I know, been told that by the docs, but, I don't feel I have any choice. Have to take my chances.

@unicorn Although I have experienced hemoptysis twice in the past 2.5 years, I do not have other symptoms other than excessive mucus and I'm otherwise pretty healthy and active with no serious underlying diseases (except bronchiectasis of course). For that reason, my pulmonary specialist told me that whether to take the antibiotics long-term would be my choice and was not mandatory. I opted for not taking them for now and would only consider it when/if my condition worsens to the point when drugs are necessary. He thought it was the right decision. As I understand you have been taking the antibiotics but not continuously. Did your doctors tell you that it was necessary when they prescribed them to you? Other than coughing up blood, are you having other symptoms? Do you have underlying diseases that make taking these drugs a necessity? I'm asking these questions because many people on this site do have other ailments that are making it necessary to control their bronchiectasis/MAC with these drugs and I'm curious whether there are those like me who have been diagnosed with bronchiectasis and/or MAC but without underlying diseases but are taking these antibiotics. If there are, what the reason for them or for their doctors to decide that they need to take these drugs.

interesting, no I don't have any other conditions, but am afraid of blood. I know when i take the drugs, I dont bleed

  @unicorn
Hi Crista. The three drug cocktail is the standard for treatment right now. They
are working on future treatments that will be nebulized only antibiotics. They
are still in clinical trials. I was diagnosed in 2005 with MAC and refused the
treatment because it is hard on the liver and two out of three drs said they
wouldn't advise treating it that way. They felt like it was only a 50/50 chance
of working and that it does not cure it and it usually comes back eventually.
So.....I chose to treat it with  antibiotics and it worked from 2005-2013.
It came back in 2013 and my dr at the Mayo decided to treat with a rotating
monthly antibiotic. I was on Cipro 500mg 2xday for ten days, then Doxycycline
500 mg 2xday for 10 days. We switched these two out every other month. Then, in
2016, test revealed pseudomonas infection. So now I am on Tobramycin nebulized
2xday for 28 days, then 10 days off, then 10 days on Cipro etc. That is where I
am at now. Have to run now. Hope this helped.
 

@unicorn Christa .. it is important to understand that mycobacterium can be "stabilized" according to Dr. Aksamit at Mayo Clinic but not "cured" .. as such we MUST be vigilant about check ups and our personal health care regime .. once those critters are in our lungs they many lay dormant .. but they do NOT go away. We must remain vigilant. Live our lives happily .. but not neglectfully. . remembering that Knowledge is Power! Hugs! Katherine

Crista, you can register with bronchandntm360social.org it is a research
foundation. They would like everyone that has MAC and bronchiecstasis to sign
the registry. That way they have numbers to work with when trying to get funding
for their research. They also need people to do clinical trials.
 

It leaves me wondering what the heck to do...after being diagnosed with MAC (& bronchiectasis) & going through what you go through after such a diagnoses (quite an emotional tolll), & being prescribed treatment & actually having meds ready, then to getting a third opinion on whether to start treatment & the expert dr saying, "no, wait until you see "it" on a CT scan"... it leaves me in a very uncomfortable place. I'm so confused...but I just try not to worry about it...which we all know, means...YOU WORRY ABOUT IT!!!

I'm awaiting the results of yet another bronch washings culture obtained May 24th. That means it will be about July 5th when I get the answer. So if it's negative, what does that mean...? We know it can harbor in areas of the lung meaning that you might not get from a culture...(am I right in saying that??). Does is make sense to wait until you see "it" on a CT scan before starting treatment?

I was told that a positive bronch washings culture showing MAC, could never be a containment. Again, I don't know if that 100% accurate, but that's what I have been told & what I have read. If it's lying dormiant in my lungs, just settting up camp, do I wait till the monster strike & then call out the big guns & treat?? That's what I am been instructed to do.

What keeps me awake at night, is the thought that these bugs are living inside me (I truly do get so worked up over this...it's the talk of many of my therapy sessions), & I have to wait until there is actual damage in my lungs before I can treat it!?!? I am in no way saying that I am taking the treatment lightly or that I'm ready to sign up....BUT I am soooo SCARED waiting around for the "possibility" of getting "attacked"!

@jentaylor, Jen, you KNOW I care about you .. BUT I am concerned that you are not reading the past pages AND educating yourself .. AND doing your "due diligence". When I read "BUT I am soooo SCARED waiting around for the “possibility” of getting “attacked”!" It makes me VERY concerned for you. Jen, I am being tough on you BECAUSE I care about you. You are putting your energy in the WRONG place. By now you should know my motto of "Put your energy into what you can control .. and LET GO of what YOU CANNOT CONTROL!"

Jen, you CANNOT control IF your reports are going to be positive or negative. What you CAN control is EDUCATING yourself about ALL of our SHARED MAC journey .. we have ALL been down this pathway. If you DON'T educate yourself you will continue to waste your energy on fear. Remember KNOWLEDGE IS POWER

Jen, OF COURSE you must " wait until you see “it” on a CT scan” .. you DO NOT go on the antibiotic treatment until it is needed! "So if it’s negative, what does that mean" .. what it MEANS .. is the mycobacterium is NOT colonizing at this point .. AND you NEED to live your life happily and serenely .. concentrating on your daughter and husband .. getting in that daily one block walk in .. NOT on what you CANNOT CONTROL .. when/if you go on the antibiotic treatment!

Jen, WHY are you concentrating on"What keeps me awake at night, is the thought that these bugs are living inside me (I truly do get so worked up over this…it’s the talk of many of my therapy sessions), & I have to wait until there is actual damage in my lungs before I can treat it!?!? I am in no way saying that I am taking the treatment lightly or that I’m ready to sign up….BUT I am soooo SCARED waiting around for the “possibility” of getting “attacked”!" .. Jen, WHY are you focusing on this instead of your beautiful daughter .. your devoted husband who has been with you through thick and thin? Jen, I know I am kicking your butt .. but after all this time I feel that "Momma" cares enough about you to remind you to start saying your 3 gratitudes EVERY morning and EVERY night .. focusing on what you DO have .. NOT what you don't have! Look around you Jen .. EACH of us can see SOMEONE who has it worse than we do! I'll be honest with you .. when you say "it’s the talk of many of my therapy sessions" .. after just a FEW meeting I personally STOPPED going to my local MAI/MAC group .. I found they had "BECOME their disease" and be darn if I was going to do that! My health is just a PIECE of who I am .. I am NOT my health!! So Jen, as someone you KNOW cares deeply about you .. you know I had to track you down! .. I want you to start educating yourself to our MAC/Bronchiectasis disease .. knowledge takes away all fear! I am taking the time to write this instead of eating dinner so you know I care about you! Get your fanny in gear .. start educating yourself instead of focusing on fear!! Big Hugs! Katherine

@jentaylor Maybe I'm taking it too lightly. But the way I see it, we humans have countless bacteria living in our bodies, some are good for us and some are not. MAC is part of that collection of bacteria, which majority of the population have no negative reactions to. We are the unfortunate few (the number may be growing these days but is still in the minority) whose bodies do not like it. But worrying about it, especially losing sleep over it, serves no purpose except making our lives miserable. For all we know, the bacteria have been in our bodies for a very long time. We just didn't know. So a few days of waiting is not going to make any difference. If your doctors suggest no drug treatment after the CT scan result is back, I would take it as the problem being not too serious. Do you have any problems like shortness of breath, fatigue, etc. that affect your quality of life? The only problem that I myself have, besides coughing up blood twice in a span of 2.5 years, is excessive amount of thick mucous. No shortness of breath and no fatigue. I have chosen to not receive drug treatment. The concern over possible damage to my organs with long-term use of the drugs trumps the concern over MAC getting treated considering there is no cure anyway. My pulmonary doctor agrees with me. Although from time to time I do think about the potential of my MAC getting worse someday and my eventually needing medical intervention, I'm determined to not have it stand in my way of seeking a happy and productive existence for as long as I possibly can. I hope you'll be able to think of things to do that will make you happy and take your mind off of MAC while waiting for the test results.Take care.

@ling123, Ling, thank you for your good advice. As long as you get regular check up and the mycobacterium is "stable" .. there is absolutely no reason to treat .. and when "My pulmonary doctor agrees with me" that means you are working together. Personally I did not go on the antibiotic treatment until I got a second mycobacterium .. unfortunately it was a nasty one .. Mycobacterium Abscessus .. then there was no option. I SO agree with you .. "I’m determined to not have it stand in my way of seeking a happy and productive existence for as long as I possibly can." YEAH for you! Hugs! Katherine