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4 hours ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I had a similar reaction when I asked. I also asked companies that sell home water treatment products and got the same reply from them too!

How do you start to track someone down to test your water???

Thanks

2 days ago · 7% Saline Solution in MAC & Bronchiectasis

Thanks to Sue and Don for your replies. I’ll take a break from it and perhaps even try every couple of days. I still have a box of 7% ampules left and i hate to get rid of it when it is supposed to be better (and it was expensive and not covered by any plan).

I think it was probably broken capillaries or some sort of related irritation but I will check next time i see my doctor.

3 days ago · 7% Saline Solution in MAC & Bronchiectasis

I found that 7% irritated my throat/trachea so much that I coughed up a bit of mucousy blood for the first time since. It was pretty scary and I’m sure that can’t be good. I went back to 3%, which I have been using since September without incident.

I’ve wondered if 5% might be a good compromise? It’s even harder to find than 3% though.

Any thoughts on coughing up blood? Do you get used to the 7% over time?

Sat, Jan 11 8:29am · 7% Saline Solution in MAC & Bronchiectasis

The vials are 4 ml so that’s probably okay. I’ll keep at it but I’m glad to hear that others experienced some challenges with this and I’m not alone.

The pharmacist (at the hospital outpatient pharmacy where I bought the saline) said that they typically sell 7% saline and don’t even carry 3%.

Sat, Jan 11 7:41am · 7% Saline Solution in MAC & Bronchiectasis

Thanks. I used all of my 3% but this is a good idea. I’m taking a few little breaks with the 7% because it irritates my throat and makes me cough while using it. I’ll keep doing this until I get used to it.
It makes me cough a lot more than the 3% did so I’ll be patient with this part of getting used into it.
Thanks again.

Wed, Jan 8 4:00pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I am also curious about dietary changes that you've made to reduce/get rid of GERD. My doctor told me not to eat or drink anything for 3 hours before going to bed and elevate the head of my bed to 30 degree angle. It was almost impossible to sleep with this angle so I reduced it a bit and it still seems to be helpful.

There was a good presentation on this at a conference on MAC; someone posted it here within the last couple of months. I watched it but didn't save it and I can't remember where the conference was held or who the speakers were. I'm sorry but it seems to be much the same information as that which I got from my doctor.

Thanks,

Wed, Jan 8 6:58am · 7% Saline Solution in MAC & Bronchiectasis

Thanks for your message – I’m trying 7% saline in my nebulizer when I finish my 3% and I’ll know that I can expect it to bother my throat. I’m glad to hear it worked so well. I’ve used 3% for a few months and it usually makes me cough up stuff but not as much or as often as it should.

Have people had other side effects from the 7% saline?

Tue, Jan 7 8:54am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I was told not to use it at all. I didn’t know about Mac liking the charcoal filters but I was told that it takes about 2 weeks for Mac to colonize and therefore if could be worse to use it than just using plain tap water.
Perhaps others have opinions but we got rid of ours and got a reverse osmosis system instead – I’ve still heard concerns even about that but it’s the best we could do without buying plastic bottles of filtered water and creating more recycling/garbage.