1. < MAC & Bronchiectasis

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

Posted by ajwelsh @ajwelsh, Aug 11, 2022

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 Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 15, 2022
In reply to @lweirdo1 "I'm just trying to figure my own program out as well. I'm doing anything and Everything..." + (show)
@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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Hello I weirdo 1. I love the name you chose to use. You can follow the Albuterol treatment with the 7% saline right in the same cup (but not together). It is important to get the airways open first with the albuterol and then do the saline to bring up any phlegm. This is done 2 times a day for lung hygiene. This should make your lungs cleared out and ready for the Arikayce. I can tell you this much, when I first joined this group in 2013; hardly anybody had heard of using the saline. Many in this group were feeling miserable, having repeated exacerbations, and feeling like death was near. There used to be a whole lot of crying going on within this group, (and fear). The attitudes have definitely shifted since most of this group's members have now gone to using the 7% saline. I know that fitting one more thing into your routine is a pain in the butt, but it is so worth it. How are you doing on the three antibiotics?

REPLY
Lyle | @macheese | Aug 15, 2022
In reply to @extracare808 "Not sure if they are still accepting participants, but someone on another message board recently said..." + (show)
@extracare808

Not sure if they are still accepting participants, but someone on another message board recently said they were eligible to participate, but reconsidered after realizing the trial requires a 5 year commitment and she didn't want to risk getting the placebo.

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I recently signed up for the Brensocatib trial, it's a 52 week commitment, a third of the group get placebo. The drug is very promising.

REPLY
1 reply
sallysearching | @sallysearching | Aug 15, 2022

Did they do a CT and diagnose you with Bronchiectasis as well as MAC?

REPLY
busybeans | @busybeans | Aug 15, 2022

Diagnosed in 2010, it is only now in 2022 that the meds are being recommended. Watchful waiting and a CT scan every six months have shown the NTM to be "waxing and waning" until this past June. Using an Aerobika and nebulizing saline solution to loosen the mucous has been effective as I am an unproductive cougher. I drink only bottled water since mycobacterium is found in air, water, and soil. I take 2 minute showers with the bathroom fan on to vent the mist. I've never purchased a special shower head but someone else may suggest that. I was told to stay out of swimming pools and away from restaurants that spray "cooling mists" while eating. Because mycobacterium is ubiquitous, it's hard to avoid. I've never responded on this board before but felt like you'd been kind of left out to dry without any info. I hope this little bit helps.

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extracare808 | @extracare808 | Aug 15, 2022
In reply to @macheese "I recently signed up for the Brensocatib trial, it's a 52 week commitment, a third of..." + (show)
@macheese

I recently signed up for the Brensocatib trial, it's a 52 week commitment, a third of the group get placebo. The drug is very promising.

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Oh, interesting. Not sure why the lady who posted said it was 5 years. I've heard very good things about it.

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1 reply
lweirdo1 | @lweirdo1 | Aug 15, 2022
In reply to @sueinmn "Perhaps you are hyperventilating as you neb? People often try to breathe very deeply to get..." + (show)
@sueinmn

Perhaps you are hyperventilating as you neb? People often try to breathe very deeply to get the solution deep into their lungs. But it's not good to breathe that deeply unless you slow down. I used to do it - my daughter who often used to do nebulizer education in the Emergency Room says "Inhale 1, 2, 3, 4. Hold 1, 2, 3, 4. Exhale 1, 2, 3, 4, 5. Pause 1, 2." It fixed my problem - are you willing to try it?

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Slowing down helped a little but still get light headed. Been reading that this does increase blood pressure and heart rate. Another quick question. How long did it take for you to notice the benefits of this process?!

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 15, 2022
In reply to @lweirdo1 "Slowing down helped a little but still get light headed. Been reading that this does increase..." + (show)
@lweirdo1

Slowing down helped a little but still get light headed. Been reading that this does increase blood pressure and heart rate. Another quick question. How long did it take for you to notice the benefits of this process?!

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I would say 3 weeks? @poodledoc & others, how long before you noticed the saline neb helping?

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1 reply
cate123456 | @cate123456 | Aug 15, 2022
In reply to @med08 "I am in the same boat as you. I had repeated Ct chest for last year..." + (show)
@med08

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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RE: sore throat w saline nebs.
Two things that I found that helps are switching from a mouth piece to a mask and breathing through nose/sinuses instead of mouth.
And I use some yogurt or thick cream to coat my throat before and while using the saline. Both these things made it so I can now use 7% or 3.5% regularly.

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