I have bronchioectasis amd MAC NTM MAI, diagnosed 6 months ago. I remember recently reading that
You shouldn’t swim in chlorinated water. MAC in pool???? I know no hot tubs, showers warm waster not
Clean or polluted. Do I have it right?????
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Jennifer, I just read an article from a gov’t health site. There wasn’t much in the article; only that a study of 30 swimming pools were tested for mycobacteriums. 88% came back positive for M. Gordinae, M. Chelonae, M. Fortuitum, and m. Adscessus. They said these organisms were found during ALL phases of the chemical treatment cycles. That means they are resistant to chlorine. The article did not say if these pools were indoors or outdoors. We know that indoor pools are especially dangerous for these organisms. It also stated that the more people that use the pool, the more likely it is to have many bacteriums in it. M. Abscxessus is particularly nasty as it does destruction to your lungs, (causes cavities in the lung) and is extremely hard to get rid of. It is resistant to most antibiotics. I have quit the hot tubs altogether and rarely get into any swimming pools. After reading that article, I am with Katherine, I am not getting into any! I still want to learn more about MAC people and swimming pools.
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@alessandre Concerning stem-cell use, there are clinics here in the states that use them to regenerate lung tissue. Problem is, it doesn't work. Not in this country anyway. I have had many report that it did not work for them, and only one that said it did. There is no proof that it did. I know that Mayo Clinic researchers are close to isolating the t-cells that are specific to lung tissue regeneration. They have had success in animal testing and it is now in the human testing phase. I pray for the day that stem-cell therapy is commonplace and effective. If you find any links from Europe that has stem-cell info, will you please share it with us? Thanks-Terri
There was some discussion about chlorine between @windwalker @heathert and @tessie here http://mayocl.in/2rzpJEz and here http://mayocl.in/2qV8QS1
Are you an avid swimmer, Jennifer? Are you wondering if you have to give up swimming?
Hi, I'm new th this group and new to MAC. In January my new pulmonologist changed my diagnosis from the 13 year one of non-smoker's COPD (emphysema) to bronchiectasis, and although I have had a productive cough for two years, she is the first to do sputum cultures, and we discovered I have both MAC and pseudomonas. I've been treated for the pseuddomonas three times the last three months, and just started my MAC treatment this week.
I am a swimmer, used to teach swimming lessons, and am quite disconcerted about the thought of not being able to swim laps any more. I can't do laps with my head above water! When I asked my Infectious Diseases doc about it—I swam three times while in Chile in February, twice in my friend's pool and once in the Pacific, as well as once in my YWCA pool, with a last visit to the Y whirlpool, and the pseudomonas came roaring back (70%)—she did not give me a definitive answer about swimming, since there were so many variables in the recurrence
I really want to get back in the pool and swim laps, I don't know if I dare! My cultures have been susceptibility testing for five months, and apparently are still testing for some drugs, which she said means that my MAC is a very slow reproducer, and so far is susceptible to everything. This makes me want to hop back into the pool today. What are your thoughts? Also, sorry my post is so long.
@franthony, Hi there. Do you have a first name? From what I have read, most pools have a certain amount of mac in them. Public pools tend to have more than a private pool. You can always have the water tested if you want to know what you are swimming with. I don't swim much any more. Once in awhile I will get in a pool to cool off, but I never put my face near the water to avoid breathing in droplets. I shower immediately afterwards. Hot tubs are extremely dangerous for catching mac. I am certain that is where I picked up mine. We had one and I was in it every night up to my chin breathing in the evervescence (bubble pops). There is all kinds of info out there about this subject. You can Google http://www.nhi.gov for accurate information. Also, can look up Joseph Falkinham of Virginia Tech. He is a researcher of mac and has written many articles. I can tell it would break your heart to stop swimming. If you are interested in having the pool water tested, I can try to find the info again for the lab that will do it. I do remember the fee was $150.00.
@franthony Please consider avoiding the whirlpool at the Y. It is a hot tub, correct? Hot tubs are notorious for harboring LOTS of mac. Indoor pools tend to be worse than outdoor pools. -Terri
@franthony, Here is a past post of mine: I just read an article from a gov’t health site. There wasn’t much in the article; only that a study of 30 swimming pools were tested for mycobacteriums. 88% came back positive for M. Gordinae, M. Chelonae, M. Fortuitum, and m. Adscessus. They said these organisms were found during ALL phases of the chemical treatment cycles. That means they are resistant to chlorine. The article did not say if these pools were indoors or outdoors. We know that indoor pools are especially dangerous for these organisms. It also stated that the more people that use the pool, the more likely it is to have many bacteriums in it. M. Abscessus is particularly nasty as it does destruction to your lungs, (causes cavities in the lung) and is extremely hard to get rid of. It is resistant to most antibiotics. I have quit the hot tubs altogether and rarely get into any swimming pools. After reading that article, I am with Katherine, I am not getting into any! I still want to learn more about MAC people and swimming pools
Terro – would you find the info and post it again? I called about 15 water testing companies, all said "what?" (they had no idea about MAC).
Thanks – Barb
@franthony Good morning. I too went misdiagnosed for about the same amount of time as you did. I was told I had genetic COPD and treated with asthma meds. It really ticks me off that in all of those years I was never given a sputem test. I had 'pneumonia' many times, but who knows if it was really that. I had pseudomonas in the spring of 2016. After one month of tobramycin; the cough I had for 10 years went completely away and has been gone ever since. I have been on 10 day, monthly alternating antibiotics since 2013. My oxygen levels now read 96-97 whereas for yrs they were at 90-91. My dr said I will probably have to be on antibiotics for life because bronchiectasis lungs do not self clean and we pick up these bacteriums in the environment. I still have fatigue and shortness of breath with exertion. May I ask, how uour dr treated the pseudomonas and is cirrently treating your mac?
Wow! We do indeed share several similarities. It's remarkable that three different pulmononologists at the university hospital—a research institution— who all left COPD for more interesting diseases, all considered me simply a stable patient and never repeated a CT scan or did sputum cultures even after I had a productive cough for a year and a half. Hah! It turns out I am that combination of interesting diseases after all. The pseudomonas and MAC were diagnosed along with the bronchiectasis just five months ago, in January. So I have been on Levoquin three times now during those five months, and my MAC treatment started five days ago. Some of the suscepibility tests are STILL running! I'm taking Azythromycin, RifAMPin and Ethambutol three times per week. So this is all still pretty new for me.
My name is Francie. Thank you for your helpful information.
@megan123 and @franthony , I saw my pulmonologist at the Mayo today. He generously let me have extra office time with him so that I could pick his brain and try to get real answers for all of us. I value his opinion above many others. I did ask about swimming pools. He said outdoor ones should be fine. There is some mac in them, but you should be ok; especially in un-heated water and in the open air. Avoid indoor heated pools and most def Do Not Get Into Hot Tubs! He said it is the heated part that makes the indoor pools and hot tubs grow many more mac. Some outdoor pools (public) may have heavy swimmer load and not be properly maintained. Those can make you sick also. He said pseudomas and other bacterias can also be in warm pool water. That's my report on the pool issue. I will be posting other things about my very interesting trip today.
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