1. < MAC & Bronchiectasis

Now infected with mycobacterium abscessus

Posted by pollyflinders @pollyflinders, Jul 31, 2023

Had follow up appointment today after broncoscopy. Have been on big 3 for 7 months for mycobacterium intracellulare and sample was clear for this …but now I’m infected with abscessus. So devastated and anxious. Not sure yet what treatment will be. Anyone else in same boat?

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tconz | @tconz | May 27 3:02pm
In reply to @rstel7272 "Thanks, So many of us have or had aspergillus, I am searching for answers. I'm in..." + (show)
@rstel7272

Thanks, So many of us have or had aspergillus, I am searching for answers. I'm in month 8 of vfend and the worst side effect for me is my outer layer of skin just flakes off with the slightest contact. This is probably why the vfend patients are prone to skin cancer and vfend is banned in certain countries.

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I have never heard about skin cancer from Voriconazole. That is very concerning.

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1 reply
Rick | @rstel7272 | May 27 4:27pm
In reply to @tconz "I have never heard about skin cancer from Voriconazole. That is very concerning." + (show)
@tconz

I have never heard about skin cancer from Voriconazole. That is very concerning.

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I've always been a sun worshiper, easy tan, never burned. Now I wear a wide brimmed hat, sleeves and plenty of sunscreen. Last year, nobody told me about my lips. They got burned! Then I found out what lip balm with spf is.

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rbl | @rbl | May 28 6:06am

I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off meds. 2 weeks ago and now my March sputum sample just came back positive for MAC… they sent it out to identify what it is. I am so deflated and disappointed after 18 months of meds. I don’t want to do this all over again, not sure what the plan will be going forward. Seeing doc next Monday.

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5 replies
Rick | @rstel7272 | May 28 7:46am
In reply to @rbl "I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off..." + (show)
@rbl

I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off meds. 2 weeks ago and now my March sputum sample just came back positive for MAC… they sent it out to identify what it is. I am so deflated and disappointed after 18 months of meds. I don’t want to do this all over again, not sure what the plan will be going forward. Seeing doc next Monday.

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You should need more than one sample positive. How are your symptoms? CT scan?

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lilianna | @lilianna | May 28 8:12am
In reply to @rbl "I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off..." + (show)
@rbl

I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off meds. 2 weeks ago and now my March sputum sample just came back positive for MAC… they sent it out to identify what it is. I am so deflated and disappointed after 18 months of meds. I don’t want to do this all over again, not sure what the plan will be going forward. Seeing doc next Monday.

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Before it was found as positive did you have any signs, cough or other. I am sorry for you. I really am because I know how we wait for the end and boom it’s back. The world falls down. I hope you have a doctor who will help you and direct you through all this. My best and stay strong

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rbl | @rbl | May 28 8:16am

I agree, no symptoms except being tired and that’s just not sleeping well. Going for CAT tomorrow. They want another sample, it’s just so hard to get one.

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blm1007blm1007 | @blm1007blm1007 | May 28 11:47am
In reply to @rbl "I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off..." + (show)
@rbl

I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off meds. 2 weeks ago and now my March sputum sample just came back positive for MAC… they sent it out to identify what it is. I am so deflated and disappointed after 18 months of meds. I don’t want to do this all over again, not sure what the plan will be going forward. Seeing doc next Monday.

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So sorry to hear about what has happened. . Frustrating all this MAC etc. etc. and decisions, decsions. Try to stay positive in your talks with yourself.....I have had many, many talks with myself to keep me going and trying to do my best....Want that for you and all of us. !!!

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irene5 Irene Estes | @irene5 | May 29 8:02am
In reply to @rbl "I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off..." + (show)
@rbl

I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off meds. 2 weeks ago and now my March sputum sample just came back positive for MAC… they sent it out to identify what it is. I am so deflated and disappointed after 18 months of meds. I don’t want to do this all over again, not sure what the plan will be going forward. Seeing doc next Monday.

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@rblI am so very sorry for your plight. There’s a word for that!! Saying that stinks just doesn’t quite do the job! You definitely need a “poor baby” card. We used to give those when I taught school years ago. The MAC journey unfortunately can take many twists and turns. Try to stay positive - which isn’t easily done some days. Have you tried Arikayce? It may be what will zap that nasty invader for good! Praying for you because it really does stink!! And it’s ok to scream or cry or both! Irene5

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jill6063 | @jill6063 | May 30 6:48pm
In reply to @rbl "I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off..." + (show)
@rbl

I had 6 neg. Sputum samples from July 23 to Feb 24. I just got off meds. 2 weeks ago and now my March sputum sample just came back positive for MAC… they sent it out to identify what it is. I am so deflated and disappointed after 18 months of meds. I don’t want to do this all over again, not sure what the plan will be going forward. Seeing doc next Monday.

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Oh rbl I’m so sorry to hear this. I can only imagine how devastated you are. I am praying that your visit with the doctor on Monday will yield some glimmer of hope, and that family and friends can provide some measure of support for you as you continue to navigate this very tricky condition. Do keep us posted after your visit, and know that we are all here for you!

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1 reply
rbl | @rbl | May 30 7:34pm
In reply to @jill6063 "Oh rbl I’m so sorry to hear this. I can only imagine how devastated you are...." + (show)
@jill6063

Oh rbl I’m so sorry to hear this. I can only imagine how devastated you are. I am praying that your visit with the doctor on Monday will yield some glimmer of hope, and that family and friends can provide some measure of support for you as you continue to navigate this very tricky condition. Do keep us posted after your visit, and know that we are all here for you!

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Thank you, it’s nice to know others have conquered this nasty bug… I was so hoping to get my body back.

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