bronchiectasis/pseudomonas

Sounds like you live in the states.  I live in northern Indiana and have had lung issues starting in my late 30s, im now 66.  I was first diagnosied with asthma, then COPD, then after a CT scan 2 yrs ago, bronchiectasis, due to childhood illnesses.

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.

Hi Elizabeth, I live in NC but am from KY.  I was diagnosed in 2011 with bronchiectasis with pseudamonas.  My pulmonologist started me on azithromax I think, 3 days a week.  My GP questioned it being afraid that antibiotics would eventually not work.  So the plum doc took me off.  I have had exacerbations so far every 2 years.  My lungs are in good shape according to my pulmonary tests.  I think the pseudamonas causes me more issues.  I'm supposed to be using my acapella but I can't get it apart to clean!  So I don't use it.  So far when I have an exacerbation I am still treated with Cipro but don't know how long it will do the trick.  My GP also gives me a steroidal inhaler but I swear I feel better without it.  Yes it's interesting reading the notes from the UK and Austrailia.  I have jotted a few notes down whenever I see something that might be useful.  I am 60 and was diagnosed during a pneumonia episode.  I live on an island with only 3 doctors who are not familiar with this at all.  My pulmonologist discharged me 2 years ago because he said my lungs are in good shape.  Oh well....I pray that I continue doing this well, but I am scared to be around anyone sick which is tough when I visit my grandchildren.  Please keep in touch, Pam

Hi Pam, I live here in the US as well.  As for the acapella cleaning, they taught us at National Jewish Hospital to fill a pitcher full of hot sudsy water, submerge with top up for about an hour, rinse real well, and stand on end to dry.  I have two so one is always clean.  I use after my neb treatments, works best if mucus is loose from neb and is easier to come up.  National Jewish and Beth Isreal are both really good hospitals. I also went to Cleveland Clinic. All these hospitals deal with our diseases and were a great help for me.  I have moved from Alaska and sorry to say have not had such a good doctor here that I had up north.  Keep us posted on any updates you have.  Take care, Carolyn

Hi Elizabeth,

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

Thanks for the info Carolyn.  Where do you live now?  I am on vacation spending the holidays with my kids and did not bring my acapella but will clean as you described when I get back to NC.  Thanks again, Pam 

Pam, we are here in NV now. Nothing as beautiful as Alaska. It has not helped being in a different climate, which my Alaska doc said.  Wen you use your flutter device, lay on your back, but elevated some, don't lie flat, breath in as deep as you can, hold for count to 3-5, then exhale smoothly and slowly into the device. Repeat 10 times in this position.  After that tenth exhale, huff really hard three time then cough after that third huff. Make these huffs come from deep inside your lungs. This is lung cleaning.  Then turn on each side and do the same. Those three little stubs on the side of the device are what they refer to its feet.  Keep those feet always pointing down, even when on your side.  Adults are to use the green device.  Oh, one more thing, pull off the mouth piece only when sumerged in the water.  Do take care and Merry Christmas.

mizsuzyq,

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

Hi

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

Hi, Bela,  I said the same thing to my husband the other day - I would not be able to work easily.  But my job was in an office and just me - so not your situation at all.  I'm retired now and 'work' at home with diff. projects & not working for someone else.  I guess we have to consider ourselves 'lucky' if this disease hits us when we are older altho it's bad too as we are weaker and maybe more frail.  I have had doctors who DO NOT want me on antibiotics (or anybody if they can help it).  A natural doctor won't use them and only if it's a bad infection will my pulm dr. use them.  I've had two pulm drs. and they both feel that way.  I don't go to a primary dr. for this.  The pulm dr. can test you and tell you what's going on and he would know what medication to offer you.  You sound like you should be on something like Advair or Symbicort as they are steroids - Singulair did not work for me and I forget what it is for but it's not a steroid.  I have also found that if something does not work one year it might work in another year or another time like Spiriva works at times for me and right now it's not working at all.  I don't think I'm able to breathe it deep enough into my lungs. It's supposed to keep the airways open as I understand it. The nebulizer treatment that has Albuterol AND Ipratroprium together worked really well for me - have you tried something like that?  antibiotics are probably the reason you don't feel so good now because they are not 'good' for you in many ways.  You don't quite feel like yourself when you take them, I don't think.  I take Vitamin C - you could try that.  Get the powder form and mix 1/2 tspn. in water and drink it and do that for a week and then next week add a 2nd one so you take 1 tspn a day.  You read the directions or look online and read how to start on it.

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.

Hi tabatha,

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.

Bela,

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.

 

I just heard of Manuka honey.  How do you use it and how much?  Same question with Tumeric.  Thanks for the help.

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 

elizabeth how was your trip to Hawaii? Did it help? How are you feeling? Saw my Infectious disease Doc on Friday and awaiting sputum culture results. Still feeling fatigue. I worked in the yard for about 20 minutes yesterday with a hepa filter mask but felt like I got into allergens. Thought I would have to cancel my upcoming trip, but this morning felt much better. 

Russ

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

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

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

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.