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Anyone taking Linezolid? 3 times per week?

MAC & Bronchiectasis | Last Active: Jun 3 5:01pm | Replies (8)

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@kathyjjb

Do you have MAC or Abscesses? The only 2 that came up that weren't resistant were: Amakacin and Linezolid. But this was misleading, since they didn't test for everything at a local level. NKH found a few others that I could use. Same thing true to in US, as in Canada. There are few cutting edge experts out there. Depending on future CT scans, I may be going back on Linezolid? But 2700 mg per week (it may be that low depending on blood test results) is a lot less toxic than 8400 mg/week.
Also, the Arikayce was disgusting and they had me try inhaled IV Amakacin which is a lot easier to inhale. I hope you can find someone in Toronto. FYI: I knew NJH was my best bet, so I made arrangements to be seen without a referral. I have a PPO, so I didn't need a referral. My ID doctor was very supportive, and she also sent over a referral. It wouldn't hurt that you do some research as to where to go and pass it on to your doctor. If your dr isn't supportive. I highly recommend you find another doctor. Good luck! Kathy

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Replies to "Do you have MAC or Abscesses? The only 2 that came up that weren't resistant were:..."

I have mycobacterium abscessus subspecies abscessus, so not MAC. Mine is also the hardest to treat and it is macrolide resistant, so no azithromycin or clarithromycin. The Canadian healthcare system works differently from down there. It takes jumping through bureaucratic hoops to get out-of-province care. I am hoping to talk to a fellow patient in Toronto tomorrow to see if she has any advice. The top NTM doc in Canada is in Toronto. She treats about 30 cases a year of my species. In a city of many millions. Best of luck to you too. I hope they find a treatment that is effective and doesn't cause you any more misery.