Discussions

Hi, I'm new to the Community. I have a family member diagnosed with MAI, who is taking multiple antibiotics. I'd like to know if anyone here take Low Dose Naltrexone (LDN) as an adjunct therapy and what your experience has been. I take LDN myself for an AI condition, so know what it's about. Thanks very much!

I was recently diagnosed with a fib and was placed on Eliquis. Today I noticed that the mucis I cough up is bloody, I am wondering if this is a temporary problem that I have to work through or do I need to see if I need to change my medications.

I use a ProAir inhaler and Advair. My question is, how do you clean the actuator when it is plugged? Do you use clorox or vinegar to get it to work? Mine seems to be plugged and I have used hot water to get it unplugged. Also do you find yourself very fatigued due to Bronchiectasis? I find myself extremely tired.

Is this site active as of 3/26/2022?

I have repeatedly submitted sputum samples and gotten the following response "The presence of 10 or more epithelial cells per low power field

indicates contamination with oropharyngeal flora making the specimen

unsuitable for processing." Why is this happening and what can I do about how I collect the sample to avoid having it contaminated? My pulmonologist told me it happens often and not to worry, but those samples aren't being evaluated for gram stain cultures which have revealed infections (not NTM's) in the past.

Thanks for anyone who has advice they can share.

Can anybody recommend a doctor in northwest Washington who has experience with m abscesses? Preferably Seattle or Bellingham area?

How do you know when you are having a flare up of bronchiectasis? I also have very severe COPD (FEV1 = 21%) so I haven't been able to figure out which disease is flaring. I asked my Pul. and he just said "you're breathing will get worse". Well, duh. I get that with my COPD so how so you know which disease is causing the problem? (I have a Pul for my COPD) and an ID dr. for the bronchiectasis) Can anyone tell me? Thanks.

Does anyone have recommendations for a reliable, over-the-counter Pulse Oximeter?

I was diagnosed with mild bronchiectasis last year. As everyone can relate, this diagnosis has made the pandemic especially difficult. I've been extremely careful about any exposures to Covid. However, in these challenging times, my pulmonologist recommended getting a Pulse Oximeter.

I've seen brand names such as Zacurate Pro Series, Oxiline, Insignia, Choicemed and AccuMed. I would appreciate recommendations from anyone who has purchased a Pulse Oximeter. Which brand do you use? How accurate? How easy to use? What was the price? Thank you!

Has anyone had a lobectomy due to mac infection and broncheatasis? The surgeon suggested removing the upper right lobe of the right lung and a portion of the lower right lobe in the right lobe where there is MAC.

Just curious if anyone else has had something similar performed. If they have, how bad was it? Did it help you?

Is anyone using Cayston to treat pseudomonas? Is made by Gilead,

Hi all! I'm new to the 3 antibiotic regimen; having just begun the three-day-a-week protocol. Does anyone have any advice for me regarding the scheduling of the meds in combination with the prescribed probiotics and now the addition of carafate for digestive issues. Given the recommendations regarding taking most drugs far apart from each other and on an empty stomach, how can I manage the regimen properly? Take Azithromycin together with Ethambutol? And Rifampin separately later in the evening? I appreciate any advice from veterans! Thank you!

What do you feel would be the greatest contribution to those diagnosed with bronchiectasis and/or NTM lung disease?

I came across a Washington Post article in early October about finding the best (safest) face masks and followed up, checking various resources in the article.

One stood out particularly -- his name is Aaron Collins and he is a mechanical engineer who began testing various masks available to the public in 2020. He videoed his test sessions and then posted them on YouTube (mask nerd youtube). He also produced a spreadsheet which contains all his testing data on the face masks he has tested and where to buy them.

While some of you may prefer to wear N95s, especially for those of you who experience SOB, you might want to take a look at Aaron's videos (I'd start with his "top picks") and the spreadsheet. Those with the lowest number in the column "time to max breath" column would be the most breathable. However, there are lots of other things to consider -- the better the fit, the better the mask will protect one so the dimensions of the mask matters.

Aaron generally prefers the KF94s which are made in South Korea. The South Korean Ministry of Health sets certification and testing standards and South Korean manufacturers who can't meet those standards are not allowed to use the KF94 designation on their products. I personally wear a BOTN medium KF94 but keep in mind that I am 5'3", weigh under 115# and have a small face.

Also, if you are using fabric masks, watch his videos which discuss those.

So I’ve had Bronchiectasis for years with just some coughing. But this year in addition to 2 flares I get short of breath when I’m not flaring. My breathing is clear otherwise.. The shortness of breath has seemed to come on quickly. Has anyone else experienced this. ?

I been having a rough time of it last few months been coughing for weeks not much brought up after all my neb meds saline and vest airway and the extra expap. Vent at night had to stop it for a while due to coughing. Now my Co2 went from 54 to 58 even doing the life2000 at rehab. .Did doxycline few weeks ago but not any better so Thursday seen my pulmo she has me on leviquin now. I have done zpak 3 times a week for a long time but think its wore off. She not fond of giving out prednisone unless really needing it which I thought I did. . Did chest x-ray here radiologist I feel never did his job nothing was on it. So Thursday I done a ct scan and showed my nodule got bigger to 7 mm so now we are some what concerned. 3 months another ct scan to see if it changed. My allergist, pulmo, Gi dr are all in ND which is 100 miles one way.

I found this on my state's COVID information hub. It's meant for unvaccinated, uninfected individuals living in the 50 states to assess their risk given their medical/health conditions. If you know anyone with bronchiectasis (it's one of the conditions listed) who hasn't been vaccinated, he/she might want to use it. I did it myself although I am fully vaccinated and it's an eye-opener.

Hi cicimac! I believe that Arikayce offers an AriKares program. They company asks you to fill out this form with your physician. They market that they will help you to find the lowest cost. Download the form with the link I am providing to you and there is also a number and email that you can use if you have questions on this program. Hope this helps!

https://www.arikayce.com/pdf/arikares_enrollment_f...

Have you ever had surgery on your lungs? If so, what tips can you share to help others with preparation and recovery?

My Bronchiectasis has improved and my lung specialist has told me my lungs are good but I don't understand why I still get breathless when walking up an incline, or doing chores. (he doesn't have an answer) I accept that I am very mild so why does this happen, specialist seems to think it's because I don't do enough exercise. I walk as often as I can up to 2 klms usually with rests. Could the problem be that I'm 78 and slowing down.

Hello. I am new to this site, but wanted to see if anyone can offer any input about tinnitus. I started azithromycin 500 mg three times per week and after one month, developed tinnitus and have stopped it. Does anyone have any experience with this and any input about whether this will go away or not ? Thanks !

I am at a more advanced stage of bronchiectasis, so I am always looking for ways to reduce inflammation/mucous. I am currently using a Healthy Wave PEMF mat (electromagnetic pulse treatment), which has been helpful in reducing mucous. I also just came across several articles about studies that are being done using ultrasound treatments in Covid patients to help reduce lung inflammation. Attached is a link to a study being done at Univ of California. Univ. of Minnesota has also done a similar study. The study participants are also being given some anti-inflammatory drugs in the California study but not in the Minnesota study. This could be promising.

https://health.ucsd.edu/news/releases/Pages/2021-0...

https://cse.umn.edu/college/feature-stories/ultras...

I read an article that this was a FDA breakthrough therapy. My doctor is unfamiliar with its effectiveness. Have anyone use the drug and been able to discern its effectivenss

Maintaining a positive attitude when you have bronchiectasis and NTM can be challenging. What types of activities bring you joy or improve your mood?

What airway clearance methods, techniques, or devices work best for clearing mucus from your airways?

I have altbuterol sulfate for my nebulizer. The problem is when I use it consistently I begin to have bad side effects. I get very shaky, can't stay asleep, headaches and generally fatigue. What has been found helpful for others. I do take a daily inhaler of Asmanex twice per day.