Discussions

Has anyone had a negative culture for MAC in between 2 positive cultures. Makes me wonder if there are false negatives.

I used it for some years its strong and smells awful but it does the trick. I had the 2.0 I do believe. Some ppl it maybe to strong and really irritate the airways. Now I have hypertonic saline much better than this. There is a supplement that does the same thing called NAC found at a health food store.

I am new to lung disease although I’ve had a chronic cough and trouble breathing for two decades. Never saw anybody for it because I was once told it was all from anxiety . January 2015 I decided I should get it checked out and after much testing & many doctors found I have bronchiectasis, fibrosis and mycobacterium abscessus.

I go in hospital on Monday to start the drugs. Amikacin, Clofazimine and Imipenim. ( I’m allergic to penicillin so they want to start the latter in the hospital.).

Has anyone had this particular cocktail and how bad are the side effects? I am already a pretty sick 52-year-old and I’m very sensitive to medications. Just want to know what to expect. Does anyone take probiotics with their antibiotic therapy?

Thanks all. Be well.

'this is so weird I talked to my lincare supplier Rt today about trouble with my vent we talked about several things one of the afflovest maybe I can get approved for and he brought up this suction machine I cant remember the name of it. He as calling my pulmonologist in ND about these. He said just think of it as a vacuum. I do have the hil rom vest since 2014.

My doctor is recommending that I try colistin inhaled. My insurance will not cover and my 6 months of treatment will cost around $25,000. The doctor's request for an exemption was denied so the cost will be totally out of pocket. Has anyone else had a problem with this?

It is appearing more and more likely that MAI treatment is necessary and can no longer be avoided. How is it administered? Are these pills taken at home or an intravenous application? How often if intravenous? Or is it different for each individual?

I cough and spit out mucus a lot. Sometimes this will happen when I'm out, say in a store or restaurant. I try to cough/spit into a tissue as discreetly as possible, but it is pretty gross. Any suggestions?

Does anyone happen to have a list of pulmonologist's that specialize in Non-cf cystic Bronchiectasis in infants and pediatrics in the United States?? I am battling our insurance company over a denial for her to travel from Texas to Colorado for 10 day intense program. They want me to call 125 pulmonologist in Texas before they will approve it. Believe it or not, I have previously done that but I cannot find my list anywhere. I have to have my appeal sent in and received by June 18th, when they are going to do a peer to peer review with our pulmonologist and their medical director. If anyone one has a list or know where I could get one I would deeply appreciative! TIA

Rplaset,

Hello! I am so glad to read that you have a plan in place. Knowledge, knowing the steps needed to be taken lessen the angst when dealing with a new diagnosis.

I am so glad that your wife was diagnosed early. In the interim, Please ask any questions which we may be able to assist you with.

Wishing you the very, very best!

Kati

Does anyone have experience with Saline Solution Therapy? If so, how often do you do it? Is it on a daily basis? Have you had any positive or adverse effects?

1-2 months after beating the NTM and ending the Clarithromycin (and other antibiotics) I have increased shortness of breath. My pulmo thinks the Clarithromycin was reducing my COPD inflammation, and now the inflammation is back.

However, she is hesitant to put me on just the Clarithromycin because if the NTM returns, it could develop resistance before we even know it's back.

Anyone else in this dilemma? What did your doc recommend?

While it's not targeted specifically towards people with chronic illness, the AARP website has an excellent page full of caregiver resources. It includes helpful information on caregiver basics, physical and emotional health, financial and legal issues as finding balance for the caregiver. https://www.aarp.org/caregiving/?intcmp=GLBNAV-PL-...

I just discovered you can buy respiratory equipment on ebay. Is that an option for you, Made Pramana?

Does anyone know how to upload a pdf here? I found recent articles on bronchiectasis.

How many on this forum are HCP with bronchiectasis?

I am an RN.

We have recently gotten a referral approved for out of state out of network specialist. Was curious if anyone had any experience with Dr. Charles Daley at Nation Jewish Health Facility in Colorado?

Does anyone have a promotional/discount code for the World Conference registration fee? It is going to cost my husband and I $500 to both register. We habe been saving for almost a year for this, since we are turning this conference into a road trip vacation with all 3 of our kiddos and my parents. So what we have saved is has been put towards gas, sleeping accommodations, food, and educational fun. We are driving a RV and SUV from TX to DC.......if you knew my family you would understand why we are calling this the Griswald family vacation!!!!! LOL! I guess we just were not expecting that large of a registration fee, because we want to be able to be present all 3 days not just patient forum on the last day. Any discount or ideas on how we can get the registration fees reduced would be greatly appreciated!

Once again picture added for smiles! Just Sailor Grace being her silly self!

Recently we were told by our daughter's geneticist, that she was almost positive she had Opitz G/BBB disease. She said Bronchiectasis, as well as laryngeal cleft and autism are symptoms of the rare genetic disease. We are currently awaiting her test results. Has anyone else heard of this disease or been diagnosed with Opitz G/BBB disease and Bronchiectasis?

I know I asked this a while back, but has anyone heard anything about 3rd World Bronchiectasis Conference in DC July 12-14th? We are planning to drive from TX with all 3 kiddos and both my parents in their rv and need to make our reservations for our stops. As well as a hotel room in DC for the conference. Basically trying to turn the conference into a reason for a fun but educational road trip for our 2 older children.

In reference to the conference, are you required to registered to attend? Is there a maximum attendance allowed? Is there a syllabus or outline of the conference anywhere online for us to view? Where can we register and get any and all information in regards to this year's World Bronchiectasis Conference?

Sorry to be a broken record, and continuing to ask these questions.....we have just been try to plan this trip to DC for over a year. We would hate to miss anything. Thank you in advance for any information!!!

Had to add a picture just to make everyone smile!

Adverse effects of the 3 major NTM antibiotics.

My physician orders high doses of Prednisone when I have an exacerbation Is this recommended?

How should GERD be diagnosed especially if it may be silent? And what kind of treatment is there? i.e. how aggressive should one be in persuing treatment in an effort to eradicate chronic NTM not eliminated by multiple courses of antibiotics

I have been prescribed cough pills by my pulmonologist, but I don't take them, thinking that it's better to get the mucous up and out than let it be a breeding ground for infection. But I pretty much cough all day long now, and would like some relief. What is your experience with cough pills?

My most frequent exacerbations show up as pleuritic pain, sometimes accompanied by extra lung congestion, sometimes accompanied by fever. Usually 1 or 2 days of extra tiredness. I generally rest, apply heat, take Advil, maybe extra Mucinex. But I just wonder if this is typical or more unusual to get pleurisy in this situation.

I'm not sure if this is caused by bronchiectasis or NTM, or maybe both have the potential to cause it. I finished treatment for NTM last summer, but I realize it can return.

Thanks for any feedback.

Does anyone know the where, when and how to register for the 2018 conference? I did see it was going to be in Washington, D.C. in July 2018, but have not been able to confirm dates. I also cannot find how to register? My family is really wanting to attend, and do not want to miss the registration details. We are also needing to save up for the trip from TX to D.C. and the sooner the better. If anyone has any information in regards to this please let me know!!! How your day is treating you well, God bless.