Bronchiectasis with PSEUDOMONAS

Chest and lungs
1

I was diagnosed with Bronchiectasis about 10 years ago. I was complaining about shortness of breath when climbing stairs etc and coughing up phlegm a lot. At the time the specialist just said there was not much to be done because it was minimal bronchiectasis . And because I had asthma all my life that was another issue. So I just dealt with it for nine years and continued my asthma medicine (Advair 250) Then about 2 years ago I started feeling really ill . Tired, flu like systems, sore chest and coughing up lots of phlegm. Finally after 10 rounds of antibiotics I was able to get an appointment with a respiologist a year later. He did a scope of my lungs and found Staph Aureus and PSEUDOMONAS. Took the correct antibiotics (don't remember the name) and It got better but then worse again. He wants me to take Azithromycin on Mon, Wed, Fri from now on but it makes my Ulcerative Colitis really bad so I had to stop and take a round of it if I feel really horrible ( 2 tabs, then 1 for four days) . Nit the best solution but i have no choice.

Then he had me do extensive lung testing and said I did not have asthma and took me off all asthma medicine. Still felt horrible but he said that there was nothing else to be done.

Very frustrating because I feel horrible all the time. The odd thing is I do not cough up much phlegm at all. Actually it is rare. I may get a consistent clearing of the throat but that is it. I feel extremly run down with a sore chest and shortness of breath all the time. And I feel like someone is sitting on my chest and the best description is feeling like I have pneumonia which I had twice years ago and I think caused this whole mess. Worst time of the day is the morning when I wake up, I just lay there until I build up the energy to get up and get moving. Anyway I just keep going because I have no choice. Have two kids and my wife needs me to just be normal. I cannot miss work because I manage a large group so again I just soldier on but it can be very depressing feeling this sick all the time. And frustrating when see other people call in sick because they have a cold.

Anyway I am wondering if anyone else feels this way all the time. Still wondering if I have the right diagnosis because of the no phlegm issue?

Thanks,

John

2

john06652

At first I thought is this Me? Yor description is exactly what I have been through. Asthma, Bx,I also have ABPA

I also take Azithromicin 3 days week for life. Have had this since 2010 when in the hospital for kidney cancer is when I think I got it also had pneunomia twice in hospital 6 years ago. I cough up about 3 tablespoons mucus a day. My doctor told me some patients cough up a cup a day? Wow1 Anyway I did not see anything in your writing about taking Predisone? I have to go on Prednisone about 4 time a year because I get flare ups in my lungs from certain plants,trees,pollun working with Cedar in my garage. When I go on prednisone for a weel I feel like a million bucks for a couple of months. I would ask your doctor about trying that. Good luck and I hope you find a solution

Dale

3

Hi, John,

I'm guessing you are not in the US.  Sounds like it took a long time to get an appt. I have asthma and BX & COPD.   I do not know what BX alone would feel like.

I'm wondering if you stopped wheezing when u stopped your Advair.  If I went without my inhalers I'd feel it with chest tightness and then the asthmatic cough. A day and a half of that and I would feel like I had pneumonia because of those two symptoms.  

If you wasted 9 years on that steroid inhaler and didn't need it then you surely would be very frustrated (or do you think you did need it then just got better from asthma?).Should you have a second opinion NOW and take your test results to another specialist?  I understand we just don't go for a 2nd opinion originally, when we receive a positive dx because we're just happy to know that we HAVE a diagnosis..  

So as I'm understanding it, you are not having asthma symptoms that you know of now, but feeling just awful like pneumonia type symptoms.  I recall a few months ago telling my husband that I felt like I had pneumonia because I felt bad, had coughing that wouldn't stop (chest can hurt really badly from that) and I'd been like that for a few days before I decided to do something about it.  What I do is to take more of my Vitamin C (lots of it right away or thruout the day) and it'll make you feel almost instantly better; and drink hot tea/s -  the heat does a lot of good as well as maybe the type of tea; and I even nebulize more than usual - if you've not done that you might get a nebulizer (prescription).  All that should make you feel better within a day.  That's what I did and that pneumonia feeing was gone by the next day. That was not the first time I'd done all that and each time I got better. I don't resort to antibiotics or steroid pills because I've always managed to get myself better and i don't want to see a doctor if I can help it. I don't want the side effects of those drugs.

I'm also thinking that if you still have your Advair on hand I would use that also to see if you feel better at all with it, then you can tell your doctor if it made a difference.  Going without it does give a feeling of being sick and like pneumonia, if you do have a lung problem like asthma or chronic bronchitis. I know some people who only use their steroid inhalers once in a while when they need it.  I don't understand that as for me that doesn't work but what if you are one of those people?

When you had the Pulmonary Fuction Test, if it didn't show Asthma, what did it show?  Did it show 'obstruction' and no 'restriction''? or vice versa,  or did it show that you have normal lungs?   The doctor should type up a report following the PFT and from that report you should be able to tell something about the state of your lungs.  (My new Pulmo. does NOT type up a report because he says he's on the computer all day and is not going to do it - SO he writes a couple of lines on the bottom of our statement.  as a result there are no figures included and nothing compared to a proper written report describing the entire test). So unless I analyze the figures on my PFT myself (can be done with online help) I pretty well have to rely on the few words the doctor writes.

It must be frustrating living in a place where you can't just go in and see a doctor right away or with your own doctor at least within a week or two.  Anyway there may be more questions you might ask when you do see the specialist.

Re the 'no phlegm' issue - The 'expert' Pulmonologist and Mycobacteria specialist I went to always asked me if I coughed up 1 cup of phlegm a day.  I was always vrery happy to swear I didn't.  I think his expertise crept up a notch when he had a patient who DID produce a cup a day.   Fortunately I did not come close to that. 

Another idea:  have you had a sputum test of the phlegm you do cough up when it's heavier than usual?  Symptoms of certain bacterias are feeling really ill and I guess you could look them up online under 'symptoms of mycobacteria' for example.  Not thinking especially that u have that but it's a way of getting symptoms for lung issues.  There are 7 symptoms I think they give and you can check to see how many you might have. Then tell the doctor.

I hate the idea of steroids because of the bad things they can cause so I try everything possible I can think of - oh - even strong cough drops to stop the cough and salt water gargles and even lemon water.  That latter is pretty good if you u use a lot of cut up lemon in the water and you can keep it for several days by just refilling your glass with water when it's empty and at night put it in fridge and use again next day.  The lemon keeps it's strength and I put fresh lemon in after about 3 days. eventually the lemon taste won't be as good and you'll know when to discard it.

 I think I'm out of ideas now - I hope you will be able to find an answer soon and I hope some of this will help somehow.

Tabatha

4

Hi John,

Needless to say when I saw your post  knew I had to reply right away.  Having Bronchiectasis for over 20 years, thankfully still mild, I endured 1 terrible excerbation and was found to have Pseudomonas. This was the bacteria that was making me deathly sick, unable to move or be part of the world.  I nebulized Tobrimician (spelling?) or also known as Tobi together with hypertonic 5% saline, 3 times a day for 24 months.  Finally it was gone and has stayed gone.  Please do seek treatment because there IS treatment for pseudomonas.  It is one of "our" invasive bacteria that needs to be rid.  You will feel much better once you get a handle on it.  Any questions...just ask xoxoxoxo

5

Hi John, am following this thread with interest as it so closely mirrors my experience. I read in one reply about Vitamin C, can anyone tell me how much I should take daily?

Many thanks,

Deborah

6

Sorry deborah, I don't take Vitamin C.   hope someome can help you.

7

Arlene,

I am also on Tobi however every other month as what my Doctor prescribes I have never heard about the 5% saline ? is that through a Nebulizer mixed with the Tobi?

Can you tell me more" Thanks Dale

8

No Dale,  I used it after nebulizing the Tobi.  It's not a requirement, nor is it a cure all.  But I did find it refreshing after the Tobi and it seems to hydrate my entire respiratory system.  There are people who find it useless and others like myself who find it cleansing.  You need to purchase the bags (just like a iv bag) only from a hospital and draw out with a syringe.  Both are covered, including the syringe from my medical plan, however the saline is not expensive at all.  I did wash my nebulizer before the saline after the Tobi and then again after the saline.  

9

Thanks Dale. Yes I have taken prednisone in the past for my Ulcerative Colitis and yes it deserves make you feel great. So that may be an option. Thx.

10

John,

We all have experenced the same issues as you. One good thing is that you don't produce a lot of mucus. I worked full time with bronchiectasis (started having breathing issues in my late 30s, I'm now 67 and retired). And I also had days when I had to force myself to get up and go to work.

Since Bx is a progessive illness, the last 7 or so years I have noticed more and more shortness of breath, low energy and generally feeling lousy more and more, BUT lately I have been feeling a lot better, why?.....I asked my specialist about allergies and asthma related to Bx last month.  He was vague with an answer. I was diagnosed with allergies in my late 30s and took shots for it for years, but have not addressed the issue since I was diagnosed with then, years later asthma, then years later COPD then by way of a CT scan, Bronchiectasis 5 yrs ago.

I told my specialist that I felt that I was getting the mucus up, but that my chest always felt tight, as you said, like someone sitting on my chest. (My guess, inflammation of the lung airways due to an allergic reaction to what is in the air).

He did start me on a new steriod inhaler (Dulera) and I also started taking over the counter allergy med as well as taking Musinex at the same time.  I don't know if it's the inhaler or the otc meds, but I have been feeling much better since.  No more waking up at night wheezing and needing my rescue inhaler, very little shortness of breath. Lower mucus production. More energy. I have  been able to lower my doesage of prednisone (which I have to had to take for years) from 40mg to 20mg per day.

I also take azithromycin, and Turmeric (with pepper).  Turmeric has anti-inflammatory properties. Other tips from this website that people have done to limit the effects of Bx: Try to limit or eliminate dairy products (which some say increases mucus production) or some people go natural (no processed foods).  You may have a food allergy. Try watching what grains and other foods that you eat that may make you feel worst. Some have tried essential oils. I have tried Manuka honey (antibiotic properties).

It's a lot of trial and error, even by the doctor, since each person is different.

Don't give up or give in to this illness, Beth

11

Hi ArleneB

I had an apointment with My pulmonoligist yesterday and told him about the inhaling saline solution. He said that usually he just prescribes it to CF patients but he gave me a prescription for it to try  on the every othe mont after the Tobi. It is 7% and comes in the same nebules as the Tobi from my pharmacy here in Michigan He said it cleans the lungs and some people feel a little natious at first but get over that. He said that peole who use the saline solution reort that it cuts down on their flare ups.I just don't know why after me being on Tobi for several years he never mentioned trying the saline solution. I have found out for me anyway that we as patients have to be our own health advocates and learn as much as we possible can about our illnesses and ask questions. Thank You for you mentioning the saline solution I will start using it in January.

Dale

12

I am so happy to hear this dale. We absolutely must be our own advocates. We also need to ensure our medical team knows what each doctor is doing and what they have prescribed. Even my Psychiatrist is part of my team. I try to read everyone can whenever I see it. Like you 💕 I listen to others not just with a grain of salt but with an open mind. You'll never loose by doing that.

I'm very happy you were given the saline. I'm ny opinion you'll like the effects it brings. No harm no foul. Be well. Let me know how it goes. 💕

13

I will let you know Arlene, I have read for years about Salt room where people can go and sit and breath in I think Peruvian Salt? and it cleans their lungs and what you mentioned made me really excited.

Thank you very much,

Dale

14

Hi, Deborah,  I think I'm probably one of the very few if not the only one who  has raved about Vit. C.  I know you only asked for a dosage but I want to give you more info because it helps to understand where I got the dosage from and why I so believe in it.

I had a non-tuberculosis mycobacteria (dxd from a sputum test) and my doctor had looked at my 'green' sputum (in a glass) another time in an office visit, and said I had pseudomonas and it was hard to get rid of.  I didn't want to go on the severe regimen of 3-4 antibiotics he recommended, for several years to get rid of the mycobacteria (I read all about that!) , so went to a natural doctor who gives Vit. C by IV mixed with a few other vitamins and they test your blood first to see how much C they can give you.  I think I had 50,000 ml (not positive but that doesn't matter because they'd test you first).  After 10 wks of one IV per wk. I had another sputum test and the mycobacteria was gone and no evidence of any Pseudomonas either. The doctor was not surprised at all and took it in stride but I was over the moon with excitement and disbelief.  When that 10 wks was up the doctor told me to take 8,000 mg a day of Vit. C orally.  I think he said that amount was equal to what I'd taken by IV.  I never understood that but I just followed his advice.  Since my blood had all the Vit. C running thru it I figured the 8000 mg a day would keep the saturation going. Since he took his C in powder form he highly recommended that and that's what I got because I don't want to have to swallow so many capsules every day.  It's very inexpensive bought online.

It kept me healthy and feeling good.  I had several sputum tests since, always negative for both.

It prevents colds from catching on and if you have one starting it stops it immediately if you take enough and I'd say to you if you do not take C already, start with 1000 the first day or two, then move it up to 2500.  If you don't reach the point of diarrhea you can keep going up 500 mg a day - it won't hurt and helps so much in the body.  If you reach the point of D. then back it off 500 mg for a couple of days then go up again 500 mg a day.  

In powder form you get 2500 mg in one half teaspoon.  You mix it in water or orange juice or other juice but since we don't need sugar in drinks every day the water is best.  You can spread it out thru the day because it leaves the body quickly and the idea is to saturate the body with it so it's always in your system.  I fill a tall glass with 2500 mg and drink it thru the morning and then do it again in the afternoon and then take pills at night or more powder until I reach the 8000.   The body can tolerate much more Vit. C than these amounts I'm talking about, if you are sick.  The sicker you are the more C you can tolerate without any effect.  If you have a very serious disease I've read that even up to 100,000 mg is tolerable without the D effect.  I've read it can cure diseases if taken enough.  I have to say it's kept me extremely well, I take no antibiotics, so far as I know I never have infections.  I hate to go on and oin about the C but I think it's worth mentioning to give people other ideas.  I dropped out of a support group for NTMycobacteria because I just wasn't sick and suffering like all the people in the group, suffering mainly with problems from all their antibiotics.   What have people got to lose by trying something so easy and so inexpensive and so painless say for a few months, just to see how they respond. If people are still getting infections then they are not taking enough or not spreading it thruout the day.  I'm pretty sure it would be better than being on antibiotics that you have to keep repeating and maybe forever and cost money and not to mention the bad effects otherwise on the body.   They destroy the good bacteris in your gut which of course causes more illness.  

I will private message you and give you the brand which I've found is the best and has no bad taste.  I've tried another brand that was horrible and it still sits on my shelf and it's in a form like a fiber and won't dissolve so it's truly gross.  But the one I use dissolves instantly and the flavor is OK and the more water you have with it the better it tastes and another way of taking it is to add say 1/4 cup of juice or something just to flavor it. For tea drinkers you could even put it in tea. Cranberry is delightful with it but watch the sugar.

OK, that's it.  I hope you do try it and give it a fair trial of weeks/months.  I hope you'll let us know how you do.

Tabatha

15

Sorry for the delay getting back to everyone. I really appreciate the feedback and information. I was recently away on vacation and again started feeling horible so I did what my Dr recommended and took the arithromyacin. 2 tabs the first day then one tab a day for 4 days and felt much better. The problem is that it only lasts about 2 weeks then what ever the problem is, it came back again.

The concern is that this is what I went through last year and when I finally got to see a specialist he did a scope on my lungs and found the fungus and told me that all the antibiotics I was taking were only a temporary fix and that it would always come back unless I took the proper antibiotic to get rid of the pseudomonas. Anyway I just wonder if I am back in the same routine again because it has been two weeks and now I am back taking the antibiotics again even after taking them Mon, Wed, and Friday again.

I am in Canada so seeing a doctor is really not a problem. I can make an appointment to see my family doctor or another doctor in the clinic almost the same day. It is seeing a specialist that is the problem. There are not enough of them so there is a wait time. Luckily I have a friend who works in a hospital so when I told her how long I was waiting for the specialist appointment she was able to make an appointment for me within 2 weeks. That is the specialist who did the scope for me.

Anyway I am going to do this round of antibiotics again and then start trying some of the ideas brought up here.

Thanks again.

John

16

John, I haven't gone back to read all these replies but just a reminder here after reading your current problem - don't forget to take Probiotics along with your antibiotics.  The latter destroy the good bacteria in your gut so you do not feel good after taking them.  If you take the Probiotics take them a different time of day but do take them twice a day at other times from the drug.  Also be sure you have a good one with several strains.  Like I take 15 strains and billions instead of millions.  The more strains and the higher amount makes it more expensive.  Even 8 strains would be better than just one like Acidophilus alone. That way it helps the entire body (I've read).  It will protect or add good bacteria in the good which keeps you healthy.

Whether or not you will FEEL a difference when you take the Probiotics I don't know but you shouldn't be getting repeated sickness.

Since I'm not on antibiotics I don't know if you feel different daily while taking the PB but I do take probiotics every day anyway because they help to keep us healthy.  (In fact I just talked to a family member last week who was told by a medical person they can even prevent cancer - that would surely depend on the strains and strength one takes and how long and when etc. etc. if that is true).

Tabatha