Dear colleagues of this wonderful forum would anyone be able to help with the following?
What are the symptons of having the pseudomonas bug in your airways if it doesn't show up in sputum samples ? Could it still be there anyway and hard to detect ?
I am getting repeated infections & my Dr suspects it may be there and suggests treatment with Tobi inhaled medicine . I am scared and reluctant to try it without a definite diagnosis but not sure what the alternative would be either. I have had I. V treatment but within six weeks I had another infection. I know an infection is brewing when I begin to feel unwell & weak but don't run a high temperature or loose my appetite. I would really appreciate the opinions of others on or has anyone had a similar experience
Yours Sincerely
JK 1957
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Jk1957
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I have had 2 pseudomonas exacerbations, both confirmed by sputum samples. But I was recently admitted to hospital with all the same symptoms and also needed oxygen as well as IV anti biotics. Three sputum samples didn't grow any bugs, but the doctors still insisted it was Pseudomonas, and Pneumonia too.
I always get a high temperature, anything between 38c and 42c. I can't focus, and lose my concentration. My brain seems to stop working, and I also have breathing difficulties. They put me on Tazocin as usual, but after 2 days it was apparently not working so swapped it for Meropenem. I was also put on oxygen for 10 days, which had never happened before. I was in hospital for 15 days in the end.
The first time I had pseudomonas, after the 14 days on IVs, I went home and had to nebulise Colymicin for 12 weeks. I should try the Tobi, the doctor wouldn't suggest it if it wasn't worth it. It might do a lot of good.
Thank you so much for reply. It is great to hear of other ways of identifying pseudomonas if it doesn't show up in sputum and this is the reason I feel I may still not have it.
I agree with Poems re giving the Tobi a try in view of having so many infections and your consultant suspecting pseudo may be present.
Unfortunately I cannot take prophelactic Azith and am intolerant to many abs. Even with vigilant nebulising and physio I usually manage about a week following the end of infection before it all kicks off again. In the main it's HI, although I do get strep p and morax and always get a high temp. It is thought I am colonised with HI and this is the reason I have been prescribed nebulised Tobramycin 80mgs twice a day 28 days on and 28 days off.
Worth a try. After all as it is going directly into your lungs, it is not so systemic and easier on the GI system.
I have had pseudomonas for a few years now ,they zap it with Tazasine IV every 6 months , but it grows again . The symptoms I have found is you get very dizzy and feel you are going to pass out . My face gets really hot and flushed . Hope this is helpful .
Omg you have just described my symptoms . Dizziness and fainting has lead me to the cardiologist who diagnosed arrythmia bigeminy. No doctor has said there is a connection between that and the bronchiectasis and bug. But it seems likely doesn't it? Best wishes to you. Ricky Jean
Hi I was first diagnosed with pseudomonas in October 2013 after 4 days of blood in my sputum, even though I felt perfectly well at the time. It cleared up with my emergency antibiotics (Augmentin) which I always had to hand because of lifelong bronchiectasis. I was told the pseudo had colonised and the treatment was cyprofloxacin but that it very rarely cleared completely. A week later I went to Dubai for a few months -lucky me- and a respiratory consultant there put me on a course of levofloxacin. That was February 2014.
In the meantime I googled like crazy and I found that it feeds on sugar so I changed my diet completely. I lost a stone in a month and felt terrible. I also started taking oil of oregano, vitamin c, omega 3, lactoferrin (which is supposed to penetrate the biofilm), and ate a very healthy diet with lots of green veggies.
Last winter I added garlic capsules (AllicinMax) to my list, and also started nebulising pure garlic liquid. I try to keep my lungs clear as much as possible, and I'm pleased to say that I haven't had a chest infection since feb 2014 which is virtually unheard of for me.
If I've felt a cold coming on I do a sinus rinse with saline water to which I add a few drops of Johnsons baby shampoo (supposed to get rid of pseudo).
Forgot to add that I also occasionally take a course of probiotics (Raw Greens is my favourite). It's extremely important for anyone on antibiotics to take probiotics to put back the good bacteria, otherwise you are vulnerable to more infections.
I'm sure the pseudomonas is still there waiting to strike, but I'll do as much as I can to manage it.
BTW my weight has stabilised, but I still don't eat puddings, cakes, sweets, pies etc, and sometimes it's tough but better than the alternative.
Thank you so much for your most helpful information and I will try your advice and hints . I really appreciate the time you took to give me all this information
Thank you for this Moody Girl, great advice and I'll definitely check it out. Like you, I'll do pretty much anything to keep these wretched pseudos at bay 😊
Well I'm still fighting on and so far managing to keep the pseudomonas under control. I know it's still there but because it doesn't cause problems my consultant has prescribed co-amoxiclav which seems to do the trick when I get a chest infection.
Fortunately I don't get too many exacerbations these days. I make sure I clear as much yuck from my lungs that I can each morning and throughout the day if necessary (and possible). I wish I'd done this years ago but when I was working there was never enough time. I realise now that I should have made time.
I've just read my original post and see that I said I nebulise garlic liquid. What I should have said was that I nebulise a saline solution which helps clear my lungs, and sometimes add a few drops of garlic liquid.
My preferred probiotic these days is kefir which available in major supermarkets.
Oh, exercising the lungs is important, and avoiding people with coughs and colds if possible.
Thank you for replying. I too am realising how important it is to use nebuliser regularly and exercise for lungs and body. As you say it's easier to do these things with more time available. You sound as if you have been keeping reasonably well which is good. I wish you a Merry Christmas. X
Jk1957 I had loads of pseudomonas infections. They bring me down with a high temperature. Usually the sputum gets dark and P. is seen in the sputum test.
But my consultant told me that it becomes dormant aand can be reactivated through a cold. What your consultant wants to prescribe is quite powerful. Take it. You could suggest is Azithromycin is a good option when Tobramycin is finished. You will have to have blood tests for Tobi because he will want to monitor your kidneys.
It will help you. Hopefully it will be eradicated. But once you have it, you are vulnerable because of your ( and mine for that matter) weak lungs.
Ask your consultant to refer you to a pulmonary nurse who can monitor you closely. She is a wonderful woman, usually down to earth, very knowledgeable about this type of condition and available on the phone (while consultant may not be). Be courageous. Hope ou feel better soon. Mic
Thank you so much for all that information . I really appreciate the time you took and the it really helps to hear how other people on the form know when they have the pseudomonas bug . I really don't think I have it at the moment .
I had nebulised colomycin for 5 weeks along with 2 weeks of IV abs and then 3 weeks of ciproflaxin to zap pseudomonas. the nebuliser felt soothing, so go for it! I hope all goes well for you. xx
I have cvid, a Primary Immune Deficiency and bronchiectasis. I get pseudomonas. Because of my primary immune deficiency I don't get a temperature until I'm nearly on deaths door. My normal temperature is 36.3.
for the last year and half I was getting sick at least one a month. It would always settle in my upper chest with frequent coughing and bringing up thick green phlegm. My family doc kept saying I had bronchitis and prescribed antibiotics with little help.
chest xrays and ct showed normal. I finally saw a pulmonologist and he did a bronchoscopy . He saw many pods of phlegm in both lungs and took sample and came back as pseudomonas. The only non-invasive test is having a sputum test which can be mishandled sometimes and not pick up the bacteria.
My feeling is that if you cough up any greenish thick phlegm with your symptoms that you should ask your specialist what he thinks of doing a bronchoscopy.
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