1. < MAC & Bronchiectasis

MAC infection in knee?

Posted by lisw @lisw, Jun 22, 2023

I have MAC in my lungs and recently began treatment. Failed total knee replacement January 26, 2023 and scheduled revision surgery for October 2023. Knee becoming more swollen and painful. Orthopedist now suspects MAC in my knee. Anyone else with this?

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Renee | @rchildress | Jun 29, 2023

I did watch the very interesting video that Sue posted. Do I have to go through a doctor to nebulize with saline? None of the 3 doctors I have seen mentioned any of this to me. They Only think I need these terrible medications. I will contact my PA and get this if required but don’t want to ask if I can do this myself. My goal is: At the end of the 4 months when I get another CT I want to show them that one can improve without the horrible drugs with side effects.
Thanks

REPLY
Renee | @rchildress | Jun 29, 2023
In reply to @sueinmn "If you have MAC in your lungs, something is not normal in your airways. 90% of..." + (show)
@sueinmn

If you have MAC in your lungs, something is not normal in your airways. 90% of the time I breathe fine too, but...MAC only can take hold and grow if there are pockets of mucus for it to hide in - if your airways expel all the mucus in the normal course of the day, there is no home for it. If the CT shows MAC - either nodules or cavities, you need help to expel it. And it takes many months, if not years, to grow enough so you test positive for it in a culture.

Here is what Dr McShane, one of the foremost experts in treating NTM (non-tubercular mycobacteria) of which MAC is one type, has to say on the topic:
https://www.youtube.com/watch?v=L-EHohMe7II

You might want to discuss this, sooner rather than later, with your doc.
Sue

Jump to this post

I probably posted my reply in the wrong place so if you see it please answer my questions. If not let me know and I will try to send to you. Basically says.
Great video and do I need to see a doctor to do this?

REPLY
Renee | @rchildress | Jun 29, 2023
In reply to @irenea8 "But you could nebulize 7% saline and that is the best way to keep the MAC..." + (show)
@irenea8

But you could nebulize 7% saline and that is the best way to keep the MAC at bay and help your body fight it. Then you might not need the Azithromycin?

Jump to this post

Thanks.
Di you have any recommendations on a nebulizer and solution. I believe I will try this

REPLY
Renee | @rchildress | Jun 29, 2023
In reply to @sueinmn "If you have MAC in your lungs, something is not normal in your airways. 90% of..." + (show)
@sueinmn

If you have MAC in your lungs, something is not normal in your airways. 90% of the time I breathe fine too, but...MAC only can take hold and grow if there are pockets of mucus for it to hide in - if your airways expel all the mucus in the normal course of the day, there is no home for it. If the CT shows MAC - either nodules or cavities, you need help to expel it. And it takes many months, if not years, to grow enough so you test positive for it in a culture.

Here is what Dr McShane, one of the foremost experts in treating NTM (non-tubercular mycobacteria) of which MAC is one type, has to say on the topic:
https://www.youtube.com/watch?v=L-EHohMe7II

You might want to discuss this, sooner rather than later, with your doc.
Sue

Jump to this post

I did ask him and he agreed that it could help. Any particular kind better than another?

REPLY
2 replies
irenea8 | @irenea8 | Jun 29, 2023
In reply to @rchildress "I did ask him and he agreed that it could help. Any particular kind better than..." + (show)
@rchildress

I did ask him and he agreed that it could help. Any particular kind better than another?

Jump to this post

If you search there are discussions on nebulizers. Everyone has a different preference. Personally I have always used either the Pari Vios or the Pari ProNeb Max. That is the compressor part of it. Then you also need the nebulizer or the cups called Pari Sprint or Pari LC Plus. When you order the cups they come with the tubing. So you basically have three parts: the compressor, the cup, the tube. At first it seems complicated but once you get into the routine it is not. You should replace the tube every two weeks since it cannot be cleaned. To dry it out after use you detach the cup and run the compressor with the tube (I hang mine over a dining chair back) for 3 minutes to dry it out. Then store it someplace it will stay clean. The cups you need to follow the directions for cleaning and disinfecting. But it becomes routine. The saline can be prescribed by your Dr and picked up at a pharmacy. It is called hypertonic saline 3 or 7%. 7 is more effective but some people only tolerate 3%. You can also order the hypertonic saline on Amazon and if you need the link i can message you with it. I get all my Pari equipment at justnebulizers.com. They are fast. But there are other places online. I hope this helps. Most people follow the nebulizing with the use of something called an Aerobika. It is a flutter device you breath with in a certain way to loosen the mucus. It is just as important as the nebulizing in my opinion. You could just start with the nebulizing as this all must sound like alot!

REPLY
1 reply
lisw | @lisw | Jun 29, 2023
In reply to @rchildress "I did ask him and he agreed that it could help. Any particular kind better than..." + (show)
@rchildress

I did ask him and he agreed that it could help. Any particular kind better than another?

Jump to this post

Could these posts be categorized differently? They are no longer related to my original post asking if anyone has MAC in their knee.

REPLY
1 reply
Renee | @rchildress | Jun 29, 2023
In reply to @irenea8 "If you search there are discussions on nebulizers. Everyone has a different preference. Personally I have..." + (show)
@irenea8

If you search there are discussions on nebulizers. Everyone has a different preference. Personally I have always used either the Pari Vios or the Pari ProNeb Max. That is the compressor part of it. Then you also need the nebulizer or the cups called Pari Sprint or Pari LC Plus. When you order the cups they come with the tubing. So you basically have three parts: the compressor, the cup, the tube. At first it seems complicated but once you get into the routine it is not. You should replace the tube every two weeks since it cannot be cleaned. To dry it out after use you detach the cup and run the compressor with the tube (I hang mine over a dining chair back) for 3 minutes to dry it out. Then store it someplace it will stay clean. The cups you need to follow the directions for cleaning and disinfecting. But it becomes routine. The saline can be prescribed by your Dr and picked up at a pharmacy. It is called hypertonic saline 3 or 7%. 7 is more effective but some people only tolerate 3%. You can also order the hypertonic saline on Amazon and if you need the link i can message you with it. I get all my Pari equipment at justnebulizers.com. They are fast. But there are other places online. I hope this helps. Most people follow the nebulizing with the use of something called an Aerobika. It is a flutter device you breath with in a certain way to loosen the mucus. It is just as important as the nebulizing in my opinion. You could just start with the nebulizing as this all must sound like alot!

Jump to this post

Thank you. I found a nebulizer on Amazon that is portable and also found the saline. I will get it ordered

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 29, 2023
In reply to @lisw "Could these posts be categorized differently? They are no longer related to my original post asking..." + (show)
@lisw

Could these posts be categorized differently? They are no longer related to my original post asking if anyone has MAC in their knee.

Jump to this post

I'm sorry, sometimes these things just go off topic, but we have no way to move them within the system. Next time I see one, I will answer the question inside the correct discussion, and that should lead the rest of the thread to where it belongs. This was because I was hurrying, and not paying close enough attention to the title when I replied.
Sue

REPLY
bellsina71 | @bellsina71 | Nov 29, 2023
In reply to @squire123 "Mycrobacterium lentiflavin was first discovered in the skin in 1996, I have it in my lungs,..." + (show)
@squire123

Mycrobacterium lentiflavin was first discovered in the skin in 1996, I have it in my lungs, it's is an NTM. Ugly sister by a different mister to MAC.

Jump to this post

Hahaha. Love your analogy. Is it worse than Mac? That's very interesting. I never knew there was so many lung infections you could get until I got MAC. It is so weird.

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