Discussions

Anyone found it to be helpful? I'm done with it but really didn't seem to help other than mucus is clear now. Shortly after taking my dose I seemed to get more throat and sinus inflammation.

My doc prescribed this along with pred for a sinus infection with companion wheezing in my upper airway and SOB.

Thanks, Kerie

Wondering if anyone nebs mucomyst and if you think it helps. I feel it makes me more sob. Dehydration?

Hi I was recently diagnosed with MAI And live in a rural area...Two Pulmonologist’s that I’ve traveled to have said not to seek treatment because of side effects...Now a third says that I should get treatment....Where are the top places to go for treatmen?… I’m willing to travel. National Jewish hospital? Stanford? NYU? UCSF? And which doctors?

And which doctors?

Please advise

Thanks so much,

This whole disease is sooo frustrating. Different doctors recommend different things so it is hard to know what to do. I beat MAC after 10 years! I try to be careful but evidently not careful enough, because now I have M. massiliense. Same type of treatment which is a big yuck but what can I do? I will definitely try to be more proactive. I drink only Spring water but do not have any filters on my water supply. I cannot bear the thought of giving up my showers but I may have to. I have not been given much info about the water situation but I will definitely start investigating.

Good luck on your journey. You can do it because you have to! Protecting our lungs must come first.

safe beverages on planes and in rest

I have only been on this drug for 7 days but have noticed after each treatment my oxygen goes down and my heart rate goes up. My physician said at this time he is not concerned. Has anyone else had these side effects this early in treatment?

I was born in 1946. I was diagnosed with chronic bronchitis at age 4 after a few events of bronchitis and two of pneumonia - the first at three months.

At six I was diagnosed with Bronchiectasis and my parents were told I would not make it through my teens without surgery. (The current drugs and other meds didn't exist in 1953.) I had a lobectomy at age 7 to remove the two lower lobes of my right lung, and another at age 12 to remove the lower lobe of my left lung. I still had pneumonia and bronchitis a few times during my teens.

But, though most of my 20's through 50's I was active and able to work and play. I played recreational softball and competitive volleyball. Into my 40's I could still play a bit of basketball. I mention this to illustrate that I was able to do most everything, though I never had stamina for running. I had a lot of colds, a few bouts of bronchitis, and pneumonia twice. I had to be careful about colds and avoid the flu.

I never expected to live into my 50's.

It was around then that I had to more actively manage myself. I have a few exacerbations each year now and have to take antibiotics plus prednisone to get over it. I also use a few other meds and usue oxygen when I sleep or take moderate walks. I see my pulmonologist a few times per year.

I am 72 now and finally running out of air. I am still able to do many things but have more problems more often.

I'm starting to think I may be close to the record for longest life after a very early diagnosis of Bronchiectasis.

A friend told me last week that I was going to live another 20 years! I think she is overly optimistic, but I guess I'll go for it.

Hello I have been recommended Pall med filters for NTM-Xenopi control in home shower and taps. has anyone used these or got advise on which ones are best?

Has anyone tried using Hypervolt instead of a vest to improve chest clearance. i discovered it through a physical therapist for back pain, but the 'banging' movement of the tool reminded my of the chest physical therapy i received a while back. Scheduling chest therapy is time consuming and tough to fit in the day, so i had the crazy idea that this could work to the same effect. Wondering if anyone had tried?

here is a picture https://hyperice.com/hypervolt

Here is a link to a video that shows how it works to use it on the chest side

https://www.youtube.com/watch?v=xIpV6DbJ_Z0

and to use it on the back

Good morning! There was an article posted a while back that talked about NAC and Bronchiectasis, it may be something helpful with asking your doctor if it may be right for you.

https://bronchiectasisnewstoday.com/2019/05/09/n-a...

Hope someone out there can help. I’ve been on heavy doses of 3 antibiotics since Jan of 2017 for MAC. Sputum still showing positive and showing on CT 3 weeks ago.

My MAC doc prescribed Arikayce as an addition but the insurance company has denied coverage. I filed an appeal on Friday and found out the cost today.
With insurance (Medicare part D through SilverScript a CVS partner) it will be over $6,000 a month.
Without insurance it will be over $13,000 a month!!!
Has someone else out there been through this?
I also have 2nd hand smoke COPD, had upper left lung lobe removed in 2005 for aspergillosis and upper right lung lobe removed in 2016 for 2nd hand smoke lung cancer. My cancer Doctor is monitoring 3 lesions and says they should shrink on Arikayce if they are MAC. If they don’t shrink then probable cancer. So I need the Arikayce for this too.
I have multiple sclerosis and don’t heal well so he doesn’t want to do a biopsy on hard to reach lung lesions that may be MAC.
I need advice.Thanks for reading.

Hello, my first time on this blog! In 2017 I began the 3-drug regimen of azithromycin, ethambutol, and rifampin. After 12 months with no side effects, my platelet count suddenly began dropping, which was attributed to the rifampin and I was taken off it, and left on just the other two antibiotics for the remainder of the 18-month regimen. Regimen stopped after the18 months based on CT scan. Had another CT scan this past March and NTM is back. I'm not convinced that it was ever gone. Was started back on regimen, replacing rifampin with rifabutin, which I could not tolerate due to gastrointestinal issues.

Is anyone currently using something other than rifampin or rifabutin as their third antibiotic along with the azithromycin and ethambutol?

My physician is recommending that I begin with amikacin, but tells me that it is supposed to be used in addition to the 3 antibiotics.

I found a you tube video by Dr. Robert Bastian. He talks about a type of cough that is exactly what I have. His presentation is called Coughing That Won't Go Away. Has anyone seen this Doctor (near Chicago) or tried the medications he suggests?

Women with NTM and high level jobs . ( CEO, Managing director , etc ) . How do you get through your long stressful days coping with your disease?

I am wondering if they took a sputum sample to check what bus she may have? I was diagnosed 2014 but have asthma and emphysema.I am sure my bronchiectasis was caised from many lung infections. Xopenex neb followed by 7% hypertonic saline then go to the vest airway clearing system did really work for me. I do the vest set st 14 for 20 min. I then do brovana followed by spiriva then budensonide with Flovent inhaler ending this regiment. I love the saline mucinex doesn't Mywork for me but ppl do good with it. I hope this helps. Mine is good for a few then back to more again. My pulmo started me on zithromax 250 mg 3 times a week.

I've been told that distilled water is best to use with NeilMed, which I do at home. But how do I manage that when traveling in Europe? What type of water do you use at home and when traveling?

Good afternoon All!

I havent seen mentioned lobe reduction surgery as a possible way to aggressively intervene to remove the BE area of the lung where fluids and bacteria accumulate and bring on exacerbations.

Has anyone had this done and does it help?

Thanks much!

Greg

The patients and physicians at the recent Bronchiectasis and NTM conference in Texas implored all patients to exercise-saying it is a Critical Necessity!! What do you do on a daily or weekly basis to move your body and help your condition?

I was diagnosed last week with bronchiectasis. I am a physical education middle school teacher and am 49. I used to work out fairly regularly until I had to have a parathyroidectomy/thyroidectomy in the summer of 2017. It took half the year to get my life back together! I gradually began to work out again and was looking forward to a summer of health but the last day of school in 2018 I came down with an upper respiratory bug that then turned into bronchitis. I was so very sick. I found a pulmonologist in july and he put me on a barrage of meds (symbicort , spriiva, zrytec, singular, flonase,...the list goes on). I began to improve but it was slow. I made it through the winter even though I work in a petri-dish! But then in March I felt the same way I did the previous summer! I was super sick. The pulmonologist put me on prednisone and antibiotics but it took over 4 weeks. Needless to say, working out wasn't happening and hadn't been happening all school year. Two weeks ago I caught my husbands cold and it ended up starting to go to my chest. This time I didn't wait to see if things would clear up. I went back to the pulmonologist. That's when he tells me that the CT scan he had ran on my over a month ago shows I have bronchiectasis. He also said to find a new job! Shocking. So here's my thoughts...I've seen on this panel many comments about the benefits of exercise. After over a year of not really working out (yoga and spinning were my thing and I was very consistent for most of my adult life) did that keep this bronchiectasis diagnosis at bay. The doctor said it's kinda like the chicken and the egg thing. Which came first; the bronchiectasis that brings on the infections or the infection that brought on the bronchiectais! I'm just wondering if I hadn't stopped working out would I have not gotten to where I am? Not that I can change things but it might help me navigate my thoughts about working out again. I have to have surgery in 2 weeks and I'm wondering how concerned should I be about things. My doctor said not at all. I know this was super lengthy....I apologize. And I thank everyone that was willing to read to the end!

Recently diagnosed after ten years of “chronic bronchitis.” Prednisone and antibiotics knocked it out until last two years. My recent blood work shows compromised immune system, probably from me taking too much prednisone over last two years. Sputum being cultured now so we can see what we are dealing with...and hopefully get right antibiotic. On Symbicort twice daily, albuterol neb twice daily, Ibuprofen 800 mgs 4x daily, and trying to clear lungs...techniques that work much appreciated. Hard to sleep and breathless much of time with no fever and fairly good lung function tests. Had been fairly active till recently walking three miles per day and some weights till recently...too much coughing and hacking at gym.

Any suggestions would be appreciated and good luck to all in your fight with this condition!!

Greg

I have hil rom mine i set on 14 for 20 min 2 times a day. Do not know if they have settings the same. I was told by a copd rep at the hospital in Sept for me to do levelalbuterol is generic xopenex then hypertonic 7% saline then do the vest. It does work. Before was just doing brovana but now I do that after the vest followed by spiriva then budesonide and Flovent is my schedule. Yup alot of meds.

Tis the season of travel. Do you have any tips that have made traveling easier while dealing with a chronic lung condition? Please share!

Because I have bronchiectasis I know I will always cough but this is tooooo much. I use nebulized 7% saline twice daily, use Symbicort twice a day and use albuterol inhaler several times a day. I take ranitidine twice daily for acid reflux. HELP, any ideas?

Hello Trusted Friends,

My lungs are colonized with MAC Avium, HIB, m. Abscessus has shown up a couple times, a little Aspergillus, and now my most recent culture grew out a fungus called Mucor. I have m. abscessus in my sinuses, too. The ID doctor explained it is a fungus that frequents airways, but it can also cause disease, so to be on the safe side, he ordered scans of my lungs & sinuses even though I just had them 3 mo. ago. I wondered if anyone else has/had mucormyocetes infection? Thanks, Keep the Faith!

I am going to be starting treatment for NTM and bronchiectasis very soon and I am very concerned about the side effects of the meds, particularly rifampin. Can anyone let me know how you dealt with the effects of discoloration of body fluids and how they might stain clothing? I don't want to ruin good clothing from perspiration. I've read plenty on the side effects of all the meds but nothing about how to avoid, if possible, the staining effects. Thanks so much