bronchiectasis/pseudomonas
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
Poemsgalore
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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.
supercough
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mizsuzyq
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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.
elizabeth49611 mizsuzyq
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I just had my second visit to the Mayo Clinic in Rochester, MN. The doctor there and my specialist agree to put me on a long term low dosage antiboitic to see if I can stay semi-healthy on a level basis. I've had 5 bronchoscopies within the past year alone, and 3 hospital stays. Some days, I feel great, other times, I'm very wheezy and short of breath which progresses to either a bronc or the hopsital.
I've been doing everything that you mentioned, except for the bi-pap at night. If I'm wheezy at night, I use a pillow wedge to elevated my head and torso which helps.
I get the impression that in the UK they don't use the vest. It is interesting how this illness is treated in other contries.
Stay positive and healthy.
Pamathatteras elizabeth49611
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mizsuzyq Pamathatteras
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mizsuzyq elizabeth49611
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Yes, I'm here in the states from Alaska, but now in the lower 48. Have someone train you on the acappella flutter, it does really help get up that gunk. Beth Isreal on east coast is a great hospital and so is National Jewish in Denver. Cleveland Clinic also specializes in our conditionals. Keep us postes. I know I had a very hard time finding a site that we could all share stores with and sometimes just us investigating what helps us, might help others. Take care, Carolyn
Pamathatteras mizsuzyq
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mizsuzyq Pamathatteras
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elizabeth49611 mizsuzyq
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I also use the acappella flutter. It does help.
From reading what oher people do on this website, I started taking Manuka honey everyday, it's hard to find (Trader Joes, Amazon) and Turmeric, with pepper, every day. Also was put on a low dosage long term antibiotic. And when needed a regular antibiotic.
It has made a big difference. For the past month, I have felt better than I have in months. I still use my nebulizer, vest, and flutter every day, but up until this year, the fall and winter were the worst. Last year at this time, I had already had two bronchscopies and still felt lousy.
So this has been abig improvement. So you may want to try natural products.
Elizabeth
Bela1957 mizsuzyq
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I wonder what kind of job we can do when we have to do all this every day. I am working in a store and I see different people. Homeless , sick, unclean ones. I am very frightening of working with big group or serving many people in one day . I diagnosed more than four years ago but my primary docter did not care and send me to pulmonologist .till I changed my primary docter and i had more bloody mucus. It been a year since I have my advice and singular. I been having antibiotics on and of too. I was doing much better without these medication before . But I can not said this after I read about you guys. Please I need help do I have to stop working in the store especially I am very sick know with the flu. I think I have to do my physiotherapy regularly otherwise I will in bad situation soon. Any help thank you
tabatha84296 Bela1957
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It will help u stay well and keep the bugs away from you at the store and it also makes you feel good. You won't get a cold and therefore you will be less likely to get an infection. If you have a natural doctor or homeopathic dr near you, you might think about that as they can advise u on supplements to keep u healthy and how much to take etc., but keep your Pulm dr. also. You said yourself you need to do your physio. so yes, that's a great idea!! I think we're all afraid of the situation we're in. You are certainly not alone there. Some days I almost panic but not quite. And when I feel that bad I pull out the nebulizer (actually now it's on a table beside a chair by my bed so I can do it right before bed or in the morning - it's a reminder when I see it there. And I make sure I do that Symbicort at the right time - you don't have that so that's something I'd ask your Pulmonary doctor about. I hope some of this is helpful to you.
Bela1957 tabatha84296
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Thank you so much for your reply. Help me to relax especially I am experiencing very bad cold with so loud wheezing. I usually have my flu shot except this year. I was doing ok with flu shot . I wish I had it . I am very scared to get my situation worse. I do not like my pulmonologist that much. He give me so much medications and I hate antibiotics . Now i feel pain in my chest as well as my back. Before I saw my pulmonologist I did not feel that or having asthma but he started me with advar and singular last year, when i did not feel wheezing or pain before these medications. I love to mange myself natural ly and I will search for things that make me feel good when I take them. I drink so much herbs tea and eat very healthy. I will change my pulmonologist and I hope he will do batter job. I have my third CT scan this week and I will let you know the new. God protect us and keep us healthy.
tabatha84296 Bela1957
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I haven't looked to see if anyone else has answered you but I think you should be checked by a Pulm. doctor because pain in your back and chest can mean pneumonia and or pleurisy which is inflammation of the lining of your lung - the outside of your lung. I've had that many times in the past (I know I sound like I've had an awful lot of things but it's true, I guess I have lots of experience as I've had pneumonia and pleurisy and bronchitis many times since I was little and I'm old now : )
I can pretty well guarantee you that Vitamin C will get rid of your pleurisy if that's what you have. You don't probably need an antibiotic for that.unless you have pneumonia too. I had a very painful case for months at the time I had a bacteria in my lungs and it was the Vitamin C IVs that got rid of both. Just one day the pleurisy pain was gone. So now when I feel I am getting it again I take a large dose daily like 2500 mg in pill or powder form to start and build up to 5000 a day and increase it until you have diarrhea then you decrease by 500 mg and stick with that dose. The sicker you are the more vitamin C the body will tolerate before giving u that problem.
But see the pulm. dr. for sure in case u have pneumonia and he can hear that in your lungs. try not to have too many CT scans. Again, I have experience there - my prev. dr. gave me 15 CT scans over 10 years (every time a nodule showed up on an x-ray I think he sent me for a scan) and it was always a negative result and then I was told by someone in radiation that there is a max that is safe and that is 10 in a lifetime. I don't know if that is true or not as other people haven't heard of that, but my current pulm. dr. won't send me for a CT scan. He told me on our first appt. that he thought I'd had too many. So that's a question u could ask about how important it really is to have one the next time they want to send you for one;. Perhaps someone else can give more info on that. I've been told by a cancer doctor that cancer patients have CT scans all the time and obviously that would probably surpass 10 but I look at that as being necessary and the lesser of two evils.
One more thing, do u think you can tell your doctor that you don't like being on antibiotics and ask him if they are really that necessary or could there be another treatment instead? He may think you expect him to give you a script for a drug and wants to keep you happy. And if it were me I think I would get back on that Advair he started you on and it might be all it takes to get rid of the pain and wheezing you have going on. Hope this helps also, Bela.
carol23917 elizabeth49611
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I just heard of Manuka honey. How do you use it and how much? Same question with Tumeric. Thanks for the help.
elizabeth49611 carol23917
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Carol,
I just take a spoon full of the honey each day. I was told not to put it in anything hot, like tea. Some people put it in their daily health smoothie.
Turmeric I take 900mg twice a day. You are to take it with pepper (peppercorns are easier). It's to increase the effectiveness. I was buying it a the local pharmacy, but now I buy the turmeric with the pepper alreadly added.
Glad to help, Beth
Russell27NOLA elizabeth49611
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Russ
elizabeth49611 Russell27NOLA
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Russ,
My time in Hawwaii was great. The house that we rented did not have air condioning, so I was concerned about breathing in allergens day and night or it being too hot and humid. But the temp was always comfortable with the ocean breeze and my sinuses didn't act up.
We did a lot of snorkling at the tide pools close by, so I was breathing in the salt air a lot. I felt it did my lungs some good.
I did feel like I was coming down with something before we left for our trip, so I had my doctor give some antibiotics. I took them for a week. I always worry before a trip about getting sick on the trip.
We will be going to England/Whales and Ireland the last two weeks in April, so I need to prepare for my health, so I don't get sick and ruin the trip.
Where are you going on your trip?
Sometimes, just the change of scenery can improve the fatigue. I think less about my illness when I'm visiting places and therefore feel less fatigue.
Beth
Russell27NOLA elizabeth49611
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Seems as if you had a reasonably great trip but for being on antibiotics.
I know what you mean about being away from home in a new environment and feeling less fatigued. A new routine cleans the palate. I was suprised that you did a lot of snorkling.I have done the same and it's sport with a lot of water to the face and nose Glad you had a good experieince.My dad used to say that nothing cures better than sun and sea water.
I'm waiting on results from a sputum cultrue form my ID doctor to see if I need antibiotics. Not sure as of today (fatigue and that feeling you get when you think you might be getting a fever) weather I should go on my trip. Would like to take antibiotics with me if I go. I have great tickets and can reshedule for another trip with ourt lossing my money. (South West).
Russ
elizabeth49611 Russell27NOLA
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Russ,
You may want to ask your doctor for some antibiotics. It's better to have them and not need them, than to get sick and need them.
Where do you live (I live in Des Moines, Iowa)? And where out west are you going?
Beth
sweet85322 tabatha84296
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Thank you for your post. What bacteria did you have that was gone by taking Vit C. Please let me know because I have drug resistant Burkholderia cepecia growing in my lungs.