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I had absolutely no symptoms except for coughing up blood one night, but that was because I had gotten pneumonia with the mac. I do not believe it's a good idea to put off treatment. I certainly wouldn't want to take the chance that it is going to get worse. I took a 2 drug regiment instead of all 3. I took azithromycin, and ethambutol. I had no issues at all with getting sick or having any other issues because of the antibiotics. I started taking antibiotic 6 months ago, then taking the nebulizer airikayce about 3 months ago and my Mac is completely resolved now. I had a very large cavity which has collapsed or closed. So the antibiotics definitely worked.
I don't think it's a good idea to put off treatment. I think that most people have to do it sooner or later and why let the infection get worse and destroy your lungs even more instead of taking the antibiotics and doing what you can to get rid of it?!
Some people say that the antibiotic regiment is really hard on the body, and it might be if you do all three. But there is studies now that are looking at people that only take two of the antibiotics. I would ask your doctor to start you off on 2 and see if there is an improvement in 3 months. Like I said, I started 6 months ago on the antibiotics and within 3 months there was such an improvement and after 6 completely gone. I'm going to keep taking the antibiotics and doing the nebulizer for a while because Mac is tricky and likes to hide!!
Good luck!
Replies to "I had absolutely no symptoms except for coughing up blood one night, but that was because..."
You are very lucky to have gotten rid of MAC so soon and without any side effects. I have been on Big 3 for one year now and have suffered terrible stomach issues and diarrhea lasting for a few months no matter at what times I took the drugs or with food/no food. Now I am having debilitating body aches which everyone tells me is sciatica, but I have had sciatica before, and that pain can't be compared. Also, my tinnitus has gotten worse and if you ever experienced tinnitus, you would know that it's a debilitating condition where you can have a high pitch sound ringing in your ear nonstop and when it gets really bad no noise machine can mask it to help you sleep. Also, my eyesight is getting worse, though very slowly. It is such a blessing to knock MAC off so well and quick, but unfortunately the MAC experience is very different for different people. When people and doctors tell me, stay on the drugs, which I am now supposed to take 7x a week, I just don't see it being worth it. The only things that really makes me feel better are nebulizing 7pc saline and the vest. I am only 49 years old.
I agree with beginning treatment as soon as possible to avoid progression and eliminate the infection and progressive lung damage.
I was +2 smear positive and MAC culture +3 when diagnosed. I enrolled in a clinical trial with Clofazimine for 6 months with no improvement.
I switched to Azithromycin and Ethambutol 3 times weekly, and in 2.5 months, I was sputum negative with only a few colonies of MAC.
I await the cultures for months 5 and 6, and my doctor has recommended nebulized liposomal Arikayce be added to ensure elimination. She also said that patients who add Arikayce remain MAC free longer after treatment ends. I begin that within 2 weeks.
My doctor also told me that, instead of having to wait until being on the standard drugs for 6 months before being allowed to start Arikayce, it’s success rate has led to it being a standard part of drug treatment from day one soon. I don’t know when that will be.
It seems that the Rifampin actually lowers the level of Azithromycin. I have also read that it is responsible for so many feeling so badly on the drug regimine.
The Arikayce wipes out the MAC sooner, when combined with the Azithromycin and Ethambutol. That may mean a shorter treatment time and longer remission.
This is wonderful and promising news for patients. Progress is being made. Do what you can to protect your lungs from damage. By the time you have symptoms, it may be more difficult to treat.
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Thanks very much for telling me about what you have gone through. I had heard that the doctors sometimes do just two anti-biotics for some people. I have no symptoms, so I'm not sure what my dr. will say the next time I see him to get the broncoscopy results. I'm glad you have been helped! Thanks again.