Has anyone been on Linezolid for MAC?

Posted by Mary @mjb24, Mar 4, 2025

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?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for tte @tte

@mjb24 , My sensitivity shows resistant to linezolid so it won't help me. Good luck to you.

Jump to this post

@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

REPLY
Profile picture for Mary @mjb24

@janetannfaust My ID doctor had mentioned putting me on Linezolid but never did, so I never did take it. He started me on Nuzyra but that made me very nauseous so I took it for only about 2 weeks. He was able to get me on Clofazimine and so far I have no side effects with that. Wishing you well!

Jump to this post

@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!

REPLY

@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.

REPLY
Profile picture for mpowers @mpowers501

"Linezolid, an antibiotic used to treat drug-resistant bacteria, can cause peripheral neuropathy and optic neuropathy. These adverse effects can occur after taking linezolid for longer than the recommended 28 days. "

If you're on it question your doctor on his/her knowledge of possible side effects.. My doctor was oblivious to the more serious side effects and I'm paying the price. I was kept on Linezolid for over 100 days. I was even complaining to her about something going on with my feet. I did my own research too late, and I'm the one who stopped the med, not the doc. I am numb from the knees down...my life activities have been altered for the rest of my life. I'm considering a medical malpractice case.

Jump to this post

@mpowers501
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.

REPLY
Profile picture for janetannfaust @janetannfaust

@mpowers501
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.

Jump to this post

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!

REPLY
Please sign in or register to post a reply.