What now? What else can be done?

Posted by Garnet @lampstone, Thu, Jun 13 12:12am

2014-2018, I have had Bronchiectasis, MAC = 4 years on three antibiotics daily; 2018, 1 year drug holiday. Recent positive myco cultures + 5th bout with pseudomonas in 7 months treated with 3 Rx of Levoquin, 1 Rx of cefpodoxime proxetile. Now it’s back again. I have consultation with my Mayo physician next week to find out what’s next. Currently 2 albuterol nebulizer daily and 1 saline nebulizer daily. Using ventolin inhaler before each nebulizer treatment. And acappella after each. Anyone who has this condition knows how I feel…so I will spare you the symptomatic details.
Does anyone know what effect Bronchiectasis, MAC, and additional bacterial lung infections have on life expectancy? I was diagnosed at 66, now 71. And are there natural remedies that might help manage this and have a better quality of life with this disease? I know walking, exercise, healthy diet, adequate hydration, hot ginger tea…etc. But I am also fructose and lactose intolerant. Ugh!

Liked by Brenda R.

@lampstone

I had been using 7%, but when I began lung clearance three times a day, I was instructed to use albuterol morning and night, and then midday use 3% saline.🤷🏻‍♀️

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@lampstone Why such a low dose and only once a day?

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@lampstone

I had been using 7%, but when I began lung clearance three times a day, I was instructed to use albuterol morning and night, and then midday use 3% saline.🤷🏻‍♀️

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@lampstone My dr has me do albuterol 2x day then followed by 7% saline 2x day. There is scientific proof that 7% saline kills mac. 3% not strong enough. If you think about it, we were all raised to gargle with warm salt water when we had a sore throat. Remember? That is because the salt kills back the bacteria. First of all, the saline treatments clean out your lungs and can cause a productive cough to clear the mucous out. Second way it works id that it creates a salty environment that discourages bacterial growth. May want to revisit that dose with your dr. There is a saline chart posted on the Discussion Board on the main group page that shows what percentage of saline will kill certain bacterias. The only time drs do not like to use 7% saline is if your lungs are in very fragile shape.

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@windwalker

@lampstone My dr has me do albuterol 2x day then followed by 7% saline 2x day. There is scientific proof that 7% saline kills mac. 3% not strong enough. If you think about it, we were all raised to gargle with warm salt water when we had a sore throat. Remember? That is because the salt kills back the bacteria. First of all, the saline treatments clean out your lungs and can cause a productive cough to clear the mucous out. Second way it works id that it creates a salty environment that discourages bacterial growth. May want to revisit that dose with your dr. There is a saline chart posted on the Discussion Board on the main group page that shows what percentage of saline will kill certain bacterias. The only time drs do not like to use 7% saline is if your lungs are in very fragile shape.

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I was having burning in my lungs. So maybe that’s why the change. My current x-ray shows a lot of inflammation.🤷🏻‍♀️

Liked by judyhodgern

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@windwalker

@lampstone My dr has me do albuterol 2x day then followed by 7% saline 2x day. There is scientific proof that 7% saline kills mac. 3% not strong enough. If you think about it, we were all raised to gargle with warm salt water when we had a sore throat. Remember? That is because the salt kills back the bacteria. First of all, the saline treatments clean out your lungs and can cause a productive cough to clear the mucous out. Second way it works id that it creates a salty environment that discourages bacterial growth. May want to revisit that dose with your dr. There is a saline chart posted on the Discussion Board on the main group page that shows what percentage of saline will kill certain bacterias. The only time drs do not like to use 7% saline is if your lungs are in very fragile shape.

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Or no 7% if you are a "bleeder". I don't think my lungs would be considered necessarily fragile shape (no cavities, not bad damage, good FEV1, never had other infections other than the active MAC, and some nodules), but I tend to have bleeding episodes so they won't let me do 7%. Discouraging, but I guess better than maybe causing more bleeding.

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@shooei

Or no 7% if you are a "bleeder". I don't think my lungs would be considered necessarily fragile shape (no cavities, not bad damage, good FEV1, never had other infections other than the active MAC, and some nodules), but I tend to have bleeding episodes so they won't let me do 7%. Discouraging, but I guess better than maybe causing more bleeding.

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Shooei. I wonder if taking xarelto for heart would be worrisome with the 7%? I have also had episodes of haemoptasis. My doc is starting me with a saline nebulizer and I am picking it up tomorrow. I do not know what he has prescribed for concentration.

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@sounder27

Shooei. I wonder if taking xarelto for heart would be worrisome with the 7%? I have also had episodes of haemoptasis. My doc is starting me with a saline nebulizer and I am picking it up tomorrow. I do not know what he has prescribed for concentration.

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You would think a blood thinner would make a difference, but I'm sure your doc has taken that into consideration. Please keep me apprised on your concentration & how it goes for you. I'm wondering if I may just bleed occasionally with any irritation, and as @windwalker said the 7% has an effect on MAC so maybe I could try it? At least the 3% does thin the mucous and it definitely helps me cough that up.

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I am still testing positive after 18 months on the Big Three. Still Susceptible to Azithromycin. I am contemplating Mayo or National Jewish. Mayo would be in Rochester MN. Has anyone been to Rochester and do you recommend asking for a certain MD or any other tips before or preparing to go. I feel a big disconnect with my current Pulmonologist and Infectious Disease MD. I am really also interested in joining a research study if anyone is getting any tips on those.

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