just saw a infectious disease doctor

Posted by hauoli @hauoli, Jul 7, 2021

I am 77 years old and have been dealing with Bronchiectasis and MAC for a little over 6 months. My pulmonologist has me on a nebulizer with two solutions, budesonide-.5mg and a sodium chloride solution-3%. It seems to work in that I have good clearance and have coughing under control and can function with some fatigue. I also use an aerobika.
After viewing my sputum samples and CT scan, the infectious disease Dr. suggested that I start on a three antibiotic treatment of azithromycin, ethambutol and rifabutin for a period of 1-2 years taking the antibiotics every other day. I am resisting this program thinking that so far my saline solution is allowing me to clear my lungs. We agreed to continue what Im doing and to another appointment in three months time. I'll also meet with my pulmonologist. What do all think of my situation? Thanks for any comment

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

Not a doctor, so I won't give you a medical opinion, but I will suggest that you make sure your ID and pulmonologist are coordinating. And ask whether your pulmonologist concurs with the I'D doc. Maybe even ask if they are willing to make a phone consult with NJH, if they do not both have a lot of experience with MAC.

The decision to treat with antibiotics or stay the course with airway clearance is pretty complex, based on lung condition/changes, quantity of infection, coughing, fatigue, fever, weight loss, and your ability to handle the rigors of the medication regime.

Read more here:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria
Some of the people here have fared well with the Big-3, others, not so much. I personally had to stop while still positive for MAC because I couldn't tolerate the side effects, but it did help clear up the lesions in my lungs, and I have maintained for 18 months on 7% saline, airway clearance and levalbuterol, with duoneb and budosenide only during a recent exacerbation, which seems to be clearing.

Did you have any discussion with the I'D doc as to why he believes it is time for antibiotics?

Any other members willing to share their experiences with or without the Big-3?
Sue

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Hi Hauolo…before I was started in the big three, my Dr monitored me till I began to show symptoms, and a progressive CT indicating I needed the Big 3..I generally tolerated the drugs well, and have been MAC free for over 2 years..I nebulized 7 percent saline twice daily, attaching my aerobica to my aeroclipse, and do autogenic airway clearance as well..💕

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Hi,
I was diagnosed with MAC 18 months ago. My Infectious disease doctor said my case was “mild”. And offered a wait and see with just airway clearance regimen. At this point in time, due to symptoms, and radiological and continued positive sputum Cultures, my doctor and I decided to start treatment. My only complaint is that I was not aware of how important my gi issues play a part in this disease and so am playing “catch-up” with that diagnosis.
Good luck with all treatments.

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Thank you all for your comments. Helps a lot with decision making. I will consult with my pulmonologist about what the infectious Dr. suggested. I suspect that he has to cover himself and request the big 3. Big 3 is such a long process. Since my pulmonologist said that I have a rather mild case of this disease I feel that I can wait for three months and see them again and get another cat scan and mucus test results. The reality that this illness is not going to go away is daunting. And I realize that I have to get rid of the infection. Thanks again. Sue you are a gem. H

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@hauoli

Thank you all for your comments. Helps a lot with decision making. I will consult with my pulmonologist about what the infectious Dr. suggested. I suspect that he has to cover himself and request the big 3. Big 3 is such a long process. Since my pulmonologist said that I have a rather mild case of this disease I feel that I can wait for three months and see them again and get another cat scan and mucus test results. The reality that this illness is not going to go away is daunting. And I realize that I have to get rid of the infection. Thanks again. Sue you are a gem. H

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Sue and Jennifer, taking the big three were you on it for 1-2 years taking the medications every other day? Thanks

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@hauoli

Sue and Jennifer, taking the big three were you on it for 1-2 years taking the medications every other day? Thanks

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I started on 3 times per week, then after a year my lungs had not improved and my infection was still symptomatic. I was changed to every day for 6 months, and that was a deal breaker for me – my body couldn't handle the additional meds. If I knew then what I know now, I would have asked for dosage adjustments because I was under 100# and they were dosing me with the full amount. I know now from my studies that they could have reduced the amounts and I may have tolerated it better.
Sue

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@hauoli

Thank you all for your comments. Helps a lot with decision making. I will consult with my pulmonologist about what the infectious Dr. suggested. I suspect that he has to cover himself and request the big 3. Big 3 is such a long process. Since my pulmonologist said that I have a rather mild case of this disease I feel that I can wait for three months and see them again and get another cat scan and mucus test results. The reality that this illness is not going to go away is daunting. And I realize that I have to get rid of the infection. Thanks again. Sue you are a gem. H

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Thanks for the compliment – my Dad used to say even a lump of coal can be a diamond after enough time passes…

I think more docs are willing to wait and see because the drug regimen is tough on a lot of people. Most mycobacteria are very slow growing. You might also want to ask again about 7% saline – the evidence is that it can help keep the bacteria from growing is mounting.

Sue

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Thank you so much for your replys. I just asked my pulmonologist about the 7% saline instead of the 3% that I'm currently taking and he told me that its about the same. Ill ask him again.
Loved what your dad said! I want to live a more joyous life and I feel like I'm being tested.

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@hauoli

Thank you all for your comments. Helps a lot with decision making. I will consult with my pulmonologist about what the infectious Dr. suggested. I suspect that he has to cover himself and request the big 3. Big 3 is such a long process. Since my pulmonologist said that I have a rather mild case of this disease I feel that I can wait for three months and see them again and get another cat scan and mucus test results. The reality that this illness is not going to go away is daunting. And I realize that I have to get rid of the infection. Thanks again. Sue you are a gem. H

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@migizi…agreed Sue is a gem! Also, I like your idea! Take care

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@hauoli

Thank you so much for your replys. I just asked my pulmonologist about the 7% saline instead of the 3% that I'm currently taking and he told me that its about the same. Ill ask him again.
Loved what your dad said! I want to live a more joyous life and I feel like I'm being tested.

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@hauoli Please talk to your pulmonologist again because 7% saline has been shown to stop growth of MAC, whereas 3% doesn’t. Nebulizing 7% saline has been a great game changer for those of us with MAC. Here are a couple of papers: See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/, especially tables 2 and 3. Also https://erj.ersjournals.com/content/54/1/1802143.long

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Hi there! I have a question for you. Do you think that using the aerobika helps you to bring stuff up? My dr wants me to order one, but I feel like the 7% saline is doing it just fine. I see that you are apprehensive about going on the 'Big 3' antibiotics. I was too. You can click on my picture icon and my treatment plan will come up. You can read about how other drs decide to treat as an alternative. Fortunately, my treatment plan worked. Have been mac-free since 2014.

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@windwalker

Hi there! I have a question for you. Do you think that using the aerobika helps you to bring stuff up? My dr wants me to order one, but I feel like the 7% saline is doing it just fine. I see that you are apprehensive about going on the 'Big 3' antibiotics. I was too. You can click on my picture icon and my treatment plan will come up. You can read about how other drs decide to treat as an alternative. Fortunately, my treatment plan worked. Have been mac-free since 2014.

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I am on the fence about my Aerobika. When I am nebbing the 7%, my lungs are very good at clearing without help. But when I was hurting, I did use it twice a day – I felt it did move things from the lower lobes.
Sue

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