Sorry forgot to reply to the two year confusion: I had been on the meds for two years when I was taken off after all those negatives. Bummer when the one given at that visit tested positive.
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I had an appointment with my doctor and at that time, he took me off the meds because I had tested negative five times in a row. On that very day, I supplied another sputum sample and weeks later that came back positive. So it really was positive when I was still on the meds because it was the sample given on the appointment date when I was to go off the drugs. It appears that I sometimes test positive and hopefully sometimes negative. My local doctor in concert with National Jewish will not only monitor my sputum but will also consider colony count, any CTs, and symptoms in deciding whether or not I need to restart meds or begin arikayce with other meds. What maintenance drugs are you on to fight any possible future infections? I know that just being on azithromycin alone appears to be controversial. Looking forward to hearing what you are taking for maintenance.
When I had my last appointment with the doctor, he took me off drugs because I had had 5 negatives in a row and it had been two years. At that appointment, I gave a sputum sample and lo and behold, it came back positive. I have not had a bronchoscopy. It appears that I intermittently test positive. My local doctor and Dr. Huitt at National Jewish will go by symptoms, CT scans, and colony count (magic number may be 50) in determining when and if (probably just when) I should return to the meds. Hoping and praying if it must be that it will be in future. Who knows! Have an appointment at National Jewish in November. Just wondering if there are others reading this blog who intermittently test positive after completing the drug treatment. Would like to hear from them.
Right after I stopped taking the drugs (was on for 2 years having had 5 negative sputum in a row), I tested positive. I now seem to test intermittently positive. I was wondering if there are others who test sometimes positive and sometimes negative AFTER finishing treatment. For now not taking any meds as doctor is concerned with symptoms and not exclusively with sputum results. Would like to hear from others who are testing sometimes positive and sometimes negative AFTER finishing treatment. So comforting to know that we are not on this journey alone. Always appreciate the feedback.
Thank you for responding. Much appreciated. I was referring to what appears to be the first fast look at a sputum sample that I sent to National Jewish. I can't believe that they would send this out on their portal without a phone call explaining to any patient what the preliminary results mean. They have never had sputum sample results on the portal before … maybe they have changed their minds on releasing it as they release other medical test information. ??? So true, this is a frustrating infection any way you look at it. Wishing everyone better health.
Do some of you intermittently test positive? Had a couple of negative and now testing positive. This is after I stopped the meds after taking them for two years. Just got back preliminary early results from a portal that indicate that something is brewing. Hate getting messages late on Friday night when there is no one around to question.
Last time I was at National Jewish, they gave me a new type of nebulizer called an AeroEclipse; it is a reusable breath actuated nebulizer. Supposedly medication is delivered on inspiration only and I guess it might deliver more medication into lungs and or protect the environment and or just make us NUTS! As if that weren't enough, the aerobika can now be used with a manometer. The manometer is a green, yellow, and red attachment that you put on aerobika and it is used to provide visual feedback when you exhale (so you know that you are exhaling correctly by staying in a green zone)!! Anyway, I couldn't get the darn thing to work … so am returning to the good ole' Pari nebulizer used with an aerobika that has no such strange attachment. I guess it is the newest thing in nebulizers but I am an old dog and incapable of learning new tricks and thus, having an impossible time with it. That you, with all your knowledge, has never heard of it makes me happy because it reinforces my belief that this new accessory is not a "must have"! I have had some fluttering problems with a regular nebulizer in the past so don't need something else that can go awry.
Am I the only one who finds it impossible to use the aeroeclipse nebulizer with the manometer? Doesn't seem to work for me. Going back to Pari nebulizer with no manometer! Think I followed instructions well. Need reassurance that I am NOT the only one with this difficulty. As always, thank you to all.