Hi Sue,
For the time you have known about MAC lung disease and helped people and known about the side effects of the big 3 antibiotics, have you heard or known anyone who has been hit with blindness, color blindness, or loss of central vision, or other vision issues by taking Ethambutol?
All those are scary but rare side effects. Be sure to set irregular appointments with your eye doc (I also have glaucoma, so mine were every 3 months) and be sure they know about the Ethambutol. If you have any change in vision, stop the drug and see the eye doc right away.
The same applies to Rifampin and hearing. You should have a baseline audio check before you begin, then every 6 months. Any changes, stop the drug and call your doc.
And remember that a short pause to get checked and change drugs is not a big deal. MAC is very slow growing.
Have you been told yet how often they will be rechecking your sputum? And have you had your eyes and ears checked?
Sue
Hello, this may be one of the most asked questions in the MAC discussion group. If you click the link below, you'll find a lot of helpful information. https://connect.mayoclinic.org/discussion/starting-mac-drugs/
Do you mind telling us how your MAC was diagnosed, and how you found Mayo Connect?
Sue
When you say "a trip to the beach", which do you mean?
The ocean & gulf beaches are not considered to carry much risk because the saline water is inhospitable to NTM/MAC.
That said, many of us in this group spend time on or near fresh water every year. I spend a lot of time paddle boarding & playing on Midwestern lakes all summer. I take the single precaution of keeping my face out of and away from the water. That means no tubing, diving, etc, but I look forward to pontoon boat rides and picnics on the shore. (Hard not to explore the underwater with my littles, so occasionally I will don a mask and snorkel for a quick look.)
I am sure there is some risk involved, but since NTM/MAC is everywhere - air, water & soil - it is impossible to be completely safe. I just stay conscious of high risks & take precautions - like masks when I garden, and keeping the soil moist to reduce particles in the air.
AND I definitely continue 7% saline nebs and airway clearance to make my lungs inhospitable to MAC. Written as I puff & cough!
What level of risk do you find to be acceptable? Have you asked your doctor about visiting the lake?
Sue
I was told that swimming pools and steam rooms are a no-no. Swimming in ocean water is ok, however, due to the fact that the bacteria can't survive above 3% salinity.
Many recommend avoiding pools and spas, especially indoors. There is evidence that MAC can be present in pools, and especially spas. Some say it may also be present in lakes & even the ocean.
Every person is different, faces decisions about what is important to them and their mental health and has a different risk tolerance. This is a question to discuss with your doctors.
I discussed the risks at length with my ID doc and my primary, and formed my own strategy. I avoid all indoor pools and all spas/hot tubs, steam rooms and saunas (if water is used to create steam). I swim and exercise in an outdoor saltwater pool, the Gulf of Mexico and the Atlantic ocean. I play with grandkids, boat and paddleboard on freshwater lakes. This plan is based on my personal risk tolerance and seems to work for me.
What kind of swimming/activity are you considering?
Sue
Thanks for your reply. I like to swim laps in the pool as part of an exercise program. It’s an outdoor pool in the condo complex. I also like to do water aerobics. I go swimming in the gulf often right now as the water is perfect! I’ll be moving to AZ at the end of June and wanted to get my fill of the ocean. I’ve always been a water person. I agree you have to decide what feels right to you. I have very mild symptoms and currently just using nebulizer, Aerobika and exercise along with yoga and meditation. I don’t plan to start the big 3 until I have established a new PCP, pulmonologist and ID doctor. I have a feeling this is not going to be easy and the wait time for an appointment could be months. Any suggestions? Thanks again.
MAC has been a real nightmare - on the Big 3 over 6 months now - waiting and praying that this will work. so far - mmm not so good. I'll stick it out as I have no real choice. Any tricks or things I can take to feel better - I'm open!
I completely understand. I have been on the Big 3 for over a year. Are you taking a probiotic? Eating saltine crackers also helps with the upset stomach......but definitely take a probiotic. I take Florastor. It is an excellent probiotic. Good luck and stay with it. I just had my 2nd negative sputum culture. I have 10 months to go to stay on the Big 3.
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All those are scary but rare side effects. Be sure to set irregular appointments with your eye doc (I also have glaucoma, so mine were every 3 months) and be sure they know about the Ethambutol. If you have any change in vision, stop the drug and see the eye doc right away.
The same applies to Rifampin and hearing. You should have a baseline audio check before you begin, then every 6 months. Any changes, stop the drug and call your doc.
And remember that a short pause to get checked and change drugs is not a big deal. MAC is very slow growing.
Have you been told yet how often they will be rechecking your sputum? And have you had your eyes and ears checked?
Sue
Thanks a BUNCH Sue.
Regarding starting the Big 3 medications, my doctor just said take all 6 pills at one time.
Yes, to both exams. I had an Ophthalmology visit 2 weeks ago and had Hearing test about 1 month ago.
Regarding sputum tests, I believe this will happen once a month. Is there a good way to get more sputum out when coughing?
Thanks so much for your suggestions for me.
Have a good day today.
@kmescherich, as Sue suggested, you'll find many helpful posts in this discussion:
- Starting MAC treatment with "big three" drugs: What to expect? https://connect.mayoclinic.org/discussion/starting-mac-drugs/
I moved your post to the existing discussion so you can connect with many.
As you prepare to start treatment, you may also find these related discussions useful:
- Just started big 3 for MAC: Questions about dosing and more https://connect.mayoclinic.org/discussion/just-started-the-big-3-for-my-mac/
- MAC Antibiotic Medication: What time schedule works best for you? https://connect.mayoclinic.org/discussion/medication/
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2 ReactionsThank you Colleen for your help.
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1 ReactionHi Sue. Wondering if public pools or community pools are safe to swim in with someone who has MAC
I was told that swimming pools and steam rooms are a no-no. Swimming in ocean water is ok, however, due to the fact that the bacteria can't survive above 3% salinity.
Many recommend avoiding pools and spas, especially indoors. There is evidence that MAC can be present in pools, and especially spas. Some say it may also be present in lakes & even the ocean.
Every person is different, faces decisions about what is important to them and their mental health and has a different risk tolerance. This is a question to discuss with your doctors.
I discussed the risks at length with my ID doc and my primary, and formed my own strategy. I avoid all indoor pools and all spas/hot tubs, steam rooms and saunas (if water is used to create steam). I swim and exercise in an outdoor saltwater pool, the Gulf of Mexico and the Atlantic ocean. I play with grandkids, boat and paddleboard on freshwater lakes. This plan is based on my personal risk tolerance and seems to work for me.
What kind of swimming/activity are you considering?
Sue
Thanks for your reply. I like to swim laps in the pool as part of an exercise program. It’s an outdoor pool in the condo complex. I also like to do water aerobics. I go swimming in the gulf often right now as the water is perfect! I’ll be moving to AZ at the end of June and wanted to get my fill of the ocean. I’ve always been a water person. I agree you have to decide what feels right to you. I have very mild symptoms and currently just using nebulizer, Aerobika and exercise along with yoga and meditation. I don’t plan to start the big 3 until I have established a new PCP, pulmonologist and ID doctor. I have a feeling this is not going to be easy and the wait time for an appointment could be months. Any suggestions? Thanks again.
MAC has been a real nightmare - on the Big 3 over 6 months now - waiting and praying that this will work. so far - mmm not so good. I'll stick it out as I have no real choice. Any tricks or things I can take to feel better - I'm open!
I completely understand. I have been on the Big 3 for over a year. Are you taking a probiotic? Eating saltine crackers also helps with the upset stomach......but definitely take a probiotic. I take Florastor. It is an excellent probiotic. Good luck and stay with it. I just had my 2nd negative sputum culture. I have 10 months to go to stay on the Big 3.
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Helpful -
Hug
1 Reaction