1. < MAC & Bronchiectasis

Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 7, 2020
In reply to @joanng "My healthcare providers have an online patient portal so I have access to all of my..." + (show)
@joanng

My healthcare providers have an online patient portal so I have access to all of my lab tests and other information regarding each visit.
I will request a susceptibility test How is this test performed?

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Hello Joann, I apologize for my delayed response to your question. A suseptibility test is usually done along with your sputem test. It is a test to determine which antibiotics will work on your particular specie of mac; there is now over 180 species. You need to ask your dr if such test was done and if it was, get a hard copy for your personal file. If it was not performed, then you need to insist on one with your next sputem test. Many private care pulmonologists do not take that extra step (suseptibility test) and just prescribe a broad spectrum antibiotic or the Big 3 as we call it. These meds won't work if your type of mac has a resistance to it.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 7, 2020
In reply to @auntnanny "windwalker....... I'm thinking I'm going to have to stop the toby. I've worked with it over..." + (show)
@auntnanny

windwalker....... I'm thinking I'm going to have to stop the toby. I've worked with it over a year and no differentce in the pseudomonas. Yesterday about 2 minutes after finishing toby I knew I was in more trouble. Breathing was next to impossible. I took my oxygen level and it was only 80. My younger son was here with me and I was thankful. I just sat in a chair and gradually tried to breathe a little deeper. Finally got it up to 90 but at 80, I thought I was going to fall on my face. I had used the inhalation Puleri just before toby as it is supposed to keep airways open. Big mistake. I'm just discouraged and perplexed as to why I can't make this work. Is anyone else out there with toby breathing problems????

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Oh my goodness Jan! How scary that must have been. Yeah, I have to agree with you, tobi is probably NOT for you. I am so glad that your son was there to help you through that episode. A few members have mentioned not tolerating the tobi very well, but not as extreme as your situation. Has your dr replaced it with something different?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 8, 2020
In reply to @joanng "Is New York a hotspot for MAC?" + (show)
@joanng

Is New York a hotspot for MAC?

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Hello Joann,. Yes, N.Y. is a 'Hot Spot' for mac. Wisconsin is the 'hottest', then Florida. Arizona, is another hotbed for it.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 12, 2020
In reply to @joanng "Thank you for all the information of what you were going through. This is exactly every..." + (show)
@joanng

Thank you for all the information of what you were going through. This is exactly every symptom I currently have. What antibiotics got rid of the pseudomonas? My culture was at +3 and now at +4 and am currently on gentomycin. Appreciate you sharing.
Joann

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joann, I was put on nebulized tobramycin for 28 days every other month. The pseudo was gone after the first month, the cough I had for years was totally gone and ids gone to this day. I was kept on the tobramycin for 4 more yrs as a precaution to keep the pseudo away ( it works on mac also) because pseudo can be tenacious and come back; just like mac. I was taken off all antibiotics 5 months ago. I should know the results of my June sputem tests soon. I will look on my patient portal and see if the results are posted there. Bear in mind, you would need a suseptibility test done first to see if it would work on the strain that you have. Also, be aware, that some people cannot tolerate tobramycin at all. It can cause breathing issues. Can ask ask @auntnanny about that.

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1 reply
alleycatkate | @alleycatkate | Aug 12, 2020

@windwalker Please let us know the test results when they come in. Kate

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joann | @joanng | Aug 12, 2020
In reply to @windwalker "joann, I was put on nebulized tobramycin for 28 days every other month. The pseudo was..." + (show)
@windwalker

joann, I was put on nebulized tobramycin for 28 days every other month. The pseudo was gone after the first month, the cough I had for years was totally gone and ids gone to this day. I was kept on the tobramycin for 4 more yrs as a precaution to keep the pseudo away ( it works on mac also) because pseudo can be tenacious and come back; just like mac. I was taken off all antibiotics 5 months ago. I should know the results of my June sputem tests soon. I will look on my patient portal and see if the results are posted there. Bear in mind, you would need a suseptibility test done first to see if it would work on the strain that you have. Also, be aware, that some people cannot tolerate tobramycin at all. It can cause breathing issues. Can ask ask @auntnanny about that.

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Terri
Were you taken off the antibiotics because you were feeling better?
Keep me posted on your results.
Why does it take so long for results to come back?
Joann

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020

@alleycatkate & @joann, My test results came back NEGATIVE!!!! Negative for everything! Joann, I took myself off of my meds in March 2020, because of drug fatigue. I was sick and tired of taking them, plus I was feeling better and felt I did not need them any longer. I had been on antibiotics since 2013. That sounds like a lot, but the first three yrs I was only taking antibiotics for ten days a month. I confessed that I had stopped my meds to my new dr at Mayo and told her I would go back on them if she felt I should. She said I didn't have to go back on, but continue with the albuterol and nebulized saline. She gave me a script for an antibiotic to keep on hand should an infection start up. So far, so good on my end.

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7 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @joanng "Terri Were you taken off the antibiotics because you were feeling better? Keep me posted on..." + (show)
@joanng

Terri
Were you taken off the antibiotics because you were feeling better?
Keep me posted on your results.
Why does it take so long for results to come back?
Joann

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joann, the test results for mac take 6-8 weeks because it is a slow growing bacteria. Some drs hold off on treatment because it is a slow grower and sometimes your own body will get rid of it.

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nannette | @nannette | Aug 13, 2020
In reply to @windwalker "@alleycatkate & @joann, My test results came back NEGATIVE!!!! Negative for everything! Joann, I took myself..." + (show)
@windwalker

@alleycatkate & @joann, My test results came back NEGATIVE!!!! Negative for everything! Joann, I took myself off of my meds in March 2020, because of drug fatigue. I was sick and tired of taking them, plus I was feeling better and felt I did not need them any longer. I had been on antibiotics since 2013. That sounds like a lot, but the first three yrs I was only taking antibiotics for ten days a month. I confessed that I had stopped my meds to my new dr at Mayo and told her I would go back on them if she felt I should. She said I didn't have to go back on, but continue with the albuterol and nebulized saline. She gave me a script for an antibiotic to keep on hand should an infection start up. So far, so good on my end.

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@ windwalker, Terri, that's great news that your test results came back NEGATIVE! Hooray! Nan

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alleycatkate | @alleycatkate | Aug 13, 2020
In reply to @windwalker "@alleycatkate & @joann, My test results came back NEGATIVE!!!! Negative for everything! Joann, I took myself..." + (show)
@windwalker

@alleycatkate & @joann, My test results came back NEGATIVE!!!! Negative for everything! Joann, I took myself off of my meds in March 2020, because of drug fatigue. I was sick and tired of taking them, plus I was feeling better and felt I did not need them any longer. I had been on antibiotics since 2013. That sounds like a lot, but the first three yrs I was only taking antibiotics for ten days a month. I confessed that I had stopped my meds to my new dr at Mayo and told her I would go back on them if she felt I should. She said I didn't have to go back on, but continue with the albuterol and nebulized saline. She gave me a script for an antibiotic to keep on hand should an infection start up. So far, so good on my end.

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@windwalker ...Yay!! I am So Happy for you!

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