1. < MAC & Bronchiectasis

Bronchiectasis with MAI (for the second time)

Posted by mary0310 @mary0310, Apr 14, 2018

Hi everyone. I am new in the group. Unfortunately, I am not new in these conditions which most, if not all of us here are dealing with. I was diagnosed in 2012 with M. Avium and Bronchiectasis. I wast treated for 18 months with “success”. I continue to see my doctor for monitoring until the infection came back in late 2016, this time the culture showed Intracellulare. Since the growth was minimal, my doctor decided to put me in watchful monitoring. Please take note all this time, my symptom is shortness of breath. In early 2017, we moved to another city which was closer to UF Health Gainesville. So, I transferred to another doctors. My new pulmo had me go through all the tests. The ct scan and PFT of 2017 compared to 2016 were not so bad, BUT if its compared to the 2015, there was relatively noticeable change. My doctor now opens the idea of going back to treatment. This is where I am now: struggling whether to go back or not. I want to be treated because my breathing is really getting harder...to put it in perspective, tasks that i can complete 6 months ago with relative ease, I am having difficulty completing them now. Yes, I can still exercise, but it has become really so hard. On the other hand, I am hesitant to be on treatment again because i already have side effects from the previous treatment: reduced hearing, eye problems and my stomach is messed up that I do not think it can tolerate the antibiotics. I have done quite a number of remedies to fix my stomach but its always distressed.
I am hoping there might be someone in the group who is/are in similar situations, i want to know some insights. Thank you.

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Jo Ann K | @jkiemen | Apr 17, 2018
In reply to @windwalker "@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac)..." + (show)
@windwalker

@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac) What you two have/had is a. Mycobacterium intracellulare (mai). That is a different strain of mac and requires stronger treatment. It is a tougher strain to treat as it is resistant to most antibiotics. I was up until 2 a.m. last night reading about it so that I do not pass on faulty information. Jen, it is fantastic that you provided a success story of after treatment. That offers a tremendous beacon of hope for others that are in treatment now.

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Can you share more of what you learned?

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Jo Ann K | @jkiemen | Apr 18, 2018
In reply to @jenblalock "@mary0310 I had MAC with Intraceullular (only once so far - knock on wood) plus cavitary..." + (show)
@jenblalock

@mary0310 I had MAC with Intraceullular (only once so far - knock on wood) plus cavitary lesions so was treated right away with the Big 3 and Amikacin. Do you have any complicating factors such as cavitation? I have to say, in my case, the Big 3 worked and I was off meds within 15 months with no side effect damage. It is interesting that there are actually other treatments available such as what @windwalker is doing.

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check this out. https://globenewswire.com/news-release/2018/01/22/1298432/0/en/AIT-Therapeutics-Announces-Further-Data-From-Its-NO-NTM-Abscessus-Phase-2-Clinical-Trial-in-Nontuberculous-Mycobacteria-NTM-Patients.html

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 19, 2018
In reply to @jenblalock "@mary0310 I had MAC with Intraceullular (only once so far - knock on wood) plus cavitary..." + (show)
@jenblalock

@mary0310 I had MAC with Intraceullular (only once so far - knock on wood) plus cavitary lesions so was treated right away with the Big 3 and Amikacin. Do you have any complicating factors such as cavitation? I have to say, in my case, the Big 3 worked and I was off meds within 15 months with no side effect damage. It is interesting that there are actually other treatments available such as what @windwalker is doing.

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@jkiemen Hi Jo Ann, it has been long known for years by NIH that NO therapy works; it was a matter of cost in the delivery that made it prohibitive to use. Do you know if there has been any change in that aspect?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 19, 2018
In reply to @windwalker "@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac)..." + (show)
@windwalker

@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac) What you two have/had is a. Mycobacterium intracellulare (mai). That is a different strain of mac and requires stronger treatment. It is a tougher strain to treat as it is resistant to most antibiotics. I was up until 2 a.m. last night reading about it so that I do not pass on faulty information. Jen, it is fantastic that you provided a success story of after treatment. That offers a tremendous beacon of hope for others that are in treatment now.

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@jenblalock , Jen, I am glad that you are on the mend. What the heck is HIB?

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Jen_b | @jenblalock | Apr 19, 2018
In reply to @windwalker "@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac)..." + (show)
@windwalker

@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac) What you two have/had is a. Mycobacterium intracellulare (mai). That is a different strain of mac and requires stronger treatment. It is a tougher strain to treat as it is resistant to most antibiotics. I was up until 2 a.m. last night reading about it so that I do not pass on faulty information. Jen, it is fantastic that you provided a success story of after treatment. That offers a tremendous beacon of hope for others that are in treatment now.

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@windwalker Hi Terri, it's haemophilus-influenzae. It's not really flu but called that for some reason. It's contagious and can infect children (although there's a vaccine now) or adults who have a chronic lung disorder. I'm not sure if it's bacterial or viral. I know it can cause bacterial pneumonia (which I did not get luckily) among other problems. I seem to be recovering from it with only a cough and fatigue left. Annoying how long it takes though!

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Jo Ann K | @jkiemen | Apr 19, 2018
In reply to @windwalker "@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac)..." + (show)
@windwalker

@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac) What you two have/had is a. Mycobacterium intracellulare (mai). That is a different strain of mac and requires stronger treatment. It is a tougher strain to treat as it is resistant to most antibiotics. I was up until 2 a.m. last night reading about it so that I do not pass on faulty information. Jen, it is fantastic that you provided a success story of after treatment. That offers a tremendous beacon of hope for others that are in treatment now.

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Hemaphilus Influenza B

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Jo Ann K | @jkiemen | Apr 19, 2018
In reply to @jenblalock "@mary0310 I had MAC with Intraceullular (only once so far - knock on wood) plus cavitary..." + (show)
@jenblalock

@mary0310 I had MAC with Intraceullular (only once so far - knock on wood) plus cavitary lesions so was treated right away with the Big 3 and Amikacin. Do you have any complicating factors such as cavitation? I have to say, in my case, the Big 3 worked and I was off meds within 15 months with no side effect damage. It is interesting that there are actually other treatments available such as what @windwalker is doing.

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No but I am waiting for the clinical trials to keep expanding. I think the thought process is that the delivery system may be part of the research. But if it is cost keeping us all from being well, the cost of keeping us ill should be compared and it would probably be a wash.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 19, 2018
In reply to @jenblalock "@mary0310 I had MAC with Intraceullular (only once so far - knock on wood) plus cavitary..." + (show)
@jenblalock

@mary0310 I had MAC with Intraceullular (only once so far - knock on wood) plus cavitary lesions so was treated right away with the Big 3 and Amikacin. Do you have any complicating factors such as cavitation? I have to say, in my case, the Big 3 worked and I was off meds within 15 months with no side effect damage. It is interesting that there are actually other treatments available such as what @windwalker is doing.

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@jkiemen good point.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 19, 2018

@jkiemen Ohhhhhhh....thnx!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 19, 2018
In reply to @windwalker "@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac)..." + (show)
@windwalker

@jenblalock and @mary0310 Please keep in mind that my treatment plan was for A. Mycobacterium (mac) What you two have/had is a. Mycobacterium intracellulare (mai). That is a different strain of mac and requires stronger treatment. It is a tougher strain to treat as it is resistant to most antibiotics. I was up until 2 a.m. last night reading about it so that I do not pass on faulty information. Jen, it is fantastic that you provided a success story of after treatment. That offers a tremendous beacon of hope for others that are in treatment now.

Jump to this post

@jenblalock Bummer that you got it. Seems it takes more time to recover from most of the things we catch. Glad you are the mend now. -Hugs!

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