Testing Positive and Negative after MAC Treatment

Posted by terryb1 @128128terry11t, Fri, Sep 27 6:35am

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.

@128128terry11terryb1 Have you had a bronch, that may help with the decision of what to do.

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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.

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@128128terry11t

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.

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Terryb, I have been waiting 3 months to get into Jewish. How long did it take you? I'm going to see an infectious disease Doc in Denver who has a license to give me a drug my doc here thinks I need, until I get to Jewish. It seems EVERYTHING is slow except my side effects from these antibiotics! Thanks!

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@128128terry11t

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.

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@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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@vetnyregr

Terryb, I have been waiting 3 months to get into Jewish. How long did it take you? I'm going to see an infectious disease Doc in Denver who has a license to give me a drug my doc here thinks I need, until I get to Jewish. It seems EVERYTHING is slow except my side effects from these antibiotics! Thanks!

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I waited 3 months. This was in 2003. The doctor I saw was Dr. Huett and I think she’s still there. I was there for ten days – went back for 3 days 3 months later for follow up. They are fabulous and so thorough. I’m sure you’ll find it worth the wait.

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@128128terry11t

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.

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@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.

Liked by Brenda R.

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@heathert

@128128terry11terryb1 Have you had a bronch, that may help with the decision of what to do.

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@128128terry11t, and @heathert I do know of a woman here in my hometown that has bronchiectasis and got regular bronchial washings that cleared her up. She swears by it.

Liked by heathert

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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.

Liked by Brenda R.

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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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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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@windwalker

@128128terry11t, and @heathert I do know of a woman here in my hometown that has bronchiectasis and got regular bronchial washings that cleared her up. She swears by it.

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@windwalker that would be fantastic!

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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

Liked by Brenda R.

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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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