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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@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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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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@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.

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@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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@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.

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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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@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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@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.

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

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@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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