1. < MAC & Bronchiectasis
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MAC treatment do or not do

Posted by Edie @eespoor, May 5 10:21pm

I am 86 and have just been dx with MAC. I would appreciate honest responses please. My pulmonologist is talking starting the 3 antibiotics treatment for 18 months. The side effects I have read about worry me at my age. I also have congestive heart failure. I am fairly active but do get fatigue easily. I am not convinced the side effects are worth the possible cure as I also understand it can come back. Confused

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Edie | @eespoor | May 20 2:50pm
In reply to @pmmar1 "@blm1007blm1007 : I am 81 years and was diagnosed with MAC/BE/Apiotrichum Mycotoxinivorans fungus 3 years ago...." + (show)
Profile picture for pmmar1 @pmmar1

@blm1007blm1007 :
I am 81 years and was diagnosed with MAC/BE/Apiotrichum Mycotoxinivorans fungus 3 years ago. I also have repeated hemoptysis episodes. I began taking the Big 3 and within 2 weeks I started smelling sewage/tasting metal. I replaced everything in my 12-year-old home that might be causing a sewage smell, like the disposal, ejection pump, etc., and then about $4000 later I discovered it was the Azrithromycin that caused this issue when I had a follow up visit with my ID doctor. These are very rare side effects of the med. Thus, I went off the drugs and within a couple of weeks, I was/am having a quality of life, though not ideal by any means, but a life which I'm not willing to give up by making it worse.

I have no idea how long I have to live, none of us does, but my family has longevity -- mother, 101; father, 96, and I have every intention of making a similar milestone(s). I keep busy and don't focus on my health issues. I have doctors who are supportive of my decision and we are "watching and waiting" -- for what, I'm not sure, but I am realistic too, knowing my grand intentions may not be met and I am willing to accept that too! Wishing you well!

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@pmmar1 Ouch. Sorry you went through all that! You do make me feel I made the right decision not to do the Big3. So far I am maintaining my normal life style (slow and easy). 😁. Hope you have many more good years!

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jackie7926 | @jackie7926 | May 20 3:37pm
In reply to @eespoor "@hbarbh That had to be a terrible 3 years! Thanks to some intense research and the..." + (show)
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@hbarbh That had to be a terrible 3 years! Thanks to some intense research and the comments on this site I have decided not to do the 3 antibiotics therapy. At 86 I would rather have a shorter quality life than 3 years+ being miserable and sick. Prayers for you. 🙏

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@eespoor I have done the 3 antibiotic treatment 3 times. Mac comes back, at least in my case. I have had some stomach issues and temporary hearing loss. I don’t believe I will go back on them again. I just don’t feel good when on them and I’m with you, I want whatever time I have left to enjoy being alive. I also have bronchiactisis and was diagnosed a few years ago with CF. I am 71 years old. My motto is do as much as you can while you can. I hope your symptoms don’t get any worse and you are able to live life like you want. Best wishes!

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blm1007blm1007 | @blm1007blm1007 | May 20 7:05pm
In reply to @pmmar1 "@blm1007blm1007 : I am 81 years and was diagnosed with MAC/BE/Apiotrichum Mycotoxinivorans fungus 3 years ago...." + (show)
Profile picture for pmmar1 @pmmar1

@blm1007blm1007 :
I am 81 years and was diagnosed with MAC/BE/Apiotrichum Mycotoxinivorans fungus 3 years ago. I also have repeated hemoptysis episodes. I began taking the Big 3 and within 2 weeks I started smelling sewage/tasting metal. I replaced everything in my 12-year-old home that might be causing a sewage smell, like the disposal, ejection pump, etc., and then about $4000 later I discovered it was the Azrithromycin that caused this issue when I had a follow up visit with my ID doctor. These are very rare side effects of the med. Thus, I went off the drugs and within a couple of weeks, I was/am having a quality of life, though not ideal by any means, but a life which I'm not willing to give up by making it worse.

I have no idea how long I have to live, none of us does, but my family has longevity -- mother, 101; father, 96, and I have every intention of making a similar milestone(s). I keep busy and don't focus on my health issues. I have doctors who are supportive of my decision and we are "watching and waiting" -- for what, I'm not sure, but I am realistic too, knowing my grand intentions may not be met and I am willing to accept that too! Wishing you well!

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@pmmar1 I remember reading your story about the sewer line etc. much earlier and thought of all you went through, the costs and all you probably thought of in hindsight. Live and Learn....but it can be costly.
Living a long life is just fine if we aren't it pain, have all our senses, can take care of ourselves, able to get ourselves to the doctors etc. etc. and have the money to take care of all we need to pay for in living that long life.
My intentions.....stay positive and hope for all to fall in place in a clean peaceful setting in a peaceful way. The only thing for sure, as has been said time and time again: The two things in life for sure, Taxes and Death.
Back at You....wishing you well.
Barbara

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cousteau1827 | @cousteau1827 | May 20 9:52pm
In reply to @cd33 "@eespoor I agree with your decision. You said you have congestive heart failure also which may..." + (show)
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@eespoor I agree with your decision. You said you have congestive heart failure also which may play a role in your decision but on the flip side not all have to do 3 years on the drugs. Most do 18 months. The rule is continue for 12 months once you get a negative result. I did 14 months. I had a few reactions to the drugs. Towards the end I wasn’t happy with the stomach cramps and time spent on the toilet and vomiting. I probably won’t do the drugs again if the MAC comes back. I’m 67 but quality of life is more important to me too. Best wishes to you on the rest of your journey in life.

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Hi, I am 72 and didn’t realize I had a bacteria and fungi infection until a cat scan. My only symptom was a smokiness daily at the back of my throat. I had a terrible reaction to the Rifabutin after two doses and had to stop. Now just taking the two meds…Azithromycin and Ethamabutol. I
just read that salt therapy is good for the lungs. Has anyone used this treatment?
Thank you

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3 replies
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cd33 | @cd33 | May 21 12:42am
In reply to @cousteau1827 "Hi, I am 72 and didn’t realize I had a bacteria and fungi infection until a..." + (show)
Profile picture for cousteau1827 @cousteau1827

Hi, I am 72 and didn’t realize I had a bacteria and fungi infection until a cat scan. My only symptom was a smokiness daily at the back of my throat. I had a terrible reaction to the Rifabutin after two doses and had to stop. Now just taking the two meds…Azithromycin and Ethamabutol. I
just read that salt therapy is good for the lungs. Has anyone used this treatment?
Thank you

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@cousteau1827 hi, no haven’t heard of salt therapy unless you are referring to saline nebs? I also had reaction to rifampicin at 11 month mark and ethambutol at 1st dose which we stopped after 18 days. Been on clofazimine and Azithromycin only since 11 month mark now stopped all after 14 months

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blm1007blm1007 | @blm1007blm1007 | 6 days ago
In reply to @cousteau1827 "Hi, I am 72 and didn’t realize I had a bacteria and fungi infection until a..." + (show)
Profile picture for cousteau1827 @cousteau1827

Hi, I am 72 and didn’t realize I had a bacteria and fungi infection until a cat scan. My only symptom was a smokiness daily at the back of my throat. I had a terrible reaction to the Rifabutin after two doses and had to stop. Now just taking the two meds…Azithromycin and Ethamabutol. I
just read that salt therapy is good for the lungs. Has anyone used this treatment?
Thank you

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@cousteau1827 There has been discussion on this Mayo Connect on one of the threads but I am not sure which thread.
Hopefully someone who may have done the salt room therapy or knows more about it will find your post question.

I have not tried it but do know about it. Some people have and do the salt room however others prefer to avoid it.
I think some of the things to consider, but not all, are the cleanliness of the salt therapy room and how well they manage it and then protecting yourself by masking if others are in one room with you.
Barbara

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1 reply
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Mentor
Sue, Volunteer Mentor | @sueinmn | 6 days ago
In reply to @cousteau1827 "Hi, I am 72 and didn’t realize I had a bacteria and fungi infection until a..." + (show)
Profile picture for cousteau1827 @cousteau1827

Hi, I am 72 and didn’t realize I had a bacteria and fungi infection until a cat scan. My only symptom was a smokiness daily at the back of my throat. I had a terrible reaction to the Rifabutin after two doses and had to stop. Now just taking the two meds…Azithromycin and Ethamabutol. I
just read that salt therapy is good for the lungs. Has anyone used this treatment?
Thank you

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@cousteau1827 Are you referring to nebulized saline solution?

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lilianna | @lilianna | 6 days ago

I really believe it’s your decision based how you feel and how much of short breath and tight chest and cough you can take. I could not live with a constant horrible dry cough that made me gag and made my chest hurt. So I chose to be treated for MAC. It wasn’t easy but I survived. Good luck with your decision.

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1 reply
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Mentor
Sue, Volunteer Mentor | @sueinmn | 5 days ago
In reply to @blm1007blm1007 "@cousteau1827 There has been discussion on this Mayo Connect on one of the threads but I..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

@cousteau1827 There has been discussion on this Mayo Connect on one of the threads but I am not sure which thread.
Hopefully someone who may have done the salt room therapy or knows more about it will find your post question.

I have not tried it but do know about it. Some people have and do the salt room however others prefer to avoid it.
I think some of the things to consider, but not all, are the cleanliness of the salt therapy room and how well they manage it and then protecting yourself by masking if others are in one room with you.
Barbara

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@blm1007blm1007 Don't you think you would loose the benefit of inhaling the salt particles if you are wearing a mask?
Also, I talked to my pulmonologist, and her take was, "It probably can't hurt, but there is not way to measure the amount of salt, nor how deep it gets into your lungs. Saline nebs are more predictable."

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1 reply
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blm1007blm1007 | @blm1007blm1007 | 5 days ago
In reply to @sueinmn "@blm1007blm1007 Don't you think you would loose the benefit of inhaling the salt particles if you..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@blm1007blm1007 Don't you think you would loose the benefit of inhaling the salt particles if you are wearing a mask?
Also, I talked to my pulmonologist, and her take was, "It probably can't hurt, but there is not way to measure the amount of salt, nor how deep it gets into your lungs. Saline nebs are more predictable."

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@sueinmn Yup ......you sure would lose the benefit of the salt therapy room if you were wearing a mask. Wow .......was my thinking cap not on! I wear the mask so often in public, but it wouldn't benefit in a salt therapy room for sure.
Nebulizing the saline is very important for me....
Thanks for reading and getting me to see what I posted.
Barbara

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