How MAC patients have tolerated taking the 3 antibiotics

Posted by sallyb827 @sallyb827, Oct 31, 2022

sallyb827 | @sallyb827 | 17 minutes ago
I was diagnosed with Bronchiectasis and MAC in 2017. CT scan showed improvement in 2020. Now the CT scans and breathing tests indicate the disease is worse and the Docs want me to start the 3.
I am terrified of taking 3 antibiotics a day. I have IBS-D already and 3 antibiotics a day will make it worse. I fear living my life in the bathroom.
How have other people tolerated the antibiotics?
I have started exercising pretty heavy again ( slowed down during COVID) to move the mucous and bacteria out.
I take a lot of natural supplements including Enteragam(prescription drug) and probiotics daily. It keeps my IBS under control.

Any comments on how you tolerated the 3 would be helpful!

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@helen1000

Great to hear everything is going on right! I am on Amikacin for 10 days, except my ears feel heated up sometimes, I don't feel anything wrong. Do you have the same feeling with your ears? Are you taking any supplement to help with it? I am taking NAC and Glutathione, both are strong antioxidant.

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I have not experienced my ears heating up but the last few days I have been coughing more during treatment.

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@britchic

Thank you no other side effects?

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Not that I can think of. I just know that the damage mac does and the symptoms of it are worse than the treatment

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@helen1000

I took all three with dinner on a daily basis since July 25. I take clofazimine instead of rifampin. So far I have not lost my appetite.

I also paid a lot of attention to what I eat. Usually if they are not the right food, my abdomen will feel it, and then I cut it off or reduce the amount. I have sensitive guts so I have to eat the right food! Then I am fine.

I took a gluten free, dairy free supplement to help with gut lining. But it caused foot burning sensation so I don't take it any more.

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My Dr told me you have to apply for a trial to get Clofazimine. I see a lot of people on here taking it, just curious if it’s easy for Dr to prescribe or through trial only?

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I have been taking the 3 antibiotics since January and have had no issues. I have been taking two probiotics a day to counter problems the meds can cause with the gut biome

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@reneemc

My Dr told me you have to apply for a trial to get Clofazimine. I see a lot of people on here taking it, just curious if it’s easy for Dr to prescribe or through trial only?

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Not really I did not go through any trial. But I got it from the doctor's office, not from pharmacy. I heard it causes less side effects to liver.

People turn orange or pink after two weeks taking it. I am taking 50mg per day ( lower dose) and I hope it wont color me too bad!

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@mjb24

I have not experienced my ears heating up but the last few days I have been coughing more during treatment.

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I don't cough but I used to have an urge to cough if I exhale hard. Now I feel this is getting better .

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@pfurcht123

is there a reason that most of you spread out the dosing of the antibiotics? the instructions on the bottles didn't give any specific instructions so I take them all at once at nite. I am wondering if I should have been instructed to take them separately throughout the day or is that just personal preference?

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I was told or read that rifampin should be taken two hours after food or one hour before.
I have trouble sleeping and usually wake up at 2 a.m. or 3 a.m., so I get up and take my
two rifampin. Then the Azithromycin and Ethambutol partially with breakfast and partially
with lunch. Started Feb. 5, so far no problems other than slight diarrhea every week or two.
I'm lactose intolerant and tried Florstor and it wiped me out.
Submitted sputum samples last week but haven't heard results yet.
Harry

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@harrynsc

I was told or read that rifampin should be taken two hours after food or one hour before.
I have trouble sleeping and usually wake up at 2 a.m. or 3 a.m., so I get up and take my
two rifampin. Then the Azithromycin and Ethambutol partially with breakfast and partially
with lunch. Started Feb. 5, so far no problems other than slight diarrhea every week or two.
I'm lactose intolerant and tried Florstor and it wiped me out.
Submitted sputum samples last week but haven't heard results yet.
Harry

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Hello Harry. I am on the same 3 antibiotics that you are and I am taking California Gold Lactobif 30. So far I am not having any nausea or diarrhea from the meds. They do not contain dairy. I buy them online from iherb.com; $22 for 60. When I started the antibiotics, it was recommended I take a probiotic but no one could tell me which strains were best for these antibiotics. I wound up researching each of them and found the recommended probiotic strains. Then researched different probiotics and finally found the California Gold Lactobif 30. I take 1 a day at least 4hrs between antibiotics.

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@mjb24

Hello Harry. I am on the same 3 antibiotics that you are and I am taking California Gold Lactobif 30. So far I am not having any nausea or diarrhea from the meds. They do not contain dairy. I buy them online from iherb.com; $22 for 60. When I started the antibiotics, it was recommended I take a probiotic but no one could tell me which strains were best for these antibiotics. I wound up researching each of them and found the recommended probiotic strains. Then researched different probiotics and finally found the California Gold Lactobif 30. I take 1 a day at least 4hrs between antibiotics.

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@mjb24, I cant believe that you did such a comprehensive research on each specific stain of probiotics. That is amazing! My nutritionist recommended SEED Daily DS 01 as it contains 24 good bacteria.

I checked the ingredient in your recommended probiotics, the top one is Lactobacillus acidophilus. Per below article, it says that this resulted in significant weight gain in humans and animals. Is this one of the criteria for you to choose probiotics?

Comparative meta-analysis of the effect of Lactobacillus species on weight gain in humans and animals - ScienceDirect

We identified and included 17 RCTs in humans, 51 studies on farm animals and 14 experimental models. Lactobacillus acidophilus administration resulted in significant weight gain in humans and in animals (SMD 0.15; 95% confidence intervals 0.05–0.25).

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@helen1000

@mjb24, I cant believe that you did such a comprehensive research on each specific stain of probiotics. That is amazing! My nutritionist recommended SEED Daily DS 01 as it contains 24 good bacteria.

I checked the ingredient in your recommended probiotics, the top one is Lactobacillus acidophilus. Per below article, it says that this resulted in significant weight gain in humans and animals. Is this one of the criteria for you to choose probiotics?

Comparative meta-analysis of the effect of Lactobacillus species on weight gain in humans and animals - ScienceDirect

We identified and included 17 RCTs in humans, 51 studies on farm animals and 14 experimental models. Lactobacillus acidophilus administration resulted in significant weight gain in humans and in animals (SMD 0.15; 95% confidence intervals 0.05–0.25).

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You seem to be quite a researcher yourself! I just don't like not knowing enough about something that important. I am determined to do what I can to tolerate the antibiotics and not have to interrupt treatment. No, I didn't select this one because of weight gain reports although that would be a great side benefit 😃. I was just trying to find a probiotic that included recommended strains for Azithromycin, Ethambutol and Rifampin and this was the closest I could find. I am going to research SEED Daily DS 01 in case I need to make a change in the future. Thanks for sharing that. I find there is not much guidance on probiotics. Even the pharmacist was not much help, all he could tell me was what was most popular.

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