Newly diagnosed

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I am  still finding my way with managing my Bronchiectasis, but am finding the resultant fatique very difficult.  It doesn't seem to matter if I carry out tasks and exercise as normal or rest, the fatigue persists.  I have been told that this may be the result of still having an infection and that until I am able to get a sputum sample diagnosed, which will result in the correct antibiotics for future illnesses, the fatigue will persist.  Can anyone clarify this from their own experiences?

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  • Posted

    Yes, I hate the fatigue. I do have a very persistent bug, but I've had fatigue all my life, long before I'd even gotten the bug. It's like, if I get overstressed, I need days to get back on track. And on the other days I'm just fine, sometimes even great.

    Bronchiectasis is still a semi-mysterious disease, as there seem to be many interrelated factors. Many people have a compromised or overactive immune syastem. I'm in the second group. My body is prone to autoimmune reactions, which is very exhausting for the body.

    I don't have any useful advice to give. If you have to work, try to find a job which is not sucking the life out of you.

    Oh, and the docs don't know sh!t. I'm sorry for being rude and yes, this is an overreaction, but what I want to say is that you'll always know better than the docs who will want to do everything by the book and not believe you when you tell them something is bothering you or that something is helping you. They're all about the official doctrine. My doc doesn't believe Gentamicin helps me (officially it's not an anti-pseudomonsas drug), nor that the natural supplements kill my bug almost as well as an antibiotic. She also believes I talk nonsense when I say swimming pools cause exacerbations, but I'm the patient, so I she should be listening to me.

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    • Posted

      I really must agree with you in that many doctors have lost the ability to listen. As a result they miss vital clues and cures and end up costing lives. They seem to be determination to stick to familiar paths rather than take time to search out proper solutions. I have always found that ultimately my best results come from hearing my body and trusting my instincts. In the final analysis we cannot delegate our health to anyone else. 
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  • Posted

    Hello Madeleine

    I have been prescribed various antibiotics over the years but it is only this year, three weeks ago to be exact, that I have been prescribed a different antibiotic to what I ever had before. I had a sample of my sputum tested at my request and the doctor actually phoned me to say I need this particular antibiotic for the bug I had. I have to say I have felt so much better these last two weeks, almost normal. My energy levels have improved and I just feel such great relief not coughing all the time. In fact, I haven't coughed at all for a week now, nor have I brought any phlegm up. So, be firm with your doctor and I have found that telling them you want something done or to try something different seems to make them listen to you - in my opinion.

    Good luck and hope you feel a bit better soon.

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  • Posted

    Madeleine,

    I have had lung issues for 27 years, I'm 66. I was diagnosied first as allergies, then asthma, then COPD and 3 years ago, Bronchiectasis.  

    The doctors are just now starting to correctly diagnose this illness (at least, here in the states).

    The fatigue is the worst, next to the continued coughing.  I can't plan on any activity in the future, due to not knowing how I'll feel.  With me, fatigue is due to an infection.  So I always have antibiotics on hand and see my specialist asap.

    I'm doing better by: exercising as much as I can, keeping my lungs as clear as possible, and staying away from sick peopleI had my specialist put me on a long term low dosage  antiabiotic (l got this tidbit from this website).

    If you are new to this website, welcome.  You will learn a lot about how other people handle this illness.  I have learned a lot.

    Elizabeth

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  • Posted

    You may be one of the unlucky ones whose samples show nothing, like me. Been trying for 18 months with no joy. I have though only had a couple of periods where I have been antibi free for more than 6 weeks (you really need to be that kind of free not to have the atibis supress your sample) and I have now given up delaying my treatments to reach that kind of state as I only end up with worse infections!

    I'm not that convinced that finding the right antibiotic is essential for me. I have relatively shallow infections that are killed off pretty quickly with Levafloxacin or Doxycycline broad-spectrum antibis. So I haven't pressed to have other methods of analysing my bugs, like bronchoscopy.

    I do get fatigue but it doesn't really impact my life that much - maybe a couple of days with a couple of 1-2 hour periods a day when I'm at the start of an infection. I'm not sure that any one particular bug causes fatigue - it's such a generic factor in so many respiratory illnesses, including those that are nothing to do with bronchiectasis (pneumonia in otherwise fit people for instance).

    I suggest that if you are unable to give an analysable sample that you experiment over the course of time with as many of the various generics that you can, subject of course to doctor approval (they all have different side effects and levafloxacin seems to be the most toxic - maybe that's why its the most effective for me!). Levafloxacin, Cyprofloxacin, Doxycycline, Azithromycin (I haven't tried that last yet but will soon, as I don't want to burn out on Levafloxacin). Ultimately there is also the possibility to switch to nebulised antibiotics if pills don't work for you.

    Unfortunately we are all different so it's a bit of a question of trial and error! As said so many times on here though, it's important to have a pulmonologist that is flexible. Some doctors have limited experience and pump one approach at you. If it's a pulmonolgist who susepcts you still have a long standing infection I'd be surprised if they are letting you continue to give unsuccessful samples without talking about bronchoscopy or lung washes (though either of these are not necessarily panaceas - the results can be negated by the process so one Thai pulmonolgist told me (haven't checked that opinion out in the UK yet!)

    I would be interested toknow form others whether they think they get great benefit from targeted antinbis for specific bugs. What combinations of bug and antibis have you been given. When I last saw my immunologist and posited the question - so what specific bugs might I have and what are the targeting antibis tha I would then take, she seemed a bit evasive leading me to wonder whether the whole area might be a bit of smoke and mirrors to psycholgically improve sufferers' state of mind, but then again she may have been just distracted at the time! I'm willing to be convinced otherwise by those with experience and personal evidence.

    Hope you can find a way through the right kind of treatment to help you with that fatigue. Must be difficult if it's recurring and lasting.

     

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  • Posted

    PS. Jusr realised you wrote "newly diagnosed", so it;s not taht surprising they haven't found any particular bug yet. Stick with the program - it takes the specialist a while to get the measure of you. As I mentioned we are all different and there is no one-sie-fits-all solution that heycan plug you into.
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  • Posted

    I've had bronchiectasis nearly all my life - about 67 years. The tiredness is always related to an infection either being on the way or with you. I keep antibiotics at home which usually do the trick but if not a sputum test is to be recommended. May I also suggest you clear the mucus from your lungs daily. I have set aside half an hour every day to do this since childhood. It helps a lot.
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  • Posted

    Thank you all for your replies it's appreciated.  This illness is very much a learning curve and it's a great help to hear about other people's experiences.   A recurring theme is that self help is very much the key in any illness especially one such as this which doesn't seem to be very common compared to others. I am nebulizing and have my physio exercises which I do, and the main way forward for me now is to get a sputum sample analysed.  Once again thank you and I will keep in touch through this blog and in the future hopefully I can share a few coping strategies etc. with you all. May I wish you all well.

    Madeleine

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