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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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christiann74538 Guest
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tabatha84296 Guest
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I have no idea whether just taking a Vit. C supplement would do the same thing as it doesn't go directly into the blood all at one time. You'd need to take it all thruout the day in large doses to do much good because you pee it out and you couldn't take 50,000 by supplement, and the idea is to keep your body saturated with it. I found it difficult to do and could only keep up the supplements at the rate of 8000 mg a day for 2 years and then I stopped. That explains why I might have slipped a bit and maybe gotten worse. But I do take 1 tspn of the powder which is 5000 mg in water (2 glasses) if I feel a cold coming on and immediately it zaps it. It's amazing. Read about Vit. C online - don't know the authors offhand but there are books written by the men who discovered the importance of Vit. C - many informative sites come up online just putting in Vitamin C story. Anyway it can't hurt anything and only does good. But see a natural doctor to find out more.
elizabeth49611 tabatha84296
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Beth
dale60748 Guest
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I am not sure how long I have had bronchiecitasis amd psudomonas but in 2010 I was admitted to U of M Hospital in AA Michigan for a severe infection and was in a coma for 6 days and was on life support for those 6 days and my body was shutting down and my family was told that I was ot going to live. When the Doctors finally figured out that what I had was pseudomonos and I was given several intravenus antibiotics I finally was able to go to a nursing home for rehab. Today I I am on a 3 day per week course of Azithomycin 500mg and about 3-4 time a year need to go on prednazone for about a week tapering down because I get shortness of breath and wheezing at night. I also can not get rid of the pseudomas as it shows up in my sputum samples every other 2 months. I take the 28 day treatments of the Tobymicin but I think doing that just keeps the pseudonomos controlled and does not kill it. One thing I would like to say is that I eat a lot of cabbage,garlic,horsradish,jalipino peppers,brochili and also drink a lot of green tea,peppermint tea and basically anything that will build the immune system natually. I exercize by working in my yard and by donig so makes me cough up flem . I am 69 years old and most of the time feel preety good. If I can answear any questions please feel free to ask.
pinksnugsy dale60748
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I'm so glad they found out what was making you so ill and you pulled through. I to have to control pseudomonus on a daily basis. I nebulise meropenem twice a day plus I nebulise hypertonic saline which helps shift the mucus & I take much dyne 3 times a day. One thing I find useful is my acapella this also helps to shift the mucus.It rare you ever get rid of pseudomonus so it's all about managing it. Manuka honey is also very good for the immune system & turmeric. It great yr able to exercise. Stay well. ☺
Take care
Rachel
dale60748 pinksnugsy
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You too stay well,
Dale
pinksnugsy dale60748
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mizsuzyq dale60748
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Hey Dale,
You might ask your doc about levequin and biaxian. 3 weeks of one then followed by three weeks of other for the psudomonas. Once it sets up house in your lungs, it it rare that it will ever leave it. It can be controlled with drugs, but our docs here will only treat the bacteria when it rears its head otherwise it can become immune to the drugs and there are very few that can help fight it. If you can see my remarks to Elizabeth and Tabatha above, this has kept me out of hospital and having the iv's. I'm so greatful for that. Also, if one can travel to our Natioal Jewish Hospital in Denver Colorado, they have you stay for about 10 days and put you through a routing to focus into all aea of your health and work with your home docs to get you on a really good regiment. Folks go to that hospital from all over the world.
Take care and keep us posted. Forgot to mention, ask your doc about Wilson Rinse for the nose.
Carolyn
vj1958 Guest
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I was wondering if you still have this problem? I also have PA in sinuses, and I take Cipro but it's really hurting my muscles.
johnnyd57uk vj1958
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Yes I still have this problem but am symptom free at the minute. I nebulise Colomycin twice a day. Not sure how effective that might be for PA in sinuses. You could ask your Consultant. It is quite expensive. Azithromycin is another antibiotic I have had in the last year and its effective with only a short course.5 days appears to be the maximum.
johnnyd57uk
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I forgot to add that apart from the Bronchiectasis I also have Aspergillosis which has so far proved untreatable. It probably caused/contributed to my bronchiectasis in the first place. I am sure its still doing damage to my lungs. Despite all this I am relatively symptom free and could probably do 100 metres in about 20 seconds lol. I have started to to do some cycling which should help my lungs and immune system. I have been a chronic asthmatic all my life but somehow managed to do ok until I developed Aspergillosis.
dale60748 vj1958
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Dale
mizsuzyq dale60748
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Hi Dale,
This is Mizsuzyq and so far the sinus' do not have PA. Just the lungs. I'm here in United States and seeing a pulmonary specialist is very easy and one can get into them sooner than later. I understand that abroad is a different story. I also have an ENT doctor and both of them are in contact with each other.
katie89222 Guest
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Thank you so much to all of you who have posted on here! I'm a newbie - been asthmatic all my life, but diagnosed with Bronchiectasis last year and Pseudomonas has prob been colonised for a few years and just can't seem to shift it for longer than 2 - 4 weeks.
?Some great ideas re Vit C treatment which I shall look into but I was interested in different opinions on low dose antibiotic and whether it increases resistance?
?I am on low dose Azithromycin and now have 2 more weeks of Ciprofloxacin as Pseudo has flared up again. If Pseudo keeps coming back, is there any point taking the Azithromycin? What does everyone think?
?I also use the Acapella, which does help move some mucus, but only when I am super hydrated. I am dehydrated a lot of the time due to antihistamines for year long hayfever. Finally also have a referral to check out my sinuses which may help I guess.
?But I reckon the Pseudo is responsible for utter exhaustion I feel at times. Been signed off work this week as I can't function through tiredness and am thinking I am only really up to working part time. Would love to hear from people who have managed to stay employed and how you find that balance.
?Just super super thanks to all for posting as you've made me feel not quite so alone with it all. Those who breath well (rest of my family) just have no idea how worrying and debilitating this can be...... Constantly wondering if I am death's door!
?BTW I am 45 year old female in UK :-)
tabatha84296 katie89222
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Hi, Katie,
Re the exhaustion and loss of work you mention - you know we hear we should drink 8 glasses of water a day and that's for normal people without any problems whatsoever. It's a lot to drink. You say you are dehydrated from antihistamines so-do you drink 8 glasses a day? If so then I'd increase it a bit if it were me -very difficult to do so I'd think of something besides water to make it more appealing. Orange juice counts and watery soup like onion soup - green tea maybe, although I've heard that tea can dry you just like coffee (I think it's the caffeine & we shouldn't have anything that dries us in the chest) - how about grape or cranberry juice in a 12 oz glass with most of it water. Even orange juice I put 1/4 glass orange juice and 3/4 water - better than plain water and also you can tell yourself that you HAVE to finish it because you don't need to throw money away. Another way to drink more is to prefill your bottles and leave them laying around. They MUST be finished before you go to sleep. Another thing is V-8 juice that should count as a liquid and it's full of vitamins and minerals too. Maybe some of our preferred spices can be added to that - I wish I'd thought of dehydration back when I was taking Dristan for severe hayfever back in the 60's and all antihistamines about knocked you out. I'd be almost sleeping at my desk every day. Didn't even think or care about dehydration. Possibly drinking a lot more would have not had me so sleepy. Instead I drank coffee to stay awake and that would have dried me more but that was before BX and everything else. Your exhaustion issue could be from the dehydration. You could check side effects of dehydration - I know they are serious.
OK so now you've had all those glasses of water and juice I mentioned and your Acapella is doing a better job
plus you probably wouldn't even need the Acapella as [b]all that liquid will do the job instead.
)
You mention family - a lot of us feel that way too - my husband hears me complain about how I feel and what's more he hears me cough and sees what I go thru but I haven't told anybody else; not even my grown kids know and I know they wonder why I won't get on a plane to go visit but I have fears of having a coughing fit that won't stop or gagging or mucus or clearing throat every two minutes or whatever. I don't know whether to go into it all with them and then maybe have them not want to include us in reunions or visits to us etc. I don't want them to think Grandma has gotten 'too old' etc. etc. So I just act like things are normal when I am visiting (a driving visit). BUT I behave differently: I have COPD also and asthma so out of breath a lot so I sit most of the time, don't rush around the house, take lots of time getting up, can't lift the baby never mind the older child. because being out of breath causes coughing; I don't walk fast if they go walking somewhere - they turn around and look for me to see if I'm still following or I'm telling my husband to wait up. Last time they came here to visit we were at a park and my son asks IF I WANT A WHEELCHAIR? Whaat?? Another time my son grabbed me by the hand and pulled me up many steps probably thinking I just don't get enough exercise and he'd show me it wouldn't hurt me - well i did make it up OK but I wouldn't have had the strength myself to race up the steps myself. He must have thought I was just lazy. He might not have done that if he knew how 'precarious' my lungs feel and I still didn't tell him!! I think I realize they would discount it in a minute.
I don't worry about Pseudomonas as all. It lives in all of us I'm told and I'm not sure what it feels like or looks like if it acts up in the body. I believe the mucous turns to a dull green color (or is it the bright lime green color?) only going by a doctor telling me that when he saw a sputum sample in a bottle I took to show him. Nothing u can do; it's just part of it, he said. So I don't worry. Since it doesn't appear to make me ill or feverish etc. I figure it doesn't need any drug.
Katie, I would just keep doing as much as you can that is natural and not drug related if you can and let the body take care of itself. That's my recommendation. I promised myself many years ago when I was on bad drugs for other different things that I would just quit the drugs altogether and let the body handle it and I told myself that God would not let anything else surely happen because I had already so many issues and you hear of older people taking so many drugs their body gets overwhelmed with them and they interact etc etc so I made that decision and so far been happy with my decision on all fronts . (I refused further osteoporosis drugs; I stopped Arimidex for estrogen production because I felt negative every time I took one as I knew it could cause osteoporosis; and I refused to continue with the acid reflux drug because I knew it also could cause osteoporosis). I have about 10 prescription slips in my 'drug drawer' that I never filled from over many years - I'm not sure if I asked for any of them and nobody ever checked with me to see if I'm taking them. And apparently I never needed them.
Tabatha
ohara katie89222
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debra64041 tabatha84296
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Hi Tabatha...I have asthma, bx and pseudamonas aeruginosa. I am waiting for dr call back at the moment for antibiotic. I HATE taking them! Is there something that you do that helps you avoid them. I get so depleted that I know I need them by now. We get to know our symptoms over the years. I like what you said about God not giving you more problems. I pray many times every day. Drinking more water, praying and my treadmill gave me 48 days between antibiotics. I don't think anybody except fellow "sufferers" of these things can understand how much we think about just being able to breathe. My husband is about done with me I think because he wants to live his life active. It really hurts because I wonder how he could think that way. You seem to cope well. Any good suggestion? Just trying to boost my mood til my miracle arrives😊
debra64041 ohara
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Hi Ohara...The people that you know with pseudo for 10 years-what do they do daily to keep it at bay? I have asthma, bx and pseudo for over 3 years but could use better quality of life for sure-any info would be appreciated!😊
ohara debra64041
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What I do when not having an exacerbation is is take Azithromycin 3 times a week as a prophylactic. use Spiriva and Symbicort inhalers.
Eat healthily
EXERCISE( walking) every day for about an hour
Get my mucus up with deep breathing at least 3 times a day
When I have an infection its STRONG antibiotics ( usually Cipro) if that does not clear it, its IV ab's
Nebulising 3 times a day
Others I know have inhaled Antibiotics like Colomycin all the time, to keep the pseudo at bay
I also take some supplements to try to boost my immunity
But EXERCISE is the best aid to keeping healthy .. I know its often ignored as advice but it does REALLY help