Want better control of my infections...welcome any and all.

Posted , 7 users are following.

Hi everyone, I'm writing to get feedback about how your BRX has progressed. For the first seven years I literaly had no problems except for occasional respariotory infections. About 18 months ago I began to have fatigue and it has moderated some since so that I am about back 75% normal. Less fatigue is a welcome guest.

In the last year I have begun to have exacerbation of the BRX with comes with gobbs of sputum priduction and not feeling well. My temperature in most of these cases has is low grade for me at 99.3. My recent event this past week had me feeling a bit more sick with my temp. at 100.6.

Usually, as I said, there is a round of antibiotics and steroids though I am trying to stay away from the two drugs so that I dont't develope all the consequences of overuse. The most recent event is being treated with Avelox.

Recntly I was diganosed with an ACHROMOBACTER lung infection and saw a great ID MD. He said that  trying to eradicate the infection would mean hospital stay and perhaps home IV antibiotics. He said that alot of us have infections like these and as long as they do not make us sick it is better to leave them alone. He said if I do get sick that he would admit me directly and begin treatment. For this most recent event he said if I didnt respond quickly to the Avelox that he would admit me. My fever was gone in12 hours.

After saying all of this (I hope at least one or two of you are still with me), I want to begin to pursue a more agressive line of attack that might end with Stem Cell inplant. I am willing to do what ever it takes.I think maybe a lot of you are dealing well enough with your BRX, so I would like to hear from you about how you managing: Diet, exercise, rest, sputum evacuation, medications, seeing your doctor on a regular basis, or what ever else that I might use to stop the large number of infections I am getting. I have had thirteen illness visits in the last year for antibiotics and or steroids.

Thanks for any and all of your thoughts and advise in advance.

Russ

Ok

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  • Posted

    Hi, Russ,

    I went to ID MD when I was first dxd with a non-tuberculosis mycobacteria (NTM) called Gordonae.  She told me that the drugs could make me very sick and she didn't recommend taking the 3 antibiotics that w/b necessary.  Of course I'm there in front of her and not looking sick and not being sick so I have to guess that's why she discouraged me.

    Then I went to a Pulmonary doctor at one of the big teaching hospitals who was an expert (over 40 miles away : ) who had worked for National Jewish Health and he specialized in NTM infections.  He also did not recommend anything and he checked my sputum on each visit and had me send him sputum to check and each time it was clear. The strain of NTM I had could have been introduced by the lab and therefore not actually anything to worry about so we just kept doing the sputum tests and I never took an antibiotic.

    Then some months or a year possibly later a sputum test came back with Mycobacteria avium complex which is something to be concerned about and be treated for, but again I wasn't sick and as I said on a previous discussion, I went to a natural doctor and they put me on massive doses of Vitamin C for 10 weeks, one appt. per wk.  They tested my sputum at the end of that and it was clear.  I would have done anything to avoid antibiotics.  I'm glad I did that.  Medicare covered it at the time which it does not now but if I got a bad infection now I would go the Vitamin C route and after the IVs are over they put you on a regimen of oral Vit. C and you can drink the powder form so it makes it easier than having to swallow pills or capsules.   It's been years and I haven't had an infection or a fever or an episode of being sick other than pneumonia which I probably got from a germ picked up somewhere.  AND I have to say by this time I had tired of the Vit C routine every day and had stopped taking it and that left me open to the new infection.

    It was Xmas 2014 when I had that pneumonia that kept me sick for 3 wks at home, not in hospital, and I coughed every day and every day since and I can't get my breath as easily and I wheeze more (I presume that is called an exacerbation of my COPD) - I have clear sputum most of the time, sometimes pale green and occasionally a large clump of the gray green but it's not like all day and it could be something that is left in a bronchiectasis pocket that was hard to get out, I don't know.   I do know, however, that when my previous Pulm. Dr. was still around he'd put me on Cipro quite a few times (years ago) and each time what I thought was infection with lots of green mucous, always came back BUT since having the Vit. C IVs I have not had an infection at all that I know of.  No fever, no feeling sick and no serious bouts of green mucous.

    As far as routine supplements I take lots of things.  I don't know if we can mention them here or not or maybe it's just the brand we can't mention but I take a good multivitamin,

    NAC; Co-Q-10, N-Acetyl-L-Carnitine, Alpha Lipoic Acid;  Vitamin D3; 1000 mg Calcium with other minerals, and have also added lately Bromelain which helps with inflammation and Tumeric and 5000 mg a day of powdered Vit. C and also powdered MSM which you can read about - I think it helps the Vit. C or works better with it or something.  But I take it everyday in water.  2 big glasses a day so it doesn't taste strong.  And so far I am guaranteed not to get a cold or get sick.   Maybe it's because I try to eat lots of fruit and veggies also and no processed food if we can help it and drink lots of water and green tea and honey I've read is goods so I'm trying that also.  And now after reading everything on this site I'll be adding some things like nebulizing with saline and other suggestions that work for other people.  (A natural doctor will tell u to stay away from antibiotics because they are not natural and not good for the body - I had a friend who had e-coli who kept getting infection after infection after weeks on antiobiotics and in hospital with IVs too and she just never could get rid of it; it always came back so I told myself there had to be a better healthier way).

    My Pulm Dr. expert said what your doctor told u about not having treatment unless it made u sick.  So if it were me and I had fever and not feeling well as u describe and gobs of mucous and green especially, I'd try the Vitamin C IV first.  It can only do u good - it won't hurt you - and could get rid of the bad bacteria and it would be better than going on antibiotics and stay in hospital.  Also for bad infections like it sounds like you are talking about, have you heard of National Jewish Health - I hope I can refer to that here - they are lung specialists in Denver, CO and they have a help line that you can call and talk to a nurse.  That is something I would do myself - in fact I joined a support group for NTMs and that's where I first heard of NJH.  They are online and you can read all about them and people can go out there to be evaluated and treated.  I think I'd do that before going for the stem cells as that is not covered by insurance and the other is.

    I read about the stem cell research and a company doing that in Tampa and I even called about it but the girl didn't call me back.  I think when I expressed shock at the price she thought it might be a waste of time;  but Vit. C treatments were far less expensive and worth a try first.  $150 per week or per treatment and I had 10 of them and it would depend on where u had them.  It would be worth making an appt. with a homeopathic or natural doctor to find out what they suggest.  And if YOU are still reading here, I'll just say that I hope something in here helps you.   

    • Posted

      Tabatha, thank you, thank you, thank you.You're have provided a great amount of the imformation and much needed experience that I need right now. And you are  a good writer. Im getting this late and need to get to bed, so will answer you in full tomorrow or Friday.

      Thanks a billion,

      Russ

    • Posted

      Tabatha, now that I have had some time to read your email over several times, I am encouraged by the path you have taken and the results that you are now experiencing and sharing with me. What you have learned about he antibiotics use over time is what was coming into focus just in the last couple of month. for me.So thanks for setteling that debate for me. Patients know best when comes to the actually living with the decidely fun illnes .It is so weird, I was a RN for thiry years and had never had any patients with BRX; and for the first seven years after I was diagnosed had no problems with chronic infections or fatigue..Apparently the damage was contnuing as I lived in a dream world. 

      I making an appointment with with a Naturopath this week to look at Vit C treatment like you had, vitamin therapy as well as dietary changes. 

      I learned about the NJH in Denver last year from a doctor I saw. I have thought about going out to Denver before, but I was attempting to get better here.

      I tried  several times on Friday, to call the nurse ay NJH, but was on hold so long ,I decided next week I will have better luck. Maybe it was Good Friday?. 

      If you will, tell me a bit more about your experience with the doctor at NJH. How did the experince help get better do you think? 

      Also, do you have fatigue? From what you said, it seems that you are actually fairly to very healthy now.

      All my best,

      Russ

       

    • Posted

      Hi again Russell,

      I've spent most of the day on my response give or take (including some research).  I'm going to reply in two parts so it's not so long. 

      Re your 7 yrs with no symptoms: I don't know when mine started so wasn't aware damage was being done either.  They said I could have had it for years. We are probably all different as far as when it started and if there were symptoms.  I had bronchitis a lot and coughing as an adult, so it could have been made worse with that and then a CT scan picked up the BX finally and that was after I'd been dxd with Asthma.  I guess u were lucky you had no symptoms for 7 yrs.  The Lung Assn. website have a good diagram of what BX looks like and I suspect it takes years to develop the thickness of the airway wall.  Until I saw that diagram I wasn't completely aware of what it looked like.

      Re your appt with Naturopath and diet etc  :   My Vit. C treatment was less than an hour.  They do a blood test first to see how much you can have before your first appt.   I didn't like having the IV inserted but anxious for the treatment each time.  And I drove a long way to get it.

      Re:  my experience with the specialist in infectious disease and bronchiectasis: The reason for going to him was to find out if the Mycobacteria I had had was serious enough to keep doing samples or not and as it turned out he said no because likely it was caused by a lab contaminant. if you feel sick and have the symptoms of 'illness from an infectious disease' then go to the Dr.; and I gathered that if you cough up as much as a cup of sputum every day, it meant something; and he also said to eat lots of protein.  And each visit he'd ask me if I had any of the symptoms of inf. dis. and I guess I didn't. He also favored sputum samples over CT scans, as the latter are so changeable, something can show up one day and not the next time;  sputum is what's important; (I have also heard from another doctor that what sputum you bring up might not have come from deep in your lungs and you might miss something).  Oh, and he tested my immunoglobulins and two were a bit low but it wasn't enough to do anything.  I stopped seeing him as I never got sick.

      And I've not been to NJH.  It was recommended to me by my support group for infectious diseases.  I have a description of their visit there given to me by one of the support group but it's two pages long.  If we can exchange addresses somehow I can send to you.  But basically, it described how they treat you with such professionalism and knowledge and you have doctors assigned to you expert in different areas and they help u with diet, exercise, medication, diagnosis etc.   they evaluate and test and teach you -it's very comprehensive and they try to uncover any underlying contributing factors and since you have or had an inf. disease that could be useful for you.  Whether or not the appts for BX are equally as intensive I wouldn't know.  Hopefully you have been able to reach the Nurse line.  But it's all on the NJH website I would think.   I've looked online and there are surgeries for BX - it might help to look that up.   I do lots of research on anything that comes up -  I like the Mayo site or one of the big hospitals, just for an example.

        -- to be continued ---

    • Posted

      Tabatha hi, good to hear from you. Thanks for giving me a more detailed picture of what you have done so far and how the process has changed your health for the better.

      I'm going wait to get your second post to write more. Long day but am having some kind of break thorugh. Feeling better, able to get out of bed and have my normal energy. Only thing is I don't know why. More on that later.

      One last thing about the period, which you mentioned for yourself, that I had BRX and was not sick: I was still having bronchitis and also pneumonias along with a cough. like you just remtioted, but it was my norm, so I didn't think anything about.

      More later.

      Russ

       

      Emis Moderator comment: I have removed the full mailing address - it is not a good idea posting these details in open forums like this. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Posted

      Hi, Russ,

      I'll pop that in the mail to you tomorrow.

      Have part 2 coming also.  Had a hard time getting the site up Wed. in early morning hours will try again now (Thurs. early morning).

      Tabatha

    • Posted

      Part 2     

      Russell,   I got this bit of info off this site:  "The severity of bronchiectasis used to be classified according to the volume of sputum produced but this has now largely been superseded by using the radiological appearance on CT scan".  I guess that counters what that doctor told me.

      As far as what helps me:  I add alkaline drops (Health Food store) to ev. glass of water I drink during the day, to add minerals, and somebody on this site also mentioned Cell Food (Health Food store).  I use that too but not at the same time.  I would just use the Cell Food only but I happen to have a bottle of the minerals so I'm using that up.  I nebulize right before I get into bed (I sit in a chair to do that because I found as soon as I sit on the edge of the bed I start raucous coughing - why is that, I wonder, and then I do my inhalers but I'm inhaling with albuterol (for asthma and COPD) where I think others on this site neb with antibiotics or saline (which I'm also trying) and to prevent the cough when I lie down I drink hot green tea or raspberry tea (anything hot) or lemon water each now w/a bit of honey; 600 mg Mucinex and sometimes Potassium to help sleep.  It's soothing and stops my bronchospasms which seem to happen when I lie down.  Then I have 3 pillows and remove one right before I fall asleep on my side so I'm really on two and the third one is under my upper arm  so the weight of my arm is on the pillow and not on my lung!!!  It prevents coughing from the pressure on the lung.  I don't want to cough at night as it's hard to stop.

      I have a difficult time just knowing what the BX causes and what the COPD causes as they both have mucous but not necessarily all the other effects. If I happen to be cloggy the next day I'll maybe nebulize again.  I take my inhalers every day on time - if I didn't the mucous would be far worse and I've always assumed the mucous was from asthma or chronic bronchitis (inflammation of the airway) but now I'm thinking much of it is from the BX.  I wonder why they don't prescribe a steroid inhaler for BX???? Maybe it's not inflammation?

      Some days, Russell, I don't drink special drinks and don't have to nebulize and I am almost about as normal feeling as I can be but then a day or two later I'm back to coughing and taking extra care again.   It is quite scary to get so 'cloggy' as I call it, when I'm constantly coughing stuff.  In fact I can wake up in the morning quite depressed about the whole situation but once I'm up I'm fine.  Doesn't pay to lay there and think too hard.   I have not had a fever in years, except pneumonia and no chills or any other symptom except wheezing and tightness and that's probably the asthma.  So I don't take antibiotics at all if I feel cloggy with green stuff - the Vit C and Cell Food or alkaline drops or lemon water, whatever, somehow it clears up  and you have to drink a lot of water as it helps the mucous to thin out and come up better - I'll use cough drops too like zinc if I have a bit of a sore throat from raucous coughing.  Oh, also, don't know if I mentioned it elsewhere but I do mix the Vit. C power with powdered MSM only once a day tho for that as the MSM says only 1/2 tspn/day.  That is supposed to somehow benefit the Vit. C.  I like it because it counters the taste of the Vit C. and makes the drink more tolerable and from what I read I'm gaining a benefit.  (So much to read, Russell : )  There is a specific brand which is better than others but I don't think I can mention that.  I'll send it to you with those notes.  And one more thing - THINK HEALTHY - tell yourself you are healthy and that 'your new regimen' will keep you infection free and eat properly with no junk food and lots of fruits and veggies at every meal.  Read one of Dr. Joel Fuhrman's books on good diet.  If nothing else it will train you on how to think of the right way to eat.  I think that keeps you healthy.  He explains how everything you need is in fruits and veggies, seeds and nuts and we actually did it for several weeks and felt better but found it hard to maintain forever but with our new knowledge we do something every day from the book even if it's just more salads or bigger salads as a total meal. And every day I eat some nuts and some seeds.  They fill you up and contain fats and protein.

      You asked if I have fatigue --  Fatigue is one of the symptoms of your bacterial infection most likely as it is for the NTMs and others.  I don't have it because I'm not sick with a bacteria that I might have.   If you have many of the other symptoms then doesn't that indicate your bacteria is 'active' - is that the word?  Not just colonizing?  It's making you sick and that's when u need the antiobiotics which I understand you are on now I think.  So after you get that cleared up your 'new treatment plan' will surely go into effect : )

      whatever that may be.

      I go to bed really late so sleep late but I do get 6 - 8 hrs but still feel I could have slept longer. Something wakes me up and sometimes I can't go back to sleep so I'm up for the day.  I need to go to bed earlier and get 9 hrs and that w/b better for me - anyway I'm not fatigued I don't think.  Only occasionally have I collapsed on the couch and fallen asleep in the daytime but chances are that's because I got up too early.  I can be on the computer all day and not be tired at all.  Recently when I had a sore throat and horrible cough I did collapse on the couch and slept and the day after I think I felt tired but obviously I had something going on and THAT is when I up the Vitamin C and drink maybe 2 or 3 glasses of it during 24 hrs. 

      I hope some of this is helpful.  Good luck with your natural doctor appt. Let us know what u find out.  The night I wrote all this was a good night for me.  Hadn't coughed all day.  I wanted to send it then but got busy on something else then last night I tried to send it but couldn't get the site to come up - that was about 1 or 2 in the morning.  Sorry for delay.

      Tabatha

       

    • Posted

      Hiya Tabatha,

      Wow! been keeping up with you and Russ and Russ and I have been on this AZITHROMYCIN,I started 2 weeks ago I can't belive how it has stopped the coughing and the mucus in such a short time.

      I had mentioned in earlier relplies that for cough I do Ginger and water really works for the cough, 2 to 3 cups a days just grate the ginger in a bowl add boiling water let  sit until cool and strain,I make about 4-5 bottles from each batch.

      Hope that helps will keep you posted on the anti meds.If they keep working the way they have been will let you all know.

      Regards,

      Charlie

       

    • Posted

      I had the same experience as you with azithromycin....and a few years on I'm still taking it. Have had an occasional infection when I've been unable to avoid catching a cold but otherwise still ok. When I get an infection I take a course of another antibiotic & that seems to do the trick. 

      Jean 

    • Posted

      Thanks Jean great to know as I was a little worried as what to do because of the Mucas stopping I'm still doing the Neb with Albuterol anyway 3 times a day as prevention, and just have a litte cough but really feel good,I wish that this would work for everyone,hopr it's not the Calm before the Storm.

      Regards,

      Charlie

    • Posted

      The only time I have mucus to bring up is if I get an infection. Hopefully you will be the same. I do stick to a very healthy diet & get plenty of excercise which I think helps a lot. Good luck & hope that you continue to feel good.

      Jean

    • Posted

      Jean, that is interesting. My Pulmo MD woulr not put me on Azithro but my ID MD has and it may be helping. Only on for a week. How long did it take you to feel better?

      Russ

    • Posted

      Hi, Charlie,

      That comes in the Z-pack doesn't it?  I had that for the pneumonia.  I used to take Cipro but I always got the green stuff back again and finally we gave up with the antibiotic and I guess I realized it doesn't mean u have infection just becase it's green.  If I was REALLY sick feeling and my lungs felt bad and I had fever too then sure I'd be OK with an antibiotic but I guess since I have no symptoms really I find it all works well with the other remedies we use.  

      I AM going to try your ginger - my husband makes a juice ev. morning of 1 ea. apple, orange, lemon and pear OR 1/4 pineapple, some ginger, 2 sticks celery and Kale.  Tastes real good and we blend the Kale as it won't juice well so I have that ev morning.  The Kale makes a bit of fiber so it's good all around but I cough afterwards and believe it's irritation from the 'bits' of Kale but it's good for calcium so I want the bits.  But now we're reducing the 'handful' of kale to 1/2 a handful of Kale. 

      Anyway I love the ginger flavor and I'm sure making your ginger tea will be good. 

      So how much ginger are u grating?

      And do u peel it first?

      How big are the bottles you're using??  do u mean the plastic water bottles 12 oz I think??  To get 4-5 bottles you must have lots of water so the amount of ginger must be what size pieces??

      Thanks -

    • Posted

      Russell,  got the envelope addressed today. Got that far!!

      Went to the Immunologist yesterday and he's doing bloodwork for the Immunoglobulins.

      Did allergy testing on me and found horrendous red marks for OAK TREES!! and several moulds.  Where I live is surrounded by oak trees  so they want to give me shots which is OK except a long way to drive several times a week.  He suspects allergic asthma & can't understand why I have COPD when I quit smoking so early but I suspect it's not just smoking that causes chronic bronchitis.  That's about it, not much to report.  I did like him and he made sure I knew he was a real Immunologist and not a doctor practicing that who wasn't board certified.  I told him I got the idea to come to him from a forum on BX and he was interested and wanted to know what we all talked about regardng immunology.  My mind went blank and that was probably OK.

      He added Singulair for me to prevent allergies I think. and said Flonase was good for nasal/sinus congestion and Sudafed causes high BP so Mucinex DM with Sudafed is not good. I used to take that at night to help me breathe. And to do any good Mucinex s/b 1200 mg 2 x per day and even then he's thinking just drinking lots of water does a better job anyway. So save the money.  The allergy shots should help me a lot they think and will desensitize me so that I won't be finding every single place I go has a smell, like his office (ha ha) and every office I go into.  Literally everything smells to me and starts me gagging and coughing so as the shots take affect in a few weeks I should notice that diminishes.  Insurance apparently covers it all I'm told or else I'd probably opt for an antihistamine.  But I'd tried Allegra for a whole bottle and noticed no differentce.  If anyone has similar experience or allergy shots I'd be interested in hearing results.

      Tabatha

    • Posted

      Tabatha, thanks for such a imaginative and through discription of your medical issues, medications, vitamins and suppliments, exercise, sleeping routines, diet and the ever present coughing of all kinds of mucus. (Coughing was what put me in a doctor's office to begin with and is a still my constant companion. I'm so lucky that everyone that knows me, takes it for granted..) And the final thing, is how you, for the most part deal with all of this psychologically.  Where to start?

      You, like all of our freinds on this site for the Respiratorally Bacterially and Mucously Challenged are coming up with real solutions to these problems. It's intertesting how every one seems to have something that works for them, but also that there are more simalarities in our ways of finding a good place of health. Yeah for us and what we all share on this site. 

      The following is from your letter above. And I quote.

      "SOME DAYS, RUSSELL, I DON'T DRINK SPECIAL DRINKS AND DON'T NEBULIZE AND I AM ALMOST ABOUT AS NORMAL FEELING AS I CAN BE BUT THEN A DAY OR TWO LATER I'M BACK TO COUGHING AND TAKING EXTRA CARE AGAIN... I'll stop the quote here. 

      First of all sorry it's scary for you, but also here Tabatha I wonder if stopping your nebulization and drinks is corrolated to you becoming congested again. It seems like a lot of us on the site neb everday and do it all everyday. i know the feeling of wanting to be down with all of this that comes up on my good days. I don't know if tjhis makes any since, but it somenthing I noticed. Please disregard if it doen't fit for you.

      More fortunately for me I dont think that I am as congested as you are, I hope you get better.

      As I said in my last letter, I have found some solid ground here. The only reason that I see that is different is the I started the Azithromycin 10 days ago. You are right about the fatigue being a result of infection, so perhaps this is what has happened. I'll be on it for 6 months and then we see. 

      I will write more as I recieve your mail and or to report anything new that I have come across. I'll see the Nature Doctor next week.

      I keep trying to use the mouse "line out" function witch throws me to the bottom of the page. I had stopped it for awhile, but have picked up the habit agian. Must concentrate.

      Two quotes from one of my favorite writers of my youth:

      "I urge you to please notice when you are happy, and exclaim or murmur or think at some point, “If this isn’t nice, I don’t know what is."

      And the other:

      "Human beings will be happier - not when they cure cancer or get to Mars or eliminate racial prejudice or flush Lake Erie but when they find ways to inhabit primitive communities again. That's my utopia." 

      KURT VONNEGUT

      Best for now,

      Russ

    • Posted

      Before I forget, when I told my current Pulm. Dr. that I coughed every day and it was really a horrible cough he looked at me and just said 'that's part of it'.  He saw no need to ask if I was nebulizing or anything.  Nothing.  I couldn't believe it because I'd tried to impart to him how really bad was my cough.    I don't cough much when I'm there.

      Re the nebulizing,  you're absolutely right, Russ, I'm a little lazy I think because of a time issue.  I know we all have 24 hrs and I'm trying to cram all kinds of things into that timeframe and the vitamins, and supplements several times a day, some with food and others without, inhalers twice a day, exercise too (like walking) if I even take time for that, it  is never ending and I suppose it is for all of you;  I seem to just put favorite projects ahead of some things. Hearing you say you nebulize whether or not you feel the need makes me realize I should be doing that.  I think probably the previous doctor I had should have asked me if I nebulized but he never did.  He'd just say ''how're you doing' and I'd say 'fine' and he'd listen to my lungs etc. and we'd talk about the charts and he'd say this is asthma and this is emphysema and this drug is for that and so on. I would have asked a question that prompted that.  He'd ask what drugs I was taking and check his list but never mentioned nebulizing AND HE NEVER MENTIONED SPIROMETRY (which yesterday I learned could improve my lungs!!)

      Many years ago I'd had some infection and he'd said to nebulize 4 times a day; but once I got better I didn't nebulize again.  Didn't ever think I needed to because I was doing just great on my Symbicort.  And he never mentioned it.  And when I started with the natural Dr. and his supplement ideas and Vit. C IV I guess it built my immune system so well I wasn't getting sick at all.  But it was that darned pneumonia last Xmas after I'd stupidly stopped taking the Vit C, and my doctor had to close his practice and left town to work in a hospital somewhere else.  It was very sad as we all liked him very much.  Anyway I got this new Pulm. Dr. and the care has been just not there and they couldn't even put me in to see him when I was so sick and my husband explained that to them and they said to just keep my Feb. appt. that was on the books. We couldn't believe it!  Still can't believe that.

      I was very sick and that was their response so I went to a walk-in clinic and got treated but no mention was made of anything other than antibiotics and I started nebulizing on my own.  Also I noticed I could not get enough breath to be able to suck in on my spacer with the Symbicort.  I knew I'd worsened a lot. So I stuck to the nebulizing for a week or two and used Spiriva which helped and finally I got back enough breath to suck the stuff thru the spacer but I wish it was about 1" shorter because I'm really out of breath at the end of that 1 puff.  BUT now after talking to you, Russell, and you pointing out that it's necessary to do it every day regardless of how I feel, thank you for that, I will make a point of nebbing every night right before I lift weights on my feet lying on the bed (forgot to tell u that - that was from PT to strenghthen my lungs (?) - I'd asked for Pulm Rehab but all I got was mild exercise lying down and weights and treadmill for 6 days : ( Anyway it's made my hips or legs stronger doing it at home. My legs feel stronger when I walk too. (Russ: I do the hot drink thing first before laying on the bed then slowly I lie down and do the leg lifts then I'm good and do the pillow thing next.  And that's every night.  I do the same exercises again next morning.  I found it stopped agonizing leg cramps I used to get too. A bonus.  Not one cramp since doing that with the weights.  Off the subject again I'm afraid.  Sorry.

      SO, Russell, I will go right now and nebulize my Albuterol and I have to say I had a great day again today with no coughing or anything and I'm wondering if the allergy stuff they put on my back yesterday had some sort of effect.  It lit me up bright red on many of the 74 areas they tested.  He even asked me if I'd scratched my back or rubbed it and I said no.  He said 'YOU are REALLY allergic'.  Weird that today I have no symptoms.   And thanks to Russell I may not have any tomorrow : )  I'll let u know and I started my Singulair tonight too.

      Tabatha

      Tabatha

    • Posted

      Hiya Tabatha,

      As for the ginger, I live in the West Indies so I get it from our local farmers,we do Bush Medicine here.

      so I would say 1 lb and I just wash it and rough grate it, put in a big bowl, boil a pot of tea water pour in water let sit until cool,strain and then I take the remaining ginger put that in a pot with more water and bring that to a boil let cool strain and then mix the two together and bottle it,I refrigeate but always keep 1 bottle out at room temp.

      Really hope it will help your cough.

    • Posted

      Hi T,abatha, yeah I  think I see where you are dgoing with this. Yes, doctors don't often tell you all of the behaviors that will keep you as well as possible. I like NP's and PA's better. They seem to have a compassion and maybe the time to spend making sure their patient sare doing all the right things. Although, my last visit with my Pulmo Doc was very infomative. On the other hand I dont remember him telling me about Nebulizing and Chest Percission, etc. As I starting feeling worse I began to press the issue all around. Also my Infectious dsiease MD is really on the ball and very personable..He put me on Azithromyicn when my Pulmo Doc would not. Now I feel better and it may be that I said that before also. 

      The spirometry is a help for my ashtma, though i have not so far had a drop below my target range of 500 to 650.  Good luck with the spirometry. It is a spot on way of knowing how well your lungs are being able to take in oxygen and get it to the your cells.

      Due to the the treatment in December with pneumonia, that you might find better care for yourself. Keep trying I say, that's what I did.

      You have several issues going at once and the better you are in contact with a doctor you trust, the better you will be. I'm glad you will continue to ue your nebbing and drinks on all days. Let me know if it helps.

      Besy

      Russ

       

    • Posted

      I think it was only a matter of a couple of weeks.....its some years ago now so it's difficult to remember exactly. But it certainly made such a difference, occasionally I forget that I've even got bronchiectasis!! That is until I come in contact with a cold which I try to avoid as a much as possible. Then I do as much as I can to boost my immune system. Sometimes it works & sometimes I succumb which is when I resort to a course of another antibiotic.

      Jean

    • Posted

      Jean, sounds like you are fairly well controlled?

      Russ

       

    • Posted

      Charlie, what is Bush Nedicine? And is it better or do you use it in conjunction with antibiotis etc.

      Russ

    • Posted

      Hi Charlie,

      OK u are starting with a lot more than I would be so I'll take my 3 little chunks and scrape and wash and grate and boil water for the teapot and just see how it tastes and go from there.  If it works for me then I'm good to go and can make bigger batches.   I'm starting it  now!! Thank you, Charlie.

      I met a Bush Doctor once in Abacos - she had a little 'farm' with animals and she made bush tea from herbs or something growing there.  It was supposed to heal and be good for arthritis and other things.  She was a very interesting lady.

    • Posted

      Good Luck ,also add honey to it,after that look into Organic Apple Cider Vineger 2 glasses ( 2 tbs in 8oz water ) a day will do you good just add to all the other stuff you are doing,before you know it you will be so healthy.

      Regards,

      charlie

    • Posted

      I didn't know u had asthma too, Russell.

      I'm still in the process of waiting for the ginger tea to cool so as soon as I drink that I'm going to do the Spirometer and hopefully I won't be at  the bottom : )

       

    • Posted

      Bush Medicine is from our bushes and tree bark I use along with everything else there are anumber of different ones.

      One I do is MORINGA Dried leaves you can look it up and see the use's too long a list to write.

    • Posted

      Charlie, as we speak I'm drinking -- first of all what color is it when you drink yours?  this is a pale golden coloror and it's strong and sort of burns the throat a bit so I added more water.  Is the ginger supposed to cut the mucous at the back dof the throat or does it do something systemically that is beneficial?  Salt water gargle would do the same if it's just to cut the mucous so I suspect there is somehow more benefit with the ginger? I will add the honey and maybe it won't burn or do I have it way too strong?
    • Posted

      No the color is right and when it sits the actual Ginger will settle to the bottom white color so you need to shake before you pour it.

      Thia has nothing to do with the Mucus it is for your coughing and your throat as in past discussion you talked about your bad cough,this will help along with other things Ginger is good for.

      Remember there is no quick fix,you need to do this every day to start to help the cough.

      You can add water if you feel it is too strong your choice, it will also make you sweat that is good, just take it slow with the honey you will see a change with your cough.

      Stay Well,

      Charlie

       

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