Set Back

Posted by n4seth @n4seth, Jun 12 5:06pm

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

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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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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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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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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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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Thank you all for the encouragement and support…

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@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

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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!

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@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

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