Is watchful waiting (MAC) rational?

Posted by Lyle @macheese, Jan 5 12:42pm

They discovered MAC in my septum after months of fever and fatigue. PET scan was clean. My Infectious Disease doctor ordered a CT scan for me every six months until they need to treat. She says it may never come to that, could be very slow growing. Shouldn't we try something while the bacteria is sparse, rather than wait for it to grow inside my lungs? I'm thankful for this forum and any feedback!

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

Lyle, I’m fairly sure you can buy a nebulizer without an Rx. Similarly, low concentration (0.09%) saline solution. However, to suppress, perhaps kill MAC infection, you’ll likely need 7% strength and that will probably require a doctor’s Rx.

There are persons active on this forum who can provide a good deal more info about this without breaking a sweat so standby. Don

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I hope I am replying in the right place. Don't see the original posting, but just an FYI, I was able to find the 7% strength saline on Amazon without an Rx. However, with a doc's order it probably would be covered by insurance and you would be able to get it cheaper.

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@gej53

I hope I am replying in the right place. Don't see the original posting, but just an FYI, I was able to find the 7% strength saline on Amazon without an Rx. However, with a doc's order it probably would be covered by insurance and you would be able to get it cheaper.

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Yes with an Rx mine is $20 for 100 ampules

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@thumperguy

Lyle, I’m fairly sure you can buy a nebulizer without an Rx. Similarly, low concentration (0.09%) saline solution. However, to suppress, perhaps kill MAC infection, you’ll likely need 7% strength and that will probably require a doctor’s Rx.

There are persons active on this forum who can provide a good deal more info about this without breaking a sweat so standby. Don

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Don, thanks so much for the heads up, I've not come across this strategy, will do some research. Much appreciated!

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@gej53

I hope I am replying in the right place. Don't see the original posting, but just an FYI, I was able to find the 7% strength saline on Amazon without an Rx. However, with a doc's order it probably would be covered by insurance and you would be able to get it cheaper.

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Much appreciated, I will try this approach, I'm anxious to do something!

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Your insurance should also cover a nebulizer with an Rx from your doc. However, you can probably get one without it also. I did buy a travel nebulizer out of my own pocket. It works great

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Thanks for the update, I will speak to my doctor about this. Fingers crossed.

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Lyle,
Watchful waiting is definitely rational. After being diagnosed with BX/MAC, because I was , asymptomatic I did airway clearance for 1 1/2 years, three times a day to try to get rid of the MAC. I wanted to avoid the Big 3 for as long as I could because of the potential severe side effects and even if mild effects, they really compromises one's immune system. Unfortunately, my sputum results kept being positive so I've been on the Big 3 meds for four months now. I question whether I should have gone on the meds instead of continuing to do airway clearance. There are studies that show that one can get rid of the MAC through airway clearance though the percentage of people who succeed is not high but it's possible. Unfortunately the lab I use does not do colony counts so there's no way to tell whether over the 1 1/2 years of airway clearance, the colony of MAC was decreasing or not. If the colony count gets low enough, you don't need to be on the Big 3.

I found this talk by Dr. Gwen Huitt at National Jewish helpful about when to be treated with antibiotics and when not to:

To Treat or Not to Treat
Gwen Huitt

Does your lab do colony counts of your sputum culture? Your doctor can ask that your sputum sample be sent to NJH for the colony count. You don't have to be a patient of NJH to get the colony count done at their lab.
Hope this helps,
lora jo

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@ljfoo

Lyle,
Watchful waiting is definitely rational. After being diagnosed with BX/MAC, because I was , asymptomatic I did airway clearance for 1 1/2 years, three times a day to try to get rid of the MAC. I wanted to avoid the Big 3 for as long as I could because of the potential severe side effects and even if mild effects, they really compromises one's immune system. Unfortunately, my sputum results kept being positive so I've been on the Big 3 meds for four months now. I question whether I should have gone on the meds instead of continuing to do airway clearance. There are studies that show that one can get rid of the MAC through airway clearance though the percentage of people who succeed is not high but it's possible. Unfortunately the lab I use does not do colony counts so there's no way to tell whether over the 1 1/2 years of airway clearance, the colony of MAC was decreasing or not. If the colony count gets low enough, you don't need to be on the Big 3.

I found this talk by Dr. Gwen Huitt at National Jewish helpful about when to be treated with antibiotics and when not to:

To Treat or Not to Treat
Gwen Huitt

Does your lab do colony counts of your sputum culture? Your doctor can ask that your sputum sample be sent to NJH for the colony count. You don't have to be a patient of NJH to get the colony count done at their lab.
Hope this helps,
lora jo

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Yes, your insights are most helpful! I'm hoping my ID doctor will let me do saline, if not I'll pay for it myself. So many unknowns, it's overwhelming. Thanks again for the YouTube link.

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@thumperguy

Lyle, I’m fairly sure you can buy a nebulizer without an Rx. Similarly, low concentration (0.09%) saline solution. However, to suppress, perhaps kill MAC infection, you’ll likely need 7% strength and that will probably require a doctor’s Rx.

There are persons active on this forum who can provide a good deal more info about this without breaking a sweat so standby. Don

Jump to this post

For your information you can purchase the 7% saline solution on Amazon.

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@ljfoo

Lyle,
Watchful waiting is definitely rational. After being diagnosed with BX/MAC, because I was , asymptomatic I did airway clearance for 1 1/2 years, three times a day to try to get rid of the MAC. I wanted to avoid the Big 3 for as long as I could because of the potential severe side effects and even if mild effects, they really compromises one's immune system. Unfortunately, my sputum results kept being positive so I've been on the Big 3 meds for four months now. I question whether I should have gone on the meds instead of continuing to do airway clearance. There are studies that show that one can get rid of the MAC through airway clearance though the percentage of people who succeed is not high but it's possible. Unfortunately the lab I use does not do colony counts so there's no way to tell whether over the 1 1/2 years of airway clearance, the colony of MAC was decreasing or not. If the colony count gets low enough, you don't need to be on the Big 3.

I found this talk by Dr. Gwen Huitt at National Jewish helpful about when to be treated with antibiotics and when not to:

To Treat or Not to Treat
Gwen Huitt

Does your lab do colony counts of your sputum culture? Your doctor can ask that your sputum sample be sent to NJH for the colony count. You don't have to be a patient of NJH to get the colony count done at their lab.
Hope this helps,
lora jo

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@ljfoo Great video. Thanks for posting! Kate

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