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]
Hi, I have same problem but a lot better after 3 years of misery, contact me at-if you like. Allan
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Hi
I have also had PA together with Bronchiectasis. The doctors managed to clear the PA by giving me a six week course of antibiotic by tablet as well as twice day inhaling antibiotic through a nebuliser. This treatment cleared the PA. This has been verified in two sputum tests. I am sure that I had had PA for at least a year beforehand. I know it is common in people with our condition as well as those with a low CD4 count such as mine.
Hope this helps
Brian
Hi
I have Bronchiectasis, I was diagnosed six years ago, but recently presented with pseudomonas for the first time. I've just come out of hospital after 14 days of intravenous anti biotics and am currently going through eradication treatment of three months Colomycyn inhalation twice a day, and ciprofloxacin twice a day, also for three months. Your comments have made by very hopeful Brian, thank you.
It appears that that longer you have Bronchiectasis, the greater the likelihood there is of you developing a PA colonisation. Having suffered from this dreadful disease for 50 years, I am now seriously debilitated with a very low FEV. I was given azithromycin 3 years ago and for a while things seemed to be settling down but then suddenly I became acutely ill and I was found to have a serious PA infection/colonisation which is not responding to treatment. I can't help but think that the azithromycin didn't help things.
Yes. I have had this dreadfull disease for 4 years now, I too can not admit I have something this horrible. I have a great lung specialist that I have been seeing for 3 years now. He sent me to National Jewish Hospital and also the Cleveland Clinic. Both of these places are wonderful and you are around others with this same disease. I also have Tracheobronchomalacia.
Pseudomonas Aeruginosa has colonized in my lungs and unfortunately, this will probably be there for the rest of my life as this bacteria is very, very hard to get rid of. I constantly have flare ups, during these times, I am prescribed Biaxin and Levaquin - these two together can change the beat of the heart, so I take them consecutively, not concurrently. The Cleveland Clinic changed my diagoise to severe bronchiectasis and they prescribed "the Vest". This piece of equipment is very expensive and insurance will pay some of it if they write you a prescription for it. This is what CF patients use and it is a vest you put on - this has shown to actually improve my condition just a bit. I have been able to keep myself out of the hospital, which is a godsend. Also, I have a very runny nose, which seems to make my cough worse. My doctor has prescribed Tussionex cough medication. This is a very strong med and it can make you drowsy, do not drive, however, it seems to calm my cough some where I do not cough as often and it has been a godsend.
My routine consists of the folling:
Acetylcysteine 3mil in nebulizer 3 times per day
Acapella Flutter 2 times per day - there is a special routine that you do with this device and it is amazing how much mucus you can get out.
The Vest 2 times per day (which is used along with the nebulizer)
BiPAP machine - at night, which I cannot stand to use. As you know we sleep little as it is.
There are some clinical trials named IgY that is going on. This is an anti-pseudomonas Igy gargle. It is prepared from eggs of hens that have been vaccinated with Pseudomonas Aeruginosa. Somehow this drug is prepared with a water dilution and then it is gargled. You can look it up on the web. But it seems to that this is showing some benefit to CF patients.
I live in Scotland where we have the National Health Service. It has served me well over the years but lately I feel that I have gone as far as I can go in terms of helping my condition. I have had many courses of major antibiotics and have got to the stage where I feel enough is enough. I was told today by my specialist that I am likely to have PA for the rest of my life.
One little recommendation I would like to share with you, if I cannot sleep during the night due to coughing and retching, I take a couple of whiskies..not enough to make me drunk but enough to suppress the cough reflex and I get sleep. I am not suggesting that everyone should get up during the night and party but as we all know, when we lay down, the coughing begins and it is hell. As a Scot, I of course recommend Scotch but I reckon any suitable spirit would do the same.
I have Pseudomonas Aeruginosa in my sinuses. I have recently had sinus surgery and a wash out, unfortunately I still have the PA I can smell it when I breath in. Tried Ciprofloxacin but got severe joint pains can anyone help.
Firstly, I was warned when put on Ciprofloxacin that it might give me tendonitis - it did. So I stopped using it
immediately.
I was diagnosed with breast cancer late 2012, for which I had surgery. Whilst I was under the anaesthetic,
they drained my lungs. I haven't had any problems since then. Although my specialist put me on
Azithromycin, one three times a week. She started me on this as I also had chemotherapy.
I too have the sinus problem which manifests itself as a foul smell akin to sewage. For ages I kept looking for the source of the odour until I looked it up on the web and lo and behold, it's PA. Yet another indignity.
I was also warned about the possibility of tendonitis but have had no major adverse reactions. However, the Cipro has never made any difference so it was dropped. I was on Azithromycin for years but again, it made no
difference. I asked my GP and my specialist to review my medication and the Azithromycin was dropped. There's no point in taking powerful drugs if they have no theraputic value. My specialist told me that there are some new
drugs coming on to the market for PA in CF patients but it is unlikely they'll be available to people with bronchiectasis.
Does anyone know whether or not having your lungs drained would remove the Pseudomonas? I had mine drained whilst having surgery for another condition, and my lungs have been so much better.
I used to have my lungs washed out every year and it really did help but current opinion suggests that too many bronchoscopies are undesirable and dangerous. In the case of patients with PA infections, washouts should be avoided lest the infection is spread to other parts of the body. You could ask your doctor about autogenic breathing techniques which can be helpful in clearing lung bases. Postural drainage/physiotherapy is helpful too if you are fit enough to cope with it.
Thank you supercough. I don't think I had a wash out or a bronchoscopy. I was under the anaesthetic for surgery, and they drained my lungs then. Or is that the same thing?
Yes, they would probably have used a scope to wash out the bases of your lungs because that's the only way they could do it.
Hi Brian, hope you receive this as it was a while ago you posted. Very interested on what dosage and drugs/nebulisers you used to clear the PA. Are you still PA free??
I also have pseudomonas in my sinuses and sometimes the smells could be dreadful. A friend advised to try a neti-pot (look it up) and every day I wash out my sinues. It is amazing the difference it makes, the smells are seldom there and my nose doesn't run constantly as it used to. I also am free from the dreaded post nasal drip that you get during the night and makes you cough. Cipro gave me dreadful joint and muscle pain and also gave my ulcerative colitis an excuse to erupt and cause no end of problems.
I have been offered I/V antibiotics but I have declined because the nearest hospital is quite a distance away and I would seldom see friends and family. Of course if things become accute I might have to rethink but for now, I'll take my chances.
I have had lung washouts many times and I have always felt the better of it for a while at least. Sorry about the breast cancer, the last thing you need on top of that is pseudomonas.
Hello, I have P.A. For 7 years now and I'm desperately looking for a way to get rid of them. Untill now I use lots of supplements to activate the immunity system, vitamin C in high dose and probiotics, very important for the guts.. I'm on antibiotics every day since 3 years now and in hospital once or twice a year.... I would advise the supplements but not without your doctor telling you what to take.. Exercises are very very important as well and of course a good fysiotherapist who helps you to clear the lungs.... Good luck!
What supplements do you take Christiann ? besides the Vit C & probiotic?
Hello Ohara, I take vitamin K2, Sinergia for immune system,MSM, calcium and vitamin D3 on this moment. But it all depends on results of analises they do and it's very individuel.in june new analises will be made and supplements will be adapted...Ihave this done by a hematologist who is specialized in cell regeneration as the conventional doctors don't even think of helping the body to stay in balance and be strong. Maybe you need other supplements, every body has a different chemistry and a different way of handling illnesses. I take green juices every day as well and no sugar, no dairy products and little meat.