Discussions

I have recently 3/2016 been diagnosed with a fungus in my lungs in addition to NTM ongoing infection. Do any of you have a diagnosis of Aspergillis flavus? I am attempting to gather some information or locate someone who has experience with this fungus.

That is is not going to get any better. I have ppl keep asking are you better do you feel better? There is no getting better. That is the hard part. I have never had this before even with my asthma and emphysema I had no mucus or cough only with an infection.

My family just don't understand it at all. They think I can keep doing what I used to do and its hard even for myself to not be able to do what i used to do. For example the grands had a field and track today. There mom kept asking me if I was coming. I never missed one ever. Even my own kids. No I can't do it. Its along walk to the bleachers and also the wind was bad today. I don't know if they don't want to accept it and can't accept that I have gotten worse. It does cause anxiety for myself not being able to do what they want and what I used to do.

With summer around the corner, wondering what tips you have for dealing with increased humidity and heat?

Environmental factors play a big part in Bronchiectasis and NTM. How do your activities change with the seasons? What are some new activities/hobbies you are doing with more daylight and warmer weather?

I've heard doctors say that some patients need surgery to remove part of a lung even though the patient is already on treatment. Why is that?

Has anyone heard of Phage therapy to cure bronchiectasis? I read that the do this in the Republic of Georgia

Norma

Are there international programs offered to those with Bronchiectasis? I'm definitely interested to know what other countries are doing in terms of research and patient support!

Hi - I have had a history of bronchiectasis since 2005. The thing the doctors told me was to be careful if you catch a cold or flu as that can turn into pneumonia. Fast forward to fall of 2014, I had been having night sweats for years but now I felt like I was getting a fever all the time, that kind of light headed feeling, than the mucus increased. I went to the Dr. and was just told I have a bug, take some mucus meds. The low grade fever stayed, along with the extra mucus, back to the dr., this time some prednisone. The fevers went a bit higher and I started just sleeping a lot between coughing fits. Dr. number 3 gave me a script for some super cough meds and ceftin antibiotics. I demanded a chest X-ray due to wanting to make sure pneumonia was not setting in, Dr. said if you are not better in a week than we will X-ray, I told him no we need to do it now!. So I got the X-ray and yes I had pneumonia in both lungs. I was sent for some blood work which said I tested positive for mycoplasma pneumonia. The ceftin seemed to be helping and I started feeling better. Even the cough lessened. I was telling people I have coughed for 10 years and now it is like a bad memory, why hadn't I taken ceftin before this, it is like a miracle. 7 days after I finished the ceftin all the symptoms returned. This was repeated 5 more times when I said this is crazy and found the most amazing ID doctor. Her first ? is why are you here, I told her I was tired of being so sick.....she took my history did an exam ordered some test and said " I believe you have MAC" - followed up with pulmonary Dr., had bronchoscopy and that confirmed the NTM MAI - Than it was the wait for what meds. to take. I continued to take the ceftin until the big 3 were chosen. This all took from Nov. 2014 till May 13th 2015 - "1 year ago today" - I have had 2 neg cultures for MAI, one did show aspergillus which i am not being treated for as It is probably colonized and not causing any further problems. - During this year of treatment I did have an episode of coughing up blood, but for the fast action of my pulmonary Dr. within a week I had another bronchoscopy and a PICC line to treat a very bad pseudomonas infection. This has been a roller coaster of a ride with leaning how to cope with this physically and mentally. I am still learning.......

Norma

I know a couple of patients interested in joining the Bronchiectasis and NTM Research Registry - How can they join?

How does someone know they are experiencing an exacerbation?

What is the Bronchiectasis and NTM Research Registry? Is it the same as this online community? Is it something I should be a part of?

As a novice to these diseases, I am curious about the connection, if any, between Bronchiectasis and NTM. Does anyone have information on this?

I been wondering about these two you can neb gentomicin and tobramycin I am asking my pulmo when I see him in June. Was told that you have to prove a bacteria by sputum is that true do you know for sure? There is a study out now that they are working on inhaled antibiotics for bronchiectasis. I keep watching for anything for this lung disease. I am taking zpak 3 times a week now but its not clearing up but keeping it stable I guess.

Does anyone know what causes Bronchiectasis? Also interested in hearing diagnosis experiences (i.e. did your doctor tell you how you got Bronchiectasis?) if anyone is willing to share.

Thanks!

What are the most common medications currently being used to treat NTM, and the side effects associated with each one.

Recently had to stop iv amikacin due to hearing loss. Still on rifampin and azythromycin. Waiting for bedaquilline which was approved by pharmaceutical co., Sirturo.

Any side effects, efficacy of drug?

I am interested in knowing how common Bronchiectasis is. Does anyone have any statistics associated with Bronchiectasis?

I have been diagnosed with Mycobacterium abcessus and Mycobacterium chelanae. Has anyone ever been cured from this? Does anyone know what life expectancy is? I am only 51 years old.

I have had asthma most my life then in 97 I was termed copd. So its emphysema, chronic bronchitis, bronchiectasis and mild PH. I was diagnosed with bronchiectasis in 2015 by ct scan. I never coughed or had mucus unless infection till this happened. Last year March ended up in hospital with a exacerbation and never been the same since. In Oct 15 thru February one infection after another. Antibiotic and pred burst every month. Missing half of my pulmonary rehab each of those months. Asking my pulmo who is over 100 miles away about taking zpak 3 days a week he said no. Well after having so much trouble he finally agreed to it. So I take zpak 3 days a week so far so good off pred totally. I do 7% saline in neb or mycomyst 20 in neb if that dont work but the saline usually does it. Also he doubled my daily vials of pulmicort rather I have steroids that way than pred all the time. I am doing ok I have trouble its not easy but keep plugging along. I go to pulmonary rehab 3 days a week some days are good some are not. Been 4yrs this May since I started. I was wondering about tobramycin for bronchiectasis. Its used for CF but can be used for bronchiectasis. Do you have to prove the bacteria before the pulmo does ok this to use? I also seen a study on the floxin made into a inhaler for bronchiectasis. Its in the works yet. Had to add a nodule we are watching not caner yet just watching. Most of the nodules are not cancer.

I was diagnosed over 12 years ago with MAI and bronchiectasis. After having been to several doctors, I am going to one now that is treating me for asthma. I feel good using Symbicort but wonder if I should have more extensive testing to see if I still have MAI or if I should leave well enough alone. Help!

Can someone direct me to very general information on Bronchiectasis that I can share with friends who have never heard of the disease, but want to learn more?

Some of the descriptions out there on the web are lengthy and confusing - and I want to make sure I direct friends to comprehensive and accurate information!

Looking for a doctor in Dallas who specializes in bronchiectasis

Can anyone recommend a really good nebulizer for inhaling hypertonic saline solution? One that nebulizes pretty quickly, puts out a lot of "saline vapor," effective in getting the "gunk" out.

Thanks

Laura

Is there something I can do to prevent infections and at the same time help me breathe better

Hi - found this site today and hope i can find a few answers - I have been on a quest to find the best place to live in the USA that is less likely to cause illness to people with bronchiectasis / NTM - also I would like to let the medical community realize that once you give a patient a diagnosis. of bronchiectasis the conversation should include what this means in the future for other illnesses that having bronc. makes you more apt to contract - i was officially dig in 2005 with bronch. after years of symptoms and now have been on meds for a year for NTM / MAI - I have been treated for puesdomonas also - I have been told that where I live is full of NTM but no one has any answers as to a better place - I found a little info on a medicare map of state with high NTM - I live on the east coast of Fl. and was told by my Dr. that this is about the worst place - any info would be great - hope this site is helpful for this community as we need some much needed answers about what life is like beyond diagnosis - thanks to all - norma