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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hey @soflo take some time to look through the posts here...you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far....I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc...if s/he won't do anything but the big 3, find another doc.
Replies to "Hey @soflo take some time to look through the posts here...you will find many alternatives to..."
Yes thankyou so much for responding. Wow, you are taking antibiotics for over 2 years? Hope you are doing well :)... I don’t want to continue with the 3. I want to be as proactive as I can so that I can have a good/decent quality of life but I am so overwhelmed at times and don’t know what to listen to 🙁
Do you have a fb group? I wish you would :)....Things like this are easier when you know you are not going through it alone.
@bleo Hi Betty. How are you feeling?
@soflo I could give you better suggestions if I knew more about where you are with your disease. How sick are you at the moment? Do you have bronchiectasis?
@soflo, First and foremost, if you are not doing the nebulized saline treatments, you probably should be. It is straight up salty mist, not a medication. Research shows that this does help in making the mac recede. My dr has me on 7% sodium chloride (saline).
Yayy Terri on the fb page
Stupid question, I just stumbled across all of you so when I get off how do I get back in the group. You are all amazing and I am thankful that I now can share with others. Terri I live in South Florida and yes I have bronchietsis as well. Oh and how can I get started on the saline treatment?
Sorry, I’m responding all over the place. I do have bronchiectasis. I took three pills for two weeks but I couldn’t continue. I have a hard time breathing sometimes, I am very tired at times after work so I nap, I cough up mucus in the morning but I don’t have a cough. I told my drs that I do get a chill through my body once in while and I get night sweats at times.
Hi @soflo, welcome to Mayo Clinic Connect. You are following the MAC group and should be receiving email notifications when now posts are made. Here is the link to the MAC & Bronchiectasis group: https://connect.mayoclinic.org/group/mac-bronchiectasis/
There's a lot of information archived in the many discussions. Members are very helpful and informed in this group and ready to answer your questions.
To get the most out of Connect, you can find more tips on how it works here: https://connect.mayoclinic.org/get-started-on-connect/
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@ boomerexpert, Thank you for stepping up to answer @soflo. I hope that you are doing alright.