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mary0310
@mary0310

Posts: 6
Joined: Apr 09, 2018

Bronchiectasis with MAI (for the second time)

Posted by @mary0310, Sat, Apr 14 10:33pm

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.

REPLY

I have MAC and bronchiectasis.The only antibiotic that had effect for me was azithromyicin. I also lost some hearing and got off it after six months… this was the past year…up until then I took no meds.. My primary problem has been fatigue. I started using a nebulizer two weeks ago using a saline solution my doctor prescribed. I use it morning and evening and it's the best I have felt in a long time. I'm functioning again. My nebulizer is easy to use. It's a small, hand held ultra sonic I purchased it on Amazon for about $25. I just bought a second one as a back up. I was diagnosed in 2010. I am able to get in bed at night with no coughing. I am on oxygen at night as of a year ago. But, not during the day. I just couldn't stand to be tethered all day.

@mary0310 Hi Mary. Well, that is distressing news. Did you see my post of how I was treated with alternating antibiotics? Do you know what the suseptibilty test showed for which antibiotics will and will not work? I am going to send a private email to you with my phone number. You can call me and chat to get more info if you want. I will be available all day today.

@flib

I have MAC and bronchiectasis.The only antibiotic that had effect for me was azithromyicin. I also lost some hearing and got off it after six months… this was the past year…up until then I took no meds.. My primary problem has been fatigue. I started using a nebulizer two weeks ago using a saline solution my doctor prescribed. I use it morning and evening and it's the best I have felt in a long time. I'm functioning again. My nebulizer is easy to use. It's a small, hand held ultra sonic I purchased it on Amazon for about $25. I just bought a second one as a back up. I was diagnosed in 2010. I am able to get in bed at night with no coughing. I am on oxygen at night as of a year ago. But, not during the day. I just couldn't stand to be tethered all day.

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I was diagnosed in 2012. I am also doing the chest clearance 2x a day alternating Acapella and Lung Flute. i tried 3%, 7%, 9% and even 10%. I stay with the 7%. I do the chest clearance regularly even i do not feel any improvement from it because I thought I. Ight be worse if I do not do it. Even with the regular nebulization, I could not cough up phelgm. The only way for me to be tested is via Bronchoscopy. My fatigue goes and off, but not enough to bother me. It is the shortness of breath that gives me so much discomfort. My oxygen saturation is between 93-99 (very rarely at 93 and 99 but normally at 97%). I am on Spiriva and ProAir too…but i stopped the ProAir 2 days ago, though because it gives me throat irritation even with diligent gargling).

@windwalker

@mary0310 Hi Mary. Well, that is distressing news. Did you see my post of how I was treated with alternating antibiotics? Do you know what the suseptibilty test showed for which antibiotics will and will not work? I am going to send a private email to you with my phone number. You can call me and chat to get more info if you want. I will be available all day today.

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@windwalker …i had my susceptibility testing done…I am Intermediate to Ethambutol and Rifampin and susceptible to the Azith/Clarith. I am not too concerned about the intermediate result of,the other 2 antibiotics because it can still be effective for as long as the 3 antibiotics are taken together. There has been a study that the purpose of multi-therapy on NTM’s is to prevent developing resistance to the core treatment which is the macrolide. I will check your post on alternating antibiotics. Thanks!

P.S. What is the title of your post on alternating antibiotics? Thanks again!

@windwalker

@mary0310 Hi Mary. Well, that is distressing news. Did you see my post of how I was treated with alternating antibiotics? Do you know what the suseptibilty test showed for which antibiotics will and will not work? I am going to send a private email to you with my phone number. You can call me and chat to get more info if you want. I will be available all day today.

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@mary0310 Mary, I was alternated with doxycycline one month for ten days and then switched to cipri the next month for ten days. This killed the mac plu the switching back and forth was to prevent resistance. These two antiotics aren't as toxic as the Big 3, can ask your dr about it. Also, what may be diffetent for you from me is that you now have intracellulare, which is a different ballgame.

@windwalker

@mary0310 Hi Mary. Well, that is distressing news. Did you see my post of how I was treated with alternating antibiotics? Do you know what the suseptibilty test showed for which antibiotics will and will not work? I am going to send a private email to you with my phone number. You can call me and chat to get more info if you want. I will be available all day today.

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The medications for M. Avium and Intracellulare are basically the same. I havn’t heard/read about the alternating of Doxy and Cipro for MAC as the first line of treatment. But, whatever works, why not. Only, I cant take the cipro due to some nerve problems.

@mary0310 I know intracellulare can be tough to combat. I will hold you close in my thoughts. If I hear anything about new treatments on the horizon, I will let you know. I am going to try to make it to the medical conference on D.C. this summer to see if they have any updated info. I went last year and learned a lot.

Liked by tdrell

@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.

@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.

Liked by Jen_b

@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 Thanks, Terri. I am grateful and feel very lucky. I'm fighting an exacerbation currently from a virus I picked up that turned into HIB but the antibiotic killed the bacteria so now just in recovery mode. I guess I didn't realize that MAI was tougher to treat. Anyway, the meds were worth it for me and I'm glad I didn't have weigh serious side effects against treatment.

@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?

@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

Liked by Jen_b

@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?

@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?

@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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