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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@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

Jump to this post

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

REPLY
@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

Jump to this post

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.

REPLY
@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

Jump to this post

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.

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

Thank you all for the encouragement and support…

REPLY
@sueinmn

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

Jump to this post

Sue I’m wondering if the nebulizer helps keep the infection at bay or if it helps with the bronchiectasis. Currently I am not diagnosed with bronchiectasis only MAC but I am happy to pursue anything that might get rid of the infection. Thanks!

REPLY
@sueinmn

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

Jump to this post

Sue, you explain things so well and I can relate to weight loss, fatigue, cough and digestive issues. I am feeling that my condition is a body and mind issue. Often waking up I dont feel great and after a long walk will feel better. My wonderful doctor gave me a pep talk and said dont let this illness bring you down, be strong, be healthy keep going. Thank you . H

REPLY

Hi all

I was diagnosed June 2021 I went to my appointment last week 22 June 2022 professor says I no longer have Mac I had 2 negatives I am really confused and angry and he is putting it been cleared down to some changes in my xray and 2 negative sputums. Yet I feel worse than ever coughing up more than ever just constantly tired. Please help me C.

REPLY
@catherine83

Hi all

I was diagnosed June 2021 I went to my appointment last week 22 June 2022 professor says I no longer have Mac I had 2 negatives I am really confused and angry and he is putting it been cleared down to some changes in my xray and 2 negative sputums. Yet I feel worse than ever coughing up more than ever just constantly tired. Please help me C.

Jump to this post

Can you tell me a little more about your diagnosis and treatment? I have looked at your earlier posts, and it seems you tried antibiotics for a year, so maybe the cough is just bronchiectasis and not an infection?
Sue

REPLY
@sueinmn

Can you tell me a little more about your diagnosis and treatment? I have looked at your earlier posts, and it seems you tried antibiotics for a year, so maybe the cough is just bronchiectasis and not an infection?
Sue

Jump to this post

Hi sue

I was on the big 3 for 8 months I stopped treatment myself 4 months before I seen professor. I do my saline nebs twice daily. I am still coughing up sputum that can look green yellow and if I get deeps coughs specs of brown through it. I have pains out my back that come and go. I was diagnosed on my last appointment with ecoli pneumonia and he said he taught I may be carrying abit of it still and came me another of the same antibiotic I took on last appointment Ciprofloxacin 750mg twice daily it's breaking the cough a small bit am I am on it now 5 days, I an still suffering the same illness I originally went to A&E about I finding it truly hard to communicate with my professor. Last appointment I seen a doctor she noted all I'd to say went to see Prof, he came into appointment room said its gone just take this antibiotic and I'll see you in 6 month's, I went into shock when he left I cried to doctor why do I not feel any better of worse, and why are they shadows etc on my xray she said maybe scarring even tho it was cavity Mac I was diagnosed with, apologies it's all over the place I find I'm confused angry and sick and getting out of it mentally is hard when all says I'm good but I don't feel better. When I said to the doctor I think I'll need a second opinion she said there are 4 more consultants over there (other hospital) I think I need to clear my angry mental state before doing it all over again C.

REPLY
Please sign in or register to post a reply.