1. < MAC & Bronchiectasis

I was recently diagnosed with Bronchiectasis.

Posted by mmteach @mmteach, May 10, 2016

I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!

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janovr | @janovr | Feb 20, 2019
In reply to @windwalker "@mtmteach, I am happy to hear that you are catching this disease in the early stages...." + (show)
@windwalker

@mtmteach, I am happy to hear that you are catching this disease in the early stages. Your dr is right, avoid ill people, and wash your hands immediately after being in public places to avoid picking up germs that cause colds and flues. AVOID hot tubs, and indoor swimming pools! They can be loaded with mac. Wish I had known that. We had a hot tub for years and were in it every night.....pretty sure that is where I got my mac infection. I wish my drs that diagnosed with bronchiectasis many years back had said "Don't get into hot tubs", but they didn't.

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@windwalker ... My daughter has a pool in Fl that is in an enclosed open screened area. Is that a No No? 😢

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 24, 2019
In reply to @janovr "@windwalker ... My daughter has a pool in Fl that is in an enclosed open screened..." + (show)
@janovr

@windwalker ... My daughter has a pool in Fl that is in an enclosed open screened area. Is that a No No? 😢

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@janovr, Being screened in means that you are still getting fresh outdoor air around your daughter's pool, so it is not considered an indoor pool. It gets hot in Florida and can make outdoor pool water warm. Mac likes warm water. Being a private pool lessens the chance of it having a lot of mac in it. NIH did a study on contaminated pools and found that most indoor or outdoor pools had some level of mac in them. The pools that tend to have the most mac in them are high traffic public pools & indoor pools. Mac tends to colonize in warm pool water. That is why the indoor pools tend to have a higher count. I rarely get into pools. When I do, it is for a quick fanny dunk to cool off. I only do that if the water looks really clean and clear and I keep my head high out of the water. Some members on our site are very ill and are having a tough time battling their mac. In that instance, I would avoid a pool like the plague.

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1 reply
janovr | @janovr | Feb 24, 2019
In reply to @windwalker "@janovr, Being screened in means that you are still getting fresh outdoor air around your daughter's..." + (show)
@windwalker

@janovr, Being screened in means that you are still getting fresh outdoor air around your daughter's pool, so it is not considered an indoor pool. It gets hot in Florida and can make outdoor pool water warm. Mac likes warm water. Being a private pool lessens the chance of it having a lot of mac in it. NIH did a study on contaminated pools and found that most indoor or outdoor pools had some level of mac in them. The pools that tend to have the most mac in them are high traffic public pools & indoor pools. Mac tends to colonize in warm pool water. That is why the indoor pools tend to have a higher count. I rarely get into pools. When I do, it is for a quick fanny dunk to cool off. I only do that if the water looks really clean and clear and I keep my head high out of the water. Some members on our site are very ill and are having a tough time battling their mac. In that instance, I would avoid a pool like the plague.

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@windwalker thank you for the reply. YAY, I can just do a fanny dunk and be happy to join the fun! 😀

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boomerexpert | @boomerexpert | Mar 29, 2019

@kristiemlove It's been a while since you posted this about your mom but it was so exceptional I saved it! Need to ask: for what was she having the VATS procedure?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 12, 2019
In reply to @heathert "@windwalker same with me, they said nothing about hottubs, wish they had." + (show)
@heathert

@windwalker same with me, they said nothing about hottubs, wish they had.

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@heathert Me too.

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beatitnow | @beatitnow | Oct 22, 2019

Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I have been on antibiotics for 3 years and still have MAI. With diet and exercise do you think it could stay under control? Has anyone heard of anyone doing this? Thank you!

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3 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 22, 2019
In reply to @beatitnow "Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I..." + (show)
@beatitnow

Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I have been on antibiotics for 3 years and still have MAI. With diet and exercise do you think it could stay under control? Has anyone heard of anyone doing this? Thank you!

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@beatitnow I answered you under the Arikayce topic where you also posted.

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1 reply
2019mc | @2019mc | Oct 22, 2019
In reply to @sueinmn "@beatitnow I answered you under the Arikayce topic where you also posted." + (show)
@sueinmn

@beatitnow I answered you under the Arikayce topic where you also posted.

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hello Sue, pls how do I see post under Arikayce

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janovr | @janovr | Oct 27, 2019
In reply to @beatitnow "Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I..." + (show)
@beatitnow

Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I have been on antibiotics for 3 years and still have MAI. With diet and exercise do you think it could stay under control? Has anyone heard of anyone doing this? Thank you!

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@beatit

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janovr | @janovr | Oct 27, 2019

Hi ... I was dx in 2015. I was on the meds 3 months and lost 40 lbs. due to ghastly side effects. Changed doctors. Never gone on them again. I had clear sputum culture in April, 2019. Took me 4 years to gain 20 lbs back. I am careful about hand washing, crowds, common sense, and so far so good. I have more issues with bronchiactisis but try too walk daily and stay hydrated. God bless! Jan/Fl.

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