Two bits of good news!! (and nebulizing with saline)

Posted by rits @rits, May 21 12:13pm

Hi Everyone. I had a telemedicine appointment last Friday with the wonderful (I LOVE her) Dr. McShane who is practicing in Tyler, Texas. I have really good news to share. First is mine alone. I am off antibiotics following successful treatment for 14 months with Azithromycin and ethambutol and 4 months on Arikayce. Yay!

The second wonderful news is a shocker and applies to everyone who does airway clearance. Not too long ago, I pontificated here in response to a post by Thumper that nebulizing with .9% saline is a waste of time because it is normal saline and would not do anything. I said that we need to use 7% if we can and 3 % if 7 is too harsh. Well, Dr McShane told me that .9% is just as good and she sent me a copy of a study which proves it. I have attached the study here. It is from Australia and compares airway clearance for patients using 6% to those using .9% for one year. There was no difference!!! Both worked equally well as far as preventing exacerbations, effect on bacteria, etc.

Of course if you are doing well on 7% or 3%, this probably doesn’t matter to you. But for me, it is earth shattering. I started on .9% last night and it is much more comfortablefor me. You can read the study for yourself. Last week, I was despondent believing that, although I would be stopping the antibiotics, I would have to suffer the effects of hyperytonic saline 2x a day for the rest of my life. I had horrible shortness of breath and struggled to function for at least an hour after each clearance treatment. No more! This is such good news!

I hope everyone has a fantastic day!

Rita

Shared files

Hypertonic Saline versus normal saline in Bronchiectasis (Hypertonic-Saline-versus-normal-saline-in-Bronchiectasis.pdf)

@rits

You should probably have a sputum check to see what is going on. They can send you the materials to collect it and send it to them. I'm sending my samples from Chicago to Texas and it takes 5 days to arrive. I was told that using their packaging, the sample is good for two weeks.

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Didn’t know you could do that. Thanks!

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@hayn3705

I, too, was diagnosed with MAC/Bronchiectasis in mid-March. I started on the 3 antibiotics immediately. I left a message with my pulmonologist several weeks ago (after reading the posts on this site about thumper vests and saline nebulizers etc) asking if there were any other therapies that he would recommend for clearing my lungs and his nurse called back and said “no, only the antibiotics.” So I guess I am wondering why you guys on this site are receiving this treatment but I am not. Is it recommended only in cases of severe vs mild Bronchiectasis?

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@hayn3075 I am a big proponent of being your own best advocate in your care, as are many on this group. As far as I know, lung clearance is important in most cases of bronchiectasis. It helps clear the sputum, which damaged lungs no longer do efficiently on their own, so the bad bugs like MAC cannot grow.

One of the most important factors in dealing with any uncommon chronic condition is finding the right caregiver. That would be someone who frequently treats bronchiectasis and MAC, and keeps up with the most current treatment protocols. It might be time to look for someone near you who does that, or to visit Mayo, National Jewish Health or another regional center with a group of lung specialists.

I am curious what testing was done to determine your diagnosis of Bronchiectasis and MAC, and what symptoms you are currently experiencing. If I recall correctly, you have been dealing with taste and appetite issues since you started medication. How are your doing now?

Sue

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@marellen

I’m new to all this and can you explain the saline treatment? I too have bronchiectasis and have been taking the big 3 daily for 2 months. Is the saline something that is a treatment after the treatment of antibiotics? Thank you for your help.

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Hello Marellen! Most of us with bronchiectasis and/or mac infection use nebulized saline in conjunction with our antibiotic treatments. It is considered good lung hygiene, sort of equal to washing your hands, only it's lungs. NIH (National Institute of Health) did studies that showed what strengths of saline killed specific strains of bacteriums. 7% was specific for Avium Bacterium which is mac/ntm. There is a chart that lists those, I will dig through my files and look for it. My Mayo dr had put me on the 7% saline back in 2013. I tested negative for mac by 2014. Mayo drs are held in the highest esteem worldwide, so take my drs choice of 7% as Gospel. I still nebulize saline to this day to keep my lungs clear. I have not read your link to the article yet, but I will. I think the lower % saline may work ok especially for those on the newer meds like Arikayce, I don't know for sure. For those who cannot tolerate the 7%, then go lower, some os better than none in my opinon. All I can say is; back when I first joined this group years ago, hardly anybody was on the saline. Between myself and a few others who preached constantly that we all should be doing it; most in our group here now use it. I will tell you this, when I first became a Mentor for this group; there was a lot of virtual hand-holding. Many members were so sick, crying, and scared. The symptoms of active mac infections can be quite miserable. I have noticed that as more and more of us started using the saline, the level of misery has gone down, and people are starting to test negative for mac.

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@windwalker

Hello Marellen! Most of us with bronchiectasis and/or mac infection use nebulized saline in conjunction with our antibiotic treatments. It is considered good lung hygiene, sort of equal to washing your hands, only it's lungs. NIH (National Institute of Health) did studies that showed what strengths of saline killed specific strains of bacteriums. 7% was specific for Avium Bacterium which is mac/ntm. There is a chart that lists those, I will dig through my files and look for it. My Mayo dr had put me on the 7% saline back in 2013. I tested negative for mac by 2014. Mayo drs are held in the highest esteem worldwide, so take my drs choice of 7% as Gospel. I still nebulize saline to this day to keep my lungs clear. I have not read your link to the article yet, but I will. I think the lower % saline may work ok especially for those on the newer meds like Arikayce, I don't know for sure. For those who cannot tolerate the 7%, then go lower, some os better than none in my opinon. All I can say is; back when I first joined this group years ago, hardly anybody was on the saline. Between myself and a few others who preached constantly that we all should be doing it; most in our group here now use it. I will tell you this, when I first became a Mentor for this group; there was a lot of virtual hand-holding. Many members were so sick, crying, and scared. The symptoms of active mac infections can be quite miserable. I have noticed that as more and more of us started using the saline, the level of misery has gone down, and people are starting to test negative for mac.

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windwalker…….thank you for the post. It always gives us a little ray of hope. Personally, I'm plagued with pseudomonas as I have been for over a year. Have done the toby for more than a year — still positive for pseudomonas. Going to try it a while longer, I guess. It is discouraging. The constant coughing and phlegm is quite embarrassing and hard to work with if you're going out at all. With the pandemic, I could clear the whole WalMart store in 3 minutes. Ha! Therefore, I don't go in, of course. Thanks again for all you do.

Liked by alleycatkate

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Congrats Rita! You are added to the list of those is finally tested negative for mac! It took a lot work, but you got there!!! Way to go!

Liked by heathert

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Rita, I read the link you shared about the saline. The study did not include mac at all. 7% saline is needed to kill mac. The study you shared was more about saline use helping patients have fewer exacerbations and beating down psuedomonas and another type of organism. It's main point was lung clearance, which we are all onboard for that! Here is the study by NIH. The saline chart is near the end of the article. It lists what saline % will kill what organisms. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ – Here is the link again to that research on 7% saline solution nebulized

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@windwalker Thanks for sharing this chart again. It is very important, I think, to continue to differentiate saline for general lung clearance and saline to combat MAC. I still tested positive for MAC when I stopped the meds, but my lung doc supports using 7% saline, if not to cure it, at least to keep it from worsening. Looking forward to a new culture in June (and maybe imaging) to see if it is working for me.

How are you doing these days?
Sue

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@windwalker

Congrats Rita! You are added to the list of those is finally tested negative for mac! It took a lot work, but you got there!!! Way to go!

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Thank you Terri! I have been negative since June 2019 and did the extra year of antibiotics minus 2 weeks! Some people need to do 18 months after the first negative but I was lucky to get rid of Mac quickly. We'll be testing my sputum every 3 months and I hope it never comes back.

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@windwalker

Hello Marellen! Most of us with bronchiectasis and/or mac infection use nebulized saline in conjunction with our antibiotic treatments. It is considered good lung hygiene, sort of equal to washing your hands, only it's lungs. NIH (National Institute of Health) did studies that showed what strengths of saline killed specific strains of bacteriums. 7% was specific for Avium Bacterium which is mac/ntm. There is a chart that lists those, I will dig through my files and look for it. My Mayo dr had put me on the 7% saline back in 2013. I tested negative for mac by 2014. Mayo drs are held in the highest esteem worldwide, so take my drs choice of 7% as Gospel. I still nebulize saline to this day to keep my lungs clear. I have not read your link to the article yet, but I will. I think the lower % saline may work ok especially for those on the newer meds like Arikayce, I don't know for sure. For those who cannot tolerate the 7%, then go lower, some os better than none in my opinon. All I can say is; back when I first joined this group years ago, hardly anybody was on the saline. Between myself and a few others who preached constantly that we all should be doing it; most in our group here now use it. I will tell you this, when I first became a Mentor for this group; there was a lot of virtual hand-holding. Many members were so sick, crying, and scared. The symptoms of active mac infections can be quite miserable. I have noticed that as more and more of us started using the saline, the level of misery has gone down, and people are starting to test negative for mac.

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I was diagnosed with chronic bronchitis (copd) in Oct 2010 and put on inhalers. I had a ct scan soon thereafter which showed bronchiectasis. 7% saline and an acapella were added to my treatment regimen. I think it is important for those diagnosed with bronchiectasis to find a pulmonologist who specializes in or has an interest in bronchiectasis. Because such pulmonologists are hard to find, one who treats copd is the next best choice. We need pulmonologists who are familiar with excess mucus.

Liked by ginak

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@windwalker

Rita, I read the link you shared about the saline. The study did not include mac at all. 7% saline is needed to kill mac. The study you shared was more about saline use helping patients have fewer exacerbations and beating down psuedomonas and another type of organism. It's main point was lung clearance, which we are all onboard for that! Here is the study by NIH. The saline chart is near the end of the article. It lists what saline % will kill what organisms. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ – Here is the link again to that research on 7% saline solution nebulized

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Hi Terri. The two studies were designed for different purposes. As you know, the saline chart one studies concentrations of saline which allow different mycobacterium to survive. The bacteria along with various concentrations of saline were put in cultures and watched for 4 weeks. At the end of that period, the researchers tested to see which bacteria were alive.The best study for us would have been to test the saline concentrations on animals and then people or at the least on sputum. This study doesn't prove that nebulized saline treatment of any concentration kills bacteria in our lungs. I think most if us believe it does, but this study, which doesn't use patients, doesn't prove that.

The 0.9% v 6% study was conducted on two groups of people who do the same amount of airway clearance and was designed to discover if treatment with one concentration is superior to the other. It was not designed specifically for mycobacterium eradication through saline nebulization. Previous tests had shown that .9% was not effective with respect to cystic fibrosis bronchiectasis patients. This study was to see if the same results would occur with non cystic fibrosis bronchiectasis patients. The results proved that .9% is just as effective for non cf patients as 6%.

For those, like you, who tolerate 7%, this study is not important. For me, it is the best news wrt my airway clearance treatment that I could have.

Stay safe! Rita

Liked by shooei, lorifilipek

REPLY
@windwalker

Hello Marellen! Most of us with bronchiectasis and/or mac infection use nebulized saline in conjunction with our antibiotic treatments. It is considered good lung hygiene, sort of equal to washing your hands, only it's lungs. NIH (National Institute of Health) did studies that showed what strengths of saline killed specific strains of bacteriums. 7% was specific for Avium Bacterium which is mac/ntm. There is a chart that lists those, I will dig through my files and look for it. My Mayo dr had put me on the 7% saline back in 2013. I tested negative for mac by 2014. Mayo drs are held in the highest esteem worldwide, so take my drs choice of 7% as Gospel. I still nebulize saline to this day to keep my lungs clear. I have not read your link to the article yet, but I will. I think the lower % saline may work ok especially for those on the newer meds like Arikayce, I don't know for sure. For those who cannot tolerate the 7%, then go lower, some os better than none in my opinon. All I can say is; back when I first joined this group years ago, hardly anybody was on the saline. Between myself and a few others who preached constantly that we all should be doing it; most in our group here now use it. I will tell you this, when I first became a Mentor for this group; there was a lot of virtual hand-holding. Many members were so sick, crying, and scared. The symptoms of active mac infections can be quite miserable. I have noticed that as more and more of us started using the saline, the level of misery has gone down, and people are starting to test negative for mac.

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National Jewish also recommends 7% saline twice a day for our lung disease.. I have read the same info on many sites saying the same thing..I sometimes can’t tolerate the second dose, so I will use 3% instead with my Colistin..thanks for th3 info Terry

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@auntnanny

windwalker…….thank you for the post. It always gives us a little ray of hope. Personally, I'm plagued with pseudomonas as I have been for over a year. Have done the toby for more than a year — still positive for pseudomonas. Going to try it a while longer, I guess. It is discouraging. The constant coughing and phlegm is quite embarrassing and hard to work with if you're going out at all. With the pandemic, I could clear the whole WalMart store in 3 minutes. Ha! Therefore, I don't go in, of course. Thanks again for all you do.

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Hi Aunt Nanny… I too have pseudomonas and am using Colistin every other month.. Toby made me wheezy and cough a lot… this drug is amazing and has changed my life along with proper airway clearance and 7 percent saline twice a day

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@marellen

I’m new to all this and can you explain the saline treatment? I too have bronchiectasis and have been taking the big 3 daily for 2 months. Is the saline something that is a treatment after the treatment of antibiotics? Thank you for your help.

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@marellen From my understanding, the antibiotics are to treat the NTM, (MAC, MAI, etc.). The saline thru the nebulizer is to assist with lung clearance and in making the lungs less hospitable to various mycobacterium infections. Very important for those of us with bronchiectasis. I think most, if not all, on this forum do some type of lung clearance daily. Hope that helps a bit. Others on here are much more knowledgeable regarding this than I am.

Liked by rits

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@hayn3705

I, too, was diagnosed with MAC/Bronchiectasis in mid-March. I started on the 3 antibiotics immediately. I left a message with my pulmonologist several weeks ago (after reading the posts on this site about thumper vests and saline nebulizers etc) asking if there were any other therapies that he would recommend for clearing my lungs and his nurse called back and said “no, only the antibiotics.” So I guess I am wondering why you guys on this site are receiving this treatment but I am not. Is it recommended only in cases of severe vs mild Bronchiectasis?

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I have not been diagnosed with a MAC/ntm’s yet. He is hoping the vest/albuterol/7%saline is helping…..so far, so good…..but I don’t know what he would do if those infections showed up.

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Another note in support of 7% saline in my nebulizer – I was on the Big 3 for 6 months before I had side effects (tinnitus and hearing loss). I was referred by my GP to a MAC specialist as my respirologist, who had an abundance of confidence but little knowledge of MAC, would not refer me.

The specialist took me off the Big 3 and started me on 7% saline with Aerobika and chest pummeling (my gracious husband was taught to do this). My bacteria count went from 3+ (out of 4) when I stopped the Big 3 to 1 in 4 months and I will do a forced sputum test next time I go in.

Anyway, my point is that the saline has enabled me to stay off medications for 9 months and my overall health has improved so hopefully I can maintain this. Perhaps things would have gone better for me on the medications if I had done both at the same time.

I wouldn’t advocate stopping medications but I completely support the use of saline and other measures to support good health with them (or without, if that works).

I am so thankful to members of this forum for all the helpful information that I’ve received, including learning to do our own research and to be strong advocates for ourselves.

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