Struggling to deal with constant infections

I hope by now you have gotten some good advice from your doctor and are doing better.

Thinking of you and everybody here who are struggling,

Ida

I have NJH tucked in my back pocket for now. as I am still harvesting the positive effects from my recent life style changes.

Fatigue is still a problem, but it seems less so these days. 

I will write more later, I'm swimming in a gelatinous stream of platitudes rthis morning. Like what you said to Lorraine. This is good example of how we as a group help each other live a better life with such a daunting illness. 

Best

Russ

Anyway that's why I haven't responded to your thank you note.  By the way the National Jewish Health epistle I sent you was not written by me but by the lady who ran the support group for non-tuberculosis mycobacteria.  There are people in that group who live on antibiotics several of them each day for 2 or 3 years and then some still don't get better.  I was so frightened at the thought of antibiotics every day for 2 years with possibility of have eye problems and liver problems that I made up my mind I wouldn't go that route and 'trusted' that I would find an answer another way (with the Vit.C).   So I dropped out of that group as I didn't need it anymore and that alone helped me mentally.

You talk about fatigue - luckily I have not experienced that unless it's my being unable to wake up in the mornings. But when I get up I'm fine.  Maybe we all need extra sleep with these diseases.  doctors don't talk about that.

Glad to hear you are doing well with your new changes. After sucking on licorice sticks all week (I read that can be good for lung problems too) and very addictive but gets one away from the chocolate, I'm back on fruits and veggies again and trying all these site suggestions

I have loved black licorice all of my life and still have a few sticks now and then. But when I say "a few sticks" I am talking about the commerically available sweetened varieties like "Tweelers".  I am amazed to know that many, but not all, of the commericial Licorice candies are flavored with Anise oil or other flavors beside licorice oils, although not Twellers and of course piles of sugar I assume. (18 grams in four sticks of Tweezlers.)

I have never tried real licorice root. I  thought at first you have been using the licoirce sticks  but I may not be correct after rereading your paragragh above. What brand have you been using. Sorry about going on about licorice, I just like it so much. I will try some of the real licorice after your story.

As far as the antibiotics I am wondering if it works for some of us and not others. In other the words that Bronchciectasis is acitually a not the same disease in each of us, because each of us is an individual  genetic form of "homo sapien".

."No two humans are genetically identical. Even monozygotic twins, who develop from one zygote, have infrequent genetic differences due to mutations occurring during development and gene copy-number variation." -Wikipedia.

"A new computational tool successfully tested in a small pilot trial harnesses clinical data to predict the optimal drug dose for an individual. The mathematical approach underlying the tool promises to take the educated guesswork out of prescribing medications for immunosuppression, cancer, heart disease, bacterial infections, and other conditions that require tightly controlled treatment regimens."-American Association for the Advancement of Science.

There are studies that say antibiotic use is a statically signifcant therapy  for BRXa and others that say not.

You clearly have benifited from the Vitmain C and other remidies. Others in our group have found a different but similar routes. I have been taking the suggestions from our group and following up on them. I dont think I have my complete system worked out, and again it may change I as become older. 

I forget how do your drainge of sputum? Again different for several of us. I am attempting to get sputum up in the mornings, but have had little success. Working on puchasing "The Vest" that may help now and  especailly as I get older.

I am attempting do exactly what you said about extra sleep. I have a tendency to go to bed between 11 and 12pm, and am attempting to get to bed at least and hour earlier. Thanks for reminding me.

Yes the fatigue is just that: not being able to get out of bed. Once up I am almost normal. 

Good hearing from you Tabatha. Keep me posted on your progress or sometimes lack of it and I will do the same.

All my best,

Russ

Sugar, you say?  that explains why I feel heavier!  Our neighbors first gave me the remains of their bag (don't know the brand now but it was imported) which they bought locally at a candy mfgr's store.  I can't find it, however, on their site so maybe it was a special one time sort of thing.  BUT I went to Google and put in 'licorice' and up popped a black and beige bag with short pieces in it and 'New Zealand's favorite licorice, made from the world's finest natural licorice root.'   So, would that be what you would want rather than the anise flavored?  While away last week I also bought some Australian licorice at a fresh market and it was similar in taste and texture so likely the same thing.  But no ingredients were listed as they were in bulk.  I have to lay off them because they are heavy even in the bag!!  But I notice that I'm not coughing and hacking stuff up.  Probably not worth the weight gain tho.

The other kind with the anise can be found if at the right time at one of our favorite large drugstores in the USA.  I had that too last week.

Re the drainage of sputum - I don't do anything specific. I've tried the Acapella but get no results whatever.  Nebulizing works for me with Albuterol to help open airway and sometimes it will make me cough but it's a dry cough always more like a tickle in my throat.  But it allows me to draw in a deeper breath when I do the symbicort inhaler.  I asked my 1st Pulmo. Dr. for pulm. rehab and he said I don't need it because I can cough.  I thought that was strange because I wanted to strengthen my lungs and know everything there was to know to help myself.  My new Pulm. Dr. was willing to give me a script but the hospital charged $290 a day for rehab  so that was out and the only other place in town was a Dr's office with a PT attached so I went there as it was barely any cost to me and all they taught me was to lie down, knees up I think and inhale and cough on exhale while pushing on my upper chest, side chest and diaphragm but it was so uncomfortable as I coughed like I did when I had the coughing problem (heart rate goes up etc.) - like it was spasms that I couldn't stop so I don't do that.  I go several days just fine and then one day I feel clogged up in the chest and little by little I cough it up naturally without pushing on my chest. 

If you all do that then I want to know.  I would like to know how everyone does their lung clearance as I have not learned another method if there is one.  Like what is doggie position?  is that hands and knees and head down and butt up?  And then giving a big cough??   I'm hesitant to get down because I had a spinal fusion and have 2 little rods and 4 screws at L4-L5 and have not been told what I should not do.  Dr. just said 'you can go back to whatever you did before'.  Well if u think about that it could prove a little risky since whatever I did before got me in trouble.  Actually I hadn't been on my hands and knees in years but to get there I think I'd have to twist a bit to get down and that makes me nervous.  Now if I can do something on the bed that would be OK.  I can roll over and sometimes that's all it takes to help bring stuff up.  But I don't ever do anything to make stuff come up.  Then once I'm clear I'm good for another 3 days or so.  I mentioned that I'd started Singulair (for asthma) and I'm wondering if that is making a slight difference.  Tomorrow I see the Immunologist/Allergist again for the test results & anxious to ask some questions.

And Russell, how does everyone know when they have infection?  That IS a puzzle to me.  Because years ago I thought green phlegm meant infection but I've learned 'not necessarily' and when I'd call my Pulm Dr. and tell him I had that he'd put me on Cipro and every time after a week the green always came back but I was never sick with it.  Finally he said I was intolerant to Cipro and we just stopped it.  So ever since when I have green it's usually green one minute and white the next or gray for half a day then nothing comes up then a few days later it's the same thing but I'm never sick so that can't be infection, surely.  What do you think?  As I've said I'm never on antibiotics since those days years ago and the Pulm dr. said last month you have to be sick and have a fever to have infection.  Is that what you understand?

I'm glad u cleared up the fatigue issue for me.

Oh, re the antibiotic issue - I wonder if it's possible that the asthma/COPD inhaler I use, being a corticosteroid, and the strongest one, is alleviating enough inflammation that I have less mucous perhaps from the BX?  And I may not be as advanced as others.  I went out at noon today and only got wheezy for a short time and ate dinner out and got home at 9 pm all without any kind of issue.  I recalled what someone said to someone about 'you can still enjoy life'. I think perhaps I'm not as bad or else I'm more relieved by some of my 'remedies'. But I'm probably like the rest of you when I am getting stuff up because ON OCCASION I'm cussing and swearing it's the worst thing to have and on and on until it's finished.  And it sure is nice for everyone to be able to talk here and feel not alone with this problem especially when there are other issues that can get us down as well.

Russell, you sound like a scientific sort of guy and definitely a researcher.  I've read about that computational tool online recently.  I hope they'll have it available soon.

Tabatha.

You can do postural drainage by lying on your side on your bed, with a couple of good cushions under your hips so that your chest is lower than your hips, allowing the phlegm to flow out easier. then do a few huffs and if you can feel the phegm coming give a cough to bring it right out. An Acapella or Flutter helps to loosen anything before coughing so there is no straining. You can look on the internet and it will show you how to use them.

Tabatha

And next the wonderful world of sputum production. I wonder if it could be use to power hearing aides or cell phones. Then we would feel like we are doing somethinhg for the world all whilst coughing our lungs our onto the rug.

Au Revoir

Russ

I rarely have an infection, but when I do, I don't feel sick at all. The color of my sputum gets darker and I produce more and that's all - no fever or feeling bad. 

Maybe you can hand in a sample and they can test it to find out if you are growing any bugs. That would be my suggestion.

Also, it sounds as if you are doing fine without using any equipment or clearance methods. So, if you can bring it up naturally every 3 days or so, then I wouldn't bother doing it any other way. A repsiratory therapist told me that the goal is to let the body do the work naturally and not force it too much and it sounds as if you are already doing that, so congrats!

I agree with you that it is great to have this forum, so that we can all share our experiences and not feel so alone on this journey.

Thanks to all of you. I appreciate you all.

Ida

I have 3 more pcs. of licorice to go and that's it.  I swear no more; it is just too addictive. Side effects too.

Tabatha

Thanks for giving me your personal experience.  The way you describe your sputum is just like mine so why do u think that is infection?  If I called my doctor every time I had green or darker sputum they'd refuse my phone calls.  I've been told the green color doesn't mean infection necessarily. there have to be other symptoms.  I'm confused because I'm never sick, never a fever and the green doesn't last.  right now it's clear white but yesterday a little green for one or two coughs then clear again.  That sort of thing.  Very occasionally it can be heavy and green for all dayi and then nothing for the next two or three days because I've cleared it all out; then clear white or slight pale green.  I just ignore that as I feel fine.

By the way I'll mention it here as I said I'd report back what my Immun.Asthma doctor told me today.  I asked  him what makes our voice gravelly and rough sounding and right away he said that is caused by inhalers.  I thought he might say allergies but he didn't.

I also asked him if I needed lung clearance training and he said no that's not necessary with Bronchiectasis.  He said that is for people with Cystic Fibrosis and he also added that as long as I drink lots of water,  take Mucinex, both of which thin the mucous, do my two inhalers, coughing it up will be fairly easy and all that's necessary.  He is the 3rd doctor to tell me that I don't need to learn lung/chest clearance.

I do understand that the mucous can come up all of a sudden by itself when turning in a different position in bed and that's just a bonus I suppose.And likewise it also comes up like that sometimes just sitting at my desk and I consider that a bonus too as I haven't had to cough it up.  (When the mucous gets very heavy the coughing to try to get it up is worse, and I think that is what causes the throat/voice to get hoarse.) No sickness or fever or anything else to make me think I have infection.   Maybe I'm disillusioned.  But even when I was having sputum tests and had some serious bacteria show up they still didn't treat me with antibiotics because I had no symptoms.  that's the secret - there are about 7 signs to look for and I didn't have any or might have had one but it was normal for me anyway and not unusual.

When I was doing sputum samples the doctor said 'you can't just keep doing this you know.'  I thought I had to keep testing over and over and he said 'eventually something will show up because we all have these bacteria in us, and also you can have nothing show up and you might still have infection because it's not coming from the lungs'.  So they put more stock in how I felt I think and how I looked.

Let me ask u this - is your sputum pale lime green color mixed with white on days when u have no infection or is it just white all the time and only green of any shade when you have infection or only dark grey/green when you have infection?  It's a horrible subject to talk about but I'm wondering why so many people on this site have so many infections and how they really know.  I may have my head in the sand as I have other problems too and I try to be alert to all of them but might be fooling myself into thinking I'm doing fine in one area when I'm not.

So hopefully I'll hear from others about how they know.  This is late and I hope I wasn't garbling --------------------

Tabatha

I know when I'm getting another infection as my cough gets worse, the phlegm gets thicker and greener (its almost always green anyway), I feel shaky and very lathargic, extremely tired and everything is such an effort. With bad infections I lose my appetite. I sometimes get a metallic taste in my mouth. Only antibiotics clear up these symptoms.

Thanks for sharing. I don't mind talking about sputum color etc. After all, it is a big part of all our lives. Also I don't think you have your head in the sand. I think you are doing just great and that your body is marvellous in eliminating the sputum by itself. I don't think you have any infections. Like my doctor keeps telling me: 'You will know if you have an infection.'

I have mild BX in my right lower lobe,  so I normally only bring up few specks of yellow phlegm. I do a few exerceises in the morning and then again just before lunch. Sometimes I will bring up a bit of yellow phlegm or even light green, but most of the time - like you - it will just come up while I'm not even trying.

I think it's great that you are bringing up this subject of "when do we really know if it's time to take antibiotics?"

I rarely have an infection and the last time (15 months ago) I'm sure it was just a cold and my sputum sample didn't show anything bad. However, my doctor at the time still put me on abx, since she said, that the sputum samples are not that reliable. Sometimes a sample can show nothing, when there really is a bug and vice versa. Just like one of your doctors had told you about how unreliable sputum samples can be. Of course this is very frustrating to all of us, because now we don't have a reliable indicator of whether we should jump on anitbiotics or not. I guess this is our time, and I'm sure in the very near future they will perfect this, but for now we are stuck with making educated guesses along with our doctors.

I plan on following my new doctor's advice: "If you produce a lot more sputum and/or a lot darker, WAIT 3-4 days and see if it gets better before doing anyting."

I think this is sound advice and I think it could apply to you as well Tabatha.

Like most of us, we produce more on some days than others and for me the color varies from light yellow to light green. You seem to have the same thing happening to you, so unless it does not improve after 3-4 days, you might want to call your doctor.

I think it's great that you don't need to do any lung clerance exercises and if I were you I definitely wouldn't start doing any. I wish I could stop doing mine and all of my doctors have told me that I really don't need to try so hard and that it will just come out by itself as long as I drink, exercise and take care of myself. However, I feel nervous if I don't do my physio. It's like I imagine something growing and I need to make sure I get rid of everything. Eventhough 95% of the time I don't bring anything up during my physio.

So, please enjoy that you can bring it up naturally. 

A few months back I saw a respiratory therapist and she said that I might never get another excacerbation and that I should just relax about it and not try so hard to bring up so little.

Thank you so much for sharing your experiences Tabatha. I strive to be like you and because of what you have shared, I will try cutting back on my physio and let my body bring it up naturally. 

Thanks again and please ask more questions if I you have any. It helps so much to be able to talk about this and to hear from others about their experiences.

Ida

Put in Google: 'who has researched Vitamin C and written about it'.

That's the best I can do because I forgot the names of the two men in particular who my Alternative Dr. gave me to read, but these sites that come up are still good even tho the authors I was looking for don't seem to be mentioned.  Once you start reading about this subject you don't want to stop - it's very exciting and it's something all of us can do.  Unless someone has some specific medical problem where Vit. C would be counterindicated then it is only going to be good for many reasons.

That could be the answer to many of us on this site along with all our teas and other drinks and honey and mucinex etc. etc. I make it just a part of my vitamin/supplement program daily.  And because it's in powder form you can drink it thruout the day.  If you take enough of it, it will prevent infection - that has to be what does it for me as I've been on it for several years now.  Looking at the websites that come up there is going to be some informative reading for everyone even if you don't decide to try it.  It's easy to get and inexpensive - anyone who wants to know the best kind write to me on personal message or whatever they call it as I can't give the name here. 

I think it would be interesting to hear from those who decide to try it for a few weeks and see how they do and as more people have positive results from it, more would try it.  One thing it does immediately is to prevent colds - it's almost instantaneous - you feel the stuffy feeling in your nose and maybe your throat, you drink a glass of the C (2500 mg) and no kidding, that feeling is completely gone.  It's amazing.  If nothing else everyone should love that.  People who are skeptical say that it leaves our system quickly but the solution is to drink enough thruout the day so the body is saturated even tho it leaves the system. Since we need to drink lots anyway why not make it a Vit. C drink and kill two birds with one stone sort of thing?

Enough books have been written about it so I guess I'll stop here

Ida, I liked hearing what u said about your therapist saying you might not get another exacerbation.  And that tip of waiting 3-4 days to see if it things get better after a 'questionable episode' of darker phlegm. That sounds like good advice for everyone too.

Tabatha

Russ

I am an Improv Comic and takes class here in the city. We are doing a show every couple months right now, but will do more after we finish level five. I'm half way through level four at this point. By the way I woke up with a nasty viral infection the next morning. Better now.

I'm leaving this conversation to find your post on Vitamin C. Will cathch up with you over there.

Russ

Just wanted to say hi and hope that you are feeling better. 

It's great that your last illnesses have been viral and you didn't need to take Abx.

Hang in there and feel better,

Ida

I woke up with a viral infection this past Thursday morning. My temp was 103.4.I actully hallucinated. That was wild.

When I talked to my ID docotr he said it was viral and I was better the next day.

The letergy or moderately extreme fatigue in my case, if that's a thing, you mentioned is also a component for me. Just don't want to get out of bed in the morning during these periods. Though today I talked to one of my friends at church (Unitarian, not religious) and she told me that she has a similar problem with fatigue but is not sick. She is in here late 40's I  believe. So it makes me wonder if there are at least a couple of componets for me. My age and the BRX.

Best,

Russ

.

I can fully sympathise with your problems - like you I get constant chest infections (diagnosed with COPD plus amalyoids). Environment can be your worst enemy, we have a multi-fuel fire which feeds our radiators and gives us hot water - problem is the amount of dust generated by the coal.  On top of this we have 3 cats and a large dog - the dust/dander in their coats is not good for people with chest problems.

I have just purchased a salt pipe.  Bought it from Amazon for £20 (which included 2 refill boxes of salt). After giving it a try I was very impressed, it loosened and thinned the mucus in my lungs which enabled me to clear my lungs without the usual heavy coughing/choking, I was amazed at the amout of phlemg discarded and got a decent nights sleep for the first time in ages.  Of course there is always a casual walk with plenty of fresh air - helps no  end.

Hopes this helps

I haven't gotten anything done that I should be doing other than a few minor things here and there.  Anyway I saw this and wanted to respond to your mention of your ID dr. telling u to stay away from the antibiotics until your fever was  101.4 (I wonder what the significance of that is).  I'm guessing the ID drs. see so much illness and their cures are more than one antibiotic over months/years and sometimes with no results and the pts suffer bad side effects requiring doctor checkups for eyes and liver and probably other things frequently.  No wonder they say stay away from these drugs because they mess up the system.  We may not feel it,  but they destroy the good bacteria in the gut, thus the need for probiotics the whole time you take them. You're more prone to infection if the good bacteria has been destroyed.  I don't know who listens to the Sunday Housecall on TV but yesterday one of their topics was antibiotics and it was just interesting to hear these two medical doctors talking about what they do to your body.  If I were researching anything to do with health it would be antibiotics first and then I'd be looking for anything else to take rather than that.  So I'm guessing that the Infectious Disease doctors get a lot of people who have been on antibiotics for a long time and they realize that person may not be in the best condition to have to undergo treatment with some very serious drugs, should they have a very serious bacteria that just doesn't go away.  That could be why my ID dr. tried to make me afraid of them and didn't even suggest I have the drugs because I wasn't sick.  So you probably got very good advice from that doctor. BUT I thought you had a bad bacteria in your lungs - so aren't u on antibiotics with that doctor? Or do your fevers come and go?

Re your fatigue - it could very well be that people who are not seemingly fatigued take some vitamin or supplement that counters that.  I credit an awful lot to my vits/supps. and my husband noted that he felt a lot better or had more energy when I started him on a one-a-day good vitamin with natural components. Maybe it's worth changing brands if you don't already.  .

Tabatha

Like Tabatha, I'm curious how the doctor knew that your infection was viral and not bacterial and also what the temperature had to do with it?

I also try to avoid taking antibiotics. However, when my pulmonary doctor says I really should and I'm also afraid of causing more damage to my bronch area if I don't, then it's hard to not take it.

Any input?

Thanks,

Ida

Tabatha

I hope your spirts stay high. If there is anything I can do, please let me know. One thing is sometimes I get really busy and get away form our sight for awhile. I think you have seen my post about Azithromycin, so maybe that is an alternative. The cavete is that it may not work for ever. Charlie, if you noticed was having great luck with it and now is off of it becasue of cramping. 

I have begun to take Vitamin C in large doeses to see how it effects me. Tabatha loves it, and I have always taken it but never in the larger doeses. Anyway I'm giving it a wirl.

“In the World According to Garp, we are all terminal cases”. I dont know if you have read "The World According to Garp" or saw the movie, but it spoke to me on a personal level that I didn't know was there. For me It's a very funny way of seeing this world that is very mysterious.

Keep me posted of your happenings.

Best

Russ

I have started on the Vit C 5000 mg doeses and at the 2500 mg level for now as you suggested. I have been having such good results with the Azithromycin so far that I may not not notice the Vit C as noted by your expericince. I do like the idea you have of up dosing if you are going into precarious environments.

So far I am having the best run of good health that I have had in almost two yeras. So of course now that I am bragging I will most assuredly fall of into the abyss of BRX malfunction and depression. I hope that is not the case. XXX Please take a look at this article from JAMA March 2013 about a double blind study on the efficacy of Azithromycin in a 12 month study if you are interested. 

http://jama.jamanetwork.com/article.aspx?articleid=1672237 ;

 I am concerned about about bacterial immunity, and I think that is why my Pulmonary doc didnt want to give it to me. 

There is such a marked differnce in my health that it is hard to go back to my routine of monthy medicine clinic vists with antibiotics and steroids.

My ID doc thought it was not back bad risk to take, or he would not giving me the script.

About the 101.4 temp. I think that my ID doc does not consider a temp of less an 101.4 an infection that warents antibiotics. Not sure why, has something to do with the body's reaction to bacterial invasion I suspect.

As to vitamins I have a good vitamin at this time I think. It smells like new harvested wheat.

I know what you mean about all of the posts. iI get confused about what strand I am following, so just answer as I am posted to.

Hope you are getting your work done.

We are having a thunder storm with continues thundering like I have never heard in the New Orleasn area. ihas been continuous for almost 30 minutes. Is this climate change? I have been in Florida years ago and been in storms like this. Really freaky. My dog does not think this is remotely funny. Hope all is well.

Best

Russ

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Best

Russ

I didn't ask him, so I dont know this to be absolutely true, but my recovery the next day seem to point in that direction.

Thanks for you concern and inquiry.

Best

Russ

Thanks for your response. It's interesting about diagnosing whether the infection is viral or bacterial based on your temperature. I would love to learn more about this.

Glad you are doing well and that the infection was not bacterial.

I'm doing good. Sometimes my head and run away thoughts get the best of me and that is definitely something I need to work on, but physically I'm great.

Take care,

Ida