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Posts (54)

Sat, Aug 31 9:45am · In shock after MAC diagnosis in MAC & Bronchiectasis

@windwalker That is a big YAYYY!!!! Negative for all organisms! You can't ask for more than that! Nan

Tue, Jul 2 10:24am · 'PINK SLIME' Data Base in MAC & Bronchiectasis

Hi @chatty2, if I'm correct the pink mold is not a bad thing. I believe that when the pink mold is present the MAC doesn't like it so it lets the pink mold hold court. I have pink mold and I couldn't be happier. But to confirm there are many on this site that might want to chime in….@windwalker for one. She's our leader. Nan

Sun, May 5 8:23pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker Yes, Terri, the cough is such a drag but I'm not giving up! I'm trying one thing at a time and one day something is going to work! And yes, we should get together soon! Nan

Sat, May 4 9:37am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@bevmac Thank you so much!!! I've had two doctors and neither one of them have had any luck with my cough so I'm going to try your doctor's supplements and see what happens! Nan (@nannette)

Fri, May 3 9:27pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@bevmac I've been coughing for a year and a half now. Do you know the names of those supplements that your doctor gave you that stopped your cough after three days? I haven't had any luck yet stopping mine. Nan (@nannette)

Fri, Apr 5 8:40pm · Alternative treatments in MAC & Bronchiectasis

@glendamoseley You have to get a prescription from your pulmonologist and when I first started out with all of this three years ago, this wonderful forum is where I learned about it and I had to actually ask my pulmonologist about it because he didn't prescribe it very often. I think it's great to keep your lungs clean and the MAC also doesn't like the 7% solution. There is a link to an article somewhere in these vast number of pages of this forum about a study that was done that watched how mycobacterium behaved in different levels of saline solution. In a 3-5% saline, the MAC hung out but when 7% was introduced the MAC didn't like it. There are others on this site that know more about it than myself….@windwalker is great at explaining things along with so many others. Hope this helps a little. The prescription that I get comes in a box with probably 60 little plastic vials that are sterile and you just open one up and put it in the nebulizer cup and depending on the nebulizer it can take anywhere from 15-20 minutes maybe to nebulize it. Nan

Thu, Apr 4 7:07pm · Alternative treatments in MAC & Bronchiectasis

Hi @siliai, @poppins, @kjellis, my name is Nan and I read Stephen Buhner's book and tried his liquid tincture herbs about a year or so ago. He doesn't address MAC in particular but he did talk about mycobacterium a little so I tried the two herbs that were the closest I could find. Shari, @pfists also used these herbal antibiotics and she would probably be a little better at explaining. The two used were bidens and cryptolepis and I purchased them from a good website called Woodland Essence which is one of the websites that Stephen Buhner recommends. I mixed mine with juice and as I remember I did them two to three times a day. I don't have the book with me at the moment but maybe Shari could remember what pages he talks about these two. I think they're used for lots of different ailments. I am free of MAC now (just went to my pulmonologist and infectious disease doctor today actually) but I can't really say what worked and what didn't. I did the big three for one year from 2016-2017 and then after that I did the herbal antibiotics for a few months but that was it and for the past year and a half I have been doing the 7% saline solution. I'm a big believer in that saline solution. I'm also willing to try just about anything alternative. So that's been my experience. Hope that helps. Nan

Thu, Mar 28 6:45pm · Meeting Members in MAC & Bronchiectasis

@windwalker @deborahwolf It was great to meet another Connect member and be able to talk about our conditions together! It really is nice to meet other people on the same journey.