Testing Positive and Negative after MAC Treatment

Posted by terryb1 @128128terry11t, Sep 27, 2019

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.

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@windwalker

@12818terry11t, Hi Terry. When you were taken off meds and testing negative for mac, were you not taking any kind of antibiotic for two years? If that is the case, you need to know that mac patients cannot be totally drug free. We need to be on lose dose maintenance meds to keep the mac away. The circumstances that allowed you to get mac in the first place, do not go away with antibiotics. This is what my Mayo dr explained to me. The preventative maintenance meds have kept me mac free since 2014.

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@windwalker I am going off the meds in 2 months and my specialist is insistant on just going off without taking anything else to stop the MAI to return. I am not happy about about this so will write to her using your wordings above. I guess I would take something different to you having MAI not MAC

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@heathert

@windwalker I am going off the meds in 2 months and my specialist is insistant on just going off without taking anything else to stop the MAI to return. I am not happy about about this so will write to her using your wordings above. I guess I would take something different to you having MAI not MAC

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@heathert I have had both MAI and MAC. Drs always just told me I had mac; and I was shocked when I requested ALL hard copies of my sputem lab reports going back to 2005, and saw the MAI diagnosis in one of my years of illness. You all have heard me time and again say "GET HARD COPIES OF YOUR LAB REPORTS". It is important in so many ways.

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@rmason

@128128terry11t I was on two antibiotics for a year (did not tolerate rifampin) and 2 of 3 sputum samples were positive. I have decided not to resume antibiotics at this time as minor coughing is my only symptom.

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@rmason Are you having CT scans evety two years to make sure that there is no silent lung damage happening?

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@heathert

@windwalker I am going off the meds in 2 months and my specialist is insistant on just going off without taking anything else to stop the MAI to return. I am not happy about about this so will write to her using your wordings above. I guess I would take something different to you having MAI not MAC

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@heathert It doesn't matter if you had mac or mai. Neither are curable; and the cause for getting it in the first place is either faulty genes, bronchiectasis, gerd, lung damage, or low immune system (low IGg), etc. Antibiotics do not erase those things. That is why mac re-occurrance is probable. That is why my dr wants me on 10 day a month antibiotics probably for life. We must all bear in mind, a negative sputem test does not neccessarly mean that it is gone, it means it is at an undetectable level. I am not saying my treatment is the way to go for everybody, but it is food for thought. (& mac-free since 2014, or at least undetectable level.)

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@windwalker I realize they are not curable, however MAC is Gram Positive and MAI is Gram Negative so they often need different medications. I looked yours up and they both deal with gram negative and some gram positive which is fantastic. One is particulary good for pseud, which I do not have yet so I may not need that one, will be interesting to see what my Dr has to say about all this, she seems like it isn't necessary but I disagree.

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@windwalker

@heathert I have had both MAI and MAC. Drs always just told me I had mac; and I was shocked when I requested ALL hard copies of my sputem lab reports going back to 2005, and saw the MAI diagnosis in one of my years of illness. You all have heard me time and again say "GET HARD COPIES OF YOUR LAB REPORTS". It is important in so many ways.

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@windwalker So true!

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@windwalker

@rmason Are you having CT scans evety two years to make sure that there is no silent lung damage happening?

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@windwalker -I haven’t even been diagnosed for two years yet-I did have a second CT scan before I completed the year of antibiotics and the pulmonologist thought there was some improvement-I will definitely keep track of that!

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@windwalker

@heathert It doesn't matter if you had mac or mai. Neither are curable; and the cause for getting it in the first place is either faulty genes, bronchiectasis, gerd, lung damage, or low immune system (low IGg), etc. Antibiotics do not erase those things. That is why mac re-occurrance is probable. That is why my dr wants me on 10 day a month antibiotics probably for life. We must all bear in mind, a negative sputem test does not neccessarly mean that it is gone, it means it is at an undetectable level. I am not saying my treatment is the way to go for everybody, but it is food for thought. (& mac-free since 2014, or at least undetectable level.)

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@windwalker Terri, what antibiotics do you take 10 days/month? Thank you!

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I'm sure many of you veterans have been through this but I'm discouraged right now. After 11 consecutive negative sputum cultures I was hoping to get off of the Big 3 the end of June. My last sample; however, was positive. Of course, I received the results on a Friday afternoon but my infectious disease Dr. is great about communicating so I am hoping to hear from him right away next week. Has anyone else experienced this? How was your treatment changed or extended? I'm trying to stay positive…..thanks for listening! Nancy

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@n4seth

I'm sure many of you veterans have been through this but I'm discouraged right now. After 11 consecutive negative sputum cultures I was hoping to get off of the Big 3 the end of June. My last sample; however, was positive. Of course, I received the results on a Friday afternoon but my infectious disease Dr. is great about communicating so I am hoping to hear from him right away next week. Has anyone else experienced this? How was your treatment changed or extended? I'm trying to stay positive…..thanks for listening! Nancy

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Hi @n4seth Yes I know that feeling, alot of our bugs are resistant to the big 3 unfortunatly. I added Amikacin and I got negitive sputums, your Dr may do the same for you. However I find that the big 3 keep the MACMAI from advancing further so maby this is happening for you. Take care Heather

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