Posted , 76 users are following.
I am here to find patients like me with Bronchiectasis and the complication of chronic Pseudomonas Aeruginosa. I am intersted in knowing what kind of treatments they use to stay healthy. I have had theP.A. for seven years but do not have Cystic Fibrosis.[/b]
8 likes, 277 replies
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Gill200 Guest
Posted
Operalyn, Just had to reply to you. It could have been me writing your story. I too have had bronx since 9 months of age and have just turned 70. I also acquired pseudomonas 10 years ago which made my condition more challenging. Up till then I had worked for 40 years, been on holidays and been active. I also bring up a lot of rubbish and spend quite a bit of time getting it up but it has to be done One thing I am plagued with is oral thrush. This started after getting PA and given certain inhalers and Azithromicin 3 times a week. I've tried cutting out sugar almost totally but just lost weight and it didn't work. I also swill my mouth out after meals. I think I've tried everything. I am now needing to dab medication on it regularly. Regards, Gill
Operalyn Gill200
Posted
Hello Twin! Sadly I have loads of oral thrush too. Much worse now I am older. I don't have azythromycin because it upsets my stomach so much but just the steroid puffer and the courses of antibiotics I take for infection is enough. I now keep a supply of fluconazole in to take when it's really bad. The docs were reluctant to do this but had run out of ideas. It's miserable isn't it? Take care of yourself x
Gill200 Guest
Posted
I use Daktarin gel. As soon as there is the slightest sign, I use the gel for a few days and its soon gone. I prefer to do that rather than have a course of tablets which don't last. I've just started to brush my teeth after food to see if that has any effect.
irene87455 Guest
Posted
Having bronchiectasis is miserable enough, but pseudomonas is a whole new ballgame. When i was told four years ago that I had it and it was colonised, it scared the heck out of me. I too cut out sugar completely, lost a stone in two weeks & thought I was dying. I still maintain a sugar-free diet, no processed food, take a ton of supplements and try to keep my immune system tip top. I think the main thing that's helped me is making sure my lungs get a good clear-out every morning. I certainly don't cough nearly as much as I used to. It helps that I've retired now so have more time to do it, and nebulising a saline solution makes it easier.
I do occasionally need a course of antibiotics, but co-amoxiclav seems to work for now (ciprofloxacin is just too scary!).
I regularly take a probiotic, and it's especially important after a course of antibiotics which will have wiped out all the good bacteria (hence thrush). I understand kefir milk is a very good source and it's now sold in Tesco & Sainsburys. Also sauerkraut is another good source.
I'm pleased to have found this thread, a good place to exchange tips and experiences.
flicity94519 irene87455
Posted
good luck
Operalyn Guest
Posted
Oddly I don't have too many side effects with Cipro. Other antibiotics cause me no end of trouble. And it does work.
Gill200 Guest
Posted
I don't have any side effects either with Cipro, and understand it's the only antibiotic that touches PA. Re aural thrush, my latest experiment to try and control it is to put my toothbrush in a sterilising solution every morning, and as I said previously, brushing the teeth (and tongue gently) after lunch as well as morning and night and, if I can be bothered, rinsing my mouth with a salt solution. I have tried so many methods its almost an obsession.
irene87455 Guest
Posted
Pseudomonas hadn't been present in a few recent sputum samples although my consultant pointed out that it doesn't mean it's not there, it's just not causing problems. That's why he agreed to prescribe co-amoxiclav when I had a recent chest infection. I started feeling better after a couple of days of starting the course so I'm happy to steal clear of cipro for now.
As well as eating healthily I also take oil of oregano (a natural antibiotic) and allicin (garlic) capsules. Lots of vitamin C, Vit D3 with K2. When I go out I put a dab of thieves oil at the base of each nostril.
When I nebulise the saline solution I sometimes add a few drops of pure garlic liquid. All this seems to help although my consultant tut tuts because 'it hasn't been researched' but he agrees I'm doing well.
gb78926 Guest
Posted
Hey all:
?I am 69, diagnosed five years ago after suffering with monthly bouts for over 15 years and under the care of an allergist.
?My bronchiectasis is difuse at this point virtually in all parts of both lungs, the worst in the right lung. Five years ago I was put on Tobramycin. First year ten days on every month. Then every other month for 10 days, the past three years down to once a day for seven days every other month.
?Since the first month I have not had an attack, and only had two colds, one severe, but did not use any antibiotics only Pulmacourt inhaler, which our insurance does not cover so we buy it. The other cold not much at all. I just had two weeks ago a chest X-ray and CT, the doctor finds it hard to believe but the area of concern has decreased to the point where a radiologist sees nothing. The disease is still there, but thru the use of the Tobi and daily exercise I am controlling it to the point where my life is completely what one would call normal.
Best of luck
?Feel free to contact me with any questions, I am NOT a doctor, but have learned much more about this than I ever wanted to know.
carole74618 gb78926
Posted
I'll have to show this to my dr when I go 3rd Jan. It is interesting. Wot exercise do you do. My PA gets quite bad & I can't breathe. Very scary.
gb78926 carole74618
Posted
Best of luck
carole74618 gb78926
Posted
Where do you live. I'm in the UK. This med Tob cost over £1000 & they won't prescribe it.
gb78926 carole74618
Posted
Carole, no I live in the states. The cost of Tobramycin (The Generic) in the states is $65.95 per vile. We pay $20.16 per with our Medicare co-pay. I'd bet they are pricing out a full box, which is 58 viles, as packaged and designed for Cystic Fibrosis at two per day for 28 days. You might try to find another doctor. Mine is prescribed in a "month's supply for me, which is seven viles, it comes as four per pack. The last delivery has an expiration of 3/19, so, base on that I will have seven for a full treatment in 14 months. Tobi, the non generic is much more expensive. The drug is designed for and used for Cystic Fibrosis, but my specialist has experimented with it for sometime and he knows it works as I do. My oxygen level is 98% and my lung function is at 97.9%, actually above a "normal" person my age. In five years improvements have been significant in both readings and I've had no lung infections, where as prior to the treatments I had one a month and four major per year, requiring 20 days of antibiotics.
?Not sure how the medical system works in the UK, but understand it can be extremely "punitive" for a lack of a better word. You might try another doctor if that is possible. I had actually been misdiagnosed for over 15 years by a group who were considered "the best". Then by chance a gastro doctor heard my breathing at a party, went to his car, pulled out the stethoscope and listened, called the lung specialist friend and I was in the next day and the rest is history.
Best of luck
Bud
carole74618 gb78926
Posted
Just to let you know, I went to the hospital yesterday about my condition & the dr said at this point they don't want to give me Tobramicin. If it gets worse they will give it to me. I'm fortunate, living in UK it wont cost me a penny.
gb78926 carole74618
Posted
Free is great, but only if you can get it. I would just as soon pay for it and have it as not have it and get it for free. The point of my treatment is to use it on a regular basis to stop any serious infections from getting a hold. It does not cure anything, but has and does prevent infections.
Good luck