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Clofazimine for MAC: Anyone have experience with this drug?
MAC & Bronchiectasis | Last Active: Oct 13, 2023 | Replies (60)Comment receiving replies
For years I had this. I would get antibiotics. Get better and it would come back. Finally a young intern sent me for a scope were they take a sample in your lungs. They grew that and found mac. Then i had a ct scan and we could see the two spots. I get one every year and nothing has gotten worse. Sputum never shows a thing because I am anti biotics all the time. Not sure what will happen when arithromycin doesn't work. I did do the big three when they first found it.
Problem I found was by the time u get to see someone and get on somthing and it doesn't work and u go back. It has really go ahold. It has gotten worse over the years or the drug is less effective . We are what we eat. My body ph is on the acidic site. That is not good. I have been working to get it alkline but the antibiotics keep it acidic. Drs are fixing the problem after we have made the problem by eating bad food. Sugar ,dairy and meat are all acid forming. Our body is smart it does everthing it can to stay alive but we keep feeding it junk. I will beat this mac and get off the antibiotics. If u are intrest read Dr Robert Morse N.D. book The Detox Miracle Source Book on amazon. It is very informative and so true. Garry
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If you still have NTM or MAC, it will show in a complete sputum culture no matter what antibiotic you are taking, but it may not show in an AFB (acid fast bacteria) slide sample (grown in 1-2 days) as is typically done in the local clinic or hospital lab. That is because mycobacteria are VERY slow growing, and the correct treatment takes time to select.
An AFB test missed my MAC and Pseudomonas completely. But a culture grown on on culture medium showed Pseudomonas after 7 days and MAC showed after 14 days. Then it took another 4 weeks to determine which antibiotics I needed to take for the MAC.
If they are doing a full culture at an experienced lab and showing no infection the possibilities are -
No infection
Not an adequate specimen (more saliva than sputum)
No sputum and a bronchoscopy is needed to get the sample.
If you are concerned about the spot on your lungs being active NTM, a bronchoscopy is the way to go, with the sample being cultured in a specialized lab and the results being reviewed by a pulmonologist or infectious disease specialist interpreting the results. This is beyond the scope of practice for most primary providers.
When you say you "can feel the spots again", how would you describe the sensation?
With Bronchiectasis, I often get a heavy, uncomfortable feeling. It generally means I have not been doing a good enough job of coughing up the mucus after nebbing, or I need to use my rescue inhaler to open up my lungs.
Have you ever tried increasing your airway clearance efforts when you get "that feeling?"
Sue