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Posts (162)

14 hours ago · 'PINK SLIME' Data Base in MAC & Bronchiectasis

Its great that your still able to work with what your dealing with!
I understand the time it takes to get ready in the morning, I can barely get out of the house by noon.
There's the duo nib salt nib and now Tobi nib plus 1/2 hour on the Vest.
I was just curious though what (prophlactic antibiotic inhalant) you are using daily.
Seems we have a lot in common. I had abcessus along with a lot of different asperigillus.


1 day ago · 'PINK SLIME' Data Base in MAC & Bronchiectasis

That's very interesting about NTM patients working in nursing and teacheing field.
I was working in a medical clinic in Urgent Care when I got so sick I finally had to retire. I just kept getting sickier and sicker. It was probably the worst place to be because just about everyone that came in had a virus, cold or some kind of bacteria. Yuck
Dont know how I lasted as long as I did.

2 days ago · Negative sputum results without treatment in MAC & Bronchiectasis

Jo Ann
I'm so sorry that's not the news we wanted to hear from you.
Try and keep the faith and not to be too discouraged.
Hopefully they will tweek your meds after the sensitivity report and get the right combo.
I know there is a big body mind connection and just getting news like that can effect your whole body. So try and not let that happen.
Im sending you a special prayer for healing tonight.


2 days ago · New MAI diagnosis with also a fungal infection in MAC & Bronchiectasis

Thanks Terri but I must say it's not a battle I would of chosen or any of us for that matter.
I am also so appreciative for
the help on this board I received too along the way.
I stay hopeful that in the not too far future there will be some effective breakthroughs in this war and we can all celebrate together.
Shari : )

3 days ago · New MAI diagnosis with also a fungal infection in MAC & Bronchiectasis

Sounds like you have really been through so much this year. You have found some very careing people here on this board.
I have had aspergillus quit a few times and unfortunately am being treated right now for it. I'm on Voriconizole right now. I have not had the kind you have anyway I don't think so. I usually have Niger or fumative variety. I have been told that the air is full of fungal spores and therefore they don't treat unless you are having symptoms or your CT scan shows it may be invasive. I'm also highly allergic to aspergillus with asthma so that makes it more complicated.
Do you have Bronchectasis or are you immune compromised? Or was this a sudden onset of problems?
I had bern testing positive to Mycobacteria Abcessus for quite a long time then I went to testing negative year and half ago. At the time I tested positive they said my ct scan wasn't bad enough to start the antibiotics so I didn't. Then I started testing negative.
It's a choice you must make with your Doctor because each patient is so different.
We have been discussing on these board that some statistics suggest that up to 40% of Mac patients convert back negative without medication. So that's a good thing to know.
I talked to my infectious disease Doctor and my pulminologist plus I got a second opinion at the Mayo before deciding.
Hoping some of this helps!

3 days ago · Negative sputum results without treatment in MAC & Bronchiectasis

Thanks for info on water filters!
For now I will not put up the shower filter up to remove the chlorine.
I guess I will keep taking short ventilated showers like you. I know I am super sensitive to chlorine smell or any chemicals or scents for that matter. I do have asthma also and can feel my lungs react negative to them.
I do drink spring water as I heard that's better than filtered water.
I will watch for the conference to be put on YouTube. I guess I heard it will take a couple of weeks to edit it.


4 days ago · Negative sputum results without treatment in MAC & Bronchiectasis

That's great!!
My story is similar to yours I went from over a year of positive tests to negative without drugs.
I also use colloidal silver and NAC and some other herbs I found out about from the book Herbal Antibiotics by Stephen Buhner.
Good to hear others have the same experience.

4 days ago · Negative sputum results without treatment in MAC & Bronchiectasis

Thanks for the info on the conference.
The info on the shower heads is very helpful. I was just wondering if I should use a filter with the new shower head I got from Shower Clear. You can get filters for your shower to filter out chlorine especially because the chlorine in water is bad on your lungs. I guess according to the conference information all filters are not good then? Is that including water filters?