MAC Reboot - After 3 Years Post Meds

Posted by BlueSplashGirl/ Carolyn @bluesplashgirl, Nov 24, 2019

Hello Group, I am glad I found you. Well, here I am again… with a reboot of MAC. Just finished my sputum tests on Monday and they called me Thursday! The CT scan was pretty evident and the sputum confirmed that it is back. After 3 years off the meds. Disappointing and (secretly) scary. However, I find a lot of comfort in knowing that it isn’t lung cancer. I smoked for about 30+ years and I have always had my lungs checked since I quit 15 years ago. That’s how we found it the first time. Anyway, like most of you have already experienced, the medication was so difficult. 18 months and I stayed faithful to taking it. I had come across another website chat group when I was contemplating go off the meds early because I just couldn’t take it anymore. Several people were discussing doing the same. I am so thankful that some of the members stressed not to go off the meds and to stick it out until the end. One member went off near the end of her time and it came back quickly. After I read that I was determined to go all the way to the finish line. And I did. I think I know why it came back and going forward I will be more careful in the environments I find myself in (I am an equestrian and spend a great deal of time in dusty, dirty barns – not always wearing a mask.) Anyway, I just wanted to say hello and give my words of encouragement to anyone who is struggling and to say thank you for all the wonderful tips and kindness you show every day. We can get through this and like I always like to say: Team work makes the dream work!

@mimdavidson
@sueinmn
Thanks Sue was going to answer this message but it got lost while writing.
But you covered everything I was going to say.
I do have a Hill Rom vest also but it's very hard for me to stay compliant but if I'm having great difficulty breathing I do.
Shari

REPLY
@mimdavidson

Hello,
My name is Mim and I live in Australia, Melbourne to be precise. I came off medication 2 years ago after 20 months on 3 antibiotics and prior to that 3 years on one.
I have joined your group because I think it has come back. I will see my Respiratory Specialist early in the New Year. I was interested to see if there were others who had got MAC a second time.
It was the Head of Infectious Diseases at one of our bigger hospitals who treated me for the time I was on 'the cocktail' of antibiotics and when he decided to stop them he said,'I don't know if you are cured and I don't know if it will come back'. I also have bronchiectasis.
Regards,
Mim.

Jump to this post

Hi Mim,
I was diagnosed with MAC and bronchiectasis 15 years ago. I was on the "Big 3" for 18 months at that time. About 10 years ago I had a positive sputum culture, again, for MAC. Because I was pretty much symptom free with O.K. pulmonary function tests and CT scans, the physicians at Mayo Clinic decided not to treat. Fast forward to today…I am now having some symptoms (weight loss, increase respiratory illnesses, chest tightness). The MAC is still there (along with a few other lovely bugs!) so we have decided to treat it again. Back on the "Big 3" starting next week. Although it isn't pleasant, I've gotten through it before, so I'll do it again! Good luck to you.
Cindy

REPLY
@mimdavidson

Hello,
My name is Mim and I live in Australia, Melbourne to be precise. I came off medication 2 years ago after 20 months on 3 antibiotics and prior to that 3 years on one.
I have joined your group because I think it has come back. I will see my Respiratory Specialist early in the New Year. I was interested to see if there were others who had got MAC a second time.
It was the Head of Infectious Diseases at one of our bigger hospitals who treated me for the time I was on 'the cocktail' of antibiotics and when he decided to stop them he said,'I don't know if you are cured and I don't know if it will come back'. I also have bronchiectasis.
Regards,
Mim.

Jump to this post

@mimdavidson Hello Mim! The recent outbreak of fires there in Australia has me very worried about some of our members who live there. People with mac /bronchiectasis can be super sensitive to smells and especially smoke. Are you alright? Do you need to evacuate?

REPLY

Happy Holidays! Merry Christmas! Happy Hanukkah! And all of the celebrations held this time of year! I hope everyone had a nice week. Still waiting for the cultures to be finalized before the Dr. puts me on the correct medication. More tired than I have ever been and now starting to lose weight from lack of appetite. That didn’t stop me from eating the chocolate, esspresso, white chocolate buttercream Buche de Noel I made. It was SUCH a harrowing experience that when I got to the buttercream I said that if that didn’t turn out (to hide the multitude of sins of the chocolate sponge) I was going to just keep it for me and my husband to nibble on. The buttercream was beautiful and fortunately, made me look like I knew what I was doing! Hahaha! It was delicious. I hope you all had lovely feasts with yummy things to enjoy. Happy New Year soon and I wish us all good lung health for 2020! Carolyn

REPLY
@bluesplashgirl

Happy Holidays! Merry Christmas! Happy Hanukkah! And all of the celebrations held this time of year! I hope everyone had a nice week. Still waiting for the cultures to be finalized before the Dr. puts me on the correct medication. More tired than I have ever been and now starting to lose weight from lack of appetite. That didn’t stop me from eating the chocolate, esspresso, white chocolate buttercream Buche de Noel I made. It was SUCH a harrowing experience that when I got to the buttercream I said that if that didn’t turn out (to hide the multitude of sins of the chocolate sponge) I was going to just keep it for me and my husband to nibble on. The buttercream was beautiful and fortunately, made me look like I knew what I was doing! Hahaha! It was delicious. I hope you all had lovely feasts with yummy things to enjoy. Happy New Year soon and I wish us all good lung health for 2020! Carolyn

Jump to this post

@bluesplashgirl Carolyn – Yum! I haven't had that in years (since the last of the French-Canadian "aunties" quit baking.) Your comment about the harrowing experience makes me more convinced than ever that I will not attempt it myself. Especially with my post-MAC resolution of simplifying my holiday baking and entertaining! My daughter was disappointed that the meal yesterday did not include our traditional Tourtiere (meat) pie because I ran out of energy. I promised its return next year if my energy allows.

REPLY
@windwalker

@mimdavidson Hello Mim! The recent outbreak of fires there in Australia has me very worried about some of our members who live there. People with mac /bronchiectasis can be super sensitive to smells and especially smoke. Are you alright? Do you need to evacuate?

Jump to this post

Hello Terri,
I live in Melbourne and so far we haven't had any fires, although we did have smoke from some of the NSW fires. The weather at present is lovely between 24 and 30 c, we did have one day of 41, same day as the smoke!
Wishing you all a Happy and safe New Year.
Mim.

REPLY
@mimdavidson

Hello Terri,
I live in Melbourne and so far we haven't had any fires, although we did have smoke from some of the NSW fires. The weather at present is lovely between 24 and 30 c, we did have one day of 41, same day as the smoke!
Wishing you all a Happy and safe New Year.
Mim.

Jump to this post

@mimdavidson So glad you are doing ok. I just read where hundreds of people were running into the ocean to escape flames. Please keep me posted on how you are doing.

REPLY
@mimdavidson

Hello,
My name is Mim and I live in Australia, Melbourne to be precise. I came off medication 2 years ago after 20 months on 3 antibiotics and prior to that 3 years on one.
I have joined your group because I think it has come back. I will see my Respiratory Specialist early in the New Year. I was interested to see if there were others who had got MAC a second time.
It was the Head of Infectious Diseases at one of our bigger hospitals who treated me for the time I was on 'the cocktail' of antibiotics and when he decided to stop them he said,'I don't know if you are cured and I don't know if it will come back'. I also have bronchiectasis.
Regards,
Mim.

Jump to this post

@mimdavidson Hello again. As you may have read already, when one has bronchiectasis; the threat of recurring mac, pseudomonas, etc., is always there. The lungs are permanently compromised. That is why I have been on maintenance meds since 2014. You can click on my picture icon and my regimen will pop up. My med plan may not be right for all patients because it would depend on your suseptibility test outcome. So far, this has kept me mac free for the last five yrs.

REPLY

Prayers and blessings to you! I'm sorry to hear your MAC is back, but you have such a positive attitude, you'll rid of it again… I will be watching for your posts and keeping track of your progress. I am new to this site. I was diagnosed in September 2017. I am currently on the "Big 3". A sputum culture is being done as we communicate and hopefully it will show improvement. Thank you all for being here, to share and comfort. Blessings to all !!

REPLY
@windwalker

@mimdavidson Hello again. As you may have read already, when one has bronchiectasis; the threat of recurring mac, pseudomonas, etc., is always there. The lungs are permanently compromised. That is why I have been on maintenance meds since 2014. You can click on my picture icon and my regimen will pop up. My med plan may not be right for all patients because it would depend on your suseptibility test outcome. So far, this has kept me mac free for the last five yrs.

Jump to this post

Hi Terri, i was doing more research as I wait to get put back on the drugs. I was a little shocked to see that it says that medication is for life. I see that you have maintenance for your MAC. Are the doctors ever worried about resistance? Also, is it common to feel very, very sore and achey in joints and muscles? Man, I fluctuate, but feel like I have been hit by a truck most days. Thanks and I hope all is well with you. Carolyn

REPLY
@bluesplashgirl

Hi Terri, i was doing more research as I wait to get put back on the drugs. I was a little shocked to see that it says that medication is for life. I see that you have maintenance for your MAC. Are the doctors ever worried about resistance? Also, is it common to feel very, very sore and achey in joints and muscles? Man, I fluctuate, but feel like I have been hit by a truck most days. Thanks and I hope all is well with you. Carolyn

Jump to this post

@bluesplashgirl I am sorry to hear that you are feeling achey and tired. Many on our site have experienced the same thing with the meds. I never did 'the big 3' because I was a sissy back then. I am on maintenance antibiotics for life because I have bronchiectasis and because of that, I will always be vunerable to infections. Fortunately, I have had no side effects. (I have been on them since 2013) At my very first dr visit, I was told that he would start me on cipro and doxycycline on alternating months for 10 days each. He did the switching of the two to prevent resistance. He also said that these meds were lower tier (as in strength) and that if my mac ever became resistant , then I could be bumped up to a stronger drug. He said for me to never let a dr put me on azithromycin, for fear of mac becoming resistant to it. He wanted to save that as the last resort of big guns just in case I caught a resistant strain of mac some day. My regimen has worked so far. I have been mac-free since 2014.

REPLY
Please sign in or register to post a reply.