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I, too, was dismayed at Pulmonologist and infectious disease. Doc recommendations to wait and watch. I’m going to New York City doctors who are in rolled and running centers of excellence for Bronchiectasis treatment and MAC. I went for a second pulmonary opinion to the actual head of research and same discussions same Recommendation. I did not understand it I pleaded for a little better understanding of why. I said I have physician relatives who will not understand why my doctors are delaying treatment. This second opinion doc said tell them “you are treating. The things you’re already doing airway clearance , looking into GERDS precautions, daily exercise and doing all you can to avoid further infection… These are the first line of treatment.“ This moment in time, it is literally true that the treatment is worse than the disease. In my case. Very slight Bronchiectasis. Also, in about a year this very successful trial drug will likely become available and it will be very helpful in delaying lung damage. DPP-1 Inhibitor Brensocatib in Bronchiectasis.
Replies to "I, too, was dismayed at Pulmonologist and infectious disease. Doc recommendations to wait and watch. I’m..."
Your second doc is correct. In less severe stages, "wait and watch" when combined with airway clearance and other precautions IS a form of treatment.
By the way, these actions can in fact help you convert to "negative" for MAC in some cases. Or keep the numbers and location of the bacteria limited and contained for a long period so that the 3-antibiotic regimen is never needed.
Here is a very good, if somewhat long, video about this from National Jewish Health, recorded just this year.
https://www.youtube.com/watch?v=bcvHKHzi4Q0&t=1388s
I hope you can manage to stay healthy with preventive measures!
Sue
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It is unbelievable that they would make anyone wait to get treatment with this. What would be the point of that? Either it's going to stay the same or it's going to get worse. I don't think this clears up on its own. I suppose it could, but what are the chances? Especially if you have other things like GERD, I have read before that a lot of doctors take that wait and watch approach. I read on the American lung association website that they want to see if the disease is going to progress. Well, I think they can count on that eventually. When you see something that's wrong, you fix it. I would demand the I'm put on something to be really honest. If there's anyone this is happening too, you should doctor shop until you find someone that's going to treat you. Sometimes we have to advocate for ourselves to get what we want. It shouldn't be the case. If you're diagnosed with something that's treatable. There are some people that don't want to take the antibiotics because they don't want the side effects. I've only been on only 2 antibiotics and they're doing studies now to see if 2 antibiotics will work about the same as being on all 3 antibiotics. I recommend to people that they start off on 2 antibiotics and to use the Rifampin if the 2 others aren't working on their own. I think that is the drug that causes the most harm to people and the most side effects. I could be wrong but I've been on azithromycin and ethambutol with virtually no side effects and I take it in the morning on an empty stomach. I only started taking airikayce 3 months ago and at that time I still had a full-blown cavity, but it had cleared up all around the cavity and the walls had become really thin. After adding airikayce and continuing the two drug regiment. I am completely cleared now, it has completely resolved. Although the doctor is going to keep me on the antibiotics for another 6 months and watch and make sure nothing comes back. I know there's people with a lot of problems with all three of these antibiotics but I recommend to those people to talk to your doctor and to just start off on two and see how that goes and then definitely add the antibiotic nebulizing treatment if possible. I know for people that can't afford it you can apply for financial help through them and they will pay for
almost all of it.😀 Thanks for your post above! More people need to know that they don't need to go along with the wait and watch approach. I don't think it's in anyone's best interest.