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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@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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@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 Nancy, That stinks! In your place, after so many negative results, I would ask for a retest in case it was a contaminated sample. Or if asymptomatic, I might ask for a 6 month trial off the antibiotics and on 7% saline with airway clearance.
Sue

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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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I was also on the Big 3 for a year and then got a positive result after 2 negatives. I continued with the antibiotics and have since have had 3 negative results. I'm hoping to get off at the end of August. I continue to do my airway clearance and the 7% saline like Sue mentioned.

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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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I wasn’t as successful as you with the big 3. I had to go off them after 6 months because of side effects. At that time, my sputum samples were positive and bacterial counts were +3 and +4. That will be 2 years ago in the fall.
I started on 3% saline for a couple of months and worked up to 7% saline twice a day. My bacterial count gradually came down and stayed around +1 for a long time but my last sample was negative.
I am diligent with my airway clearance with the 7% saline in hopes that i can stay off the medications.

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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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Nancy,
I would like to mention that when I joined this group 3 years ago, few of us had heard of, or tried, the 7% saline solution nebulized daily. Then, one-by-one, many long-term MAC-infected members decided to give it a try. As one of those, I was "fading away" on the big 3 – weight loss, fatigue, cough and digestive issues after 4 years of continuous illness and 20 months of antibiotics. With my pulmonologist and ID doc, we decided that my lungs looked better, even though MAC culture were still positive, and it was time to stop the drugs. I could only manage to work at anything for 2-3 hours a day, and napped every day, sometimes twice.

In December 2019, I started nebbing twice a day with both levalbuterol and 7% saline. By last summer, I dropped the levalbuterol neb unless my asthma was acting up. I also use Mucinex to keep the mucus thinned, a LABA inhaler and Singulair, all to help keep both my bronchiectasis and asthma under control. I could manage up to 4 hours a day of being active – but was done by 4 pm, and often needed a nap.

Now I neb with the saline once a day, but only until I start coughing up mucus. I have finally regained a little weight, my digestion has improved, and I have not had an exacerbation in 18 months. I have regained energy – recently working long days in my yard and my daughter's home, with only one or two "recovery" days per week.

I am not saying this will happen for everyone, but sometimes "less is more" and simple remedies can be helpful. Who would have thought saline would be better than antibiotics for getting my life back?

Sue

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