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Crypto, MAC and Mycobacterium Abscesses

MAC & Bronchiectasis | Last Active: Aug 21, 2021 | Replies (7)

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@miloandlisa

Thank you for volunteering.

The only symptom I had was shortness of breath. I'm thinking the crypto was the cause of it. I did NOt have any MAC or MA symptoms - not a single one! Very weird.

I saw a pulmonologist first. They referred me to an infect. dis. doctor. In my humble opinion, I think the ID doc. was taken back by my combo of ailments.

Yes, I have bronchiectasis.

I was beyond terrified when I was told of all these issues. I cried for about a good month and half before I could compose myself. At least I have stopped crying:)

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Replies to "Thank you for volunteering. The only symptom I had was shortness of breath. I'm thinking the..."

Almost everyone has an emotional or panicky reaction to the diagnosis of an infection with bronchiectasis, especially when many publications say quite bluntly that there is no cure. But we can tell you there is life after diagnosis - and quite often a really good life.

The common denominator among people in this group is determination to live their best possible life. We share our experiences and successes. It may be helpful for you to read through some of the discussions here.

First, since you have bronchiectasis, does your pulmonologist have you doing daily nebulization and/or airway clearance? Both of these help to loosen the mucus and allow you to cough it out. This reduces the breeding grounds for bacteria. Many people here have had success with nebulizing a 7% saline solution, which not only thins the mucus, but creates an inhospitable environment for mycobacteria.

Another thing we have all learned is that not all doctors are experienced in treating bronchiectasis and associated infections. If you are able, it is great to find someone who is, or seek a referral to a good treatment center like National Jewish Health or Mayo. In my case, my ID and pulmo docs work together, and consult with NJH to confirm their treatment plans.

What did the doc tell you about next steps? What other questions do you have?
Sue