1. < MAC & Bronchiectasis

Just started a week ago the big three and feel so very sick

Posted by justaussie @justaussie, Sep 27 1:54pm

Hi everyone, I finally started the meds. Terrified for the side effects and to be honest feel completely depressed and sad. I feel so very sick. I've started taking the meds at night before bed as can't tolerate how sick I feel during the day. The next morning feel marginally better but have this vile sick taste in my mouth all day like I want to vomit. I started a probiotic yesterday hoping it will help. I don't know how I'm going to tolerate this long term. I have mild/moderate Mac at present - but have a 4.5cm (or possibly bigger now since ct scan in June) and quite frankly my symptoms were far easier to cope with than these meds. Can anyone tell me what they are taking/using to help alleviate the sick feeling? I really don't think I can take these long time feeling like this. With no quality of life - what's the point. Sadly I'm 59 and would like to be around for awhile but not if life is miserable. Feeling devastated.

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marthabk | @marthabk | Oct 15 9:49am
In reply to @lvnl "I am also on either Arikayce (amikatcin) or placebo, Azithromycin and Ethambutol (Encore Arikayce study). I..." + (show)
@lvnl

I am also on either Arikayce (amikatcin) or placebo, Azithromycin and Ethambutol (Encore Arikayce study). I am using florastor probiotics - recommended by my gi doc. Only (or one of very few) probiotics established thru clinical studies to help keep intestinal flora in shape with antibiotic treatment.
I also had only mild bronchiectasis and MAC symptoms and while I'm tolerating treatment well physically so far, it is super time- and energy-consuming so in that sense the treatment is more overwhelming than the disease but I definitely want to treat before it progresses and not after! Any of us of a certain age or having other immune etc conditions are at high risk for progression and worse permanent damage.
Anyone just starting on this road and in shock: give yourself time, you will sort out what works best for you to have quality of life vs disease dominating everything!
This group is a tremendous help!

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Thanks for mentioning "floraster probiotics." Where do you purchase them? I am glad that it has been through clinical studies.

Martha

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1 reply
lvnl | @lvnl | Oct 15 10:46am

They are not the cheapest. Costco has them for the lowest price I could find, and they are also available on Amazon or florastor.com. I think most major chains like CVS, Walgreens etc carry them.

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formergardener | @formergardener | Oct 16 6:07am
In reply to @marthabk "Thanks for mentioning "floraster probiotics." Where do you purchase them? I am glad that it has..." + (show)
@marthabk

Thanks for mentioning "floraster probiotics." Where do you purchase them? I am glad that it has been through clinical studies.

Martha

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I found the NOW brand of the Saccharomyces boulardi to be excellent and much cheaper. It works well for me and has no lactose. I found it on Amazon.

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1 reply
lindabourassai | @lindabourassai | Oct 17 10:59am

I was bedridden when I took the big 3 so my pomologist had to take me off of them. I also could not take Arycace. The unfortunate truth is that some of us just cannot take the drugs required for MAC.

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1 reply
suzek | @suzek | Oct 17 12:03pm
In reply to @formergardener "I found the NOW brand of the Saccharomyces boulardi to be excellent and much cheaper. It..." + (show)
@formergardener

I found the NOW brand of the Saccharomyces boulardi to be excellent and much cheaper. It works well for me and has no lactose. I found it on Amazon.

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The NOW brand you mentioned is what was recommended to me at my Health Food Store.

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1 reply
formergardener | @formergardener | Oct 17 1:10pm
In reply to @suzek "The NOW brand you mentioned is what was recommended to me at my Health Food Store." + (show)
@suzek

The NOW brand you mentioned is what was recommended to me at my Health Food Store.

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That's great! It is a good brand with a good reputation. I was happy to find it because the probiotics can be pricy, but you still want viable strains. If anything, I found this to work even a little better for me personally.

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laborday24 | @laborday24 | Oct 19 2:38pm
In reply to @lindabourassai "I was bedridden when I took the big 3 so my pomologist had to take me..." + (show)
@lindabourassai

I was bedridden when I took the big 3 so my pomologist had to take me off of them. I also could not take Arycace. The unfortunate truth is that some of us just cannot take the drugs required for MAC.

Jump to this post

So what are they doing for you

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