hemoptysis, etc.

[Guest guest]

Hi Joy ( & all),

It's so good to hear from you! I'm so sorry to hear that you were sick for such a long time. How did you know that you needed treatment for an infection if you didn't have/show any physical symptoms? What were you treated for?

I, too, wonder how to tell when I'm having an infection. For instance, right now I've been having almost daily blood streaks and occasional shortness of breath but otherwise feel fine. My sputum looks slightly thicker and more voluminous but I just stopped taking a year's course of erythromycin every MWF (for its anti-inflammatory effects) in November which may explain why the sputum is a little thicker.

The only really weird thing is that I recently spit up sputum that had black particles (hair-like projections/dots) in it that kinda freaked me out. Has anyone ever had this?

I've actually sought out many doctors to diagnose and treat my condition. While there's a debate as to the name of my disease, most doctors believe I have bronchiectasis of the small airways. I've spit up thick, yellow sputum every day since my severe pneumonia in 2004.

My previous pulmonologist told me not to take antibioitcs (due to increasing abx resistance) unless I had fever, chills or green sputum. Finally, I decided to try another pulmonologist because I really felt there were times when I was sick & needed antibiotics even though I didn't have fever, chills or green sputum.

I've now found a pulmonologist who does seem to care about my condition. He gave me the Prednisone & abx but it didn't seem to resolve the blood streaks. He told me to submit a sputum culture which recently grew out aspergillus niger, aspergillus fumigatus and a cousin of TB (yet to be identified). He stated that these bugs may not necessarily be causing an infection but rather are probably just colonizing my body (living in my body but not actually doing harm). He suggested that I do more sputum cultures to see what consistently grows so that we can then treat that particular organism if I'm still having symptoms. This task, plus waiting for the final results of the original sputum culture, will take some time which is why I'm still not being treated for the fungus. Joy, based on your personal experience, does this sound reasonable or similar to how your doctors have treated

you? Do you usually wait for the results of the sputum cultures before treating (this can take forever!)?

I remember that you stated that were on long-term erythromycin (like me) for its anti-inflammatory effects. Are you still on this regimen and is it working for you? I was on this on a trial basis and in hindsight it seems like it may have diminished my exacerbations. But it caused me GI problems and I wonder if it fostered the growth of fungus and these other organisms I now have by killing off the bacteria?

Practically speaking, how do you know that you have increased lung tissue damage after an untreated infection (other than from what you've read on the internet, etc.)? For example, in your personal experience, can you tell that your sputum volume, thickness and frequency increases (and is never able to get back down) after you fail to treat an infection? Or does it get harder to bring up the sputum after you fail to treat an infection? Or is it that your pulmonary function tests or CT gets worse after you fail to treat?

Have you ever been treated for a fungal infection? If so, what symptoms did you have and how did you know you were having an infection as opposed to a mere colonization?

By the way, when you hemoptysis before, what was the organism that caused it and what did you treat it with?

Thanks for enligtening me on this mysterious disease.

Hope you're doing well,

Cassie