Airway clearance techniques

Agree with Sue. I was started on it by first pulmonologist and was thought to have MAC. I was left on it by Mayo who also thought it was MAC while awaiting bronchoscopy cultures. When cultures were negative, they switched me to one they mix with different antihistamine and steroid.
Just make sure you use just the Azelastine, which is over counter. I think it also comes with a steroid. Good luck.

Thank you for your response. My ENT prescribed it yesterday. I have an almost constant swallowing and throat clearing. Hope the Azelastine helps.
No steroid

I seem to play this role here but The Lung Matters group is really not that draconian. Countless times I have made comments to other members there saying that people need to read their own bodies and be sensitive to their own responses to these and all protocols. I have also expressed that after trying Levalbuterol, even at a .63 dose I stopped b/c it made me jittery—and there wasn’t any kind of negative response about those and other comments. Her protocols if approached with a critical intelligence, can be extremely helpful. What she doesn’t want is a big discussion about whether ACTs are important, or whether it is important to guard against aspiration, etc. Or whether we should ask for susceptibility testing before taking any kind of antibiotics or not. It’s really for people who want to learn from her extensive research and personal journey and then tailor those observations to their set of circumstances. There are many people who don’t do what she suggests regarding sterilization, etc. and talk about it openly. I, for one, have found her to give untiring support to many people like me, who for example, couldn’t go near 7% saline in the beginning of my present journey without going into coughing paroxysms. She said it took her a whole year to acclimate to it herself, and suggested I do it very gradually and gently, starting with 3%. Her advice bore fruit and I now can nebulize 7% twice a day without a problem. I’m very glad I have this potent aid in my healing tool box now and it is thanks to her.

All I am saying here is that although there may be people who have had a difficult experience on the Lung Matters group, there are many others who are grateful to have that level of support and coaching. She is a medical researcher by trade and has always been treated at National Jewish since the beginning of her BE and MAC journey, so I have as much respect for her as I have for any moderator on any of the other groups I participate in.

Also, people will sometimes deify someone b/c of their credentials, but those people, Falkinham among them, have also made many contradictory statements that should be cause for concern. This is not just my observation, but the observation of other diligent, well-versed patients even in this group.

There are tons of people on the Lung Matters page who are on drug regimens who deeply appreciate her contribution and she has shown herself to be a tireless researcher and supporter of many. There are countless expressions of gratitude among people who frequent that page. So let’s not just write off Lung Matters as some kind of fundamentalist cult. There is much to be learned there.

I am glad to hear you have had a good experience with Lung Matters, and would love to agree with you BUT no moderator should ban any member without discussion (private is fine) about the reason(s) for their action. This happened on Lung Matters to me and to more than one member of our group, and people I know on other forums.
It is not the mark of researcher or a professional to operate in that manner. When people in our group violate the guidelines of Mayo Connect, they are contacted privately by our Moderators to try to resolve the situation, only being asked to leave as a reluctant last resort.
As a person who spends many hours on this forum and others, conversing, researching and educating, I cannot accept and respect someone who banishes others as if they are the supreme ruler of a kingdom.
Many times my statements are questioned here, and I go back to see that I was wrong, or I was unclear in how I said something. I often ask others to provide citations for their posts so I can read and learn more. Ours is a very complex disease, and we need to look at all points of view.

I am very sorry to hear that this happened to you and others and hope that lessons have been learned. I haven't seen her act this way, since she has always treated me with the utmost respect as I treat her, and I have never observed her having hurtful interactions with anyone online. On the contrary. But I am not behind the scenes nor do I see the whole picture. It is very sad b/c of how vulnerable everyone generally feels with this disease. I hope that these kinds of things don't happen in the future, and again dismayed that it happened to you, Sue, given how conscientious you are.

I didn't get kicked off, but she quickly deleted 2 of my posts that said steroids had helped me, once regarding asthma and once for PND. She did send me a warning so maybe has changed since Sue's experience. Imo, clearance and nasal rinses help, but once a person's in a deep hole as I was, they may not be enough. My sinus drainage didn't improve until an ENT specializing in frontal sinuses added a steroid to my sinus rinse. I was already on steroid spray. I'd also been doing NeilMed rinses 2x/day for2-3 months and was still hoarse from all the drainage.
I stopped reading after she advised a woman who sounded pretty sick with elevated fever, productive colored cough, etc. not to take antibiotics patient's doc recommended, but increase airway clearance. I posted a generic sounding note encouraging woman to call doc again or go in if not better rather than saying I thought that could be harmful advice because I didn't want it deleted , too. Imo, that type of specific advice without med training or without knowing/seeing the patient crossed a line for me and I quit reading. I think people here share what worked for them or suggest another opinion and I'm more comfortable with that approach.
I do recognize that she's helped many people learn about airway clearance .

Thank you for sharing your experience, and very sorry that it was such an unsavory one for you. None of us should feel unwelcome and suppressed when discussing a conglomeration of diseases that are for the most part still moving targets for even doctors. There is so little that is rock sure. She may have taken the feedback to heart b/c I haven’t seen her tell people not to take antibiotics. In fact, she assumed recently that I was taking them for MAC, which I am not yet ready to do for a host of reasons. And I see people sharing their experiences with this or that antibiotic, and if she responds at all she will just direct people to her guides about susceptibility testing and awareness of how any treatments/hospital procedures can make you susceptible to other stubborn and hard to quash bacteria.

Yet all of this good to hear from the thoughtful people on this site, which introduced me to so many amazing resources and people through which I was able to learn a great deal of what I know now while my pulmonologist remained asleep at the wheel. Thank you for being one of them.

Scoop- I understand the quote but we also have to be careful ........we, meaning me also....... do not take cliches and quotes to the nth degree.
I did not listen to a few doctors when told to take certain medications in my early years and further testing down the road showed that what they wanted me to take the medications for, after testing years later, was not showing a problem as the earlier doctor diagnosed the medication for.
Also, I was told by a second pulmonologist in Tyler, after going to NJH that had me on 'watchful waiting,' to start the antibiotics for the low count of MAI I had. I did not start them in 2023 and still feel fine and so far the infection has not changed in terms of it still being at a low count.
As you know the important thing is knowing oneself and ones body and habits which is something I have paid attention to for years. At times one must go with their gut feeling....... of which I have done at times knowing what I know about myself.
Just thought I'd share that with you about my experience to understand why I have commented.
You are a big help to many on this group, including me. Thanks
Barbara

Hi Sue- The key to many things is up front communication and sometimes people fall down with that aspect for various reasons, including ......'just didn't think of it.'
Hopefully she (Lung Matters) has given thought to her need to communicate better with her followers.
This all makes me think of the fact that we can get one opinion from one doctor and another opinion from either a second or even third doctor and they differ from each other.
So, it is truly up to us many times to do all we can to help ourselves with what is best for us. such as all the research you have done for yourself and others.
Glad we can openly discuss this and hope all understand that all postings are done with the purpose of helping one another and sharing thoughts and experiences.
Truth is, I appreciated your input and bringing to my attention that a statement I made in a post was controversial.
Wishing you a wonderful trip this fall.
Barbara

Barbara, I agree with you, moreover I think Kelly Kat is doing an incredible service to our community with all the research and writing she has put into Lung Matters! I understand that she can be prickly and censorious, but that doesn't negate the amount of good information one can get from reading her Facebook page. I've been a member for five years and have learned so much. She writes and describes in detail what happens in our bodies, and our bodies' responses to various things. As far as I know she does not promote anything potentially dangerous. When I don't think that her advice is good for me personally, I ignore it. I do wish she could communicate more gently, but this is her personality. Nobody's perfect. If folks don't read Lung Matters because they take offense to something she's said, they are, as my mother used to say, "Cutting off their nose to spite their face." Don't do that.