3 Months in with 7% Sodium Chloride

Posted by BlueSplashGirl/ Carolyn @bluesplashgirl, Fri, May 15 10:36am

I just took another sputum test and the fast and first results are clear of any obvious rare form of Mycobacterium they found (immediately) last November. Now, the growing process starts and I am hopeful that the daily 7% neb will prove successful for beating back the MAC. I started the meds and neb 3 months ago. Fingers crossed I can be done with the big 3 this summer.

@bluesplashgirl Good luck! Hope the culture comes back negative. I'll be having mine in a few weeks and hoping for good results too.
Sue

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@bluesplashgirl and @sueinmn I wish you both great results, let us know how you get on.

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I go for my yearly check with my pulmonologist next week at Mayo for bronchiectasis and hope things are continuing to be stable, with nothing new showing up on the CAT scan……..🤞🤞🤞

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@migizii

I go for my yearly check with my pulmonologist next week at Mayo for bronchiectasis and hope things are continuing to be stable, with nothing new showing up on the CAT scan……..🤞🤞🤞

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@migizii Wishing you the best of results. Safe travels.
Sue

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Thanks everyone. Will keep you posted and also, good luck to everyone!

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@bluesplashgirl Jeremiah 29:11- Hoping and praying for a successful outcome for you! irene5

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@irene5

@bluesplashgirl Jeremiah 29:11- Hoping and praying for a successful outcome for you! irene5

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Fingers crossed for Migzii, Sue, and Blue Splash Girl. Donq

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@sueinmn

@migizii Wishing you the best of results. Safe travels.
Sue

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Thanks!

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For anyone traveling to Mayo Clinic or having tele-consults, you may find these discussions useful:
– Tips: Traveling to Mayo to get medical care safely during COVID-19 https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/
– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

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@migizii

I go for my yearly check with my pulmonologist next week at Mayo for bronchiectasis and hope things are continuing to be stable, with nothing new showing up on the CAT scan……..🤞🤞🤞

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Prayers for a clear sailing report !! Safe travels

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Fingers crossed !

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How long have you been on the big 3? I’ve only been taking them for 2 months. Due to Covid I haven’t had any sputum tests. My doc is in Birmingham. I’m new and don’t know what to think. I have bronchiectasis and a cavitation. I’m 72 years old. Thank you.

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@marellen

How long have you been on the big 3? I’ve only been taking them for 2 months. Due to Covid I haven’t had any sputum tests. My doc is in Birmingham. I’m new and don’t know what to think. I have bronchiectasis and a cavitation. I’m 72 years old. Thank you.

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@marellen Do you mean you never had a sputum culture, and went on the drugs based only on imaging, or no repeat tests since starting the big 3?

MAC is a very slow-to-grow, slow-to-go bacteria, so it is normal for the docs to wait at least 3, more usually 6, months before doing another sputum culture. A typical course of meds, if there is such a thing, is at least 12 months, more usually 18 months or longer.

But if you haven't had a culture at all, maybe you should be asking for one to be sure they have you on the correct meds. Part of the culture process is "susceptibility testing" to see which drugs your MAC responds to. This is not something that requires you to be in an office – they can mail you collection vials and instructions, then you can do a curbside drop-off at the clinic with the specimens. Just be sure you collect & store the samples as instructed to get good results. If you are far from your doc or the testing labs, they can also arrange for the specimens to be shipped (requires special containers/handling.)

Other than wondering, how is it going with the big 3? Are you tolerating it ok?
Sue

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I would be reluctant to even start a treatment protocol without a specialist’s recommendation. In fact, I’d want the recommendation of several specialists. My first sputum test results came back positive for MAC and contained recommendations for treatment. Subsequently, I consulted with my pulmonologist, an infectious disease specialist and my primary care provider. Each one had a different treatment protocol recommendation. My cardiologist strongly recommended I begin treatment immediately. I went to National Jewish Health in Denver for a thorough work up. They took three sputum cultures and “grew them” for 10 weeks. Results showed no MAC infection!

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@marellen

How long have you been on the big 3? I’ve only been taking them for 2 months. Due to Covid I haven’t had any sputum tests. My doc is in Birmingham. I’m new and don’t know what to think. I have bronchiectasis and a cavitation. I’m 72 years old. Thank you.

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Hello, This is my second go around with MAC and the Big 3. I have been on the drugs for 3 months including nebulizing with 7% sodium chloride solution prescribed. I took sputum tests in November and did not het results until end of February. I grew MAC and mycobacterium nebraskense, which is a rare form. I did not do a CT scan this time since I have had so many in the past 4 years. I am hoping for a clear sputum. I certainly would not take the big 3 without a positive MAC result from my pulmonary specialist and infectious disease doctor. They are very, very hard on ones body. Hope this info helps!

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