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Please Share your MAC and Bronch Success Stories - However Small
Please tell us about anything you have done to keep the dreaded infections at bay, or improving your health/breathing/energy.
@thumperguy and @kathyhg - you have both told us good news lately, care to share?
Sue
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@sueinmn That's fabulous!!! Woo hoo! Isn't it the greatest feeling to get a good report like that? Nan
I am keeping my fingers crossed that I may be a success story! After being on the Big 3 for a year I tested positive on my 12th culture, however, the next two cultures were negative so it is possible that my one sample was contaminated. Both my infectious disease doctor and pulmonologist have released me from care after a stable CT scan. I understand that our best defense is a healthy immune system and that MAC or another nasty bacteria may get me again but in the meantime, I'm feeling great and planning on enjoying life without drugs and without MAC. I am doing everything I can to avoid reinfection including medical grade shower heads, boiled water for my Netti pot, a SteriPen, and masks for gardening. This group has been a wonderful source of support and information and I hope my contribution for people is to know that there is hope! Thank you all!
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1 ReactionHi @sueinmn ,
Which nebulizer do you use/like? And do you use Aerobika 2x a day? You mentioned once when you were feeling “rough” you used extra nebs, can I ask how many extra in a day? Thanks for great news! Glenda
Is there evidence that the NaCl irritates the lungs & causes problems?
I did a little searching, and here is what I learned:
Adverse effects on the lungs are not reported anywhere that I can find. It is widely prescribed for people with Cystic Fibrosis, and more recently Bronchiectasis. It works by drawing moisture into the lungs, thinning the sticky mucus which harbors bacteria so it can be coughed out.
It may cause temporary bronchospasm in some people with asthma. When it happened to me, I was advised to use it mixed 50/50 with normal saline (.9%) for a week, then try again at full strength - no further issues.
Hypertonic saline nebs are sometimes even used on infants under 2 years with bronchiolitis to help bring up mucus, so I think that speaks to the safety of use.
There has been some testing done to determine whether it acts on viruses. The study concluded that it didn't have any effect on the duration of viral illness.
There have been studies showing that the higher levels of hypertonic saline immobilize NTM in a culture medium. Specifically, all common types except M abscessus were reduced by hypertonic saline of 3 - 7%. I have not seen studies evaluating the effects on NTM in the lungs.
Hypertonic saline can irritate the throat, especially at first. Gargling with plain water after nebbing has worked for me.
Does this answer your question?
I use my Pari Vios - it is a dinosaur, big and sort of noisy - the third one in our household over 30+ years. I have tried smaller, quieter, more portable ones - one lasted a year before it quit, the other took too long.
I will admit that I only use my Aerobika once a day, even though I should do it more - but I cough up a lot even without it so I am not concerned.
I have nebbed as much as 6 times a day - thankfully not for a looonngg time, but when I had an exacerbation this Spring, I nebbed first duoneb then saline 4 times a day for 2 weeks, then dropped to three for another week, and finally dropped to 2 salines, and only duoneb if my chest is tight (maybe 2-3 times a week.)
Sue
Hi Seth - Are you using a saline neb? I am convinced that it has contributed to my success in staying almost completely infection free for 20 months. (One small exacerbation this spring, treated with nebs and prednisone.) I think there are others here who are seeing similar success, such as @thumperguy.
For the past 6-7 years, before the Big 3, I was suffering 2-3 major lung infections per year, with antibiotics and months of asthma attacks. For 20 months, I have stayed healthy in spite of regular exposure to little germ factories (aka grandchildren.)
I got a rainfall (big droplet) showerhead and wear my mask and gloves faithfully around the garden. But I do not boil my water - I was again encouraged that this is not always necessary by Dr Falkinham's latest article post by Armando (@bolso1) today here:https://connect.mayoclinic.org/discussion/reducing-exposure-to-nontuberculous-mycobacteria-ntm/?pg=1#comment-636005
Here's hoping you too will be a success story for a long time!
Sue
Seth, fingers crossed for you. I’m almost two years flare-up free with all credit going to nebbing 7% saline solution. 7% seems to go where others “fear to tread” Don
Thank you! Not nebulizing because I don’t have bronchiectasis and seem to be doing fine without out it. I do love my medical grade shower head that screwed right into my existing hose unit. Maybe it’s giving me a false sense of security-time will tell. Thanks Sue!
So glad to hear about your success story! Can you say more about medical grade shoer heads? Where do you buy them? What brand did you get?