Anyone had any experience of mycobacterium and the treatment regime for it?
Mycobacterium: Anyone had any... - Lung Conditions C...
Mycobacterium
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I contracted mycobacterium kansasii in 2002 (described as environmental TB) . It took 6 months to diagnose and I had 9 months recampacin and ethambutol which cleared it.Also steroids to give me the hamster look.
I then developed copd and bronchiectasis. Still standing on 24 /7 oxygen, various inhalers and nebuliser colomycin. Not walking much though!
I was diagnosed with a mycobacterium avium complex infection last year. This was based on the results of a ct scan. I have been taking rifampicin and clarithromycin for 12months and will continue to do so until they are certain that the infection is clear. In November I had a bronchial large which did not grow Mac but I think they keep you on the antibiotics for longer to ensure its fully cleared. I do have bronchiectasis. Hope this is helpful.
That should read bronchial lavage
How did you cope with bronchial lavage , it sounds frightening to me. Were you awake for procedure?
I replied to you but can't find it on here. Did you receive my reply?
Yes thanks I did. It was really helpful especially because your treatment was with clarothromycin and rifampicin. Dad has had clarithromycin in the past so we know he's ok with it. Other people seem to have had ethambutol which sounds really grim. I don't think my dad could cope with a drug like that one. He's too thin and frail plus is 82 which goes against him. Your story gives us hope that there could be a treatment available that he might be able to tolerate.
No didn't get it,please send again.,thanks.
Second attempt at reply. I had a bronchial lavage last January and again in November. Both times they sedated me intravenously and gave me an amnesiac but I was conscious throughout. They also sprayed my throat to numb it and I think they sprayed my nostrils too. There were at least five members of staff in the treatment room including a nurse monitoring my vital signs a doctor and a consultant supervising. They passed a flexible tube down my throat and I remember watching it on the TV screen going down into my lungs. At certain points they obviously put water into my lungs and sucked it out to get the samples they wanted. It was all hazy because of the drugs I had been given but I do remember that part was not pleasant. I will be honest. The first bronchoscopy went according to the leaflet I was given. I was kept in a few hours to make sure I could eat and drink and then went home. No after effects. I'm afraid the second wasn't the same. I don't know whether the fact that I was kept waiting for a couple of hours before the procedure lead to more anxiety or whether the second lavage was more invasive. But I remember getting quite distressed. Immediately after, while still in the treatment room, I developed terrible pain down my right hand side. I was given an xray to check I had not got a pneumothorax, which I hadn't. They eventually sent me home with strong painkillers, a possible diagnosis of cracked ribs, but nothing definite, and I endured the horrendous pain for about three days. It eventually went after a week or so. I think the second time I was very unlucky. Lots of people on this site have had bronchoscopies with no side effects. Hope this is helpful. Happy to answer any other questions if I can. If they use a rigid tube I think they give you a general anaesthetic.
Thanks for getting back to me. Specialist has suggested I might need one . Don't think I fancy having it done while I'm awake. Looks like you were very unfortunate the second time.
Yes. If my consultant tells me I have to have another bronchoscopy I would go ahead with it. I have not come across anybody in my research who had the same problems I had and the first one went ahead with no hitches. Discuss your concerns with your consultant. Let me know how you get on.
What is the purpose of the lavage, does it improve your condition?
The bronchoscopy itself gives the doctors a chance to see inside your lungs as the tube is fitted with a camera. The lavage is where they wash out so they can get samples from various parts of your lung. They then see if they can grow bacteria/fungus. It's like taking a sputum sample but reaches those parts a sputum sample can't reach. It is a diagnostic tool which will allow them to treat your condition better.
I'd never heard of it before my doctor mentioned it. Have just completed sputum samples to test for Mycobacterium but these take about six weeks to culture. Does the lavage show results sooner? Thanks.
No. It will take same time to culture. But lavage can reach deeper into lungs than a sputum sample. Also can get sample from a particular section of lung. This is my understanding but I'm not medically trained!
Can understand reasons but still apprehensive . Will let you know if they want to go ahead. Meanwhile am very breathless most of the time .
Hi Yes I had MAC and was treat with ethambutol etc for 22 months. I'm now finished with the drugs but now have weekly Immunoglobulin transfusions as Consultant has found I have very little immunity. I still have to continue taking sputum samples as although Im clear they can't say it won't return. Also gave bronchiectasis. The drug regime is not nice I lost 2.5 stone and was really tired.
Regular eye tests were carried out as ethambutol can affect the eye. I was scare but came through it due to the knowledge and care of my UK consultant.
Downside a lot of medics pass you on as they don't know what it is. Take care
I have had this for 6 years. Mac avium complex. First treated with rifabutin and ethambutol and couldn't tolerate the drugs. We then left it untreated and that's how it remains last showed up a year ago. I also have COPD and Broncheictasis and am on constant antibiotic prophylaxis . Had bad infections for several months and hospital IVs for 15 days so far this year with pneumonia. Not sure if the mac makes these infections worse. Thankfully much better at the moment. Good luck with your treatment.
Lizzie 💐
