1. < MAC & Bronchiectasis

intermittently testing positive for MAC

Posted by terryb1 @128128terry11t, Aug 17, 2019

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.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 17, 2019

@128128terry11t So sorry to hear that! I think your portal needs work - the one my clinic uses doesn't release bad results until the doc has seen them, and has a chance to call! That said, I feel for you - I haven't yet had negative results - just one neg & two pos on a couple of samples (my doc alwasy insists on 3.)
But my last CT showed additional pockets of infection, along 2 positive samples, so the ID doc put me on DAILY Big 3 for at least 6 months. Waiting now to see if I converted to negative or if we need to add something. He still says at least 6 months of treatment after 2 consecutive negative tests.
This is such a frustrating infection! Also, take a look at these videos https://www.nationaljewish.org/ntmvideos2016. They may give you some clue about whether this is the same old infection, or a new one.

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2 replies
sylvermoon8 | @sylvermoon8 | Aug 17, 2019

I am not sure I follow everything you said. When you say negative results...is this from a biopsy? If so do you get them frequently? Thank you for the video reference. I had several CT’s and PET scan in the last 2 years and none of what is seen now was there then. So this is all very new for me.

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alleycatkate | @alleycatkate | Aug 17, 2019
In reply to @sueinmn "@128128terry11t So sorry to hear that! I think your portal needs work - the one my..." + (show)
@sueinmn

@128128terry11t So sorry to hear that! I think your portal needs work - the one my clinic uses doesn't release bad results until the doc has seen them, and has a chance to call! That said, I feel for you - I haven't yet had negative results - just one neg & two pos on a couple of samples (my doc alwasy insists on 3.)
But my last CT showed additional pockets of infection, along 2 positive samples, so the ID doc put me on DAILY Big 3 for at least 6 months. Waiting now to see if I converted to negative or if we need to add something. He still says at least 6 months of treatment after 2 consecutive negative tests.
This is such a frustrating infection! Also, take a look at these videos https://www.nationaljewish.org/ntmvideos2016. They may give you some clue about whether this is the same old infection, or a new one.

Jump to this post

@sueinmn Wow!! Thanks a million for posting the video links. I just finished the first one and found it incredibly informative!!
Kate

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terryb1 | @128128terry11t | Aug 17, 2019
In reply to @sueinmn "@128128terry11t So sorry to hear that! I think your portal needs work - the one my..." + (show)
@sueinmn

@128128terry11t So sorry to hear that! I think your portal needs work - the one my clinic uses doesn't release bad results until the doc has seen them, and has a chance to call! That said, I feel for you - I haven't yet had negative results - just one neg & two pos on a couple of samples (my doc alwasy insists on 3.)
But my last CT showed additional pockets of infection, along 2 positive samples, so the ID doc put me on DAILY Big 3 for at least 6 months. Waiting now to see if I converted to negative or if we need to add something. He still says at least 6 months of treatment after 2 consecutive negative tests.
This is such a frustrating infection! Also, take a look at these videos https://www.nationaljewish.org/ntmvideos2016. They may give you some clue about whether this is the same old infection, or a new one.

Jump to this post

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.

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1 reply
heathert | @heathert | Aug 17, 2019

@128128terry11t What a great question, I hope you can get the answer. I am sure alot of others may need this answer too. I am going off the meds in a few months time.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 18, 2019
In reply to @128128terry11t "Thank you for responding. Much appreciated. I was referring to what appears to be the first..." + (show)
@128128terry11t

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.

Jump to this post

Terry - Or maybe somebody goofed and posted the result? I hope you get answers tomorrow!

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Jo Ann K | @jkiemen | Aug 21, 2019

@128128terry11t I has negative sputums but my last CT showed return. I made appt for Mayo in Rochester. The place is huge. I am there now and saw Dr Aksimet yesterday. He spent allot of time with me. He told me many cases are reinfection. He is changing how I am taking my medications. Sent me for some other labs, XRay, tried to get a sputum. Having a swallow test and had a Rhinoscopy. I will I would have pushed my Pulmonologist for the referral sooner. I had to send a request to my insurance to cover the Mayo visits as in network sine there was no real "NTM" specialist in my Network.

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