My MAC and bronchiectasis treatment

Posted by pal131 @pal131, Thu, Jan 30 9:00am

I have been diagnosed with Mac disease and bronchiectasis 15 years ago. I've had many bouts of pneumonia and bronchitis. Finally my local Dr in Naples FL has said that I have active MAC issues going on and he wants me to go on the 3 drug plan for 18 months. I am very interested in hearing from others that have tried this plan and see if it is worth doing in the long run. I have heard that it sometimes makes you nauseous and you lose weight. And from other friends that have already been on this plan and they still have many issues with both of these diseases. One has become resilient to taking many antibiotics and they are no longer effective. I feel like maybe I should just make sure that I have the pneumonia shot every other year and take elderberry, vitamin C, echinacea, probiotics and airbourne every day and give that a try and see if it is effective before doing the 3 drug program. I'm afraid that it will damage my organs etc because they are so strong. Any suggestions or help from others would be appreciated. I did have a bronchiscope done and sputum test and breathing test all came back with bad indicators of my serious problem. Thanks.

Liked by girlbybay

@pal131 I'm sorry to hear what you've been going through with bronchiectasis and MAC, and I relate to your story, having dealt with the same conditions for several years. Like you I was reluctant to try the "Big 3" but eventually the deterioration of my lungs and the frightening appearance of cavities in the lungs convinced me that I should try a regimen that might slow down or stop this obvious progression. What I've learned from my own experience on the drugs and from the Mayo Clinic forum is that the experience is different for everyone: the drugs have different side effects for different people, the treatment for the side effects is unique to each patient, and the effectiveness of the drugs is different for each patient. To top it all off the odds of actually eliminating the MAC infection are not encouraging. However, after you consult with a good, well-informed, wise pulmonologist and ID doctor, you may decide it's worth a try for you. Keep in mind that if you do decide to try it, and it's too hard on you, or it doesn't improve anything for you, you can decide to stop, and explore other options, though, admittedly, there are few. This experience is all about trial and error. I encourage you to have an open mind and consult with the best doctors you can find. In my case, after being on the drugs for 16 months, there is no improvement in my lung tissue, but I have more energy (on the days when I don't take the drugs), I cough hardly at all, and I contracted not one virus for 13 months. (I was getting a cold or flu or having a flare-up about once every 3 months before the drugs.) The drugs have not been fun for me but I've learned ways to tolerate them. Wishing you the best.

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Hi, I saw your post and just wanted to say that I too have done the Big 3, I took them 3x per week for just over a year, The MAC was very active , when I started the meds, and although it wasn’t the best year of my life, I feel like it knocked down the infection very well. Just had a CT scan in Jan , and after almost 3 yrs since the last testing, I did show very slight changes, and they want to do another scan in 6-9 months, but my ID doc did not feel like the changes were significant enough to start meds again. While on the meds, I was exhausted, my appetite was nill, lost over 20 some lbs and as a little gal anyway that was significant, but all that being said, I believe the meds really but a crunch on the infection. I still show serious damage from the initial infection, and am borderline COPD, but I work every day still, can I run 4 miles? No, but I’m 63 , so I’m not looking to either anymore. I eat very clean, I haven’t smoked in 30 plus yrs, am very active, try and drink lots of water…do have my nightly vodka / cran…and yes I cough a great deal in the am, but after a few minutes, my lungs settle down and I am on my way. Everyone is different, all our bodies are different, but most importantly, our minds are different. You must make the best decision for yourself, an educated one, and then try and live as healthy as you can, with or without meds…God Be with you,
Sandie

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I started on the 3 drugs last March. I couldn't handle rifampin and my doctor said it was fine to drop it. There is a study going on at various locations to find if rifampin, the drug that most seem to find impossible to take, is necessary. After two months on the 2 drug regimen of 3x per week, my monthly sputum samples were negative for MAC. I have been negative ever since (fingers crossed for the specimen I dropped off yesterday).

I do have digestive issues but I also have an unusual digestive system due to colon cancer surgery. If all goes well, I will finish the drugs in June, one year from the first negative. I"m glad I am taking the drugs and grateful that they are working for me. I'm not very good at wait and see when horrible bacteria are sitting in my lungs.

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Considering the good press that inhalation therapy using 7%saline has recently received on this forum, that it hasn’t been mentioned in this thread so far is puzzling.
Is there some compelling reason pal131 should avoid it? Don

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Wait, there’s more. And as I learned on this forum, 7% saline can kill some bad actors in one’s lungs and I know antibiotics can and do kill the good actors in our gut which is well…a punch in the gut.

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@pal131 , I’m so sorry you are needing to join the MAC club, but also, so glad to have you! In my case, by the time I started daily treatment with the “big three” I had a lot of fatigue and weight loss from the disease. After a month on the meds, my energy and appetite began to return. I've had other side effects (all things I can manage) but I can definitely tell that I’m better for taking the drugs. Now I’m worried about what will happen when I stop them in a month or so!

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I've been on the Big 3 for around 4 months. I am doing my first spudem (spelling) sample in March after starting. So far, the only thing that I have is ringing in the ears. I also do the 7 % saline twice a day. I did not lose weight. In fact, I've gained 20 pounds. I was fine the way I was. I learned that I could travel and lead a pretty normal life so far. I do exercise at least 4 times a week. I have very little coughing at this time but I do get out of breathe easier.

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@marthachs

@pal131 , I’m so sorry you are needing to join the MAC club, but also, so glad to have you! In my case, by the time I started daily treatment with the “big three” I had a lot of fatigue and weight loss from the disease. After a month on the meds, my energy and appetite began to return. I've had other side effects (all things I can manage) but I can definitely tell that I’m better for taking the drugs. Now I’m worried about what will happen when I stop them in a month or so!

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@marthachs I'm so glad to hear you are tolerating the Big 3 well – I too knew I was better with them than without, but after a long time they began to really drag me down. Over one month off and my digestive issues are finally improving, my energy is getting better, but still little to no appetite.
Wondering if you can tell us how long you have been taking the antibiotics, and when/if your sputum samples stopped showing MAC? Also, do you do any other treatments, either to counteract the antibiotics, like probiotics, or for your lungs, like saline, inhaler, airway clearance? Sue

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@thumperguy

Considering the good press that inhalation therapy using 7%saline has recently received on this forum, that it hasn’t been mentioned in this thread so far is puzzling.
Is there some compelling reason pal131 should avoid it? Don

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@thumperguy I am kind of a research nerd, so I read everything I could find about 7% saline when it was first mentioned here. There is some fairly compelling evidence, but very little has been written that is easily digested if you're not used to reading scientific papers. I think @windwalker may have posted a table showing which strengths are effective on various NTM strains. I think I will look for a bit this morning for something easy to read and share it under the 7% saline discussion.
I had a difficult time getting a doc to prescribe it at first. My ID doc said, "I don't know much about lungs, only infections. See your pulmo." My original pulmo just said "No." Finally, my primary said, "Hmm, first I've heard of it. Let me call my Pharm Doc and discuss it." In a few minutes, he did some research and told her it looked like it could help, and at worst it wouldn't hurt or interact with anything else I take, so let's try it. My new pulmo, when I told her I was on it, said "Yes, it's very good for keeping MAC down. I'd like you to use it twice a day."
So now I use it, and have only needed my levalbuterol neb when I had a cold, and my rescue inhaler a handful of times. So it has definitely helped clear my lungs, which seems to help my asthma as well. The problem is, it's working so well I forget to sit down and use it sometimes!
Look at all the things we use salt for, other than to season our food. No wonder it was as valuable as gold to ancient people.
Sue

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@thumperguy

Wait, there’s more. And as I learned on this forum, 7% saline can kill some bad actors in one’s lungs and I know antibiotics can and do kill the good actors in our gut which is well…a punch in the gut.

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My former pulmonologist would laugh if she learned I was encouraging others to use hypertonic saline! I complained about it from the minute I started on it back in 2011. I HATE it! I told her it was pouring salt on my wounded lungs. She put that in the notes I brought to my current pulmonologist! Hahaha

That being said, I was started on it as soon as the bronchiectasis diagnosis was made which was 7 or 8 years before the MAC diagnosis. I had stopped and started the 7% saline over the years and had stopped using it for a year before MAC was diagnosed. I have to wonder if I had continued it, would I even have MAC? When I started seeing my current pulmonologist, she did two things at that first appointment: 1. She wrote a prescription for 3% saline and insisted I use it 2x a day. I had been doing the 7% 1x per day when I did it. 2. She gave me a specimen cup and told me to bring in a sputum sample. My former pulmonologist had refused to test for bacteria although the frequent ct scans she ordered were suspicious for MAC.

While saline treatment MAY kill bacteria, the main purpose is to clear out as much stuck sputum as possible. Bronchiectasis and several other conditions lead to abnormal airways and mucus, which everyone has in their lungs, gets stuck in them. The body sends neutrophils, enzymes, etc. to the abnormal airways and this stuff joins the mucus to form sputum. Obviously, it is more difficult to breathe through sputum clogged airways than it is through clear ones. The sputum is also a breeding ground for bacteria.

So fellow sufferers, we need to neb that saline and cough up the sputum.

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@thumperguy

Considering the good press that inhalation therapy using 7%saline has recently received on this forum, that it hasn’t been mentioned in this thread so far is puzzling.
Is there some compelling reason pal131 should avoid it? Don

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I haven’t commented as I don’t know if using the 7% saline solution is the reason for my success or not…..I guess even after a year or more on this forum, I have not contracted any major infections that necessitated antibiotic interventions for bronchiectasis. I was diagnosed in 2017, so at this point, I guess I’m a compelling reason to use it! However, when I say things like this, I get worried something will jinx everything as the pulmonologist said this disease moves at its own pace….unique to each person…..

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@tinaesims

I've been on the Big 3 for around 4 months. I am doing my first spudem (spelling) sample in March after starting. So far, the only thing that I have is ringing in the ears. I also do the 7 % saline twice a day. I did not lose weight. In fact, I've gained 20 pounds. I was fine the way I was. I learned that I could travel and lead a pretty normal life so far. I do exercise at least 4 times a week. I have very little coughing at this time but I do get out of breathe easier.

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@tinaesims I’m glad to hear you’re doing so well! I do hope you’re getting regular checks of your hearing. I already had some tinnitus and some mild high frequency hearing loss when I started the Big 3 daily (I guess from my age, 69, and lots of music exposure and loud kids over the years). I had follow up testing every 3 months, and at about 6 to 7 months in, they detected a small loss of hearing and we stopped the azithromycin. The ID doc substituted ciprofloxacin. My hearing has been stable since then, but my understanding is that once those cells are damaged, you don’t usually get that function back. The most sensitive test they did on my ears was called DPOAE (Distortion Product Otoacoustic Emissions testing) and they said it would be the earliest to pick up new damage.

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@sueinmn

@marthachs I'm so glad to hear you are tolerating the Big 3 well – I too knew I was better with them than without, but after a long time they began to really drag me down. Over one month off and my digestive issues are finally improving, my energy is getting better, but still little to no appetite.
Wondering if you can tell us how long you have been taking the antibiotics, and when/if your sputum samples stopped showing MAC? Also, do you do any other treatments, either to counteract the antibiotics, like probiotics, or for your lungs, like saline, inhaler, airway clearance? Sue

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@sueinmn I’m at 12 months now on daily antibiotics (I had a small cavity or 2). I had to drop azithromycin at about month 7 because it was damaging my hearing and substituted ciprofloxacin at that point. My cough has always been dry, so I had no treatment until I coughed up some blood and had bronchoscopy to get samples for culture. So, no idea about current status or when/if I achieved culture negative status. I just had my first follow up CT scan which looks somewhat improved, but not perfect by any means. I see the id doc in a couple of weeks to decide what to do next.
I take one Florastor capsule with the ciprofloxacin in the morning, a multivitamin, calcium tab, and one Culturelle capsule mid-day, and the rest of the antibiotics on an empty stomach at bedtime. I have tried the Aerobika but it doesn’t seem to change anything, so I don’t really do it. Never needed an inhaler and haven’t tried the saline. Think I might want to try the saline at this point after reading so much about it here, and especially as I think about coming off antibiotics.
Aggressively managing “silent reflux” has been key for me I think, and I boil all my drinking water now. If I eat chocolate or pizza, especially late in the day, or eat too close to bed time, my cough comes right back! Stress will definitely do it too. And I never lie down with my head and chest less than 30 degrees…unless I’m getting a CT scan!

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@migizii

I haven’t commented as I don’t know if using the 7% saline solution is the reason for my success or not…..I guess even after a year or more on this forum, I have not contracted any major infections that necessitated antibiotic interventions for bronchiectasis. I was diagnosed in 2017, so at this point, I guess I’m a compelling reason to use it! However, when I say things like this, I get worried something will jinx everything as the pulmonologist said this disease moves at its own pace….unique to each person…..

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@migizii, From my point-of-view not needing an antibiotic for a year or close to it qualifies as a big success. I seem to need a round every four or so months. Hope 7% is gonna change all that. Anyway, congrats to you for makin' it a year.

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I have been taking the 3 meds for three months. Still have digestive issues with stomach pain. I have lost 20 lbs. Will the digestive issues eventually stop? The excess coughing has subsided so it is working.

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