Many new drugs are now in pipeline. Looking forward to the time when they are readily available.

Earlier diagnosis I believe would be a great contribution. It seems many people are misdiagnosed for many years until the NTM diagnosis comes to light.

Starting treatment earlier would result from earlier diagnosis which would increase the rate of treatment success.

I think a drug that would simply dissolve the mucus where it's stuck in the lungs, and therefore would also prevent infection. I don't know what it's like to have just bronchiectasis as I also have asthma and COPD and I honestly don't have a clue what each one feels like alone. On days I might feel all clogged up and feel I'm getting worse I wonder what happens when 'it' gets really worse. So I am anxious for 'a great contribution' to be made. I know the steroid inhaler is great for asthma but does it do anything for bronchiectasis - I don't think so. And my mucus does seem to be getting worse as it's more constant rather than a couple of days a week and it can be getting in the way of daily activities - I have no problem getting the mucus up but it's happening more and that's why I say a drug would have to be the greatest contribution. And once I thought I had an NTM and when I heard what was required in the way of drugs I thought that was not going to be for me - for one thing they likely would be scheduled at all different times and cause all kinds of difficulties but there again, if one drug could come along and get rid of those bacteria I can imagine it being the greatest contribution. I don't like drugs at all but I can't imagine these conditions being treated successfully with anything natural - but wouldn't that be nice? I've tried specific supplements just for lungs but have not noticed any differences worth speaking about. So drugs it is.

Unfortunately, there are no strictly natural cures at this point in time for NTM. Do xxxx you use over the counter mucus before airway clearance?

I have been reading comments on this site for some time and have been disappointed in that people do not believe that natural supplements can help and are mostly unwilling to even try them. A lot of supplements do not work very well, but there are others that are extremely helpful with bronchiectasis. I use both medications and natural remedies. I am at an advanced stage with bronchiectasis and antibiotics are no longer very effective. If it were not for colloidal silver and other supplements that boost the immune system and are natural antibiotics and antifungals, I would be in big trouble. I am colonized with 4 different fungus pathogens but because of the antifungals, I have no active infection. The supplements help to keep me well and have shortened my recovery time after an exacerbation. I will probably get negative feedback from some on this site, but I feel that a great contribution to those diagnosed with bronchiectasis would be if people who have this disease open up their minds, do research and track down those natural things that are helpful. Pharmaceutical companies do not want us to be able to heal ourselves naturally because they would lose profits. I worked for a top executive of a major pharmaceutical company, and I can attest to the fact that all they care about is profits. I believe that is why there is so much negative, and often untrue, information on natural remedies.

Daj,

Hello! I am a firm believer in natural products, supplements under the direction of a RD or an expert in the field. I suggest Uber the direction of an expert since many supplements have to be introduced slowly and in a way that they are most effective. I have listened to do many webinars on supplements over the yearsThey can certainly boost your immune system. Currently, there are no absolute combinations of supplements that have cured NTM infections. I know of several people who had tried unsuccessfully in the past to rid NTM w supplements abs were unable to do do.

Tabbitts,

Meant to write do you use mucinex before airway clearance activities?

Yes, sorry - I answered that up above.

Tabbits – I’d be happy to tell you what has worked for me. I’ve been taking natural supplements for most of life, sometimes without success and other times very successfully. Like you, I’m very healthy except for my lungs but have had bronchiectasis for 16 years. I take the normal supplements (A, C, D, E +multiple).Take only the NOW brand of Quercitin with Bromelain which helps with breathing, and a dropperful of lobelia tincture under the tongue at times when tight or before I lie down to drain.

I do take meds – Brovana, Pulmicort, Acetylcysteine and albuterol in neb 2x a day and even with all of that, about every 7 weeks the mucous increases and I sometimes need an antibiotic/prednisone. Previously when I would go into an exacerbation, it would take me months of being sick, taking antibiotics/pred, and even after that I would still not feel well. Last year I had to go on IV infusions of high nutrients and hydrogen peroxide 2x a week for 7 months. Still not feeling well after stopping the infusions. In January of this year I started on AceMann-M.D. from Digestacure.com, which boosts the immune system and is also an anti-fungal. That’s when I started having a lot of energy and feeling really well. I also boiled Pau d Arco bark, a natural antibiotic and anti-fungal and drank like a tea. While they may not totally eliminate the fungus in my lungs, I feel they have been keeping the fungus in check and keeping me well.

With taking the AceMannan and Pau d Arco, my bloodwork had dramatically improved. Everything was normal and my A1c went down to 5.5.My Primary commented that it was amazing that someone in their 70s would have bloodwork this good. I did well all year but just had a really bad bronchitis, which previously would have taken me 7-8 months and lots of antibiotics/prednisone to get over. I did have to take an antibiotic/pred, but I got over it in a month and am feeling really well again.

Another thing that has been incredible is colloidal silver. I had taken it years ago, but only 20 drops 2x a day with no results. I’m finding that is not nearly enough. TheSilverEdge.com has tons of info on it and provides an EPA safety dosage chart. I’ve been doing a lot of research on CS and have been experimenting with dosages that work for me. You do have to be careful with it because if taken excessively, it can darken the skin. I had been taking 30ppm but have gone down to 10ppm to see if that can work as well. I bought a colloidal silver generator from The Silver Edge and am making my own. I take a daily maintenance dose, but increase it for about 4-5 days when sick, both orally and in the nebulizer. I usually feel a big difference within a day when on CS. I take a small amount in the nebulizer, 1 tsp and only nebulize for about 5-10 minutes for about 4 days before stopping. I then take a break for several days to a week and then go back on maintenance. It’s not clear whether or not CS interferes with an antibiotic, so I take it after the antibiotic is finished. At that point I’m still not feeling well and am not over the infection, but CS seems to immediately clear it up. Sorry to make this so long, but I wanted to be clear. Hope it helps.

Tabbits - I forgot to mention that I also bought an electromatnetic pulse Healthy Wave mat, which I use 2x a day and think it helps.

DAJ,

Thank you for sharing your information with the group. Are you under the care of a functional medicine doctor, naturopathic, a registered dietician or on your own plan?

The reason I inquire is that so many people just buy supplements. Then more supplements, using them for extended periods of time without noting effectiveness, any real change.

More power to you since you have found a good combination of supplements and traditional medicine that are working for you

Ksmiles123 – Bronchiectasis is a horrible disease, and I feel for anyone who is dealing with it, so I am happy to share what I have learned.

To answer your question, I have been under the care of 3 different naturopathic clinicians at different times.I spent a year and thousands of dollars with each of the first two with no results.With the last one, the IV infusions did help somewhat, but for the most part, I have always been on my own plan.I spend a substantial part of my day doing research to find clinical studies, info and anecdotal reviews on supplements.If a new supplement does not help in a reasonable amount of time, I move on to something else.My current pulmonologist and ID doc are supportive of the alternative treatments that I do as long as they help and do not harm me.

It’s interesting that two of the clinical studies used ultrasound treatments for 7 days on the spleen to reduce lung inflammation in Covid patients.I thought that it might be useful in bronchiectasis and figured that I would be dead and buried by the time they began to use it that way, so I asked my chiropractor if she would do it.She did use the ultrasound for 8 minutes on day 1 and day 7, and I used my ultrasound unit at home for days 2 thru 6.It actually did help somewhat to reduce the mucous.

One day they will have a cure for bronchiectasis, but I feel that until then, we just have to keep searching for answers.

DAJ,

Hello! Thank you for sharing more about your experiences. It is great that you are doing your own research, communicating with your doctors and benefiting from the supplements now.

The ultrasound treatments for lung inflammation sound amazing! I hope that this becomes available to all patients in the near future.
Yes, one day there will be a cure for Bronchiectasis. We must continue to search for therapies that work for us in the interim.

DAJ,

Thank you so much for all the wonderful detail. I don't do any of what you're doing beside vitamins. I had looked into the c.silver years back and you've reminded me now of why I didn't try it. I read about how the skin can change color. My nebulizer doesn't do a thing for me anymore with plain Albuterol (it used to help) and I have asked my Pulmonologist for anything else to put in it and always got vague answers which mainly mean I don't need anything else and my natural dr.at the time said oh you can put in (so many drops) of peroxide with distilled water but I never understood just how much exactly so was afraid to try. I've asked for Pulm. Rehab and been told by two doctors I don't need it,; one said because I can cough on my own. So my research is cut out for me now with all your info but I do have to say I don't experience infections and exacerbations other than bronchitis once a year and lasting 4-6 wks. when I cough non stop 24/7, and doctor told me I could take Benedril to help me sleep but not in daytime. I tried Tesselon Perles for cough and they worked but I can't find out if they can be taken for very long. I can get a script for them but only for 10 days but my cough can also be every night after my inhaler, and that's not bronchitis but irritation or something. (I take Symbicort steroid inhaler and if I do it at bedtime I find within 20 min or so I'm coughing and nose runs and gets clogged up and laying down is impossible. I have to dry everything up first and then get on 3 pillows and gradually reduce to 2 and then right before I go to sleep take out the 2nd pillow. And that's every night. I have no idea if it's allergy or sensitivity to the inhaler but it feels like it could be. By the way I'm 82 now and have perfect bloodwork also and my doc says the same thing - "keep doing what you're doing; I've not seen perfect blood work in a long time". But that's no consolation when you can't breathe and so on.

So, thank you again, for these suggestions which I'm going to copy right away.

Tabbits - I'm so sorry to hear that you are having so much difficulty. It is hard dealing with this disease, and that's why sharing is so important. i've found that a dropperful of lobelia tincture under the tongue opens up my bronchials and stops the coughing. I had taken hydrogen peroxide in IVs last year but have not heard of using it in the nebulizer. I'll research that. Hope you get some relief.

Tabbitts,

I feel your frustrations with the words from your doctor-“ your labs are perfect “. Yes, we can have great labs but still be experiencing symptoms and breathing issues are a huge issue
Do you have reflux? Is it under control?

We are here for you.

Tabbits – You mentioned that your natural doc recommended using hydrogen peroxide with distilled water in the nebulizer but you weren’t sure how to use it.That prompted me to do some research.I found a website that explains how to use it and I thought you might be interested.https://getbetterwellness.com/nebulizedperoxide/And here is a link to a video on how to make it https://getbetterwellness.com/videos/. I’m going to try it.

Tabbitts,

It sounds as if there is some confusion between the two GI docs. Many NTM/ Bronchiectasis patients do have reflux. Perhaps, seek another GI opinion when you are ready. I sought a 2nd opinion via tele health recently w a great GI doctor who was not rushing to do an endoscopy but willing to try a few different meds. I am very hypersensitive, allergic to many preservatives, chemicals, drugs, etc.

Maybe it is an allergic type of reaction- dryness of bread ?

Please keep me posted.

Christina,

I can only imagine what inhaled hydrogen peroxide can possdo to the nasal passages. As a nurse, I witnessed using this as a cleansing agent for deep wounds, etc.

Tabbitts,

I assume that the recent scope doesn’t indicate reflux ….
Hence, you do not need meds. I fully understand your concern with osteoporosis.

I would recommend reading more in acid reflux since many NTM / Bronchiectasis patients do have it.

Tabbitts,

Below is a blog article on reflux

https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/47/The-Basics-of-Acid-Reflux

Great question, Christina!

In addition to the terrific answers already provided, I would like to see better education for front line general practitioners, so they can refer patients to Pulmonology, rather than sending them home repeatedly with bronchitis, pneumonia and asthma diagnoses.

And for pulmonologists, I hope they will be on the watch for bronchiectasis and NTM, and spend time educating patients and their families about how to proceed with these conditions.

New therapies including 1 ) an inhaler that would stop the inflammatory process of bronchiecstasis and stop patients from getting bacteria in their lungs. Inhalers that would be directed directly to the lungs and thus avoid systemic side effects and 2 ) this is my greatest hope - safe , effective stem cell therapy that could repair the damaged bronchiecstasis lung !

Storyteller,

Hello! I hear your frustrations re: new drug development. Clinical trials take time to assure the safety of the new drug. It was a joint world wide effort with the pandemic due to the nature of the crisis, number of deaths which expedited the vaccination development within a short period.

Re: stem cells- There is not enough research on stem cell therapy and some stem cell therapy centers offer false hope to patients.