance every day this is so important!!!, don't give the bugs anywhere to live!

Hope this helps....keep positive, keep strong, you are not alone

Love Kaylife xx

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By the way Dawnsunny I am now 66 years old, don't give up.

Kaylife x

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Thanks Kaylife, a very inspiring post!

How do you do your mucus clearance?

I have a flutter but sometimes I can’t get anything up and other times I manage minimum amounts. 😩

Take care x

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Hi Dawnsunny

I don't use a flutter but I take carbocisteine caps to loosen the mucus, one of the most important things is to learn to control your breathing by doing breathing exercises to expand the lungs.

To get rid of the mucus I lay over pillows doing one side at a time....ask your consultant were the damage is in your lungs then you can concentrate on clearing that area.....Hope this is helpful......I know this all seems daunting to you and I have had a lot of experience but just take it one day at a time.......Take care.

Kay xx

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