Has anyone been on Linezolid for MAC?
I have been on Azithromycin, Ethambutol & Rifampin for 8 months and Arikayce for 7 months. So far I still test positive for MAC so my id doctor referred me to another doctor who is able to get other medications. I saw him today and he wants me to start Linezolid. Has anyone had experience with this antibiotic and if so, was it effective for you?
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@tte my susceptibility test came back resistant to Linezolid but my first ID Dr said the MAC would respond anyway. Was on it a short time due to dropping platelets
@mjb24 Are you only taking one antibiotic for your diagnosis? My ID says I need to take 3 at the same time. At my next appt in January we are going to discuss my quality of life since the side effects of the antibiotics.
Wishing you well!
@janetannfaust The 3 drug treatment is standard protocol for MAC. I am on Azithromycin, Ethambutol, Clofazimine and Arikayce. I was taking Rifampin but my ID doc changed it out to Clofazimine because susceptibility testing was borderline and after 15 months, sputum cultures are still positive.
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Hi, I have neuropathy in my toes and feet due to Linezolid. Stopped the drug on December 8, 2025. How are you dealing with the neuropathy? It is painful all day especially at night. What treatnent are you using? Thanks. Take care.
The evil linezolid got me around 2 years ago. The pins and needles was very close to unbearable. I slept in socks because I couldn't stand the sheets touching my feet and the shower felt like someone driving pins and needles into my feet. I did not want to go on pain killers which is what a neurologist would have done. I saw a chiropractor. I don't know the exact name of the the treatment but it involved the Rebuilder (electrical current up one leg and down the other and infrared light treatment). And a huge amount of supplements. That cost me $6,000 right off the bat and replacing the supplements was very expensive. The pins and needles went away and I was left with numbness from the knees down when some other health problems attacked me. Just recently I could tell the numbness was getting worse. I was told about New Promise Neuropathy which Medicare covers. I've had around 15 treatments there and will be reevaluated on the 31st of this month. It involves electrical stimulus from the knees down and two shots in each knee at every treatment. Also super b supplement, alpha lipoic acid, and vitamin d. Since Medicare is paying I have nothing to lose, and if I do nothing I can see a wheelchair in my future. I can tell that there is some change going on (still very numb from the knees down) but this will be a very long process. During my initial evaluation the doc used the term dead nerves instead of damaged nerves. New Promise Neuropathy may just be located in Texas. Oh....I couldn't use the Rebuilder any more because of a heart attack and having a pacemaker installed. The cardio doc said no electrical current that close to the pacemaker. This is the most frustrating thing I've encountered so far in my life. I was a gym rat and now I'm practically a cripple. But, I'm not giving up!!!! I'll be praying for you!
PS" ID docs dealing with high powered antibiotics have got to be aware of side effects!! I was complaining to the doc. I did my own research but too late. Stopped the drug, told the doc good bye!
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