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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won't take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.
He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn't need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn't seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I'm afraid to ask for another pulmonologist at Kaiser, because I'm afraid they will back each other up, or at least not contradict each other.
Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn't work). I simply cannot do so, since I have no backup for my job. I'm willing to travel to one place, maybe Mayo Clinic in Rochester, MN.
If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?
Replies to "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..."
@meagan123, I would have to research back to where exactly I learned this information. I may have read ot in some of Dr. Falkingham's medical journals (Google him and you will learn a lot about mac) He is a mac researcher at Va. Tech. I may have read it or saw videos from the NTM.org group. Or possibly from a speaker that was at the conference in D.C. The information is out there, you just have to take the time to dig for it. If I run across the info in print again; I will pass it along. I will see if I can pull it up from some older posts.
@megan123, I looked back on older posts regarding this issue. You and Katherine have even had this conversation over a year ago. Katherine stated she would never get into a public pool again once she found out what bacterias lurk there. There are listed threads on our mac communty. There is one for swimmimg pools. Do you know how to use this site and find topics that we have discussed? If you don't; let me know and I will try to help. How are you doing these days? Are you clear of mac as of now?
@megan123, I Googled mycobacterium avium swimming pools and lots of info popped up. I am on my phone doing this so I don't have a lot of options for copying and pasting it to you. I am still learning ways to import info for our support group. If you want, Google it for now. I was bummed to learn that there is no completely safe place for us to enjoy the water. I have read that mac is even in the ocean!! I moved to the beach to swim in the ocean. I don't go in the ocean much here, not because of mac, but because of the large sharks they have been catching off our coast. (16 ft great whites and 12 ft tiger sharks) I am sorry but that does give me pause.
Not sure how to access it...
Yikes....that's scarey with the sharks....I'll google that site to get more info...I swim in ocean and lake at cottage, tread water, never dunk...,now I will just go in and out to cool off..tks so much for your help... going to google✌️
@megan123, Same here. I just do a quick cool off dunk and keep my head away from the water.
Hi @megan123
Here are the links to the conversation you had with Katherine and others about swimming and pools.
- Swimming in chlorinated swimming pools https://connect.mayoclinic.org/discussion/swimming-in-chlorinated-swimming-pools/
Thank you..read the posts. Still not clear on outdoor pools, oceans, lakes etc... I remembered my conversations...it seems that outdoor pools aren't great as well...probably not as bad as indoor...salt water???
Thanks Colleen✌️
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Sorry to interrupt... this is new information about swimming in outdoor pools as well. Eighty percent is harbouring Mac...it makes sense but is this some new information. I remember when it was just indoor pools. I am now on the big 3 so I will avoid pools. Can u tell me where you got this information..