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Post-exertional fatigue in MAC Lung Disease

Home Forums NTM Support Forum Post-exertional fatigue in MAC Lung Disease

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  • #34644
    Mpregmpreg
    Participant

    Hi all,
    would be very grateful for any advice/your experience regarding the following issue:
    I am 27yrs, male, used to be physically very active and quite healthy.
    since an initial infection that caused bronchitis (1.5 years ago), I have been having chronic health issues that were especially pronounced after physical exertion (i.e. exercising). These include:
    – strong fatigue
    – headache and inability to focus on mental tasks
    – stinging pain in my chest/lungs (wandering, different locations)
    – difficulty breathing (breath hunger)

    I have had two bronchoalveolar lavages. The first one showed M. kansasii and the second one showed M. intracellulare.
    Two CAT scans (about 4 months apart) have NOT shown much destruction in my lungs:
    – Some small nodules that are unspecific (i.e. do not necessarily come from NTM)
    – No bronchiectasis or cavities

    Since I am considering treatment, the big question is: “Are my symptoms caused by NTM or is it something else (e.g. chronic fatigue syndrome)?”
    My two doctors (both experienced in NTM) contradict each other – one suggest treatment; the other one thinks that NTM is not responsible for my symptoms and likely inactive.

    fatigue, chest pain, and difficulty breathing are frequently mentioned as symptoms of NTM.
    However, many people report that exercise actually makes their symptoms better. This is not true for me. When I don’t exercise at all (i.e. not more than easy walks) for multiple days in a row, then I actually feel pretty normal.
    When I do exercise (e.g. easy running for 30 min, easy rock climbing), then my symptoms worsen significantly (see list above) and last for multiple days.
    Additionally, my lung function is at about 100%.

    My main questions to you are: “How does exercise affect your symptoms?” and “Can you relate to the post-exertional fatigue that I described?”
    However, I would of course greatly appreciate any relevant input.

    #34809
    Roxanne WiseRoxanne Wise
    Participant

    Dear MPREG:

    I just read your post. I was diagnosed with mycobacterium avium complex intracellulare in 2012 and treated for 2 years with ethambutol, rifampin, azithromycin. Post treatment I have asthma like symptoms. However, addressing your concerns I would have to ask if your docs did a biopsy on the nodules? I was misdiagnosed for two years prior to having a bronchoscopy done. These types of bacteria are opportunistic and form protective colonies of biofilms that protect them from the immune system and antibiotic treatment. If all the bacteria were planktonic and free floating our immune systems could probably take are of them rather quickly.

    You have two docs that contradict each other. That’s crazy. Get a biopsy done on those nodules. If it is a MAC infection then sooner is going to be better than later.

    I have since learned there are natural ways to supplement the antibiotic treatment. I wish I knew then what I know now. I also wish my so-called specialists was more adept at treating this than 2 years of antibiotics and scans every 3 months! Nice guy but he wasn’t very proactive in treatment. He’s retired now.

    I am surprised that during the bronchoalveolar lavages they didn’t do a biopsy.

    Let me know how you are getting along.

    #34879
    Mpregmpreg
    Participant

    Dear Roxanne,

    thank you very much for your response.

    By now, I am into treatment about 3 months. I am on Rifampin, Ethambuthol and Azythromicin three days a week. My doctor chose the 3 day regimen because he says it is only a mild infection.
    So far, I can’t really say that there is any improvement of any of my symptoms. I am wondering if this stuff just takes a while to work or if I am simply treating the wrong condition.

    To answer your question: no, a biopsy was not done as it was deemed irrelevant by the doctor performing the bronchoscopy. Are you suggesting that a biopsy could give information on whether the bacteria are planktonic or in the form of a biofilm?

    It’s great that you have found some natural supplements. Would you be willing to share which these are?

    Best
    Michael

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