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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alouette madeleine89263
Posted
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.
pomodoros alouette
Posted
dancing_queen madeleine89263
Posted
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.
elizabeth49611 madeleine89263
Posted
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
steve62514 madeleine89263
Posted
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.
steve62514 madeleine89263
Posted
Operalyn madeleine89263
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madeleine89263
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Madeleine