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1
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Has anyone been diagnosed with mycobacterium gordonae?
After a year of bronchiectasis, I've finally had a sputum culture positive for mycobacterium gordonae . Has anyone been treated for this? If yes, what drugs, what length of time, and what results. Thanks,
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2
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Organ donation
Go to there website I have it on my drivers license. I don't know what they would want I think everything is wore out. https://www.organdonor.gov/register.html?gclid=CjwKCAiAi4fwBRBxEiwAEO8_Hlmx_67Sp-Z-EoX-ItMQQ6pI …
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7
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Clofazamine
I will be starting taking Clofazamine soon and am wondering if anyone else has had experience taking it. I am interested in any tips on dealing with side effects and what sort of side effects you had. (I am being treated for mycobacteria abscessus.)
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2
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Just getting started
I am an older woman with a lifelong history of respiratory allergies with frequently recurring dry cough, and a tendency for colds to develop into bronchitis. I also have Crohns colitis, which spreads occasionally to my upper GI, and have been in …
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6
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Top Centers for MAI Treatment?
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 …
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1
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advice for taking the Big 3?
Will be starting treatment after the holidays. Just hoping for some advice, dos and don'ts for taking these. Not sure if it will be 3 days a week or 5. Will know more next week. If anyone has some advice I'm all ears.....or eyes in this case! :)
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6
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Anyone treated with augmentin antibiotic?
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 …
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2
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treatments
Just received message from pulmonologist that they want to start treatment for MAI as it MAY be dominant cause of radiographic findings. Says treatment will not affect ability to later treat chelonae abscessus.......anyone else have this happen?
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6
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Anyone using PALL Med filters on shower or taps?
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?
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1
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anyone on nebulized mucomyst?
Wondering if anyone nebs mucomyst and if you think it helps. I feel it makes me more sob. Dehydration?
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3
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Hypervolt instead of a Vest or chest PT?
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. …
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6
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What do you drink on a plane when boiled water or spring water is not availed?
safe beverages on planes and in rest
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5
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Anyone have a sputum sample that cultured Mucor?
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 …
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5
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Do you use tap water for NeilMed when traveling in Europe?
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?
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1
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Having side effects with both rifampin and rifabutin. Anyone using an alternative to these?
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 …
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1
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Tried everything and still lots of coughing?
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?
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4
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Hi Everyone, My Mom was diagnosed with Bronchiectasis a year ago. I need some answers.
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 …
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3
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What exercise are you doing today?
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?
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0
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8
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What suggestions do you have for managing my Bronchiectasis?
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 …
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3
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Anyone know of Bronchiectasis doctor in Cincinnati or Phoenix area? Thanks much!
Recently diagnosed with BE and live in Cincinnati and Phoenix areas. Looking for the right physician who specializes in BE treatment and can let me know how to fight and manage this disease. Your help is much appreciated! Thanks Greg
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0
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14
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New to this diagnosis and overwhelmed!
Hi, I am very newly diagnosed with Bronchiectatis, Mycobacterium Abscessus, and Aspergillus. I am feeling a little overwhelmed to say the least. I will be going to National Jewish Hospital in Denver for a second opinion sometime in the near future. My …
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1
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Why can't I control my cough better.
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 …
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17
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What is pseudomonas? Has anyone experienced pseudomonas? If so, what was the treatment?
I was diagnosed with pseudomonas a few months ago & had a hard time getting it resolved. They had to change antibiotics a few times.
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4
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Bronchiectasis coughing&daily CPAP
Newbie here. Diagnosed last month with Bronchiectasis and severe Obstructive Sleep Apnea. I want to learn and I think many of you have already walked where I’m likely headed. First night last night on my CPAP machine. My Bronchiectasis not riled up right …
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2
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on third day of Lexoflaxacin Antibiotic and mucus stops. Why?
I have had Bronchiectasis for about 2 years. I started a prescription of Lexofloxacin for 7 days. After three days feeling much better I quit coughing up mucous. My question is WHY? I am happy about it, but I can't keep taking an antibiotic to feel good. …
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