Has anyone ever been diagnosed with Mycobacterium?

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My sputum culture appears to be growing MAC, a mycobacteria and I AM VERY WORRIED. I know that is a bad diagnosis and difficult to treat. HAVE any of you bx friends ever had this?

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  • Posted

    Hi there

    This I believe is tuberculosis which is successfully treat with a long course of anti biotics. Have you been advised that this is the treatment for mycobactrium?

    Try not to worry I'm sure you will be ok once you started treatment.

    Take Care

    Rachel

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  • Posted

    Hi Robyn:

    I had a bronchoscopy in July and my pulmonologist told me recently that the result show the presence of micobacterium avium. The treatment would be two antibiotics for a long time, maybe a year or more, with uncertain outcome. We decided to hold off for the time being since I do not have any of the symptoms, except for rapid weight loss. I am glad you reached out since I have been worried about this also. It sounds like a dreadful infection. I have had Bx for about 20 years and have had infections with pseudonomas of and on. Currently I am only on nebulized sodium chloride but shortness of breath is more and more of a problem. I am curious to see if anyone else in the group has familiarity with MAC.

    Louise

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    • Posted

      Louise, thank you for your response. This mycobacteria showed up about 3 years ago but they said to wait due to the side affects of the treatment. I WAS THRILLED when the next culture was negative and I THOUGHT i could forget about it. Now, after a bad cold, the sputum shows MAC IS sudpicious but they wont know for 4 more weeks for sure. IM dreading the treatment as it sounds worse than the bug!

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  • Posted

    Yes, I had it show up in tests. I was given the wrong treatments and went 15 years with walking pneumonia. I will spare you the details but I did lots of holistic things to keep myself alive, plus intermittent antibiotics that only relieved the symptoms when I was on them. I didn’t have insurance.

    Finally I was able to go to a pulmonary specialist who took one look at the ct scans and said it looks like MAC. Then after looking at the results of sputum tests I had done previously, it said it right there! The doctors who had ordered the tests, plus a doctor I had been to since, had totally overlooked this.

    Then, instead of just treating me or or ordering another sputum test which would have been very easy to do as I was coughing up bucketfulls every day, he sends me for a bronchoscopy (where they stick a probe down into your lungs. Anyway, the endoscope/bronchoscope they used hadn’t been cleaned properly (which is quite common!) and gave me a pseudonoma infection which practically killed me. They put me in the hospital on intravenous Levaquin, followed by lots of heavy duty antibiotics afterward (Rifampin and some other stuff).

    Well, trying to make a long story short, this seemed to the trick, except that I got another mycobacterium infection (this is a stranger than fiction occurrence that happened from picking up a friend who had been out of the country and came back sick with it.)

    Anyway, what I want to say is intravenous Levaquin – not oral, no matter what they say, it will only halfway do the job- worked for me. I was on it for about 5 days (twice) in the hospital. No MAC or other mycobacterium has shown up since. Unfortunately, my lungs have been compromised by all the years untreated, plus they did a, imo, totally unnecessary surgery on my lungs and took tissue out.

    Warning – if they prescribe Clarithromycin (Biaxin), beware it can cause hearing loss.

    Big warning on Levaquin (Levofloxacin). While it is effective, it can rupture tendons, particularly in the ankle. Just be careful walking and don’t do anything strenuous for as much as 3 months (or more) after taking it. I add this, because as I’m sure most have you have noticed by now, doctors don’t discuss side effects. Actually, no matter what they tell you, check with a pharmacist as they know much more about side effects.

    Hope this helps.

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    • Posted

      SABRA, im so sorry for your nightmare!!! SO are you saying LEVOQUIN Iv alone, cured your MAC? THEY are talking 3-4 different antibiotics for 1-2 years and then still no guarantee!

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    • Posted

      Hi Robyn,

      After leaving the hospital the first time, they had me taking Rifampin, Ethambutol and Clarithromycin and also Levofloxacin (Levaquin) by mouth. We stopped the Levofloxacin within the first week and the R and E after about 3 months. I continued the Clarithromycin for 10 months until I started having reactions to it in my mouth. So I can't say for sure that the MAC was gone after just the L, but I have a pretty strong belief that it was.

      I came to this conclusion after getting sick again with a different mycobacterium, taking L by mouth, getting -mostly well- but continuing to be sick on and off with lots of mucus for another 2 years. Then I caught some weird thing my little grandson brought home from daycare, which put me in the hospital on IV Levoquin for about 4 days. After being released they prescribed L, but after a couple of days of taking it, the fingers on my right hand were getting numb, so I stopped taking it and have been basically well (except for some clear mucus that gathers in my lungs and less breathing capacity then I used to have years ago) ever since – about a year and a half.

      I personally believe that if I’d been given IV Levaquin in the first place all those years ago, I’d have been fine.

      My plan is to write a book about this… at some point. I mean, I feel I should but am finding it hard to get motivated plus find the time.

      Good luck with your doctor(s) Robyn (follow your gut, try not to let them push you around too much). I'd be interested to know how this turns out for you.

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