To start or not to start the antibiotics?

Posted by benniej23 @benniej23, Aug 19, 2023

Hello,

I’m a 50 year old female, I was diagnosed with Bronchiectasis last year and MAC a month ago. For about 3 years I haven’t been able to really lay down in certain positions without coughing for 10 minutes. I finally went to have my lungs checked out last year and was diagnosed with Bronchiectasis. My current doc is not at Mayo, but I found this forum because I wanted to hear about others’ experience with the disease.

I’m trying to decide if I should start the antibiotic treatment now. I’m not coughing much these days, I’m eating well and the disease isn’t really interfering with my daily life. My doc said it was fine if I wanted to wait and have another CT in 6 months to see how things are.

I read one of the side effects of one of the drugs is losing color vision and blurred vision. I’ve been profoundly deaf since I was 4.5 years old and it scares me that I might have vision problems from the drugs. Has anyone experienced this? If you stop taking the drugs, does vision return to normal??

I also have acid reflux so I’m worried about how the drugs will affect my gut.

Thanks for any feedback you can give!

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

@benniej23

You are correct, it is important to stay healthy and off the antibiotics. I haven’t even started them and my goal is not to have to start.

My doc didn’t prescribe any medication, just the 3% saline nebs. It sounds like I can nebs twice a day, I’m going to call my doctor tomorrow and ask if that is ok. It would make my life easier.

I appreciate you explaining in detail what you do, and sharing your experiences. I’m sure once I start the saline nebs and learning to clean it, it won’t seem so bad. I have just keep reminding myself it’s important to stay healthy!

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I too was overwhelmed about nebulizing when I was diagnosed less than 2 years ago and want to stay off antibiotics. My local pulmonologist prescribed me a nebulizer along with albuterol and 7% saline to use twice a day. I went to YouTube to see if I was nebulizing correctly. She said to do it twice a day at least 6 hours apart. She told me nothing about cleaning or disinfecting. I learned that and also how important it is from a support group and this forum. What I do on vacation is take two neb cups and microwave sterilizer bags. (At home I boil). If I don’t have time to clean and sterilize in the morning, I put it in a baggie and then I do both neb cups after nebulizing in the evening. I also bought a Trek S for traveling. It is much smaller and quieter than my home nebulizer.

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Thank you, this is very helpful! I looked up the Trek S nebulizer, it's made by the same company that I got my nebulizer from (Pari - I have the Vios). They have instructional videos on how to use it and how to clean it and that was helpful. I'm still waiting to hear from my doctor if she's ok with me nebulizing twice a day.

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@formergardener

Sue, as always, your advice and guidance are helpful and reassuring. I wish that I had had and known about this site when first diagnosed. The experience of others is invaluable when navigating all of this.

My doctor told me that she tells all patients to do the nebulizing and airway clearance with device for the rest of their lives. I, too felt so overwhelmed at first, but it makes me feel better, and my count of bacteria was drastically reduced after less than 3 months by taking 2 meds along with the nebulizing and airway clearance.

I am so determined to finish the course of meds successfully, that I am following all of the recommendations made by experts. Raised the water heater temp, avoid ice in public establishments, mask in most public spaces, use Guaifenesin and NAC, and keep my airway treatment supplies sterile.

I rinse and then boil my equipment twice a day, right after use. It is so easy. First, I nebulize. Then, I do the Aerobika. While I wash the Aerobika, I turn on the heat under my small pot to boil the water. While it is boiling, I do things in the kitchen. I use metal rings to remove the items after boiling and place them on layers of paper towels on my tray table in the corner of my bedroom where I do my nebulizer. They dry almost instantly after boiling.

Other than feeling extremely tired from the meds, I feel well and breathe well. I don’t cough, expect when doing airway clearance to get things out. The clearance is very effective and helps keep bacteria counts down.

The hardest thing after getting the diagnosis was acceptance. Next was finding a good doctor. Once I started the airway clearance, I felt that I had control over this disease and that my precautions could influence my future health. The clearance empowers you to be proactive and stay well.

Yes, it is a pain to have to do it all, but it becomes just another chore after a while, just like laundry or dishes- and you can do it while reading, watching tv, checking e mails (like Sue does), etc…

It is harder when you work, but use the time as a time for yourself. It is doable!

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That is encouraging to hear your count of bacteria was drastically reduced after less than 3 months. I want the same thing for myself, to have less mucus and bacteria in my lungs at my next doctor's visit.

I agree the hardest thing after diagnosis was acceptance. I was grateful that it wasn't a death sentence and there was something I could do about it. I've always been proactive about my own health and this case is no exception. If I have to get up earlier in the morning to nebulize, I will do it! I appreciate your response.

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You have my sympathy, Mycoplasm avium colonization on top of bronchiecstasis and other old-age insults is the pits. I am 84, stopped smoking 40 years ago, and now cough up little green blobs like clockwork. Hypersensitive to most medications, and glaucoma restricts options anyway. I have a great pulmonologist and rheumatologist. Both cautioned that the cure in my case would be worse than the disease. So at their prodding: I'm in the pool daily, 30-60 minutes of gentle exercise to encourage productive coughs. i think happy thoughts in spite of the awfulness. Drink water and then more water. Use common sense when exposed to dense crowds and small snuffly children (medically categorized as germ cauldrons for people like me). A few small meals during the day and no eating after 6:00 pm because an overtaxed gut makes MAC worse. LOTS of fresh fruit of the best antioxidative kind, immunologically speaking. Not much dairy, which makes my mucus thick and gakky, as does key lime pie, which I make excuses for. Two heat-wicking pillows at night to keep my sinuses elevated, sleep mostly on my left side with an arm draped over a third pillow to help drainage.
On my own I've been boosting my immune system for a couple of years with NMN, 125mg for each 50 pounds of body weight. My biochemist daughter researched this natural supplement and recommended the MAAC 10 brand for me. It repairs DNA, among other things. It may not be for everyone. I am pretty sure it helped saved my life when I was hospitalized with severe pneumonia and my newly ensconced mycoplasma cells. Oh. Spirometer for sure, 10 exhalations daily. I'm at 2250 ml. Status after following informed advice: Holding steady for the time being. From coughing up 2/3 cup of gunk daily in the hospital to no more than 1/4 to 1/2 teaspoon at night.

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The antibiotics were very rough on my stomach.....Nausea, Gas, Diarreah, way too many bowel movements consecutively, gurgling, rumbling in lower bowels.
Some people have no side effects at all, but this is what they did to me. I suspect it was the Azithromycin. I chose to stop taking them. Everyone is different.........I couldn't handle it. Not an easy choice to make, but we all have to make our choices...we know our bodies and what we can and can not tolerate.
Wishing you luck......

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@cesaly1

You have my sympathy, Mycoplasm avium colonization on top of bronchiecstasis and other old-age insults is the pits. I am 84, stopped smoking 40 years ago, and now cough up little green blobs like clockwork. Hypersensitive to most medications, and glaucoma restricts options anyway. I have a great pulmonologist and rheumatologist. Both cautioned that the cure in my case would be worse than the disease. So at their prodding: I'm in the pool daily, 30-60 minutes of gentle exercise to encourage productive coughs. i think happy thoughts in spite of the awfulness. Drink water and then more water. Use common sense when exposed to dense crowds and small snuffly children (medically categorized as germ cauldrons for people like me). A few small meals during the day and no eating after 6:00 pm because an overtaxed gut makes MAC worse. LOTS of fresh fruit of the best antioxidative kind, immunologically speaking. Not much dairy, which makes my mucus thick and gakky, as does key lime pie, which I make excuses for. Two heat-wicking pillows at night to keep my sinuses elevated, sleep mostly on my left side with an arm draped over a third pillow to help drainage.
On my own I've been boosting my immune system for a couple of years with NMN, 125mg for each 50 pounds of body weight. My biochemist daughter researched this natural supplement and recommended the MAAC 10 brand for me. It repairs DNA, among other things. It may not be for everyone. I am pretty sure it helped saved my life when I was hospitalized with severe pneumonia and my newly ensconced mycoplasma cells. Oh. Spirometer for sure, 10 exhalations daily. I'm at 2250 ml. Status after following informed advice: Holding steady for the time being. From coughing up 2/3 cup of gunk daily in the hospital to no more than 1/4 to 1/2 teaspoon at night.

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Wow, you sure are dealing with a lot. I never knew an overtaxed gut makes MAC worse. I have MVP (mitral valve prolapse) so I can’t overeat because it triggers the MVP. Our bodies are quite interesting, aren’t they? I’m glad you have improved since it all started for you. Hopefully you continue to see improvement!

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@healthybon

The antibiotics were very rough on my stomach.....Nausea, Gas, Diarreah, way too many bowel movements consecutively, gurgling, rumbling in lower bowels.
Some people have no side effects at all, but this is what they did to me. I suspect it was the Azithromycin. I chose to stop taking them. Everyone is different.........I couldn't handle it. Not an easy choice to make, but we all have to make our choices...we know our bodies and what we can and can not tolerate.
Wishing you luck......

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I’m so sorry that you had so many side effects from the meds. If they were making you so sick, it isn’t worth it to continue. I would have stopped taking them, too. I’ve read about alternative treatments, I hope you can find something that works for you.

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thank you Bennie...I don't understand why we got this disease......it's something I had never heard of.........did you ever try the antibiotics...do you have MAC/bx?

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@benniej23

Wow, you sure are dealing with a lot. I never knew an overtaxed gut makes MAC worse. I have MVP (mitral valve prolapse) so I can’t overeat because it triggers the MVP. Our bodies are quite interesting, aren’t they? I’m glad you have improved since it all started for you. Hopefully you continue to see improvement!

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Sorry about that! Anything that sets off a chronic inflammatory response jumbles up most everything in my body. (Hence my penchant for anti-inflammatory fruits especially.Oddly, 5-6 fresh raw walnut halves before bedtime helps me, as long as they are soaked first to rinse counterproductive toxins. ) I just wish scientists knew more about this destructive systemic response. They are working on it. In the meantime, I am whistling in the wind with respect to non-drug remedies, albeit happily.

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@healthybon

thank you Bennie...I don't understand why we got this disease......it's something I had never heard of.........did you ever try the antibiotics...do you have MAC/bx?

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Yes, I have MAC and bronchiectasis. I decided to hold off on the antibiotics for now. I started airway clearance with a nebulizer last week, I’m hoping that at my 6 months checkup the CT will show it hasn’t gotten worse.

I asked my doctor why/how I got this disease.. there is no known cause. Some people are just susceptible to it and inhaling things from the environment could have caused it. She told me she usually sees it in older people, but lately more young people are being diagnosed.

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