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

Hi Guys, I am trying various diet to make my guts less sensitive. I recently cut milk, wheat and rice and my guts become much better. I had chinese cabbage with chicken / shitake mushroom/potato as dinner with all big THREE antibiotics yesterday but I only had one formed bowl movement the whole day. I am not sure whether it is probiotics I take also help too. But I hope you can try the best fit food for you and keep your guts healthy. Good luck to all fighters in this forum. I wish everyone rebuild their health after years's fight! Nutrition and exercise always help!

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Helen,
Do some research on the FODMAP diet from Australia. 20 years of research.
Several books available.
Harry

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@harrynsc

Helen,
Do some research on the FODMAP diet from Australia. 20 years of research.
Several books available.
Harry

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Yes yes I was advised and will start doing it definitely. People here are so knowledgeable and kind hearted! 😇

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@helen1000

Yes yes I was advised and will start doing it definitely. People here are so knowledgeable and kind hearted! 😇

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Hi all
I have IBS and ate a low Fodmap diet for years. It is a very restrictive diet so a few years ago my husband and I were on a cruise and introduced gluten in moderation and dairy ( i was told I had a gluten sensitivity and lactose intolerance).
Try the diet, if it works for you then you should stay on it.
I also do NervaIBS hypnotherapy 15 minute tapes about 4-5 days a week which has helped my gut cramps.
Good luck!

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Has anyone had more bronchiectasis symptoms like cough and SOB esp. in the morning after being on MACtx drugs and using vest??

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