<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Melissa75</b></i>
I am sorry to hear of all your problems. I would go for any testing they offer you and do not be content with sweat testing alone for a CF neg diagnosis. Ultimately you need a full gene sequencing (see Ambry genetics) and you have to have enough of the right issues to have insurance pay for that.
What else do your CT scans show? When I am healthy, mine show bronchiectasis, which is the damage that happens from infections to people with and without CF. It is linked to immune deficiencies and cilia movement deficiencies too. Also, rheumatoid arthritis.
I once happened to have a CT scan when I was sick...aka having a "routine" exacerbation and the radiologist wrote bronchiectasis all over and/or BOOP. Because antibiotics made me better, pulmo decided infection rather than BOOP (which is "fixed" by steriods, not abs). Nonetheless, I continued to relapse and culture nothing but routine bacteria. Maybe hypersensitivity pneumonitis to a bacteria rather than the typical farm or bird stuff? Who knows!
Bottom line is that with bronchiectasis I have to do parts of the CF regimen to stay "well." Hence my reason for being here
Do you have mucus problems? Then you need to be doing physical therapy to get it out.
BTW, my timing was coughing since birth, occasional pneumonias; at 29 yrs, between kid 2 & 3 I started with the chronic sick.
_________
Melissa, 34, bronchiectasis (no CF)</end quote></div>
Thanks Melissa!
The CT scans seem to be "normal" and no one has told me different. I do have mucus but I'm not sure if it would be considered a problem. I'm just tired of coughing. with or without the mucus.
I am sorry to hear of all your problems. I would go for any testing they offer you and do not be content with sweat testing alone for a CF neg diagnosis. Ultimately you need a full gene sequencing (see Ambry genetics) and you have to have enough of the right issues to have insurance pay for that.
What else do your CT scans show? When I am healthy, mine show bronchiectasis, which is the damage that happens from infections to people with and without CF. It is linked to immune deficiencies and cilia movement deficiencies too. Also, rheumatoid arthritis.
I once happened to have a CT scan when I was sick...aka having a "routine" exacerbation and the radiologist wrote bronchiectasis all over and/or BOOP. Because antibiotics made me better, pulmo decided infection rather than BOOP (which is "fixed" by steriods, not abs). Nonetheless, I continued to relapse and culture nothing but routine bacteria. Maybe hypersensitivity pneumonitis to a bacteria rather than the typical farm or bird stuff? Who knows!
Bottom line is that with bronchiectasis I have to do parts of the CF regimen to stay "well." Hence my reason for being here
Do you have mucus problems? Then you need to be doing physical therapy to get it out.
BTW, my timing was coughing since birth, occasional pneumonias; at 29 yrs, between kid 2 & 3 I started with the chronic sick.
_________
Melissa, 34, bronchiectasis (no CF)</end quote></div>
Thanks Melissa!
The CT scans seem to be "normal" and no one has told me different. I do have mucus but I'm not sure if it would be considered a problem. I'm just tired of coughing. with or without the mucus.