1. < MAC & Bronchiectasis

Should I take Big 3 + inhaled ARIKAYCE

Posted by helen1000 @helen1000, Jun 5 11:21am

I am currently 48 year old, I have NTM- MAC with a couple of cavities (1.3 cm * 2.2cm , and 0.5cm* 0.5cm), the big one increased in size from last year ( it was 1.9cm * 1.2cm) and this small one (0.5cm* 0.5cm) is new. Also I have nodules in both lungs widespread. I am using Saline 7% but I don't know whether it helps with cavity. Also my sputum test turned from negative to positive this year. My doctor is concerned that the cavity will keep increasing in size and quantity so he wants me to start antibiotics as soon as possible. He is a great doctor.

I am deeply concerned about the side effects of big 3 + inhaled Arikayce, that my doctor is going to prescribe for me.

Do you think these antibiotics will help with MAC? I truly doubt about it. I did a lot of research, MCA is too hard to cure and it may come back. Not to mention the side effects... I also studies Sue's cases and she is doing really great with Saline 7% without extra antibiotics.

My doctor ( NY) also says they are going to study phage therapy next year. ( I shared my story about phage in Belgium in this forum ) But he says that any new type of antibiotics is not in the pipeline yet. So I am thinking maybe I should take antibiotics. He thinks maybe I can tolerate the medication because of my relatively young age. I don't have other diseases so far.

Do you have any suggestion for me? I am thinking of just closely monitoring with CT every three months. Really struggle with my decision.

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

helen1000 | @helen1000 | 6 days ago

Hi Mariegrace, thx for sharing your story. Did you try digestive enzymes for your IBS? I used Market American brand and it cured my digestive symptoms. I went to bathroom after each meal after using a course of antibiotics. Digestive enzymes works for me quite well!

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1fancydancer | @1fancydancer | 6 days ago
In reply to @helen1000 "Hey ladies/guys, did some research on Probiotics/ collagen peptide, here are a list of the best..." + (show)
@helen1000

Hey ladies/guys, did some research on Probiotics/ collagen peptide, here are a list of the best I can find from internet. Some people also mention that probiotics should be taken 4-6 hours after antibiotics were taken. Still studying the collagen peptide said help repair for leaky guts.

1) VSL # 3 medical grade probiotics - contains 8 strains of bacteria found in human gut
2) Culturelle Pro Strength Daily Probiotic - only contains one strain - Lactobacilus rhamnosus (LGG)
3) Seeds DS 01 Formulated with 24 strains (not found in yogurt, most supplements, or and beverages)
4) Live Conscious Beyond Collagen Multi Collagen Powder

You are welcomed to give the recommendation or input about probiotics you tried or felt worked very well on you. Let's do some homework together to fight for the side effects of long- term use of antibiotics!!!

Here is also a link about an Austin Functional Medicine Dietitian who worked on how to prevent antibiotics side effects. She gave a lot of recommendation on food that contain probiotics like Kimchi, bone broth, etc. Broccoli seems to be a very healthy vegetable to lung, which I hate the most 🙂

https://www.plateandcanvas.com/

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Culturelle is the one my Infectious Disease recommended. I forget half the time and probably take it at all the wrong times. I need to pay attention and not just get accustomed to taking my meds at night or in the morning.

I love Broccoli. Crave green stuff. LOL

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1fancydancer | @1fancydancer | 6 days ago

The key to winning with this stuff is catching it fast and treating it. I just suck it up and take the meds. I want to live to be an active old lady.

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helen1000 | @helen1000 | 3 days ago

Daily findings about probiotics/ Gut/ Liver health - good luck to us all! 🙂

1) Another probiotics that won't be killed by antibiotics, which is to say, you can take it together with antibiotics. 🙂 But some research also says it may bring fungus infection. Please do check with your health provider before you take any probiotics.
Florastor-Daily-Probiotic- contains a yeast Saccharomyces Boulardii CNCM I-745 which won't be killed by antibiotics

2) Digestive enzyme - Market America brand ( search on amazon)

3) Bone broth for liver health

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