1. < MAC & Bronchiectasis

Managing MAC without antibiotics

Posted by desperada @desperada, Aug 16, 2018

I have just been diagnosed with MAC and Bronchiectasis. I am already mostly deaf in one ear with RAGING tinnitus, I am plagued daily with horrific headaches, I have fibromyalgia, stenosis in the neck and spine and have vision problems. I also have anxiety disorder. I have had C-Diff four times from antibiotics, so my gut is pretty much ruined. EVERY SINGLE DAY is rife with suffering. I am not going to add suffering from these antibiotics that will be exacerbating every single affliction I have to the point of being totally intolerable. Taking these antibiotics scares me to death! The only thing that has stopped my trembling is the decision just to opt not take them. and believe me, the Pulmonologist just gave me brutal hell over MY decision. He was just mean, and I was crying more over his attitude, than having the actual sickness.
My husband just passed away in November, and we had no children. I haven't even finished dealing with his death, I'm still in bereavement therapy, and now i find myself having to plan for mine!
I am not willing to suffer the side effects of these totally toxic antibiotics. I have had a pretty good life. I am 71. No one lives forever.
I am really at peace and content to just enjoy the days I have, and I feel relieved I can just plan to get myself into Assisted Living and let things run their course.
I am totally fed up with the horrible care and berating I'm getting from my doctors with the exception of my PCP. I live in an area where the health care is not that great, and everyone just kind of gets by.
I am using CBD edibles and they actually suppress my coughing and keep me relaxed without being impaired.
My disease right now is not that debilitating, but I know that will be changing.
The thing I am finding out is that there is absolutely no predictability. No one knows how the disease progresses - each person is different. Not everyone "tolerates" the antibiotics, and not everyone has a positive outcome with them.
I have two little dogs - I walk them EVERY day - no matter how I feel. And it takes "activity" just taking care of myself on a daily basis.
I have never been a martyr. This is not a fight I want to participate in.
My support is practically nothing - I have to do the best I can completely on my own.
There are so many, many brave, driven people sharing their experiences here and I take huge comfort knowing this disease is not just mine and I am not being victimized or punished nor the only one going through this.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 20, 2023
In reply to @maritomi "Thank you everyone for your posts. I currently saw my ID doctor and really like his..." + (show)
@maritomi

Thank you everyone for your posts. I currently saw my ID doctor and really like his suggestions. I was also told that I do not have any cavities. The size of the area is 7.4cm which seems really large but there were no cavities so I was relieved. They are on both my right and left upper lobes. But he said they don't look bad. So recommended that I do the nebulizer with saline only. He didn't want to start me on the antibiotics yet which I was happy to comply with.
Anyway, since this thread is basically for those who have MAC with cavities and bronchiectasis I will be leaving this site. But I truly appreciated everyones input. Thank you again and stay safe as the covid variant seems to be spreading quickly.

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Oh my NO, @maritomi this group is for everyone living with MAC and/or bronchiectasis. These are ever-changing conditions, and issues can crop up quickly with something as simple as a bad cold.
Do feel free to visit anytime you have questions.
Sue

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 20, 2023
In reply to @maryjanechilds "I have RA as well and I had to get off my RA meds (except for..." + (show)
@maryjanechilds

I have RA as well and I had to get off my RA meds (except for hydroxychloroquine) in order to boost my immune system to fight the MAC infection. My primary care doctor prescribed Low Dose Naltrexone as a possible aid to fighting RA flares during my MAC treatment. Still in the early stages but I think it is helping. I was on Humira which suppressed my immune system and unfortunately was one of the reasons I became susceptible to MAC. There’s lots of info online regarding LDN.

Mary Jane

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Hi Mary Jane - I had never heard of LDN until this past Spring, when the pain rehab clinic started my husband taking it. He has RA, diabetes and chronic kidney disease so most RA meds are "off the table" for him. He just suffered (and not silently!)

LDN has been very helpful to him - with his pain doc and our PharmD (part of the pain rehab group) - he has titrated to the best dose for him. It has been life-changing for him - he is back in our lives instead of watching from the sidelines,

Let me mention, to get the best relief he takes a divided dose - one in AM, one near supper. This is not common, but it helps more than a higher dose once a day. You may want to keep it in mind as you work to get the most effective control.
Sue

REPLY
1 reply
Rick | @rstel7272 | Aug 20, 2023
In reply to @karissy "I to have refused the treatment due to the side effects. I do know someone that..." + (show)
@karissy

I to have refused the treatment due to the side effects. I do know someone that did do the 3 antibiotics which destroyed her kidneys. Life is to short when you are up there in age just like me. I am 71. Don’t need more problems when I am in good health otherwise. Even my ID doctor said he would rather not treat me. He said if I was younger maybe. He has quite a few patients with MAC who have gone 20 years plus without taking the treatment. So I will take my chance. I walk 5 miles every morning, do my vest, drink a lot of water and do huff coughing. Never have been able to cough up mucus. Doctor said that can happen not everyone will cough it up.Could do more damage by trying to force it. Was diagnosed in 2021 and so far CT scan has only changed for the better. I’m not bragging because I am aware things can change but these are the chances I am willing to take.

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Your friends Dr should have ordered regular CMP's to monitor the kidney & liver while they were in the big 3.

REPLY
maryjanechilds | @maryjanechilds | Aug 20, 2023
In reply to @sueinmn "Hi Mary Jane - I had never heard of LDN until this past Spring, when the..." + (show)
@sueinmn

Hi Mary Jane - I had never heard of LDN until this past Spring, when the pain rehab clinic started my husband taking it. He has RA, diabetes and chronic kidney disease so most RA meds are "off the table" for him. He just suffered (and not silently!)

LDN has been very helpful to him - with his pain doc and our PharmD (part of the pain rehab group) - he has titrated to the best dose for him. It has been life-changing for him - he is back in our lives instead of watching from the sidelines,

Let me mention, to get the best relief he takes a divided dose - one in AM, one near supper. This is not common, but it helps more than a higher dose once a day. You may want to keep it in mind as you work to get the most effective control.
Sue

Jump to this post

Thank you Sue for the information on divided usage of LDN. I am up to the preferred dose of 4.5 mg. but I know some people require more and some less. Does your husband still have RA flares and does he feel they are milder because of LDN? Im not sure what the expectations are but I hope the LDN combined with my MAC treatment will relieve the debilitating fatigue. Glad your husband is doing better and regained some of his zest for life.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 20, 2023
In reply to @maryjanechilds "Thank you Sue for the information on divided usage of LDN. I am up to the..." + (show)
@maryjanechilds

Thank you Sue for the information on divided usage of LDN. I am up to the preferred dose of 4.5 mg. but I know some people require more and some less. Does your husband still have RA flares and does he feel they are milder because of LDN? Im not sure what the expectations are but I hope the LDN combined with my MAC treatment will relieve the debilitating fatigue. Glad your husband is doing better and regained some of his zest for life.

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This is usually his time of year for a huge flare, and so far he is good. Has even been able to help our daughter with some wiring and plumbing - as long he takes a day off in between. He is also working on core strengthening exercises because his back is the worst - I think that is also helpful.
Sue

REPLY
suzieh | @suzieh | Aug 20, 2023
In reply to @rstel7272 "Suzieh, I was the opposite, my joint pain (from a high white blood cell count) got..." + (show)
@rstel7272

Suzieh, I was the opposite, my joint pain (from a high white blood cell count) got better once I started antibiotic treatment.

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It is bad —

REPLY
maritomi | @maritomi | Aug 20, 2023
In reply to @sueinmn "Oh my NO, @maritomi this group is for everyone living with MAC and/or bronchiectasis. These are..." + (show)
@sueinmn

Oh my NO, @maritomi this group is for everyone living with MAC and/or bronchiectasis. These are ever-changing conditions, and issues can crop up quickly with something as simple as a bad cold.
Do feel free to visit anytime you have questions.
Sue

Jump to this post

Thank you so much. I will continue then to visit this site. It's been very helpful and encouraging. And hopefully I can contribute also as this progresses on. The ID doctor did say it may get worse or it can continue on like this. Thank you again!

REPLY
becleartoday | @becleartoday | Aug 21, 2023
In reply to @maritomi "Thank you everyone for your posts. I currently saw my ID doctor and really like his..." + (show)
@maritomi

Thank you everyone for your posts. I currently saw my ID doctor and really like his suggestions. I was also told that I do not have any cavities. The size of the area is 7.4cm which seems really large but there were no cavities so I was relieved. They are on both my right and left upper lobes. But he said they don't look bad. So recommended that I do the nebulizer with saline only. He didn't want to start me on the antibiotics yet which I was happy to comply with.
Anyway, since this thread is basically for those who have MAC with cavities and bronchiectasis I will be leaving this site. But I truly appreciated everyones input. Thank you again and stay safe as the covid variant seems to be spreading quickly.

Jump to this post

Are you leaving the site or this thread? There are many of us who don’t have cavitary disease. I am one of them. I manage my bronchiectasis with airway clearance, exercise, and healthy eating. Also stress reduction. I think you’ll find lots of great tips here on Mayo Connect!
All the best,
Linda Esposito

REPLY
1 reply
maritomi | @maritomi | Aug 21, 2023
In reply to @becleartoday "Are you leaving the site or this thread? There are many of us who don’t have..." + (show)
@becleartoday

Are you leaving the site or this thread? There are many of us who don’t have cavitary disease. I am one of them. I manage my bronchiectasis with airway clearance, exercise, and healthy eating. Also stress reduction. I think you’ll find lots of great tips here on Mayo Connect!
All the best,
Linda Esposito

Jump to this post

Thank you for words. Yes, I decided to stay on this thread since I have really no other support or how to get advice from people because I don't know any one else who has this. I've just started my airway clearnce and nebulizing treatment. I'm still a ittle numb to all this cuz I feel fine and have no other symptoms except this chronic cough. I'm still in a little disbelief that I have something that I might be living with for the rest of my life. Thank you!!!
Marian

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 21, 2023
In reply to @maritomi "Thank you for words. Yes, I decided to stay on this thread since I have really..." + (show)
@maritomi

Thank you for words. Yes, I decided to stay on this thread since I have really no other support or how to get advice from people because I don't know any one else who has this. I've just started my airway clearnce and nebulizing treatment. I'm still a ittle numb to all this cuz I feel fine and have no other symptoms except this chronic cough. I'm still in a little disbelief that I have something that I might be living with for the rest of my life. Thank you!!!
Marian

Jump to this post

Marian - After five years, I think I finally am accepting that I'll always deal with it - but then, asthma, arthritis and chronic pain have been here much longer.

As you may have heard "Growing older isn't for sissies." Even my ortho told me last month that he is beginning to think about how to simplify his multi-acre landscape "because it's not getting easier."
Sue

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