1. < MAC & Bronchiectasis

Celebrating an antibiotic-free year

Posted by thumperguy @thumperguy, Oct 10, 2020

And I’m convinced 7% nebulized saline did the trick. (Accompanied by percussion vest vibration) And this forum is the place I learned of “The 7% Solution.“ “Don the indebted.”

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 17, 2020
In reply to @macjane "I had terrible time when my depression made me lay down while eating. I was told..." + (show)
@macjane

I had terrible time when my depression made me lay down while eating. I was told you needed to sit up and wait 2 hours before going to bed. Nexium made me sick.

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@macjane, I am puzzled. Why did you need to lay down and eat due to depression?

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migizii | @migizii | Nov 17, 2020
In reply to @windwalker "Hi Migizii, and Kate. I looked up 'Schatzki's Ring' because it sounded very similar to my..." + (show)
@windwalker

Hi Migizii, and Kate. I looked up 'Schatzki's Ring' because it sounded very similar to my diagnosis of ;Barrett's Ring'. I had trouble swallowing too and having that feeling of things getting stuck in my throat.I had an endoscopy 5 yrs ago and they went ahead and stretched my esophagus out where those rings were.I couldn't believe how much better I felt to eat again. Barrett's can be caused by several things; acid reflux (which I have) and alcoholism (which I do not have). Not sure what the difference in the these two esophagial disorders is, but I found a link about yours. Apparently both have links to GERD/acid reflux. I post links so that other curious members can learn also. Here ya go: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033540/

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Hi Windwalker. Thanks so much for the article. I learned much from it. I have had this ring stretched twice now and the second time all the tests were done at Mayo, Rochester. At this point, they did not recommend any further intervention but I am to contact them if symptoms of problems with swallowing begin again.

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migizii | @migizii | Nov 17, 2020
In reply to @alleycatkate "@migizii Hi and glad to hear your response. You seem right on top of any gastro..." + (show)
@alleycatkate

@migizii Hi and glad to hear your response. You seem right on top of any gastro issues! I had no idea that my lump in my throat was an indication of acid reflux. When I visited my Pulmo at Mayo he suggested that the acid reflux could have been an issue with the MAC and Bronchiectasis as the reflux may have aspirated into my lungs at night. He saw it as an issue that really needed to be handled. And what was amazing was that a Pulmonologist's suggestions for getting it under control were far superior to my gastroenterologists. Anyway...It seems so often that one problem leads to another....so I was just looking to give a heads up..but can see you are already there!! Glad you are doing well. Kate

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In reply to alleycatkate....my pulmonologist was the doctor too who sent me to gastroenterology to check on GERD when he heard my symptoms.....great minds think alike! Hope you are doing well too.

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migizii | @migizii | Nov 17, 2020
In reply to @gej53 "Hi migizii, your post sounds exactly like me. When I first started going to the pulmonologist..." + (show)
@gej53

Hi migizii, your post sounds exactly like me. When I first started going to the pulmonologist he asked me how much I coughed up which was basically nothing. He began the nebulizer and then the vest. After starting with the vest I can get some mucus up but it also gets stuck in my throat. I don't have acid reflux. My MAC was also ruled out at this time. I could not convince him (yet) to give me 7% saline but have found it through Amazon. I hope to convince him to give me a script as I am sure it would be cheaper with one. I do want to use it to keep my lungs as healthy as possible. This site has provided a wealth of information.

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In reply to gej53.....May I ask how much you pay for the solution on Amazon as Pt. D doesn’t cover this and so far, I haven’t had any luck with getting it covered. Your situation sounds so much like mine....do you have MAC? I initially had some very strange bacteria that my pulmonologist did not treat and no other “bugs” have shown up, although he rarely has me do a sputum test as my bronchiectasis is not progressing very much on yearly CAT scans.....my energy levels fluctuate and my weight isn’t that easy to hold on to (many people feel jealous, but not when one wants some weight). Otherwise, I’ve been pretty good king health wise. Twice daily nebulizing must really be key! This is a valuable site. Stay safe and may you have a nice day😊

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2 replies
Jane S. Brown | @macjane | Nov 18, 2020
In reply to @alleycatkate "@macjane Hi Jane...I hope that you have found something to help for depression. I know that..." + (show)
@alleycatkate

@macjane Hi Jane...I hope that you have found something to help for depression. I know that being blue is difficult. Sometimes I just go for a long walk and that picks me up but long term I am not sure that will cut it. Have you gotten the acid reflux under control? Kate.

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Thanks Kate. I am so out of shape physically so long walks are hard. I fell last year and destroyed right hip. They needed to put in very unusual replacement. This meant too much pain reliever that took a year to come off. Have a Safe holiday season. I take Vitamin D but need to come off Klonopin.

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1 reply
gej53 | @gej53 | Nov 18, 2020
In reply to @migizii "In reply to gej53.....May I ask how much you pay for the solution on Amazon as..." + (show)
@migizii

In reply to gej53.....May I ask how much you pay for the solution on Amazon as Pt. D doesn’t cover this and so far, I haven’t had any luck with getting it covered. Your situation sounds so much like mine....do you have MAC? I initially had some very strange bacteria that my pulmonologist did not treat and no other “bugs” have shown up, although he rarely has me do a sputum test as my bronchiectasis is not progressing very much on yearly CAT scans.....my energy levels fluctuate and my weight isn’t that easy to hold on to (many people feel jealous, but not when one wants some weight). Otherwise, I’ve been pretty good king health wise. Twice daily nebulizing must really be key! This is a valuable site. Stay safe and may you have a nice day😊

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Morning! I experienced unrelenting coughing. They tried treating me as if I were experiencing allergies. My medical doc ordered a cxr and sent me to a pulmonologist. He did a CT and felt strongly I had MAC from the presentation of the CT. I had a bronchoscopy and he did biopsies and washings and they all returned no growth so he is treating the bronchiectasis. I still worry about the MAC. The nebulizing with a vest it the only thing that helps me clear my lungs. When I asked about 7% he felt it would give me bronchospasm. I am going to ask him again in January. It was around $40 for 60 vials. I am alternating it with my 3% to make it last longer. Since I did well with it I hope it will give me a script for it. I guess this is a lengthy response for asking the price :). I also have lymphocytic colitis so am scared to death to think about taking the ATB necessary to treat MAC. So far my CT scan has been stable from the previous year. Guess a little tiring to neb but am thankful that so far it seems to keep my chest stable. I still cough but nothing compared to my initial presentation. Sorry so wordy. You have a great day too!!!

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1 reply
alleycatkate | @alleycatkate | Nov 18, 2020
In reply to @macjane "Thanks Kate. I am so out of shape physically so long walks are hard. I fell..." + (show)
@macjane

Thanks Kate. I am so out of shape physically so long walks are hard. I fell last year and destroyed right hip. They needed to put in very unusual replacement. This meant too much pain reliever that took a year to come off. Have a Safe holiday season. I take Vitamin D but need to come off Klonopin.

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@macjane ...Wow, Jane. It sounds like a very difficult year. I hope things continue to improve and that you have a safe and happy holiday also.

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1 reply
Jane S. Brown | @macjane | Nov 18, 2020
In reply to @alleycatkate "@macjane ...Wow, Jane. It sounds like a very difficult year. I hope things continue to improve..." + (show)
@alleycatkate

@macjane ...Wow, Jane. It sounds like a very difficult year. I hope things continue to improve and that you have a safe and happy holiday also.

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Thanks

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alessandre | @alessandre | Nov 18, 2020
In reply to @dolson0730 "How does a person get a percussion vest? Covered by Medicare?" + (show)
@dolson0730

How does a person get a percussion vest? Covered by Medicare?

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Yes, the vest is covered by Medicare.

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migizii | @migizii | Nov 18, 2020
In reply to @gej53 "Morning! I experienced unrelenting coughing. They tried treating me as if I were experiencing allergies. My..." + (show)
@gej53

Morning! I experienced unrelenting coughing. They tried treating me as if I were experiencing allergies. My medical doc ordered a cxr and sent me to a pulmonologist. He did a CT and felt strongly I had MAC from the presentation of the CT. I had a bronchoscopy and he did biopsies and washings and they all returned no growth so he is treating the bronchiectasis. I still worry about the MAC. The nebulizing with a vest it the only thing that helps me clear my lungs. When I asked about 7% he felt it would give me bronchospasm. I am going to ask him again in January. It was around $40 for 60 vials. I am alternating it with my 3% to make it last longer. Since I did well with it I hope it will give me a script for it. I guess this is a lengthy response for asking the price :). I also have lymphocytic colitis so am scared to death to think about taking the ATB necessary to treat MAC. So far my CT scan has been stable from the previous year. Guess a little tiring to neb but am thankful that so far it seems to keep my chest stable. I still cough but nothing compared to my initial presentation. Sorry so wordy. You have a great day too!!!

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Hi! Thanks for the information. Once again, I find myself having another medical condition in common with you-lymphocytic colitis....it’s seemingly uncanny how we have these similarities. Also, I have have not yet faced any infections requiring long term treatments, yet. I hope we can stay well😊. Have a nice evening!

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