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MAI (mycobacterium avium-intracellulare)

Home Forums NTM Support Forum MAI (mycobacterium avium-intracellulare)

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  • #18081
    Lisa83nc03lisa83nc03
    Member

    Hello my name lisa,I'm 34 years old and live in North Carolina.I was diagnose with MAI (mycobacterium avium-intracellulare) Oct.10.2017 after passing out for 3 weeks and ended up at Duke Hos.When i was at duke the tough i had Tb so i was quarantine for 2 weeks.well when the test came back it was MAI i was sent home and told to return to see NEELIMA NAVULURI, MD Asthma Allergy & Airway Center..I started treatment in Nov,2017,, Now i'm on azithromycin 250 MG,ethambutol 800mg and rifAMPin 600 mg..The doctors really aint told me much about what MAI is all i know is i got to be on Medications for 2 years.I had another ct scan in January that shows
    Evolving and growing cavitary consolidation, centrilobular nodules, and groundglass opacities in the left upper lobe. There are a new areas of involvement in the lingula and left lower lobe..I guess my questions is do the medication really helps,(because it still spreading) How do people handle been on the medication?(I hate it)When i try to ask my doctor all she will tell be is you will be ok..Sorry for this long message i'm just scared and dont have any info about it..

    #18082
    Macivormacivor
    Member

    Hi Lisa,
    It is scary when it's all new, like it is for you. Maybe there are support groups in your area. I think this forum lists some in the US. You can actually join any because most communicate with email, not face to face. Sometimes a support group can answer lots of questions and share lots of experiences. But remember, everyone has a different course.

    The antibiotics take a long time to work and you might ask your dr. how your condition will be monitored to see if they're working. She might want more sputum samples and CT scans. You might ask her how long you will be on the antibiotics before it would decided to make a change, if improvement wasn't happening. It is a long haul. Thank goodness you have discovered what is going on, sooner rather than later, so it can be treated appropriately.

    Wishing you the very best!!

    #18083
    Lisa83nc03lisa83nc03
    Member

    Thank you

    #18084
    Albedoalbedo
    Participant

    Hi Lisa, I agree with Macivor post and wish you good luck. The treatment is heavy but effective. With monitoring I would also ask about hygiene measurements such as hyper-saline inhalations and exercise which I learned are very important too. Again best wishes, you are young and will make it!
    https://ntminfo.org/patients/support/online-support-forum/default-topic/1974-integrative-therapy-for-ntm#p15996

    #34048
    Mimiwmimiw
    Participant

    Hi Lisa, I was diagnosed with the same in 2013.I was also put on the same 3 antibiotics for 18 months. The life cycle of the bacteria is about 18 months, I understand, and only the ‘babies’ are susceptible to the drugs, so they kill them all off. I was very sick, surgery was suggested and IV antibiotics. I was terrified, too. But after5 or 6 months I was much better and as awful as the drugs are, I stuck with them, as you must.
    Another forum which has MUCH more information than this one, and is easier to navigate is inspire.com. Check it out. I have learned an incredible amount through the members there. Information is empowering and comforting. Best wishes to you.

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