Crypto, MAC and Mycobacterium Abscesses

Posted by miloandlisa @miloandlisa, Aug 18, 2021

I was recently diagnosed with cryptocococcis, MAC, and abscesses; I am currently being treated for the crypto and have to be on an anti-fungal for six months. Then, they will address the MAC and abscesses. After reading other posts, etc., I am concerned that MAC and abscesses will continue to grow and be " put on the back burner" and the crypto was addressed first.

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

Hello, and welcome to the Mayo Connect community. We are people living with a wide variety of diseases and conditions, who try to help one another along the way. We each strive to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your questions.

Here in the MAC and Bronchiectasis group, you will find people who have experienced a variety of unusual infections dur to our less than competent lungs.

MAC stands for Mycobacterium Avium Complex and Abscessus is but one strain. In general M Abscessus is considered a rapid growing strain of MAC, but that is relative – in general MAC is very slow to spread. There are a few things you can do to help keep it from growing as rapidly while you are waiting for the Crypto to be treated.

Here are a few questions that will help us tell you what has worked for us. What symptoms led you to seek treatment? Are you seeing a pulmonologist or infectious disease specialist? Do you also have bronchiectasis or another lung condition?

Initial reading about M abscessus, crypto, bronchiectasis and related conditions can be overwhelming. The people here have learned how to live with these, and the sometimes unpleasant medications and tiresome airway clearance regimes needed to stay healthy. We are always willing to step in and try to help you.
Sue

REPLY
@sueinmn

Hello, and welcome to the Mayo Connect community. We are people living with a wide variety of diseases and conditions, who try to help one another along the way. We each strive to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your questions.

Here in the MAC and Bronchiectasis group, you will find people who have experienced a variety of unusual infections dur to our less than competent lungs.

MAC stands for Mycobacterium Avium Complex and Abscessus is but one strain. In general M Abscessus is considered a rapid growing strain of MAC, but that is relative – in general MAC is very slow to spread. There are a few things you can do to help keep it from growing as rapidly while you are waiting for the Crypto to be treated.

Here are a few questions that will help us tell you what has worked for us. What symptoms led you to seek treatment? Are you seeing a pulmonologist or infectious disease specialist? Do you also have bronchiectasis or another lung condition?

Initial reading about M abscessus, crypto, bronchiectasis and related conditions can be overwhelming. The people here have learned how to live with these, and the sometimes unpleasant medications and tiresome airway clearance regimes needed to stay healthy. We are always willing to step in and try to help you.
Sue

Jump to this post

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:)

REPLY
@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:)

Jump to this post

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

REPLY
@sueinmn

Hello, and welcome to the Mayo Connect community. We are people living with a wide variety of diseases and conditions, who try to help one another along the way. We each strive to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your questions.

Here in the MAC and Bronchiectasis group, you will find people who have experienced a variety of unusual infections dur to our less than competent lungs.

MAC stands for Mycobacterium Avium Complex and Abscessus is but one strain. In general M Abscessus is considered a rapid growing strain of MAC, but that is relative – in general MAC is very slow to spread. There are a few things you can do to help keep it from growing as rapidly while you are waiting for the Crypto to be treated.

Here are a few questions that will help us tell you what has worked for us. What symptoms led you to seek treatment? Are you seeing a pulmonologist or infectious disease specialist? Do you also have bronchiectasis or another lung condition?

Initial reading about M abscessus, crypto, bronchiectasis and related conditions can be overwhelming. The people here have learned how to live with these, and the sometimes unpleasant medications and tiresome airway clearance regimes needed to stay healthy. We are always willing to step in and try to help you.
Sue

Jump to this post

I appreciate this group and have learned a lot. Thank you Sue and Thumper and all the rest who actively participate

REPLY
@sueinmn

Hello, and welcome to the Mayo Connect community. We are people living with a wide variety of diseases and conditions, who try to help one another along the way. We each strive to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your questions.

Here in the MAC and Bronchiectasis group, you will find people who have experienced a variety of unusual infections dur to our less than competent lungs.

MAC stands for Mycobacterium Avium Complex and Abscessus is but one strain. In general M Abscessus is considered a rapid growing strain of MAC, but that is relative – in general MAC is very slow to spread. There are a few things you can do to help keep it from growing as rapidly while you are waiting for the Crypto to be treated.

Here are a few questions that will help us tell you what has worked for us. What symptoms led you to seek treatment? Are you seeing a pulmonologist or infectious disease specialist? Do you also have bronchiectasis or another lung condition?

Initial reading about M abscessus, crypto, bronchiectasis and related conditions can be overwhelming. The people here have learned how to live with these, and the sometimes unpleasant medications and tiresome airway clearance regimes needed to stay healthy. We are always willing to step in and try to help you.
Sue

Jump to this post

In answer to your questions in 1978 I began getting sick. I was diagnosed with bronchitis in 1982. I had pneumonia six times in 2 1/2 years. It was determined that I needed a lobe removal which I did in 1986. Since that time I have been on an antibiotic routine when I have an episode. I have two inhalers Symbicort and Spiriva that I use every morning and proair as a rescue inhaler. I was exposed to COVID in Dec when I was at the hospital for an unrelated surgery and on 12/26 got a steroid shot. I have had more episodes than normal since then and was referred to Univ of MI for a second opinion. It was determined my bronchiectasis is being treated well but seem to not tolerate eating at times (no specific food but always after my dinner). I go into coughing sprees until I am able to clear what seems to be phlegm around the Adam’s apple. I will go to a vocal specialist next at U of M to figure out how to stop that from happening. I do nebulize with 7% thanks for this group and it does help with my coughing spree. I do have a spot on my lung which they will do a scope on and diagnose but it has been there a few years but not growing. Anyone else have a similar issue? Thanks for asking and sorry for the long post.

REPLY
@vfparker

In answer to your questions in 1978 I began getting sick. I was diagnosed with bronchitis in 1982. I had pneumonia six times in 2 1/2 years. It was determined that I needed a lobe removal which I did in 1986. Since that time I have been on an antibiotic routine when I have an episode. I have two inhalers Symbicort and Spiriva that I use every morning and proair as a rescue inhaler. I was exposed to COVID in Dec when I was at the hospital for an unrelated surgery and on 12/26 got a steroid shot. I have had more episodes than normal since then and was referred to Univ of MI for a second opinion. It was determined my bronchiectasis is being treated well but seem to not tolerate eating at times (no specific food but always after my dinner). I go into coughing sprees until I am able to clear what seems to be phlegm around the Adam’s apple. I will go to a vocal specialist next at U of M to figure out how to stop that from happening. I do nebulize with 7% thanks for this group and it does help with my coughing spree. I do have a spot on my lung which they will do a scope on and diagnose but it has been there a few years but not growing. Anyone else have a similar issue? Thanks for asking and sorry for the long post.

Jump to this post

@vfparker…I've had similar problems after eating. My asthma and bronchiectasis are caused by acid reflux which was determined in part to be caused by a hiatal hernia and opening in that area. Fundiplication surgery fixed it and I was free from exacerbations for 6 years. It was great! I still cleared my lungs every day with nebulizing and postural drainage. Last year the trouble started again. Had my Endoscopy yesterday and there is a small hernia. I hope to have surgery again and another 6 years of good health! My pulmonologist will have to convince GI people it is needed now. You may want to have an evaluation by the Gastro people. Good luck.

REPLY
@egayle187

@vfparker…I've had similar problems after eating. My asthma and bronchiectasis are caused by acid reflux which was determined in part to be caused by a hiatal hernia and opening in that area. Fundiplication surgery fixed it and I was free from exacerbations for 6 years. It was great! I still cleared my lungs every day with nebulizing and postural drainage. Last year the trouble started again. Had my Endoscopy yesterday and there is a small hernia. I hope to have surgery again and another 6 years of good health! My pulmonologist will have to convince GI people it is needed now. You may want to have an evaluation by the Gastro people. Good luck.

Jump to this post

Oh wow. Thanks for the feedback. I am scheduled for Univ of MI for Michigan Medicine Otolaryngology Clinic which is ENT. I will certainly ask about that. I have coughed so much my ribs hurt from wrenching. I am anxious to get relief and to the bottom of this.

REPLY
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