Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

I am guessing @erikas that most of us have felt “alone” on this journey at one time or another due to there not being knowledge or understanding or needed support among friends or family. There are even physicians who don’t “get it.” How many of us actually knew what MAC/MAI was prior to being diagnosed? This forum provides that emotional support and validity about this disease for so many not to mention the wealth of knowledge we glean here. I think the pandemic adds stress all around. irene5

Thank you Erika & Irene. Erika, I am not alone...I have the most adoring and present husband who is participating and supporting me every minute of every day. Two most amazingly gorgeous and dedicated adult daughters who smother me with attention and love ...Irene nailed it. MAC the ghost from past centuries...”the consumption...phthisis...tuberculosis...” had gone quiet in this country. Vanished with other bacterial and viral maladies with our evolution in healthcare and lifestyle....pretty much a remnant that still haunts are neighbors in the underdeveloped countries in undocumented numbers. This I know because I have had the blessing of living in Central & South America as a child.

The aloneness is navigating the narration (because I have never had to do it)...in creating the storyline to tell friends & loved ones what I’m now going through, the explanation (that doesn’t exist), the plan (which could fall apart in a minute if I do not tolerate the meds), the prognosis (which is an uncertain outcome), and what I am reading and hearing from all of You....beautifully supportive strangers that have come together. Honestly, this forum scares me...I understand the selfless gift of giving of personal experience, but reading the details of your treatments and setbacks...is depressing me.
Blogs and forums give much information...but do not reveal our life’s character...our nature that can only be formed by our individual life experiences. I am a stranger to all of you...but those that know me in my life...know me as a problem solver, director, dictator, giver, best friend, first there last to leave, show me the facts person, that must live with reality illuminated by the light and positive possibilities. I can deal with a poor outcome, but It will be last with resolution and surrender. I have to act, pronounce and believe in a successful end. I must remain in light and hope; the alternative is my darkness...the kind of darkness each and everyone on this planet has felt and lived at some time during their existence.

So you received more than a quick answer I know...but I have been doubtful about my participation in this forum.
I pray everyone of you find wellness...of body, mind, and soul.

@cmi Please consider staying with us - your personality sounds very much like mine, as does your family. My first months after the MAC diagnosis were marked by fear, insecurity & depression, then I found Connect. Like you, I was overwhelmed by the frightening details and unsure if I could continue. Then I looked "under the hood" and realized that most of the people here were projecting hope, and determined to live their best possible lives. When you see the "depressing" parts, please realize that we are often venting, or asking for help, from the only people who can really understand what we are experiencing.

Over time, I developed a philosophy. I decided to live my fullest possible life with bronchiectasis and MAC, taking prudent precautions, but not allowing it to rule my life. My body tolerated the meds for 18 months, not well, but enough to get the infection under control. From this forum, far more than from my doctors, I learned how to cope with medication side effects, the importance of daily airway clearance, the efficacy of 7% saline nebs, and the absolute necessity of finding the best possible care team and advocating for myself (even though this did get me "fired" as a patient by my first pulmonologist.) I also found this group to be much more of a source of research-based information that a typical blog since it is moderated both by Mayo staff and volunteer mentors.

Now, with the MAC controlled but not cured, I take obvious precautions, like not using hot tubs, keeping my equipment clean and avoiding sick people, but I have made the personal decision not to curtail travel or visits with my grandchildren. Others whose disease is worse, or who have other major concerns, may take more.

Whatever decision you make about continuing to visit us, I wish you all the best in your treatment.
Sue

@cmi I had to respond to your post because first I wanted to say what a beautiful writer you are and are able to articulate everything you feel in such a beatiful and truthful way....something I've never been able to do. I joined this forum four years ago and was a deer in headlights after being diagnosed and had never smoked and had no lung disease ever in my family. I hesitated for years to write much because I just didn't feel I was smart enough. I was amazed at how smart and helpful these "beautiful and supportive strangers" (as you call them), our wonderful and smart mentors like Catherine, who has passed away and now @windwalker and @sueinm and others who just continue to pass on their knowledge and help us. Secondly, I felt the exact same way at the beginning when I joined and could never articulate it but you just did...."this forum scares me...reading the details of your treatment and setbacks...is depressing me." It was so depressing to me in the beginning reading all of these strangers treatments and setbacks but now, four years later, I read everything with great anticipation hoping to glean some new little piece of information from everyone. I have learned so much from these "beautiful strangers" that it's uncanny. Especially how to be your own best advocate. Now when I doctor says no to me or doesn't want to give me something I want I keep looking for someone else that will. And I think the 7% saline solution is a game changer. I had to tell my pulmonologist about it and that I wanted it!
So I was doubtful in the beginning about my participation in this forum, like you, but now am not. I still don't write too much (because if I wrote you like you I would write a lot more!) but I read everything. Hang in there. I'm grateful for these beautiful, supportive strangers. Nan

Nannette and Sue, the encouragement is very appreciated. I too vow to live life fully, and Nan you sound like the strong advocate I worked as in healthcare for years as a Medical Interpreter...doctors either loved or hated me...
For right now, I will remain in appreciative mode...for each one of you...for advice or suggestions...I’d like to know if anyone has or knows of anyone that has banished this evil bacterium...for good. I have a phone conference with the National Jewish Hospital in Denver CO...sometime between today and Thursday.

All be well.

Do you think one needs to nebulize if you can get up sputum?? I know I have some impacted areas in the lower lobes, even after surgery. Do you think it needs to be done every day if I also do chest percussion and the aerobica twice a day? I haven't had to take the big 3 so far because I'm so allergic to antibiotics.
I live in upstate NY. How do you find a pulmonology nurse?
Any replies are much appreciated.
Ellen

Hi Ellen - My docs (ID and pulmo) as well as NJH recommend nebulizing for a number of reasons. I would consider it especially useful if you are trying to avoid use of antibiotics (it is the reason I use it - I have MAC and the meds were causing me many problems.)
The saline thins the mucus and makes it less sticky, thereby causing it to move better - the longer it stays in its warm, cozy environment (your lung) the more bacteria can set up a colony and grow.
The saline inhibits the film that forms to protect the bacteria.
There is some evidence that 7% saline inhibits the growth of MAC bacteria.

As for finding a nurse with experience in pulmonology, contact your pulmonologist - if his is not experienced, perhaps he can refer you through the respiratory therapists in your hospital - a friend in Nebraska sees the RT because there is no experienced pulmonology nurse near her.
Sue

@cmi I’m sure it must seem a bit overwhelming and depressing to read about others treatments. But there are those of us on here who don’t take any antibiotics. Some of us just exercise and watch what kinds of foods they eat, some of us just do lung clearance exercises, some inhale 3 or 7 % sodium chloride, and some do a combination of the above. We may all have bronchiectasis and/or NTMs but are all on different journeys with our disease. Personally, I come on for support and to know that IF I have to go on medication I know there is a place and people who are here to help me navigate. For me when I say “bronchiectasis” and people have never heard of it, I just say “kind of the opposite of asthma, bronchial tubes stay open instead of close up, causing mucus to build up making it hard to clear or breathe.” I know it’s a very simple description but its close enough. Some people ask for more info or clarification and others understand it it.
I think we’ve all felt as you do at some point.

Thank you for your reply, Sue.
Where do you buy the 7% hypertonic saline?
Have you done the nebulizer with the aerobica attached? Do you need the 7% ?
Ellen

Ellen, I’m no Sue when it comes to knowing a ton of stuff about what ails our lungs. But I can tell you this about 7%. I buy it at a pharmacy with a Prescription from my Pulmo, only because I have Medicare Part D which makes it affordable. I’m not absolutely sure, but I think it’s available from Amazon; I’v bought 0.9 from Amazon. I’m not sure if 7% is available there but it’s worth checking.