I am an 84 year old woman, diagnosed with MAC and Bronchiectasis 10 years ago. The antibiotic treatment I was prescribed made me very ill, so I stopped and changed doctors. Eventually, the new doctor asked me to try the regime again and I did, with the same result. I stayed with him until recently when he referred me to a different specialist with the idea that a new, inhaled therapy would be prescribed. Much to my dismay, the antibiotic cocktail is again being pushed. I was told that my lungs will last no more than two years because of the destruction in the right lower lobe, and that possibly it will need to be removed. I don't believe the oral treatment is worth trying again. Does anyone have any thoughts about this that might help me?
Bronchiectasis with MAC: I am an 8... - Lung Conditions C...
Bronchiectasis with MAC
Are you now with a bronchiectasis specialist or a general respiratory consultant? There are many different ways to tackle bronch and the bacteria which can colonise us. The exacerbation needs knocking on the head, usually by IV antibiotics, then nebulised antibiotic therapy on a permanent basis to keep the numbers down. I am always suspicious when doctors talk of chopping the lungs about in bronch. Especially at your age. You are doing very well and have the remainder of your lungs to breathe with. The bottom of my right lung has been destroyed since I was 3. I have many other areas of bronch. My mother refused to let them chop me about. I am 68 now and still going strong after living a life as normal as my friends so far. I suggest that you look for a proper bronchiectasis specialist in your area. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral.
Thank you for your reply! I have been under the care of a pulmonologist at the local University Medical Center and he is the one who told me about nebulized antibiotic
treatment and who referred me to another doctor in that group who is a specialist in Bronch. The puzzling thing is that he is trying to start me ( for the 3rd time ) on oral antibiotics which really tear me down. I have to now call the office with my refusal to
take them again and to request the treatment my original doctor said I should have.
Yes you know how your body reacts. Stick to your guns about the inhaled abs. I don’t know which abs they give for MAC. You may need IV for those to avoid taking oral abs which upset you.
Thank you for your encouragement. My doctor is waiting to see if insurance will cover the nebulized antibiotics. IV treatment sounds awful. Meanwhile, I have started Azythromycin, which I seem to tolerate. MAC stands for Mycobacterium
AviumComplex and is very hard to kill.
Yes I know about mycobacterium but as I have been lucky enough to avoid it I am not sure which abs they use for it. IV is not that bad. At least it avoids the digestive problems of oral antibiotics. Are you not in the UK as you need your antibiotics on insurance?
I have been told I have staphylecoccus aureaus but no treatment s far. Have you come across this?
Yes it’s one of the bugs which like to party in there. You need the correct antibiotic for it. If you have bronchiectasis that will be for 14 days.
Thank you. When I get the phone call I will try for a prescription. The pathology note mentioned three abs so fingers crossed there is something that suits me. I have been feeling unwell. Love Iris x
I meant to thank you for explaining that you have lower lobe destruction as well, and
have had since you were 3 years old! I feel more confident now. I just have to deal with getting the right antibiotic treatment for the MAC which the new doctor said would migrate to the rest of my lungs.
Just wanted to jump in and do a ‘me too’ to encourage you. I’ve also had bronch since aged 3 and at 20 was in hospital with a view to removal of the 2 worst lobes. Fortunately they decided against it. Now I’m 75, have had a good life, and apart from pseudomonas colonisation my lungs are in many ways better, certainly clearer, than they’ve been for many years thanks to modern medicine etc. So please hang in there with a full set of lungs and find the right treatment. B
I think it sounds like you need to get a few opinions from different specialists to put your mind at rest and get the best treatment for your particular situation.
My mum (now 86) has MAC and Bronchiectasis too . Plus, like you, she couldn't tolerate the combination drugs for MAC (she only had 2 weeks treatment instead of 2 years due to the severe side effects -she tried twice, and ended up hospitalised with acute liver issues - a third time was warned against) but perhaps your situation is different so this is why I think you really need to see several specialists to make the best choice. Doctors need to take many things into consideration and different people may seem like they have the same issue but they are at different stages so different treatments are needed based on age or stage of issue, weight, and many other factors. In my mum's case, her Bronchiectasis took a rapid turn for the worse this year but a Nebuliser with 0.9% saline and another drug and occasionally Salbutamol together with physio (Active cycle of breathing) have helped her a lot. Her consultant also suggested only judicious use of antibiotics due to the issues antibiotics can also bring.
I know from experience that not knowing how to deal with these things is very stressful but perhaps if you can talk to 2 or 3 different consultants in thoracic medicine this may put your mind at rest about the course of action to take. I've found the best way is to turn up with lots of question,s perhaps gained from posts here, and ask if those methods are good options, and if not why not, and if yes why yes. I wish you the best
Hello
Sorry to hear of your bad news.
I gave up on antibiotics because my Bronchiectasis did not respond to them and also they gave me was oral thrush. Today I take no treatment fro my illness and I know that my condition is having a serious impact on my lungs. I wouldn’t recommend what I am doing but its my body and my choice.
I have been using CBD tablets (35mg) for my Bronchiectasis ... with phenomenal results that seem to profoundly reduce the amount of phlegm in my lungs. I feel very fortunate that this has helped. I take two to three tablets daily.
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