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?????
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
The last pulmonary Dr I had was poorly informed and overall a lousy Dr. I’m hoping this new Dr will be better. I guess this is an area that hasn’t been clearly stipulated in this forum. In Toronto, there
Isn’t the expertise u have at Mayo or National….so u can’t just ask an infectious disease Dr. The pulmonary Drs tend to cover both MAC and Bronchiectasis. For now I won’t go underwater.
Again, tk u Katherine fit your help. U have been thru so much, yet u find the time to still help…. I was a SocialWorker, recently retired ….now I need the help, as do u❤️
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Don’t know if you are interested .. but .. Hugs! Katherine
from my File Cabinet
Canadian Citizen As a Canadian citizen, here are some frequently asked questions for patients from Canada, including what to bring and how Mayo would work with your provincial plan http://www.mayoclinic.org/canada/faq http://www.catie.ca/fact-sheets/infections/mycobacterium-avium-complex-mac
Thank you Katherine❤️
From My File Cabinet .. Hugs! Katherine
SWIMMING POOLS AND HOT TUBS https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3949190/ MAC is ubiquitous in distribution. It has been isolated from fresh water and salt water worldwide.
https://patient.info/doctor/mycobacterium-avium-complex This can occur in those exposed to water vapour containing MAC (commonly in poorly maintained indoor hot tubs or swimming pools).
2017 Per @windwalker Terri When I was at the convention in DC, the experts there said that chlorine actually concentrates MAC and that some species have become resistant to it.
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.
No more swimming in indoor pools. Going to Mexico in a week. Will be very aware of info given. I will cool off but quickly. I guess my swimming days r cut back. No more under water…hot tubs I never do now. So sad….
It is SAD! I hear you girl! I used to own a hot tub, and love outdoors and swimming. I think in a certain circumstance, I too would do a quick dunk too. It is hard not to. If I had M. Abscessus, like Katherine, NO, I absolutely would not! It is all about the the bacterial load from what I have read.
@rosemarya Here is the info about what lurks in swimming pools and hotubs. Can also be in your water pipes in the home. Bathing in tub generally safer than showering because the bacteriums that multiply in the shower head escape by the steam from the shower and get inhaled.
@megan123 I know Megan. It is a huge bummer. I have to admit that I did get into a pool the last two days. I kept my head totally away from the water. I floated uprigt in an inner-tube. I did this out of sheer desparation as I have been suffering a pinched nerve in my back for the ladt three weeks. This was the only way to relieve the pressure on it and the pain. I stayed in an hour each time and bathed immediately when I got home. I know you will have a blast in Mexico. Stay safe!
Can anyone recommend a good shower/filter for bacteria AND chloride AND fluoride or am I dreaming? Well into my 70s, I've had bronchiectasis for almost 25 years with low energy, chronic fatigue; MAC probably last 5-10 years; hospitalized 2002, 2006, 2013. Just take an antibiotic when in an otherwise uncontrollable episode. Use vibratory device nights for postural drainage. Eat well, lots fruits & veggies; take supplements, homeopathics, herbs – latter particularly to keep episodes from becoming severe. Wish I was in Europe where stem cell therapy is in sanctioned use, but can no longer take planes.
@alessandre , Hello, and welcome to connect. I will poke around and see what I can find in past posts about filters. I don't think the micron showerhead filter work against flouride and chlorine. Those may have to be erradicated at the incoming source of water into your house; like a reverse osmosis type of filter. Wow, 25 years of fighting mac! I used to be only treated intermittantly with antibiotics and would end up in the hospital 2x a year. Now, the Mayo has me on monthly rotating antibiotics. Do them 10 days a month. Been doing it since 2013. It has been two years and half since I have had to go to a doctor for illness or ER, and no more cough. The world Mac conference I went to in D.C. in 2016; he Mac specialists from around the globe all agreed that it takes longer duration on antibiotics to treat this. I hope you will go to the 'Discussion' page and read through the various topics. Also, reading over old posts written by @katemn will provide lots of valuable info. In fact, she is the one that had info about water filters. Please feel free to ask questions or share your experiences with mac. After having it for 25 years you probably have a lot to say about it. In case you don't find the post on filters, I will look also. By the way, do you have bronchiectasis also?
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