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

Hi Toni. When I first came onto this Connect group hardly anyone was nebulizing the saline, and rarely did drs know to prescribe it. I had read a medical journal from France back in 2010 that stated that the 7% inhaled saline killed back MAC and was proven a good source of treatment. I mentioned it to all of my drs back then, and none had heard of it or would prescribe it. NIH here in this country, also did a study and showed that it took 7% saline to kill mac. This chart from NIH has been posted numerous times on this site so that patients could present it to their drs. When I first joined this group, hardly anyone was using the saline for lung hygiene. It was a sad, sad, group back then, as most everyone was very sick and had horrible, debilitating symptoms. There was a lot of crying and hand-holding. I harped on the use of the inhaled saline until most everyone that could get on it, did. The climate of this group has definitely changed over the years; our members don't appear to be quite as miserable as they were before, and many have stated that once they started nebulizing the saline; they started to feel much better. I just got back from my Mayo visit last week and I was taken off ALL antibiotics and my dr said that good lung hygiene with the albuterol and 7% saline was the most crucial thing I can be doing. Good lung hygiene is what we ALL should be doing if possible. I know that some on here cannot use the saline, but lung clearance is a must. I hope this helps.

Great news. You inspire me!

@windwalker Terri that is great news. I'm glad you are feeling better. That changes everything when you feel good and have enough energy to enjoy doing things. Good for you for researching and advocating for yourself. I don't know if you saw any of my posts about my dental issues, but apparently the old root canals that had gone bad were causing a lot of phlegm in my lungs and I had this baseline all the time with allergies and asthma added into the mix. When I made the decision and had the teeth extracted for dental implants, my lungs cleared up immediately. That's what made me wonder if I could have had MAC and I saw a pulmonologist at Mayo about it which I didn't. That's another issue that doctors never questioned about how another infection and body inflammation can affect the lungs. I had that phlegm at the time of my first surgery at Mayo for my spine, so it had been going on for awhile even though I didn't have a lot of dental symptoms yet, but my asthma had gotten progressively worse for several years . Root canals are filled with gutta percha which contains cadmium, and these had been done years ago when I was 10 years old because of the trauma of breaking my teeth back then. The first big symptoms were discovered 11 months post op when the infection destroyed some jaw bone. I didn't question it because I thought it was sinus problems because of the allergies until I found a soft spot on the roof of my mouth and a blister on my gums. I had a procedure to clear that infection to save the tooth at the time, but this happened again to another of the teeth that were damaged and I realized this would continue again and again, so I decided to replace the teeth with zirconium biocompatible implants. I had some bone grafting and should get the implants placed later this summer and after months of healing, new teeth next year.

Absolutely this helps ! I'm almost 3 years into this game and still am learning. I think I'm being treated by doctors who truly aren't up to snuff. But.... I'm going to look into it. Especially with my ID doctor. When I saw her last month she want a second sputum sample to reaffirm the negative culture result from January. She said, " I know most bronchiectisis patients have a very difficult time producing a sputum culture but I need you to try. Well, if she's aware of that why wouldn't she be prescribling nebulizing to help in the mucus clearance?? Hmmm. I need to approach my doctors about this. Thank you so much for all the invaluable info ! Toni

I had a telemedical with my pulmanolgist last week and the first thing I asked him was why hasn't any of my doctors recommended nebulizing?? He said I didn't need nebulizing because I use the albutoral inhaler and if I use that in conjunction with my Smart Vest, it's the same thing. So, I don't need to add nebulizing. Additionally, I asked him about developing tinnitus from the Azithrymicin and he said, Noooo, usually people your age ( 72 ) develop some hearing issues. I just said, "Oh." Does anyone have any comments??? Thank you, Toni

I am a huge supporter of nebulizing and my doctor prescribed albuterol prior to nebulizing to open up my airway more. Others on the forum will have more experience with it than I do.

I got tinnitus and hearing loss from azithromycin. They seem to go together, at least they did for me. In fact, I stopped the azithromycin the day my tinnitus started and I didn’t even know I had hearing loss until my next routine hearing test. It’s been 10 months and I still have both. My doctors (Respirologist, ENT, GP) said it was directly a result of the azithromycin. I am 64.

Thank you so much for your input, Kathy. You know, it made me somewhat angry at his cavalierness. He was just not receptive to my inquiries whatsoever. Your procedure, using the albuturol then nebulizing sounds like a solid method to me. Hmmm. I think I need to think about this. Thank you !!

I’ve learned so much from this forum and doing my own research. I can tell you that I had the most confident doctor you could imagine who knew very little about Mac (I didn’t know that at the time) and who I left after he refused to send me to an actual Mac specialist. His treatment plan was the Big 3 without any other therapies like nebulizing.

My biggest regret is that I stayed with my original doctor as long as I did. I’ve done better now that I’m off the meds and relying on nebulizing with 7% saline and percussion twice a day. My virus count went down from 3+ After 6 months on the big 3 to 1+ After 10 months of nebulizing and percussion.

My apologies for repeating this on this forum too many times but I can’t more strongly recommend that everyone do their best to educate themselves and be strong advocates for themselves with physicians. And don’t hesitate to push for another opinion if you feel you need it.

Good luck.

@toni1132 Hi Toni - Hmm...no a rescue inhaler is not at all the same as nebulizing saline. It is meant as a bronchdilator for airway constriction, does not either encourage or thin mucus. My ID doc didn't prescribe nebulized saline, though he did encourage it, mainly because he didn't want to cross over into the pulmonologitst's territroy.
As for tinnitus from azithromycin, refer him to https://www.rxlist.com/zithromax-side-effects-drug-center.htm
In your situation, if possible, I would be seeking someone with more experience treating MAC & bronchiectasis, who is willing to consider information you bring to him, and not just dismiss it. After a little conflict with my original pulmonologist, he fired me! With the help of my primary & ID docs, I found a new one, and she's a keeper.
Are comfortable sharing your general location? You may get helpful recommendations from this group - while National Jewish Health and Mayo are kind of the "gold standard" for treating MAC, many of us have found great docs in our communities.
Sue

Rits, your “long” explanation is excellent. Don