Delaying treatment question

Posted by meadows @meadows, Sep 30, 2023

Are any out there who delayed treatment and wish they had not. I have 0 symptoms despite the broncoscopy results being positive. Obviously one has to discuss this with their doctor, and eachpatient is different, but I'd love to hear from others who had no symptoms to see if they put off treatment as advised by their doctors, etc. . Thanks very much.

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

Here is an excellent video by Dr Daley from National Jewish.
It explains why watchful waiting is often the best course and
lays out the guidelines of when it is a good idea and when you
should be treated now.

Sorry did not see that this had already been posted. Feel free to delete this duplicate.

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@sueinmn

Your second doc is correct. In less severe stages, "wait and watch" when combined with airway clearance and other precautions IS a form of treatment.
By the way, these actions can in fact help you convert to "negative" for MAC in some cases. Or keep the numbers and location of the bacteria limited and contained for a long period so that the 3-antibiotic regimen is never needed.
Here is a very good, if somewhat long, video about this from National Jewish Health, recorded just this year.
https://www.youtube.com/watch?v=bcvHKHzi4Q0&t=1388s
I hope you can manage to stay healthy with preventive measures!
Sue

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Thank you, Sue. Wow that is a great educational tool. And thank you for helping this community with your beautifully organized group here. I could never find all of the medical documents from studies and YouTube videos from expert panels and conferences on my own laptop. There are so many and I’m not a great organizer, but I know I can always come here and search this group And find so much information. And the balanced discussions and confirmation that all of us are on very individualized paths. The different strains and their affects on our bodies and the timeline considerations for care are so vast. I want to acknowledge all of the shared compassion we all have for each other in this community. And say everything we do here and talk about here, hopefully will guide the scientific community and their research. Did you see the news last week about a $300 million US investment in research for fighting antibiotic resistant pathogens? I think it was $300 million…

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@meadows

Thanks very much for writing. I hope the treatments help you once you can begin them.

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The treatments of the antibiotics and inhaled Arikayce did wonders although it took a while for improvement due to the damage that occurred within such a short time and possibly not starting treatment sooner. The treatment shrunk a 10 cm cavity to 4 and has kept me stable.

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That's great it shrunk the cavity and you are not stable. Thanks for sharing.

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@rstel7272

No, I've seen 6 pulmonologist's, 100's of tests. Alpha-1 may have contributed. Scar tissue has made a mess of the lungs. Currently treating aspergillus.

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Can I ask why the scar tissue has made a mess of the lungs? Or what do you mean by that? I have a large scar too, I hope it doesn't cause any issues! I never heard of scar tissue causing issues. How are you doing now? I am not sure what aspergillus is. I'm going to have to look that up! I have also seen an immunologist that ran dozens of tests, besides the tests from my ID, doctor and regular doctor and they can't figure out why I got this either. Initially they thought I had lung cancer but the ruled that out which I'm so grateful for! I did smoke for many years and I do wonder if that's what caused it. I was a heavy smoker . Thanks for your input!!
Angela

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@suzyqueue

I hadn't delayed on purpose, but waiting for particular results, I had a 10 cm cavity form within 30 days. The NTM site that is referred to on here strongly suggests starting treatment asap. I wish I had started sooner. The damage depending on strain can be dangerous

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Suzyqueue, you developed a 10 cm cavity and 30 days?! I was just making sure that was correct. That's insane. I also had a lot of nodules and consolidation that moved from one lung to the other very quickly and they were extremely concerned about that. That was in about 30 days. So I guess these things happen, but it's not very common that it happens that quick. Thankfully. In my case, the antibiotics worked very well. I hope you're doing good!)))

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@bellsina71

Can I ask why the scar tissue has made a mess of the lungs? Or what do you mean by that? I have a large scar too, I hope it doesn't cause any issues! I never heard of scar tissue causing issues. How are you doing now? I am not sure what aspergillus is. I'm going to have to look that up! I have also seen an immunologist that ran dozens of tests, besides the tests from my ID, doctor and regular doctor and they can't figure out why I got this either. Initially they thought I had lung cancer but the ruled that out which I'm so grateful for! I did smoke for many years and I do wonder if that's what caused it. I was a heavy smoker . Thanks for your input!!
Angela

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I went in 4 years ago for a resection. Afterwards the surgeon said he could not remove the cavity I had due to the amount of scar tissue present in the lung form previous infections. So I went through the VATS with no improvement but still suffered the recovery. I talked to several Doctors recently about a lobectomy with differing opinons on the success chances and risks.
I am keeping my scarred cavity for now. I get along OK with antibiotics and some o2

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Yes. The cavity started out looking like a small area of pneumonia or only a "nodule" at first. Within 30 days it grew into that size of a cavity. It's not unusual for that to happen without treatment with certain strains of this disease. They originally wanted to remove that upper left lobe as well and I was scheduled to do so within a couple weeks. Then my right lung collapsed from it spreading.

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