New to MAC and considering treatments options: What did you do?

Posted by ajwelsh @ajwelsh, Aug 11 9:27am

Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!

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

There are way more experts than I on this forum but if you are seeing a medical doctor at this point, you need to get in to see a pulmonologist who is familiar with the MAC diagnosis. He will hook you up with an infectious disease doc if necessary I would think, but lungs are the specialty of a pulmonologist and he/she should be able to give knowledgeable advice. You will also read about many peoples experiences here and how they have been treated.

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This was the pulmonologist that said these things to me. Should I ask him about an infectious disease specialist? I personally felt like once he ruled out lung cancer and lymphoma, he was much less responsive and willing to talk, even to the point of not calling back multiple calls. I may just need a new pulmonologist

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@ajwelsh

This was the pulmonologist that said these things to me. Should I ask him about an infectious disease specialist? I personally felt like once he ruled out lung cancer and lymphoma, he was much less responsive and willing to talk, even to the point of not calling back multiple calls. I may just need a new pulmonologist

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Hello – As someone who was seen and treated by a less than communicative pulmonologist first, and now have found an excellent team, I can tell you there are probably more pulmonologists who don't know much about MAC than there are skilled in treating it. To have him dismiss you like he did, I would guess he is in the don't know group. Not surprising because MAC is considered a rare disease, and is far less common than the asthma/COPD/emphysema trilogy that are the most common diagnoses.

So, the question becomes what to do next – following once a year is not a good recipe for lung health in my opinion. You need to know if you have another underlying lung condition like bronchiectasis, Cystic Fibrosis, COPD or chronic asthma. If so, you need proper treatment for that – airway relaxing meds, an airway clearance routine, and regular monitoring. You need a plan for dealing with breathing difficulties. You need a plan for when to contact the doc & how your MAC will be monitored. Most of all you need good and open communication with the treating doc or someone in their practice.

So, do you have any other lung conditions or a history of frequent pneumonia? Do you have access to a large group pulmonology practice or teaching hospital where you can look for a new doc?
Sue

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@ajwelsh

This was the pulmonologist that said these things to me. Should I ask him about an infectious disease specialist? I personally felt like once he ruled out lung cancer and lymphoma, he was much less responsive and willing to talk, even to the point of not calling back multiple calls. I may just need a new pulmonologist

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This is nothing to take lightly. My first pulmonologist did the very same thing – I was sent to an Infectious disease specialist at Cedars here on Los Angeles. I'm now on the three antibiotics & just started on Arikares. Long and tough fight but yes you need to be more pro-active as this can get out of control.

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@sueinmn

Hello – As someone who was seen and treated by a less than communicative pulmonologist first, and now have found an excellent team, I can tell you there are probably more pulmonologists who don't know much about MAC than there are skilled in treating it. To have him dismiss you like he did, I would guess he is in the don't know group. Not surprising because MAC is considered a rare disease, and is far less common than the asthma/COPD/emphysema trilogy that are the most common diagnoses.

So, the question becomes what to do next – following once a year is not a good recipe for lung health in my opinion. You need to know if you have another underlying lung condition like bronchiectasis, Cystic Fibrosis, COPD or chronic asthma. If so, you need proper treatment for that – airway relaxing meds, an airway clearance routine, and regular monitoring. You need a plan for dealing with breathing difficulties. You need a plan for when to contact the doc & how your MAC will be monitored. Most of all you need good and open communication with the treating doc or someone in their practice.

So, do you have any other lung conditions or a history of frequent pneumonia? Do you have access to a large group pulmonology practice or teaching hospital where you can look for a new doc?
Sue

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I'm just trying to figure my own program out as well. I'm doing anything and Everything I can to try and fight this as it's really made my life miserable. I'm doing the three antibiotics three times weekly, I'm using Albuterol in a nebulizer, an Acapella valve and just started Arikares. I'm also sitting on a box of 7% saline but I'm just trying to figure out where I put this in my program as I'm a bit overloaded & still need to work and get things done. Any ideas? Am I on the right track here? Your thoughts would be really welcome.

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@lweirdo1

I'm just trying to figure my own program out as well. I'm doing anything and Everything I can to try and fight this as it's really made my life miserable. I'm doing the three antibiotics three times weekly, I'm using Albuterol in a nebulizer, an Acapella valve and just started Arikares. I'm also sitting on a box of 7% saline but I'm just trying to figure out where I put this in my program as I'm a bit overloaded & still need to work and get things done. Any ideas? Am I on the right track here? Your thoughts would be really welcome.

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Well, I was absolutely a skeptic about 7% saline at first – it just sounded too simple. But… I am a fervent convert, and it may just have been the best thing I have done since diagnosis. For the first time in roughly 15 years, I have had upper respiratory infections (3 now) that did not evolve into either bronchitis or pneumonia. I credit the 7% saline keeping my lungs clear of mucus so the germs cannot take up residence. If I were you, I would (seriously) find myself a little battery powered hand held nebulizer and start the 7% saline routine. It takes about 10-15 minutes morning and evening. You can even do it while you watch the news or read email. Don't let all the descriptions of complicated cleaning routines scare you! I soak mine in hot water and a drop of dish soap, rinse & air dry. Once every week or 2, I boil it in a saucepan (most other people here seem to use a microwave sterilizer bag) Either one takes about as long as it takes to load or unload the dishwasher.
Maybe @thumperguy can convince you…
Sue

REPLY
@sueinmn

Well, I was absolutely a skeptic about 7% saline at first – it just sounded too simple. But… I am a fervent convert, and it may just have been the best thing I have done since diagnosis. For the first time in roughly 15 years, I have had upper respiratory infections (3 now) that did not evolve into either bronchitis or pneumonia. I credit the 7% saline keeping my lungs clear of mucus so the germs cannot take up residence. If I were you, I would (seriously) find myself a little battery powered hand held nebulizer and start the 7% saline routine. It takes about 10-15 minutes morning and evening. You can even do it while you watch the news or read email. Don't let all the descriptions of complicated cleaning routines scare you! I soak mine in hot water and a drop of dish soap, rinse & air dry. Once every week or 2, I boil it in a saucepan (most other people here seem to use a microwave sterilizer bag) Either one takes about as long as it takes to load or unload the dishwasher.
Maybe @thumperguy can convince you…
Sue

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Such a good tip. I’m all over it and I hope it works

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@ajwelsh

This was the pulmonologist that said these things to me. Should I ask him about an infectious disease specialist? I personally felt like once he ruled out lung cancer and lymphoma, he was much less responsive and willing to talk, even to the point of not calling back multiple calls. I may just need a new pulmonologist

Jump to this post

Hi!
YES! Definitely seek a new pulmonologist and do your homework! Sue is right, this is a rare disease and most doctors know VERY little about it. Excellent advice to see if there is a teaching hospital near you. The experts are at National Jewish Hospital and you may can find some educational resources on their website. Also look up NTM info and aboutntm.com. What your doc did not tell you is that this is a life long battle and not everyone is the same degree of sick, experience the same symptoms or are effected by treatment the same. I would strongly advise you to research the FACTS. Also, you should have a lung function test and CT scan to help in your evaluation – gold standard for someone with MAC.
Hope this helps!

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I am in the same boat as you. I had repeated Ct chest for last year and a half and ea. time Mac has gotten worse. I too am not sick enough for Antibiotics at this point. They told me treatment is worse than disease. I just started with infectious disease and she immediately did blood work for underlying disease and sent my bronchoscopy specimen for sensitivity testing. This will let them know what antibiotics to use when and if we decide to start treatment. I tried 3 % then 7% saline in nebulizer both makes my throat so sore I can’t do it. It really dries me out. I’m going to talk to my doctor next month about it. It seems to work for most everyone. I wish you all the best of luck. I’m at my wits end on what to do as well.

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