Treatment Guidance Please...Bronchiectasis/Asthma/Reflux

narelle23... It is discouraging when the medical professionals assume noncompliance is the answer. I have found that some people are more compliant than others. I have always followed my asthma protocols, but my asthma symptoms do not abate. My pulmonologist believed acid reflux was the cause. I follow all the acid reflux protocols, too. I continue to have asthma and bronchiectasis symptoms. I cough up mucous. A small hiatal hernia has been fixed with surgery twice along with fundoplication twice. I got instant relief. Now I've been diagnosed with chronic gastritis and a small hernia. No surgery recommended since it is small.
Many people have better treatment from the Mayo Clinic and the other major clinics which specialize in treating NTM. A change in doctors might be warranted.
When you refuse asthma medications which reduce inflammation, you are setting yourself up for being considered noncompliant. Perhaps you have serious reasons that you could share.
We all are interested in helping you in your struggles for better lung function. Check out the other posts.

I’d encourage you to work on getting the post nasal drip and reflux under control as well as your asthma. It sounds like what you had been trying didn’t work for you. I’ve only been diagnosed a bit over a year, but had problems with a couple types of cough much longer.

I had a couple small nodules found by an urgent care doc 3 years ago. The f/u CT a year later was much worse with trees in bud, ground glass, etc and I was thought to have MAC and was referred to a local pulmonologist who prescribed Azelastine for the horrid episodic coughing since he thought it was PND and he found I also have mild asthma. He started Stiolta and albuterol for asthma, avoiding steroids due to possible MAC. The Azelastine for post nasal drip helped the horrid cough a lot, but the little nagging, persistent cough remained along with some hoarseness.
I went to Mayo 15 months ago, was diagnosed with bronchiectasis and cultures were negative, I started on albuterol nebs, Advair and a triple nasal spray with Ipratropium, antihistamine and steroid. The steroid inhaler and spray helped so much! The nagging cough was gone with 24 hours and after aggressive treatment by Penn ENT with nasal meds, including sinus washes with steroids , my sinuses, including persistent frontal sinus issues, are finally better controlled and my hoarseness is only intermittent now.

I tell you this because you’re following the Lung Matters protocol and there is some good info there, but just saline rinses didn’t work for my sinuses nor did avoiding steroids control my mild asthma. I’m a retired RN and knows the problems with steroids, but for me, the benefit has outweighed the risks. I posted about the meds helping my cough and sinuses there a couple times and the posts were taken down quickly since they aren’t in that protocol. People are different and one approach may not work for everyone.

Thank you epaulettes for your response. My reasons for not using the asthma meds was that they didn't seem to do anything helpful along with their perceived negative side effects. When I started the Lung Matters protocol my feelings about the steroids were confirmed by them. The trouble is of course I am not a doctor and don't have the full story...and I guess I am naturally wary of the reliance on medication. Perhaps there is a good reason to take it...but no one has explained the way it is meant to help me.

Here in Australia we have general practitioners (GPs) who we see day to day...and when needed we are referred to specialists. Often you don't get to see the experienced consultant but their Registrar. They often don't have access to your full medical history...and usually don't explain why you need to comply with their recommendations.

I am open to being convinced. I have made an appointment to see an older GP who I used to see and trust to see if he can give me a convincing plan forward.

I also don't know if untreated (pretty asymptomatic) asthma could cause a 25% drop in lung function.

Thank you for your input.

Thank you pacathy. I have been focussed on addressing the reflux in particular and am in much better position with that now: elevation of bed, stopping salbutamol nebbing, food etc. I am rarely aware of post nasal drip and if bad will use a saline rinse...however the only asthma symptom I notice is an occasional cough perhaps due to temp change or exercise induced. Don't know how that could contribute to so much mucus when nebulising. The registrar has done a bunch of blood tests to rule out auto immune conditions, in particular lupus. Once I have properly cleared my lungs I am pretty fine (at least for a couple of hours).

Do you think mild asthma could account for the loss of lung function...and if so would it be permanent?

I am pleased you have had such success with using the meds. I would be prepared to go back on some if they can prove to me that they help with
something.

I wish you continued success with your treatment.

@narelled23 Perhaps I am missing something in the diagnostic history above, but I do not see the NTM diagnosis?
Your history reads much like mine - long-term difficult to treat asthma with bronchiectasis. Even after antibiotic treatment, I never felt well until we got the asthma controlled about 2 years ago. It was a concerted effort by the Pulmonologist and me to find the right combination of medication (Symbicort twice a day, Singulair once a day), 7% saline, airway clearance, exercise and deep breathing cycles. That ultimately meant reducing my use of 7% saline nebs to 2-3 times per week, using the Aerobika for airway clearance once a day, and huff coughing or deep-breathing cycles for the other session.
As for the volume of mucus you are experiencing, perhaps it is an irritation response to vigorous airway clearance? I have learned that if I try to clear "every last bit" of mucus from my lungs I produce more and more - to the point where I constantly feel like I am drowning. And unless I am fighting an exacerbation (illness) I do not need 7% saline daily to help clear my lungs. Perhaps there is something to the recommendation from the respiratory therapist?
I understand that the Lung Matters protocol is very specific, but as with every other form of treatment, it is not "the only way" because each one of us is living with a different version of lung disease and our own unique body. In my case, the less rigorous regimen has kept me healthy for over 2 years and counting. Unless I have a respiratory virus, I only have about and ounce of mucus per day - yet my lungs sound clear with a stethoscope.

Sue, an aside, I am reevaluating my fears of anticholinergics (sp?) and am thinking of switching to a LAMA instead of a LABA. Reason: I have asthma, excess mucus and constant coughing and post nasal drip plus bronchiectasis of course. I take 25 mg benedryl (an anticholinergic) and my problems all immediately (with in an hour) improve (many times). LAMAs have that MA thing in it which is an anticholinergic that works in the lungs. I am guessing that for some of us intractable allergies play a part. At my next appointment I am going to ask to switch and try it out. Unfortunately I can not take singular because it can cause an autoimmune disease called churg strauss and I already have a very closely related autoimmune disease. Zytec doesn't work. I think the fear of steroids is not over all a good thing and they should be used when advised by competent doctors.

Good to check with another doctor. Lung function decrease is most worrisome. I had to go on Oxygen 10 years ago with the Non Tubercular Mycobacterium. It required Infectious disease doctor and what we call the "Big 3" antibiotics. They worked, but my lungs filled with Candida. I used Candida cleanse to eliminate it and as per bronchoscopies, that worked, too. I have been exacerbation free for 10 years. Only on oxygen for a year while we figured things out.
A good practice is to take your medical history with you to every appointment. Your description for this group was perfect. Be your own advocate. A one page bullet point type history is very effective. Good luck.

Thank you so much! It is astounding and exasperating to me to realise that with all the information gathered by the medical authorities that so little of it can be accessed by anyone needing it! I resorted to trying to co ble together my own medical history.

So pleased you found something that works for you too.

Many thanks
Narelle

Sorry Sue...I need to update my medical history to include NTM MAC diagnosed.

Thank you for your thoughts...much appreciated. Yes...I am focusing on finding out what it is I need to treat my particular issues and realise that blindly following the LM Protocol is not necessarily going to be best for me.

It is encouraging to hear that your perserverence with similar issues has paid off.

Thank you, Sue. You give me hope.