How to live after you stop. Meds

Posted by lilianna @lilianna, Mar 3 8:16am

This is my last week of azithro, ethambutol and clofazimine after total of 23 months of antibiotics( with stops at the beginning- allergic to rifabutin) and 18 months after converting. I am happy and scared both. How do you proceed after stoping the meds. How do you strengthen your gut system? Do you increase the lung clearing techniques or you just keep going the same way as usually just without meds? When I asked my doctor she said just stop. But I know that then I am without that extra protection of azithro. So how did you organize your life after taking the antibiotics?

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

I have mentioned this in the past, but it is worth repeating— I strongly believe there’s nothing more important than being in a healthy weight zone. Also, being mindful about consuming enough protein, healthy fats and carbohydrates. They all serve multiple roles and they are all needed, especially the protein. Your body needs protein to repair from inflammation.

If you are not consuming enough protein, the body prioritizes essential functions by breaking down muscle tissue to release amino acids. This leads to muscle wasting and weakened immunity (due to reduced antibody production).

So please, make it a point to put on weight over time. Meet with a nutritionist, preferably one who specializes in lung health. I know of someone who works at National Jewish Health and has a consulting business. Please reach out directly to me if you would like this information.

It is important to our healing to think of food as medicine. Years ago, I was able to get rid of an MAC infection and I believe changes I made to my nutrition were a key factor in my healing. ❤️‍🩹

BE well,
Linda Esposito

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@gbooth54

I am scheduled to stop meds next month and I am so exited! How many times a day do you nebulize?

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Gbooth54. I nebulize twice a day- am before breakfast and pm usually at 6-7 because later I am too tired. I don’t produce any sputum to cough up but I do all the things I need. I use 2 puffs of levalbuterol then after 15 minutes I nebulize 7% sodium chloride with the red pari nebulizing cup, then nebulize 3% sodium chloride with aerobica attached to aeroclipse and two three times a week together with a vest. This I stop from time to time to huff cough. And sometimes, rarely I feel I have mucus so I lay down and use the autogenic drainage app on my phone to expel what’s left. When I am dry I stop. I hope this will keep me from MAC coming back. Sputum tests have been free of Mac since last year august but my Ct is just about the same with small extra changes. It’s a relief to not take meds but I am aware I am more vulnerable without azithromycin which protects us. Unfortunately I started having a lot of gastric problems a few months ago and all doctors said it’s is from antibiotics so I only hope things will get better with time. I wish you all the best

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Deat Gbooth,
I'm so glad to hear that for you. I don't do the nebulizer. I tried with an amikacin inhaler, and it made my mucus so bad. I thought I was going to die some nights. I'm on these meds 5 a day for another 12 to 15 more months. I hope you do very well!

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@gbooth54

I am scheduled to stop meds next month and I am so exited! How many times a day do you nebulize?

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Once daily while wearing my aflo vest

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@becleartoday

I have mentioned this in the past, but it is worth repeating— I strongly believe there’s nothing more important than being in a healthy weight zone. Also, being mindful about consuming enough protein, healthy fats and carbohydrates. They all serve multiple roles and they are all needed, especially the protein. Your body needs protein to repair from inflammation.

If you are not consuming enough protein, the body prioritizes essential functions by breaking down muscle tissue to release amino acids. This leads to muscle wasting and weakened immunity (due to reduced antibody production).

So please, make it a point to put on weight over time. Meet with a nutritionist, preferably one who specializes in lung health. I know of someone who works at National Jewish Health and has a consulting business. Please reach out directly to me if you would like this information.

It is important to our healing to think of food as medicine. Years ago, I was able to get rid of an MAC infection and I believe changes I made to my nutrition were a key factor in my healing. ❤️‍🩹

BE well,
Linda Esposito

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Linda can you send me contact to this nutritionist from NJH please. Thank you

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In response to be clear today......I have lost weight since being diagnosed with bronchiectasis. Dr says I use too much energy getting rid of sputum. Anyone else have this problem?

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@ncalvan

I didn’t convert after one year on big 3 oral antibiotics. I added arikayce and converted sometime in the next year.( I need a Broncoscopy to check because I don’t produce sputum so that’s done once a yr). Then I stayed on arikayce and orals for 18 months after conversion per protocol and Mayo consult and I have remained negative. Hang in there. Give yourself more time with the meds

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Thank you ncalvan, that gives me hope

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@lilianna

My id doctor thought i had rough beginning and additionally ethambutol was added in January after my NJH visit so they counted it since January.

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Ok, thanks for clarifying 🙂

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@kimba78

Hi Tammy,
I am with you. The meds you have been on is what I am on. I have done 3xs a week for three months on arakayce by infusions. It was a rough road but I did it.

I have been on the other meds you mentioned since October. After my three sptum are done ( I don't have any flem to give). I have 12 to 15 months more to go on meds.

How did your body do all those months on these drugs? Did you still feel tired, and aches on the rest of the months that you took your meds?
It is a real is alot to go through on your body I hear you.

Im no doctor but I have been removed from these hard drugs before. If those medications are removed slowly I think it will take time for our body's to recover from being on all these meds and having MAC but hopefully, we will feel better in time. Some doctors ask me where did you get MAC from? If I new I would tell you.
Do you know how you caught MAC?

As far as the MAC coming back we can get it back, but that's the reason we're on meds so long. Hopefully, we won't have any long term affects? Or get it again. Scary stuff.

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Hi Kimba, it is real scary stuff… I have severe anxiety from it and am suffering bad insomnia.
I’ve suffered some really bad diarrhoea initially when I doubled my daily dose of Azithromycin (from 250mg to 500mg), so I dropped back to 250mg and went on a low FODMAP diet which helped. After the diarrhoea stopped, I slowly ditched the diet and eventually went back to 500mg. I do get tired, but i think mostly from the insomnia.
I’m not sure how I got the MAC, especially since I’m quite “young”, I’m 46 y.o. But I suspect it was from when I had pneumonia a few yrs ago and stupidly carried out some tough yard work (and inhaled a lot of dirt), or it could be from feeding my pet rabbit (dusty hay).
I suffer from Sjögren’s syndrome (among other autoimmune diseases), which has led to low lymphocytes, and i think that’s a major factor in me finding it challenging to fight this infection.

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@kimba78

Deat Gbooth,
I'm so glad to hear that for you. I don't do the nebulizer. I tried with an amikacin inhaler, and it made my mucus so bad. I thought I was going to die some nights. I'm on these meds 5 a day for another 12 to 15 more months. I hope you do very well!

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Hi Kimba, what do you mean by making your mucus bad (from the Amikacin)…did you produce a lot more mucus and was it coloured?
I’m producing a lot of thick yellow mucus with the Amikacin and it makes me worried that treatment isn’t working (or is it working?).

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